Comprehensive Clinical Psychology [Volume 8]

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Comprehensive Clinical Psychology

Comprehensive Clinical Psychology. Volume 8 Copyright © 2000 Elsevier Science Ltd. All rights reserved. Editors-in-Chief: Alan S. Bellack and Michel Hersen Table of Contents Volume 8: Health Psychology Close Preface Contributors 8.01 Health Behavior, Pages 1-37, Mark Conner Paul Norman SummaryPlus | Chapter | PDF (471 K) 8.02 Psychophysiological Bases of Disease, Pages 39-78, Andrew Steptoe SummaryPlus | Chapter | PDF (497 K) 8.03 Health Care, Pages 79-112, John Weinman SummaryPlus | Chapter | PDF (489 K) 8.04 Assessment and Measurement Issues, Pages 113-135, Marie Johnston and Derek W. Johnston SummaryPlus | Chapter | PDF (376 K) 8.05 Design Issues for Clinical Research in Health Psychology, Pages 137-151, Carolyn E. Schwartz SummaryPlus | Chapter | PDF (356 K) 8.06 Consultancy, Pages 153-169, Susan Michie SummaryPlus | Chapter | PDF (330 K) 8.07 Teaching and Training Other Health Disciplines, Pages 171-187, Helen R. Winefield SummaryPlus | Chapter | PDF (338 K) 8.08 Cardiovascular Disorders, Pages 189-216, David S. Krantz and Nicole R. Lundgren SummaryPlus | Chapter | PDF (413 K) 8.09 Cancer, Pages 217-236, Barbara L. Andersen and Deanna M. Golden-Kreutz SummaryPlus | Chapter | PDF (359 K) 8.10 HIV and AIDS, Pages 237-275, Michael H. Antoni and Neil Schneiderman SummaryPlus | Chapter | PDF (502 K)

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8.11 Diabetes Mellitus, Pages 277-304, Clare Bradley, Afsane Riazi and Shalleen Barendse Mary B. Pierce Christel Hendrieckx SummaryPlus | Chapter | PDF (418 K) 8.12 Functional Bowel Disorders, Pages 305-319, Shannon M. Turner SummaryPlus | Chapter | PDF (323 K) 8.13 Psychological Aspects of End-stage Renal Disease, Pages 321-338, Alan J. Christensen and Patricia J. Moran SummaryPlus | Chapter | PDF (344 K) 8.14 Respiratory Disorders, Pages 339-359, Thomas L. Creer and Deirdre A. Levstek SummaryPlus | Chapter | PDF (366 K) 8.15 Gynecological Problems, Pages 361-382, Myra Hunter Anne Walker SummaryPlus | Chapter | PDF (357 K) 8.16 Reproductive and Obstetric Issues, Pages 383-407, Beth Alder SummaryPlus | Chapter | PDF (390 K) 8.17 Genetic Disorders, Pages 409-426, Heidi A. Hamann and Robert T. Croyle SummaryPlus | Chapter | PDF (344 K) 8.18 Arthritis, Pages 427-443, Julie H. Barlow SummaryPlus | Chapter | PDF (313 K) 8.19 Spinal Cord Injuries, Pages 445-462, Paul Kennedy SummaryPlus | Chapter | PDF (336 K) 8.20 Traumatic Brain Injury, Pages 463-486, Barbara A. Wilson SummaryPlus | Chapter | PDF (372 K) 8.21 Epilepsy, Pages 487-503, Gus A. Baker Ann Jacoby SummaryPlus | Chapter | PDF (311 K) 8.22 Sleep Disorders, Pages 505-527, Rachel Manber, Richard R Bootzin and Derek Loewy SummaryPlus | Chapter | PDF (377 K) 8.23 Headache, Pages 529-556, Paul R. Martin SummaryPlus | Chapter | PDF (406 K) 8.24 Chronic Pain, Pages 557-574, Shirley Pearce and Anne-Lise McDonald SummaryPlus | Chapter | PDF (322 K) 8.25 Visible Disfigurement, Pages 575-593, Nichola Rumsey SummaryPlus | Chapter | PDF (344 K)

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8.26 Dental Health, Pages 595-615, Gerry Kent SummaryPlus | Chapter | PDF (326 K) 8.27 Child Health Psychology, Pages 617-643, Christine Eiser and Nicky Main SummaryPlus | Chapter | PDF (406 K) 8.28 Tobacco Smoking, Pages 645-674, Martin J. Jarvis Gay Sutherland SummaryPlus | Chapter | PDF (411 K) 8.29 Health Promotion: Perspectives on Physical Activity and Weight Control, Pages 675689, Neville Owen and David Crawford SummaryPlus | Chapter | PDF (304 K)

Preface Volume 8 Clinical Health Psychology, Clinical Psychology, and Health Psychology This volume deals with clinical health psychology, a discipline characterized and distinguished by its overlaps with, and differences in emphasis from, other aspects of clinical psychology and health psychology. On the one hand it is distinguished from other aspects of clinical psychology by its focus on physical disease (Belar, 1997) rather than on conditions identified by their cognitive, emotional, and behavioral features. On the other hand, while sharing much of the discipline of health psychology, it tends to focus on people who already have health problems and places less emphasis on those aspects that deal with the primary prevention of disease. Neither of these distinctions is hard and fast and there are clear areas of overlap. Patients with phobic avoidance of hypodermic needles would be equally likely to see a clinical psychologist who specialized in mental health problems or a clinical health psychologist. Group treatments for smoking might be run by a health psychologist or a clinical health psychologist. Since this is a volume on clinical health psychology, the emphasis is on the clinical aspects of physical health problems, with only a few chapters dealing with the public health agenda of primary prevention of disease in healthy people. Clinical health psychology and nonclinical health psychology share the aim of using the methods, models, and interventions of psychology to achieve better scientific understanding and more effective interventions in health problems and health care. In addition to using the basic discipline of psychology, they depend on, and are informed by, the practices, measurement approaches, and basic sciences of both clinical and public health medicine. Thus, clinical health psychology uses the methods and findings of disciplines such as physiology, biochemistry, and epidemiology. Both clinical and nonclinical health psychology interface with multidisciplinary groupings such as behavioral and psychosomatic medicine. Clinical Groups, Psychological Constructs, and Psychological Methods

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Clinical health psychologists typically describe their work in terms of (i) the clinical group or health problem they work with, (ii) the psychological constructs they are using, and (iii) the methods they are adopting. So the clinical group may be described as, for example, cardiac, renal, asthmatic; the construct may be, for example, cognitive representations, personality, social support, adherence; and the methods can include assessment, prediction, or intervention. A glance at the titles of articles in the main journals such as Health Psychology, Psychology and Health, British Journal of Health Psychology or journals in other languages usually incorporate these three elements. Books on health psychology, other than general texts or collections of papers, tend to focus on a single theoretical construct such as personality (Friedman, 1990), personal control (Steptoe & Appels, 1989), coping (Burish & Bradley, 1983), or mental representations (Petrie & Weinman, 1997), or they may focus on a clinical or demographic group, for example, children (Melamed, Mathews, Routh, & Stabler, 1988), women (Niven & Carroll, 1993), people with diabetes (McGee & Bradley, 1994), people having medical procedures (Johnston & Wallace, 1990), or gynecological problems (Broome & Wallace, 1984). We have chosen to use health problems as the main organizing structure for this volume, largely because we believe that this will be most useful to the practicing clinical health psychologist. Given that the nature of the health problem or the physiological system affected is the main organizing feature of clinical establishments, patients' problems and clinical referrals to a psychologist are likely to match this type of structure and a clinical health psychologist new to a clinical area will find relevant material most readily in this way. However, there are dangers in this type of organization, most obviously that the higher order constructs and methods of application that are relevant to all health problems are addressed in a cursory or repetitive manner. A psychologist working with a new health problem or one that is not addressed here might be unable to extract the relevant constructs, models, and methods from chapters on other diseases. We have therefore included three chapters, which develop the conceptual framework, and four others which address practical application. Conceptual Frameworks The three conceptual framework chapters address the main theoretical models currently used in investigation, explanation, and intervention. The first by Conner and Norman deals with Health Behavior, the behaviors that enhance or diminish our health or which we undertake with those intentions. The main models derive from the social cognition models of social psychology and have been applied to health behaviors. While critical of these models, the authors point out the relative merits of the main models and provide insights into their application. Their main application is in primary prevention but they are equally applicable, and are increasingly being used, in secondary or tertiary prevention, for example, in dealing with diets for people with diabetes or other health complaints. The second theoretical chapter by Steptoe examines the Psychophysiological Bases of Disease, capitalizing on work from human and animal psychophysiology or psychobiology laboratories and from real life studies, especially of stress. Clinical psychologists can readily see the impact of physical disease on psychological functioning and have had good models to guide explanation and

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intervention for many decades. By contrast, the most convincing evidence to support the widely held belief that psychological factors can directly influence pathophysiological mechanisms is more recent and has been dependent on biomedical technology and discovery as much as on developments in psychology. The third theoretical chapter by Weinman addresses the theoretical frameworks that have been used in examining the process of health care. It draws upon a wide range of background disciplines ranging from basic perception in the understanding of the response to symptoms, including pain, to the study of interpersonal processes, including social skills training, in examining the behavior of health professionals in their interactions with patients. Conceptual frameworks relevant to the response to illness are represented in the chapters on health problems. A wide diversity of frameworks has been used, explicitly and implicitly, and different theoretical approaches adopted in different clinical areas. Practical Applications: Methodological and Professional Issues Turning now to the practical application chapters, two deal with specific methodological issues and two deal with professional practice issues. In the chapter on Assessment and Measurement Issues by Johnston and Johnston, the main measurement approaches are considered in relation to the type of question addressed by clinical health psychologists. Problems in measuring the basic constructs of health, illness, and health care are considered and current approaches reviewed. Health- and illnessrelated behavior and cognitions are frequently assessed as processes influencing health outcomes and heath outcomes are often assessed in terms of emotional and behavioral states. Clinical and laboratory measures and medical diagnostic techniques are also useful, but, like the psychological measures, give rise to measurement problems which need to be evaluated if these assessments are to be used effectively. Schwartz considers research designs for clinical interventions. Given the increasing emphasis on evidence-based clinical practice in health services with financial limitations, it is imperative that clinical health psychology evaluates its interventions. However, achieving the best possible research designs can be difficult in clinical settings where the commitment to care of the individual patient is as important as the achievement of good research. Schwartz outlines designs which are compatible with both objectives. These skills are relevant for the clinical health psychologist, not only in evaluating their own interventions, but also in advising other professions. Part of the professional role of clinical health psychologists is consultancy to other professions and as Michie points out this will frequently be concerned with the assessment and evaluation of psychological and behavioral aspects of clinical states and situations. In many clinical contexts, the psychologist will be the clinician with the strongest research training and the greatest ability to assess health outcomes when these are measured in terms of what people feel and do. They are also commonly the ones with most expertise in behavior change and may therefore be asked to advise or implement a program of change. This chapter alerts clinical health psychologists to the issues involved.

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Another common role is in the Teaching and Training of Other Health Disciplines (Winefield). A wide range of health professionals is taught some health psychology in all health services in industrialized countries. While there is diversity in the topics taught and the methods used, it is possible to derive a core body of topics which are central to most courses. Specific Health Problems In addition to these overarching methodological and professional practice issues, the authors of the 22 chapters addressing specific health problems (Chapters 8-29) were invited to address the issues relevant to their domain. Despite having this number of chapters, we recognize that some health problems are not represented, mainly because the problem is infrequent or because there is no coherent body of psychological work in the area. In each chapter on a specific health problem, the authors start by describing the conditions they are presenting before considering potential causes, consequences, and interventions. They were invited to cover the following topics: the conditions¯¯description of the condition, symptoms, epidemiology, etiology, course, prognosis, and medical treatment risk factors and prevention impact of the conditions on person and family psychological aspects of symptoms, medical diagnosis/tests/treatments specific issues of adherence psychological interventions to treat the condition psychological interventions to enhance coping/reduce emotional impact/reduce disability, increase quality of life lifespan, gender, and cultural issues professional issues Authors have interpreted these guidelines in various ways as some of these headings have limited applicability for some health problems or have barely been addressed for others. Nevertheless, these headings offer an outline of the areas a clinical health psychologist might wish to be familiar with for any health problem they deal with. A satisfactory level of knowledge of the condition is essential for communication with patient and health professionals, for identifying appropriate targets for intervention, and for choosing significant health problems to work on; conditions which are infrequent, have mild symptoms, a self-limiting course, a good prognosis, or satisfactory medical treatment may not be the best focus of the intervention efforts of a scarce profession such as clinical health psychology. For many conditions, some of the risk factors or causes are psychological or behavioral and therefore prevention is likely to be achieved by psychological methods. The impact on the family and on the patient of the symptoms, diagnosis, tests, and treatments indicates targets for psychological assessment and intervention. Psychological interventions have been applied to achieve better medical and clinical outcomes, including methods that enhance adherence to effective medical regimens. In addition, psychologists have worked to reduce the negative impact of these conditions on emotional states, disability, and quality of life.

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For some conditions there are specific lifespan, gender, and cultural issues. For example, diseases may affect people at different ages and stages in the lifespan. Genetic disorders (Hamman and Croyle) may be critical from the time of birth, while arthritic diseases (Barlow) are more common in older people. Patterns of mortality and morbidity are different for men and women, for people of different racial origins, and for people from different socioeconomic and educational groups (Adler et al., 1994). Finally we have given authors the opportunity to comment on any professional issues arising to complement the chapter on Consultancy. We anticipate that readers may have an interest in particular health problems which they will access via the index. But in addition, they may wish to be directed to health problems where specific issues have been particularly well developed. These chapters have been described as "health problems," but some deal with problems of risk rather than disease as such, for example, smoking (Jarvis and Sutherland), health promotion (Owen and Crawford), and address the problem of introducing a health focus for individuals not necessarily engaging health services. Other chapters provide good insights to the identification of risk factors for disease, especially psychological or behavioral risk factors for example, for cancer (Andersen and Golden-Kreutz) or cardiovascular disorders (Krantz and Lundgren) and these chapters also address the use of psychological methods of modifying both biological and behavioral/psychological risk factors. Some chapters are likely to be particularly helpful in providing information about the clinical conditions especially where there are multiple conditions subsumed under one medical specialty as in gynecology (Hunter and Walker), arthritis (Barlow), or respiratory disease (Creer and Levstek), or where the condition requires understanding of complex physiological processes, for example, the characterization of immune disease and the use of immune measures in outcome research as described for AIDS/HIV (Antoni and Schneiderman) may have relevance for other immune diseases. Conditions such as spinal cord injury (Kennedy) and traumatic brain injury (Wilson) are characterized by their sudden and traumatic onset. For some conditions, there has been a history of psychosomatic hypotheses, that is, the proposition that emotional or psychological states or traits determine the condition and its presentation; the chapters on functional bowel disease (Turner), sleep disorders (Manber, Bootzin, and Loewy), chronic pain (Pearce and McDonald), cardiovascular disease (Krantz and Lundgren), and headache (Martin) indicate how much more sophisticated current approaches are. The psychological impact of the disease and its treatment have been a major focus, for example, in end-stage renal disease (Christensen and Moran), epilepsy (Baker and Jacoby), cardiovascular disease (Krantz and Lundgren), and HIV/AIDS (Antoni and Schneiderman). In dental health (Kent), the role of phobic anxiety in determining whether people receive treatment or not has been a recurring theme. Adherence to medical regimens is a critical topic in a number of health problems including respiratory disease (Creer and Levstek), cancer (Andersen and Golden-Kreutz), and diabetes mellitus (Bradley, Riazi, Barendse, Pierce, and Hendrieckx). The impact of disease may be influenced by the wider social context which has particular relevance for visible disfigurement (Rumsey), genetic disorders (Hamann and Croyle), epilepsy (Baker and Jacoby), and for reproductive and obstetric issues (Alder); in each case, the social environment may critically influence the decisions that individuals and health professionals make about treatment and its objectives. Similarly, health problems may have different lifespan patterns of onset or impacts; these issues are addressed in the context of children (Eiser and Main) and more specific issues are considered for sleep disorders (Manber, Bootzin, and Loewy) and epilepsy (Baker and Jacoby). file:///D|/1/CCP/08/00.htm (7 of 12)17.10.06 11:09:02

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In sum this volume will provide the reader with an introduction to the theoretical background and conceptual frameworks for much of the work in clinical health psychology, followed by a discussion of issues relevant to methodological and professional issues in practical application. The chapters dealing with health-related problems range from problems relevant to health maintenance in healthy people, through chronic disabling conditions to those that are life threatening. They serve to illustrate the range of approaches taken by clinical health psychologists and the diversity of areas of application in this fast developing field. References Adler, N. E., Boyce, T., Chesney, M. A., Cohen, S., Folkman, S., Kahn, R. L., & Syme, S. L. (1994). Socioeconomic status and health: The challenge of the gradient. American Psychologist, 49, 15¯24. Belar, C. D. (1997). Clinical health psychology: A specialty for the 21st century. Health Psychology, 16, 411¯416. Broome, A., & Wallace, L. (Eds.) (1984). Psychology and gynaecological problems. London: Tavistock. Burish, T. G., & Bradley, L. A. (Eds.) (1983). Coping with chronic disease. New York: Academic Press. Eiser, C. (1990). Chronic childhood disease: An introduction to psychological theory and research. Cambridge, UK: Cambridge University Press. Friedman, H. S. (Ed.) (1990). Personality and disease. New York: Wiley. Johnston, M., & Wallace, L. (Eds.) (1990). Stress and medical procedures. Oxford, UK: Oxford University Press. McGee, H., & Bradley, C. (Eds.) (1994). Quality of life following renal failure. Chur, Switzerland: Harwood. Melamed, B. G., Mathews, K. A., Routh, D. K., & Stabler, B. (Eds.) (1988). Child health psychology. Hillsdale, NJ: Erlbaum. Niven, C., & Carroll, D. (Eds.) (1993). The health psychology of women. Chur, Switzerland: Harwood. Petrie, K. J., & Weinman, J. A. (Eds.) (1997). Perceptions of health and illness. Amsterdam: Harwood. Steptoe, A., & Appels, A. (Eds.) (1989). Stress, personal control and health. Chichester, UK: Wiley.

Volume 8 Contributors ALDER, B. (University of Dundee, UK) Reproductive and Obstetric Issues ANDERSEN, B. L. (Ohio State University, Columbus, OH, USA) *Cancer

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ANTONI, M. H. (University of Miami, Coral Gables, FL, USA) *HIV and AIDS BAKER, G. A. (Walton Hospital, Liverpool, UK) *Epilepsy BARENDSE, S. (Royal Holloway, University of London, UK) *Diabetes Mellitus BARLOW, J. H. (Coventry University, UK) Arthritis BOOTZIN, R. R. (University of Arizona, Tucson, AZ, USA) *Sleep Disorders BRADLEY, C. (Royal Holloway, University of London, UK) *Diabetes Mellitus CHRISTENSEN, A. J. (University of Iowa, Iowa City, IA, USA) *End-stage Renal Disease CONNER, M. (University of Leeds, UK) *Health Behavior CRAWFORD, D. (Deakin University, Melbourne, Vic, Australia) *Health Promotion: Perspectives on Physical Activity and Weight Control CREER, T. L. (Ohio University, Athens, OH, USA) *Respiratory Disorders CROYLE, R. T. (University of Utah, Salt Lake City, UT, USA) *Genetic Disorders EISER, C. (University of Exeter, UK) *Child Health Psychology GOLDEN-KREUTZ, D. M. (Ohio State University, Columbus, OH, USA) *Cancer HAMANN, H. A. (University of Utah, Salt Lake City, UT, USA *Genetic Disorders HENDRIECKX, C. (Vrije Universiteit Brussel, Brussels, Belgium) *Diabetes Mellitus file:///D|/1/CCP/08/00.htm (9 of 12)17.10.06 11:09:02

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HUNTER, M. (University College London, UK) *Gynecological Problems JACOBY, A. (University of Newcastle upon Tyne, UK) *Epilepsy JARVIS, M. J. (University College London Medical School, UK) *Tobacco Smoking JOHNSTON, D. W. (University of St. Andrews, UK) *Assessment and Measurement Issues JOHNSTON, M. (University of St. Andrews, UK) *Assessment and Measurement Issues KENNEDY, P. (Stoke Mandeville Hospital, Aylesbury, UK) Spinal Cord Injuries KENT, G. (University of Sheffield, UK) Dental Health KRANTZ, D. S. (Uniformed Services University of the Health Sciences, Bethesda, MD, USA) *Cardiovascular Disorders LEVSTEK, D. A. (Ohio University, Athens, OH, USA) *Respiratory Disorders LOEWY, D. (University of Arizona, Tucson, AZ, USA) *Sleep Disorders LUNDGREN, N. R. (Uniformed Services University of the Health Sciences, Bethesda, MD, USA) *Cardiovascular Disorders MAIN, N. (University of Exeter, UK) *Child Health Psychology MANBER, R. (University of Arizona, Tucson, AZ, USA) *Sleep Disorders MARTIN, P. R. (University of New England, Armidale, NSW, Australia) Headache McDONALD, A.-L. (University of East Anglia, Norwich, UK) *Chronic Pain file:///D|/1/CCP/08/00.htm (10 of 12)17.10.06 11:09:02

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MICHIE, S. (United Medical and Dental Schools of Guy’s and St. Thomas’s Hospitals, London, UK) Consultancy MORAN, P. J. (University of Iowa, Iowa City, IA, USA) *End-stage Renal Disease NORMAN, P. (University of Sheffield, UK) *Health Behavior OWEN, N. (Deakin University, Melbourne, Vic, Australia) *Health Promotion: Perspectives on Physical Activity and Weight Control PEARCE, S. (University of East Anglia, Norwich, UK *Chronic Pain PIERCE, M. B. (Charing Cross and Westminster Medical School, London, UK) *Diabetes Mellitus RIAZI, A. (Royal Holloway, University of London, UK) *Diabetes Mellitus RUMSEY, N. (University of the West of England, Bristol, UK) Visible Disfigurement SCHNEIDERMAN, N. (University of Miami, Coral Gables, FL, USA) *HIV and AIDS SCHWARTZ, C. E. (Frontier Science & Technology Research Foundation Inc., Chestnut Hill, and Harvard Medical School, Boston, MA, USA) Design Issues for Clinical Research in Health Psychology STEPTOE, A. (University of London, UK) Psychophysiological Bases of Disease SUTHERLAND, G. (Institute of Psychiatry, London, UK) *Tobacco Smoking TURNER, S. M. (Utah State University, Logan, UT, USA) Functional Bowel Disorders WALKER, A. (University of Aberdeen, UK) *Gynecological Problems

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WEINMAN, J. (United Medical and Dental Schools of Guy’s and St. Thomas’s Hospitals, London, UK) Health Care WILSON, B. A. (Medical Research Council—Applied Psychology Unit, Cambridge, UK) Traumatic Brain Injury WINEFIELD, H. R. (University of Adelaide, SA, Australia) Teaching and Training Other Health Disciplines

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.01 Health Behavior MARK CONNER University of Leeds, UK and PAUL NORMAN University of Sheffield, UK 8.01.1 INTRODUCTION

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8.01.2 KEY BEHAVIORS INFLUENCING HEALTH, MORBIDITY, AND MORTALITY

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8.01.2.1 8.01.2.2 8.01.2.3 8.01.2.4 8.01.2.5

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Introduction Smoking Diet Exercise Other Behaviors

8.01.3 UNDERSTANDING THE BASIS OF HEALTH BEHAVIOR

8.01.4 ENCOURAGING THE ADOPTION OF HEALTH BEHAVIORS

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8.01.4.1 Intervention Studies 8.01.5 LIMITATIONS AND EXTENSIONS OF EXISTING MODELS 8.01.5.1 8.01.5.2 8.01.5.3 8.01.5.4 8.01.5.5

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8.01.3.1 Introduction 8.01.3.2 Health Belief Model 8.01.3.2.1 Model description 8.01.3.2.2 Review of research 8.01.3.2.3 Commentary 8.01.3.3 Theory of Planned Behavior 8.01.3.3.1 Model description 8.01.3.3.2 Review of research 8.01.3.3.3 Commentary 8.01.3.4 Health Locus of Control 8.01.3.4.1 Model description 8.01.3.4.2 Review of research 8.01.3.4.3 Commentary 8.01.3.5 Protection Motivation Theory 8.01.3.5.1 Model description 8.01.3.5.2 Review of research 8.01.3.5.3 Commentary 8.01.3.6 Self-efficacy 8.01.3.6.1 Model description 8.01.3.6.2 Review of research 8.01.3.6.3 Commentary

Limitations of Current Models Additional Theoretical Constructs Processes by which Cognitions Influence Behavior Stage Models of Health Behavior Theoretical Integrations and Future Directions

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Health Behavior

8.01.6 CONCLUSIONS

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8.01.7 REFERENCES

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8.01.1 INTRODUCTION Interest in health behaviors is derived from two assumptions; that a substantial proportion of the mortality from the leading causes of death is attributable to the behavior of individuals, and that the behavior is modifiable (Stroebe & Stroebe, 1995). It is now widely recognized that individuals can influence their own health and well-being through the adoption of healthenhancing behaviors (e.g., exercise) and the avoidance of health-compromising behaviors (e.g., smoking). The identification of the factors which predict who engages in health behaviors has become a focus of research in health psychology and other health-related disciplines in recent years (e.g., Adler & Matthews, 1994; Conner & Norman, 1996a; Glanz, Lewis & Rimmer, 1990; Hockbaum & Lorig, 1992; Rodin & Salovey, 1989; Winett, 1985). The health behaviors examined have been many and varied; from health enhancing behaviors such as exercise and healthy eating, on the one hand, to avoidance of health harming behaviors such as smoking and excessive alcohol consumption, on the other. Each of these behaviors have immediate or long-term effects upon the individual's health and are to varying extents within the individual's control. Epidemiological studies reveal great variability in who performs these behaviors. The approaches taken to understanding such individual differences have been equally varied. One can classify these approaches into those which examine factors intrinsic to the individual (e.g., sociodemographic factors, personality, social support, cognitions) and those which examine factors extrinsic to the individual. This second group of approaches can be further divided into those based on incentive structures (e.g., taxing tobacco and alcohol, subsidizing sports facilities) and those based on legal restrictions (e.g., banning dangerous substances, financial penalties for not wearing seat-belts). The first approach (factors intrinsic to the individual) has received most attention from psychologists, with a particular focus on cognitive factors as the most important proximal determinants of behavior. A variety of models of how such cognitive factors produce various ªsocialº behaviors have been developed and are commonly referred to as social cognition models (SCMs). SCMs are recognized to have made a valuable contribution to the understanding of both who performs health behaviors (Conner &

Norman, 1996b; Marteau, 1989) and how extrinsic factors produce behavior change (e.g., Rutter & Quine, 1996). This chapter examines the key health behaviors and ways in which their adoption might be encouraged. The chapter then considers the contribution psychology has made to understanding and changing health behaviors through the development of SCMs. The most widely applied SCMs are described and reviewed along with recent developments and future prospects for this field of research. 8.01.2 KEY BEHAVIORS INFLUENCING HEALTH, MORBIDITY, AND MORTALITY 8.01.2.1 Introduction We might define health behavior as any activity taken for the purpose of preventing or detecting disease or for improving general wellbeing (Conner & Norman, 1996b). The behaviors within this definition include medical service usage (e.g., physician visits, vaccination, screening), compliance with medical regimens (e.g., dietary, diabetic, antihypertensive regimens), and self-directed health behaviors (e.g., diet, exercise, smoking, alcohol consumption). Numerous studies have examined the relationship between health behaviors and health outcomes (e.g., Black Report, 1988; Blane, Smith, & Bartley, 1990; Blaxter, 1990; Cox, Huppert, & Whichelow, 1993; Doll, Peto, Wheatley, Gray, & Sutherland, 1994; Gottlieb & Green, 1984). Such studies demonstrate the role of a variety of behaviors for both morbidity and mortality. One of the first such studies in Alameda County identified seven features of lifestyle: not smoking, moderate alcohol intake, sleeping 7±8 hours per night, exercising regularly, maintaining a desirable body weight, avoiding snacks, and eating breakfast regularly which together were associated with lower morbidity and higher subsequent long-term survival (Belloc, 1973; Belloc & Breslow, 1972; Breslow & Enstrom, 1980). Such results have been replicated in a variety of different populations (e.g., Brock, Haefner, & Noble, 1988; Metzner, Carman, & House, 1983). The impact of health behaviors upon individuals' quality of life, via delaying the onset of chronic disease and extending active life span, should also be noted (Fries, Green, & Levine, 1989; Stroebe & Stroebe, 1995). Smoking, alcohol consumption,

Key Behaviors Influencing Health, Morbidity, and Mortality diet, gaps in primary care services and low screening uptake are all significant determinants of poor health (Amler & Dull, 1987). Such findings have led to a focus by those interested in health promotion on changing such behaviors in order to improve health. For example, in the USA, Healthy People 2000 (USDHHS, 1990) lists increased physical activity, changes in nutrition and reductions in tobacco, alcohol, and drug use as important for health promotion and disease prevention. Below we examine several health behaviors in more detail, focusing on their prevalence and relationship to health outcomes. 8.01.2.2 Smoking Smoking is the behavior most closely linked with long-term negative health outcomes. Both morbidity and mortality from coronary heart disease (CHD) are increased among smokers (Doll et al., 1994; Friedman, Dales, & Ury, 1979). Moreover, there is a strong positive relationship between the number of cigarettes smoked per day and the incidence of CHD (Friedman et al., 1979). In addition, smoking has been linked to a number of cancers including cancer of the lung, throat, stomach, and bowel as well as a number of more immediate negative health effects such as reduced lung capacity and bronchitis (Royal College of Physicians, 1983). Despite the array of negative health outcomes, smokers often report positive mood effects from smoking and the use of smoking as a coping strategy (Graham, 1987). The number of people smoking in the USA and UK has shown a steady decline over the past 20 years. Data from the General Household Survey (1992) showed that 28% of people over the age of 16 smoke in the UK. Smoking is more common among men and among unskilled manual workers (General Household Survey, 1994). A similar pattern is evident in the USA, with smoking more common among less educated, lower income, and minority groups (Rigotti, 1989). Those who quit smoking reduce the risk to their health, particularly if they quit before 35 years of age (Doll et al., 1994). 8.01.2.3 Diet The impact of various aspects of diet upon health, morbidity, and mortality are well established (USDHHS, 1988). Whilst in the Third World the problems related to diet and health are ones of undernutrition, in the First World, the problems are predominantly linked to overconsumption of food. In Western industrialized countries the major problems

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are linked to excessive fat consumption and insufficient fiber, fruit, and vegetable consumption. In addition, excess consumption of calories combined with insufficient exercise has made obesity a major health problem. Diet has been implicated in cardiovascular diseases (CVDs), strokes and high blood pressure, cancer, diabetes, obesity, osteoporosis, and dental disease. It is generally agreed that elevated blood cholesterol level is a major risk factor for the development of CVD (Consensus Development Conference on Lowering Blood Cholesterol to Prevent Heart Disease, 1985). Nutbeam and Catford (1990) estimate that 26% of men and 25% of women in the UK have cholesterol levels greater than 6.5 mmol l71 (a level considered to be excessive). While in the USA, it is estimated that 50% of the adult population is at risk of CHD by virtue of elevated blood cholesterol levels (Sampos, Fulwood, Haines et al., 1989). International studies have clearly demonstrated an association between saturated fat consumption (one source of cholesterol) and blood cholesterol levels. For example, Keys (1970) reported a correlation of 0.89 across the seven countries studied. The reduction of blood cholesterol via dietary change is now widely accepted as an important way of tackling CHD (Expert Panel, 1993). Drug treatment to reduce blood cholesterol levels is generally seen as only advisable if dietary change is ineffective (Wardle, 1995). Dietary recommendations include reducing fat in the diet and increasing soluble fiber intake (Committee on Medical Aspects of Food Policy, 1991; Expert Panel, 1993). However, their impact upon cholesterol levels may be limited.

8.01.2.4 Exercise Engaging in regular exercise is seen to be another key component of a healthy lifestyle. The potential health benefits of engaging in regular exercise are many and include reduced cardiovascular morbidity and mortality (Oberman, 1985), lowered blood pressure (Blair, Goodyear, Gibbons, & Cooper, 1984) and the increased metabolism of carbohydrates (Lennon et al., 1983) and fats (Rosenthal, Haskell, Solomon, Widstrom, & Reavan, 1983), as well as a range of psychological benefits such as improved self-esteem (Sachs, 1984), positive mood states (Folkins & Sime, 1981), reduced life stress (Brown, 1991), and reduced levels of anxiety (Singer, 1992). However, despite the various health benefits of exercise, a significant proportion of the population lead a sedentary lifestyle. For

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example, the General Household Survey (1989) indicated that only one in three men and one in five women in the UK participate in any sport or recreational physical activity. Moreover, the Allied Dunbar Fitness Survey (1992) of 6000 English adults reported that one in six adults had done no exercise (i.e., for 20 minutes or more at a moderate or vigorous level) in the previous four weeks. Participation in regular exercise is strongly related to a number of sociodemographic variables. In particular, young people and males are more likely to engage in regular exercise. For example, the 1988 Welsh Heart Health Survey (Health Promotion Authority for Wales, 1990) reported that among 18±34 year olds, 61% of men engaged in moderately vigorous exercise at least two times a week compared with only 35% of women. For 35±64 year olds, the percentages drop to 37% for men and 17% for women. Overall, the typical exerciser is likely to be young, welleducated, affluent, and male (King et al., 1992).

8.01.2.5 Other Behaviors A number of other behaviors show clear links to health. Below we briefly consider recreational drug use, safe sex, alcohol use, and health screening as behaviors with important health consequences. The use of recreational drugs has long been recognized as a potential health problem which needs to be tackled (Aguirre-Molina & Gorman, 1996). The most commonly used drugs are alcohol and tobacco, however, here we consider what are usually referred to as psychoactive drugs (i.e., a drug that alters mood or behavior). There are a large number of such drugs including hypnotic drugs such as barbiturates which reduce anxiety and produce sedation; stimulants such as amphetamines which elevate mood, increase wakefulness, and give an enhanced sense of mental and physical energy; opiates such as opium and heroin which produce pleasant mood states; antipsychotic agents such as chlorpromazine which diminish the symptoms of psychoses; and psychedelics/ hallucinogens such as LSD, cannabis, and MDMA (3,4-methylenedioxymethamphetamine) which cause visual and auditory hallucinations. Most of these drugs have medical uses as well as being used recreationally. Data from various drug use surveys in the UK (e.g., Leitner, Shapland, & Wiles, 1993) suggest that opiate use has remained stable (at around 1%), but the use of cannabis and other nonopiates has been on the increase over the last 25 years. The 1968 OPCS survey reported that 2% of the 16 years and over age group had

used cannabis at some stage, while the Leitner et al. (1993) study reported that 10% of the same age group had used it. In general, drug use in the UK does not differ substantially from the rest of the Western world. Reported lifetime usage in the USA is slightly higher than in the UK, although estimates for injecting use (1±2% of the general population), alcohol use (around 85%), and lifetime tobacco use (around 75%) are roughly similar. Sexual behaviors have also long been considered health behaviors because of their impact upon the spread of sexually transmitted diseases (STDs) such as gonorrhoea and syphilis. More recently, the role of sexual behaviors in the spread of the human immunodeficiency virus (HIV) has been a focus of attention (O'Leary & Raffaelli, 1996). Whilst early health education campaigns emphasized the need to reduce the number of sexual partners or avoid particular sexual practices (e.g., anal sex, penetrative sex), more recently the focus has been upon the use of condoms during penetrative sex to reduce the risk of HIV transmission (Reiss & Leik, 1989). Condom use is particularly recommended for those with multiple partners or those who do not know their partners' sexual history. For these reasons, much of the health advice concerning condom use has been focused on young people. There seems to be considerable variation in the use of condoms in response to the threat of HIV/AIDS. For example, among heterosexuals, Richard and van der Pligt (1991) reported that 50% of their sample of Dutch teenagers with multiple partners consistently used condoms. While other studies in the UK and USA report rates of between 24% and 58% (Fife-Schaw & Breakwell, 1992; Gerrard, Gibbons, & Bushman, 1996). Among homosexuals, Weatherburn, Hunt, Davies, Coxon, and McManus (1991) reported that 39% of their sample always used a condom during anal sex. Whilst among bisexuals, Boulton, Schram Evans, Fitzpatrick, and Hart (1991) report that 25% of their male sample used condoms with their current male partner and only 12% with their current female partner. The General Household Survey (1993) in the UK reported changes by age group in the use of condoms for the period 1983±1991. Among 16±24-year-olds, condom use increase from around 6% to around 12% during this period, whilst among 40±49-year-olds it dropped from around 18% to around 12% over the same period. Thus, health messages aimed at increasing condom use may be having some impact among younger people, although the overall rates of use are still worrying low. High alcohol consumption has been linked to a range of negative health outcomes including high blood pressure (Shaper et al. 1981), heart

Understanding the Basis of Health Behavior disease (Sherlock, 1982), and cirrhosis of the liver (Colliver & Malin, 1986), although there is some evidence to suggest that low levels of alcohol consumption may have slightly beneficial effects on health (Hennekens, 1983). High levels of alcohol consumption have also been associated with accidents, injuries, suicides, crime, domestic violence, rape, murder, and unsafe sex (British Medical Journal, 1982). While many of the adverse effects of high alcohol consumption are due to continued heavy drinking (e.g., cirrhosis of the liver, heart disease), others are more specifically related to excessive alcohol consumption in a single drinking session (e.g., accidents, violence) (Honkanen et al., 1983). The General Household Survey (1992) reported that the average weekly consumption of alcohol in the UK was 15.9 units (approximately 8 pints of beer) for men and 5.4 (approximately 2.5 pints of beer) for women. Of more interest was the finding that about 27% of men and 11% of women were drinking more than the recommended weekly sensible limits (21 units for men, 14 units for women). Heavy drinking is also more likely among younger age groups. In a survey of 12 000 Welsh adults, Moore, Smith, and Catford (1994) reported that 31.1% of drinkers aged 18±24 engaged in binge drinking (i.e., drinking half the recommended weekly consumption of alcohol in a single session) at least once a week. Finally, individuals may seek to protect their health by participating in various screening programs which attempt to detect disease at an early, or asymptomatic, stage. In the UK, screening programs have been set up for various diseases including anemia (Ashworth, 1963), diabetes (Redhead, 1960), bronchitis (Gregg, 1966), cervical cancer (Freeling, 1965), and breast cancer (Forrest, 1986). Considering breast cancer, it has been estimated that breast screening programs which include mammograms can reduce breast cancer mortality by up to 40% among women aged 50 and over (Strax, 1984). However, participation rates in breast screening programs show great variability across different countries, ranging from 25% to 89% (Vernon, Laville, & Jackson, 1990). Participation tends to be negatively related to age and positively related to education level and socioeconomic status (Vernon et al., 1990). 8.01.3 UNDERSTANDING THE BASIS OF HEALTH BEHAVIOR 8.01.3.1 Introduction A clearer understanding of why individuals perform health behaviors might assist in the

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development of interventions to help individuals gain the benefits of improved health and well-being. A variety of factors have been found to account for individual differences in the performance of various health behaviors, including demographic factors, social factors, emotional factors, perceived symptoms, factors relating to access to medical care, personality factors, and cognitive factors (Adler & Matthews, 1994; Rosenstock, 1974; Taylor, 1991). Demographic variables show reliable associations with the performance of health behaviors. For example, there is a curvilinear relationship between many health behaviors and age, with high incidences of many healthrisking behaviors such as smoking in young adults and much lower incidences in children and older adults (Blaxter, 1990). Such behaviors also vary by gender, with females being generally less likely to smoke, consume large amounts of alcohol, engage in regular exercise but more likely to monitor their diet, take vitamins, and engage in in dental care (Waldron, 1988). Differences by socioeconomic status and ethnic group are also apparent for behaviors such as diet, exercise, alcohol consumption, and smoking (e.g., Blaxter, 1990). Generally speaking, younger, wealthier, better educated individuals, under low levels of stress, with high levels of social support, are more likely to practice health enhancing behaviors. Higher levels of stress and/or fewer resources are associated with health-compromising behaviors such as smoking and alcohol abuse (Adler & Matthews, 1994). Social factors seem to be important in instilling health behaviors in childhood. Parent, sibling, and peer influences are important, for example, in the initiation of smoking (e.g., McNeil et al., 1988). Cultural values also have a major impact, for instance in determining the number of women exercising in a particular culture (e.g., Steptoe & Wardle, 1996). For example, Steptoe and Wardle (1992) report that between 34% and 95% of women in their European student sample had exercised in the past 14 days. Perceived symptoms control health habits when, for example, smokers regulate their smoking on the basis of sensations in the throat. Access to medical care has been found to influence the use of such health services (e.g., Black Report, 1988). Personality factors have also been associated with health behaviors (Adler & Matthews, 1994; Steptoe et al., 1994). Cognitive factors also determine whether or not an individual practices health behaviors. Knowledge about behavior±health links is an important factor in an informed choice concerning a healthy lifestyle. Various other cognitive variables have been studied including

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perceptions of health risk, efficacy of behaviors in influencing this risk, social pressures to perform the behavior, and control over performance of the behavior. The relative importance of various cognitive factors in determining who performs various health behaviors constitutes the basis of different models. Such models have been labeled SCMs because of their focus on cognitive variables as the primary determinant of individual social behaviors. Two types of SCMs have been applied in health psychology, predominantly to explain health-related behaviors and response to treatment (Conner, 1993). The first type focus on individuals' understanding of the causes of health-related events and are best typified by attribution models (e.g., King, 1982). The second type are more diverse in nature and attempt to predict future health-related behaviors and outcomes. These include the health belief model (HBM; e.g., Becker, 1974; Janz & Becker, 1984; Sheeran & Abraham, 1996), health locus of control (HLOC; Norman & Bennett, 1996; Seeman & Seeman, 1983; Wallston, Wallston, & De Vellis, 1978), protection motivation theory (PMT; e.g., Boer & Seydel, 1996; Rogers, 1983; van der Velde & van der Pligt, 1991), theory of reasoned action/theory of planned behavior (TRA/TPB; e.g., Ajzen, 1988; 1991; Ajzen & Fishbein, 1980; Conner & Sparks, 1996), and self-efficacy (SE; e.g., Bandura, 1982, 1991; Schwarzer, 1992; Schwarzer & Fuchs, 1996). Other models include self-regulation theory (Leventhal, Nerenz, & Steele, 1984), the transtheoretical model of change (Prochaska & DiClemente, 1984), the precaution-adoption process (Weinstein, 1988), and the model of goal achievement (Bagozzi, 1992). However, none of these latter models have been widely applied to the prediction of health behaviors at present. These social cognition models provide a basis for understanding the determinants of behavior and behavior change. Each of these models emphasize the rationality of human behavior, although they do not assume that all behavior is based upon careful thought (Ajzen, 1996). Most assume that behavior and decisions are based upon elaborate, but subjective, cost/benefit analysis of the likely outcomes of differing courses of action. As such they have roots going back to expectancy-value theory (Peak, 1955) and subjective expected utility theory (SEU; Edwards, 1954). It is assumed that individuals generally aim to maximize utility and so prefer behaviors which are associated with the highest expected utility (Van der Pligt & de Vries, 1998). Whilst such considerations may well provide good predictions of which behaviors are selected, it has been noted by several authors

that they do not necessarily provide an adequate description of the way in which individuals make decisions (e.g., Edwards, 1992; Feather, 1982; Frisch & Clemen, 1994; Jonas, 1993). In the section which follows, the most widely used of these models (HBM, TPB, HLOC, PMT, SE) are outlined, the research using them described, and their use reviewed. 8.01.3.2 Health Belief Model 8.01.3.2.1 Model description The HBM is probably the most widely used social cognition model in health psychology (Becker, 1974; Rosenstock, 1966; Sheeran & Abraham, 1996). It was originally developed by US public health researchers attempting to develop models upon which to base health education programs (Hochbaum, 1958; Rosenstock, 1966). The model attempts to conceptualize the health beliefs which make a behavior more or less attractive. In particular, the key health beliefs were seen to be the likelihood of experiencing a health problem, the severity of the consequences of the health problem, and the perceived costs and benefits of the health behavior. Thus, the HBM employs two aspects of individuals' representations of health behavior in response to threat of illness: perceptions of the threat of illness and evaluation of the effectiveness of behaviors to counteract this threat (see Figure 1). Threat perceptions depend upon two beliefs: the perceived susceptibility to the illness and the perceived severity of the consequences of the illness. Together these two variables determine the likelihood of the individual following a health-related action, although their effect is modified by individual differences in demographic variables, social pressure, and personality. The particular action taken is determined by evaluation of the possible alternatives. This behavioral evaluation depends upon beliefs concerning the benefits or efficacy of the health behavior and the perceived costs or barriers to performing the behavior. Hence, individuals are likely to follow a particular health action if they believe themselves to be susceptible to a particular condition or illness which they consider to be serious, and believe the benefits of the action taken to counteract the condition or illness outweigh the costs. Cues to action and health motivation are two other variables commonly included in the model. Cues to action include a diverse range of triggers to the individual taking action and are commonly divided into factors which are internal (e.g., physical symptom) or external (e.g., mass media campaign, advice from others such as physicians) to the individual (Janz & Becker, 1984).

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Understanding the Basis of Health Behavior

EXTERNAL VARIABLES

Threat (motivation)

Demographic variables

Perceived susceptibility

Age, sex, occupation, socioeconomic status, religion, education

Perceived severity

Personality traits Extraversion

Health motivation

Behavior

Agreeableness Conscientiousness Neuroticism

Response effectiveness

Openness Other psychological factors Peer pressure

Perceived benefits Cues to action Perceived barriers

Self-efficacy

Figure 1 Health belief model.

Becker (1974) has argued that the HBM should also contain a measure of health motivation (readiness to be concerned about health matters) because certain individuals may be predisposed to respond to cues to action because of the value they place on their health. Other influences upon the performance of health behaviors, such as demographic factors or psychological characteristics (e.g., personality, peer pressure, perceived control over behavior), are assumed to exert their effect via changes in the six components of the HBM. This is a potentially important issue if the HBM is to claim to be a complete model of health behavior. However, this has not been widely addressed in empirical studies and where it has the evidence has been equivocal. Orbell, Crombie, and Johnson (1995), for example, reported that HBM components did mediate the effects of social class upon uptake of cervical screening, but did not mediate the effects of marital status or sexual experience. 8.01.3.2.2 Review of research The HBM has been applied to a very broad range of health behaviors and populations.

Sheeran and Abraham (1996) distinguish three broad areas of research. First, the HBM has been applied to various preventive health behaviors. These include health-risk behaviors such as smoking (Gianetti, Reynolds, & Rihen, 1985; Stacey & Lloyd, 1990) and alcohol use (K. H. Beck, 1981; Gottlieb & Baker, 1986), as well as health-promoting behaviors such as diet (Aho, 1979), exercise (Langlie, 1977), genetic (Becker, Kaback, Rosenstock, & Ruth, 1975) and health screening (Conner & Norman, 1994; King, 1982), vaccination (Oliver & Berger, 1979), breast self-examination (Champion, 1984; Ronis & Harel, 1989), contraceptive use (Hester & Macrina, 1985), and dental behaviors (Chen & Land, 1986). A second area the HBM has been applied to is various sick role behaviors which refer to compliance with professionally recommended medical regimens in response to illness. These include compliance with antihypertensive regimens (Taylor, 1979), diabetic regimens (Harris & Lynn, 1985), and renal disease regimens (Hartman & Becker, 1978), and regimens adhered to by parents for a child's condition (Becker, Radius, & Eveland, 1978). Third, the HBM has been applied to clinic use, which includes physician visits for a variety of

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reasons including preventative (Aiken, West, Woodward, Reno, & Reynolds, 1994), psychiatric (Connelly, 1984), and parent and child conditions (Kirscht, Becker, & Eveland, 1976). There is no strong evidence that the HBM has been more predictive of behavior in any one of these behaviors compared with any other (Sheeran & Abraham, 1996). There have been two quantitative reviews of research with the HBM (Harrison, Mullen, & Green, 1992; Janz & Becker, 1984). The first, conducted by Janz and Becker (1984), examined the proportion of times each of the HBM's components showed a significant relationship with health behavior through the use of a ªsignificance ratio.º Across the 46 studies reviewed, the barriers component was found to have the most consistent relationship with health behavior (89%), followed by the susceptibility (81%), benefits (78%), and severity (65%) components. However, while Janz and Becker (1984) suggest that the HBM components are consistent predictors of health behavior, they fail to estimate the strength of the relationships. This question was addressed in the second quantitative review, conducted by Harrison et al. (1992). Over 200 published studies on the HBM were identified although only 16 of these were found to measure each of the components adequately. Harrison et al's (1992) meta-analysis on these 16 studies produced a similar pattern of results to Janz and Becker's (1984) earlier review with the barriers components having the highest average correlation with health behavior (r = 70.21), followed by the susceptibility (r = 0.15), benefits (r = 0.13), and severity (r = 0.08) components. The predictive power of individual components is therefore relatively modest, accounting for only 0.5±4% of variance in behavior. However, it should be noted that it is the combined effects of the six health beliefs which is generally of interest and this is commonly in excess of the sum of the effects of the individual components. 8.01.3.2.3 Commentary The HBM has provided a useful framework for investigating health behaviors and identifying key health beliefs, has been widely used, and has met with moderate success in predicting a range of health behaviors (for reviews see Harrison et al., 1992; Janz & Becker, 1984; Sheeran & Abraham, 1996). The strength of the HBM lies in the fact that it was developed by researchers working directly with health behaviors and so many of the concepts possess facevalidity to those working in this area. This commonsense operationalization of a number of cognitive variables relevant to the perfor-

mance of health behavior partly account for the model's popularity. However, compared to other similar social cognitive models of health behaviors, the HBM suffers from a number of weaknesses. The way in which the variables in the HBM combine to produce behavior has not been precisely specified (but see Becker & Rosenstock, 1987) and so the HBM is thus frequently tested as six independent predictors of behavior. In addition, various researchers have used somewhat different operationalizations of the six constructs (see Becker & Maiman, 1983; Rosenstock, 1974). Together these factors have weakened the status of the HBM as a coherent SCM of health behavior (Conner, 1993; Sheeran & Abraham, 1996). Moreover, key social cognitive variables, found to be highly predictive of behavior in other models, are not incorporated in the HBM. For example, intentions to perform a behavior and social pressure are key components of the TRA/TPB which do not appear in the HBM. Also, perceptions of personal control over the performance of the behavior (self-efficacy beliefs) which have been found to be such powerful predictors of behavior in models based upon social cognitive theory (Bandura, 1982; Schwarzer & Fuchs, 1996) are not explicitly included in the HBM. In addition, in not specifying a causal ordering among the variables, as is done in other models, more powerful analysis of data and clearer indications of how interventions may have their effects are precluded in the HBM. Several authors have noted, for example, that threat is perhaps best seen as a more distal predictor of behavior acting via influences upon outcome expectancies. Finally, the model is static; there is no distinction between a motivational stage dominated by cognitive variables and a volitional phase where action is planned, performed, and maintained (Schwarzer, 1992). Such distinctions are thought to be important in understanding various health behaviors. Hence, while an extremely popular SCM for use in understanding health behavior, it is also in a number of ways limited and may receive relatively less attention in the future. 8.01.3.3 Theory of Planned Behavior 8.01.3.3.1 Model description The TPB was developed by social psychologists and has been widely applied to the understanding of a variety of behaviors including health behaviors (Ajzen, 1988, 1991; Conner & Sparks, 1996) (see Figure 2). The TPB details how the influences upon an individual determine that individual's decision to follow a

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Understanding the Basis of Health Behavior particular behavior. This theory is an extension of the widely applied TRA (Ajzen & Fishbein, 1980; Fishbein & Ajzen, 1975). The TPB suggests that the proximal determinants of behavior are intentions to engage in that behavior and perceived behavioral control over that behavior. Intentions represent a person's motivation in the sense of his or her conscious plan or decision to exert effort to perform the behavior. Perceived behavioral control is a person's expectancy that performance of the behavior is within his/her control. The concept is similar to Bandura's (1982) concept of selfefficacy (see Schwarzer & Fuchs, 1996). Control is seen as a continuum with easily-executed behaviors at one end and behavioral goals demanding resources, opportunities, and specialized skills at the other. Intentions are determined by three variables. The first is attitudes, which are the overall evaluations of the behavior by the individual. The second is subjective norms, which consist of a person's beliefs about whether significant others think he/she should engage in the behavior. The third is perceived behavioral control (PBC), which is the individual's perception of the extent to which performance of the behavior is within his/her control. In addition, to the extent that PBC reflects actual control, it is predicted to directly influence behavior. Just as intentions are held to have determinants, so the attitude, subjective norm, and

perceived behavioral control components are also held to have determinants. The attitude component is a function of a person's salient behavioral beliefs, which represent perceived likely consequences of the behavior. Following expectancy-value conceptualizations (Peak, 1955), the model quantifies consequences as being composed of the multiplicative combination of the judged likelihood that performance of the behavior will lead to a particular outcome and the evaluation of that outcome. These expectancy-value products are then summed over the salient consequences. It is not claimed that individuals perform such calculations each time they are faced with a decision about whether to perform a behavior or not, but rather the results of such considerations are maintained in memory and retrieved and used when necessary (Eagly & Chaiken, 1993). However, it is also possible for the individual to retrieve the relevant beliefs and evaluations when necessary. Subjective norm is a function of normative beliefs, which represent perceptions of specific salient others' preferences about whether one should or should not engage in a behavior. In the model, this is quantified as the subjective likelihood that specific salient groups or individuals (referents) think the person should or should not perform the behavior, multiplied by the person's motivation to comply with that referent's expectation. Motivation to comply is the extent to which the person wishes to comply

EXTERNAL VARIABLES Demographic variables Age, sex, occupation, socioeconomic status, religion, education

Belief Evaluation about x of outcomes outcomes

Attitude towards behavior

Normative Motivation x beliefs to comply

Subjective norm

Perceived Perceived likelihood facilitating/ x of inhibiting occurrence power

Perceived behavioral control

Personality traits Extraversion Agreeableness Conscientiousness Neuroticism Openness

Figure 2 Theory of planned behavior.

Behavioral intention

Behavior

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Health Behavior

with the specific wishes of the referent on this issue. These products are then summed across salient referents. Judgments of perceived behavioral control are influenced by beliefs concerning access to the necessary resources and opportunities to perform the behavior successfully, weighted by the perceived power of each factor (Ajzen, 1988, 1991). The perception of factors likely to facilitate or inhibit the performance of the behavior are referred to as control beliefs. These factors include both internal control factors (information, personal deficiencies, skills, abilities, emotions) and external control factors (opportunities, dependence on others, barriers). People who perceive they have access to the necessary resources and perceive that there are the opportunities (or lack of obstacles) to perform the behavior are likely to perceive a high degree of behavioral control (Ajzen, 1991). Ajzen (1991) has suggested that each control factor is weighted by its perceived power to facilitate or inhibit performance of the behavior. The model quantifies these beliefs by multiplying the frequency or likelihood of occurrence of the factor by the subjective perception of the power of the factor to facilitate or inhibit the performance of the behavior. So, according to the TPB, individuals are likely to follow a particular health action if they believe that the behavior will lead to particular outcomes which they value, if they believe that people whose views they value think they should carry out the behavior, and if they feel that they have the necessary resources and opportunities to perform the behavior. 8.01.3.3.2 Review of research The TPB has been applied to the prediction of a number of different behaviors including health-relevant behaviors with varying degrees of success (Ajzen, 1991; see Conner & Sparks, 1996 for a review of the application of the TPB to health behaviors). For example, smoking has been a focus of several studies (Babrow, Black, & Tiffany, 1990; Godin, Valois, Lepage, & Desharnais, 1992). Godin et al. (1992) looked at the prediction of the frequency of smoking in the general public over a six-month period. The prediction of intentions was significantly improved by the addition of the PBC component, and actual smoking behavior appeared to be primarily related to PBC. One study has examined drinking alcohol (Schlegel, D'Avernas, Zanna, & DeCourville, 1992) and found that PBC contributed to the predictions of intentions but not the frequency of getting drunk in nonproblem drinkers, while in problem drinkers, the PBC also contributed to predictions of frequency of getting drunk.

Several studies examined condom use (Boldero, Moore, & Rosenthal, 1992; Wilson, Zenda, McMaster, & Lavelle, 1992). Nucifora, Gallois, and Kashima (1993), for example, examined undergraduates' use of condoms using the TPB. PBC was found to make a small but significant contribution to the predictions of intentions to use condoms and actual condom use. However, intentions appeared to be principally determined by attitudes and subjective norms, while behavior was mainly influenced by intentions. Exercise has also been examined in several studies (Dzewaltowski, Noble, & Shaw, 1990; Godin & Shepherd, 1987; Norman & Smith, 1995). Dzewaltowski et al. (1990) reported the application of the TPB to exercise participation. Intentions were based both upon attitudes and PBC, but not subjective norms, whilst actual behavior seemed to be principally determined by intentions. Breast or testicle self-examination has been the focus of a couple of studies (McCaul, Sandgren, O'Neill, & Hinsz, 1993; Young, Lierman, Powell-Cope, & Kasprzyk, 1991). McCaul et al. (1993) showed the TRA components to predict breast/testicle self-examination intentions and behaviors, with PBC adding significantly to predictions of intentions but not behavior. A range of other behaviors have been examined using the TPB, including health screening attendance (DeVellis, Blalock, & Sandler, 1990; Norman & Conner, 1993), food choices (Beale & Manstead, 1991; Sparks & Shepherd, 1992), kidney donation (Borgida, Conner, & Manteufel, 1992), drug compliance (Hounsa, Godin, Alihonou, & Valois, 1993), patient education (Kinket, Paans, & Verplanken, 1992), and weight control (Netemeyer, Burton, & Johnston, 1991; Schifter & Ajzen, 1985). The published studies applying the TRA have been reviewed by Sheppard, Hartwick, and Warshaw (1988) and van den Putte (1993), with Ajzen (1991) reviewing 16 studies using the TPB. The findings are generally supportive of the TRA/TPB. Ajzen (1991) reports the multiple correlation between intentions and attitude, subjective norm and PBC to be 0.71 across the 16 studies he reviewed. Van den Putte (1993) computes a value of r = 0.64, but notes the large variation in results between behaviors. Ajzen reports the mean correlation between intentions, PBC and behavior to be 0.51, while van den Putte computes a value of 0.46. Ajzen (1991) and Madden, Ellen, and Ajzen (1992) report empirical evidence that PBC significantly improves predictions of both intentions and behavior. Hence, in summary, the evidence is broadly supportive of the TPB in helping to understand and predict health behaviors. The relative importance of the different predictors is

Understanding the Basis of Health Behavior largely an empirical matter. However, in terms of predictors of intentions, it has been argued that attitude may be more important than subjective norms for health behaviors performed in private (e.g., breast self-examination), while subjective norm may be more important than attitudes where the behavior is performed in public (e.g., safety helmet use) (Quine, Rutter, & Arnold, 1998). 8.01.3.3.3 Commentary The TPB has been widely tested and successfully applied to the understanding of a variety of behaviors (for reviews see Ajzen, 1991; Conner & Sparks, 1996; Sheppard et al., 1988). The theory incorporates a number of important cognitive variables which appear to determine health behaviors (intentions, expectancy values, perceived behavioral control). Also the role of social pressure from others is incorporated in the model in the form of subjective norms. However, perhaps because the model was developed outside the health arena, the model does not make an assessment of health threat as is included in models such as the HBM. Finally, the theory states a clear causal ordering among variables in how they relate to behavior, allowing sophisticated analysis techniques to be applied to assessing the model. Sheppard et al. (1988), in a review of the TRA, have argued for the need to consider both behavioral intentions and self-predictions when predicting behavior. Warshaw and Davis (1985) noted a number of different ways in which intentions had been measured, and distinguished measures of behavioral intentions (e.g., ªI intend to perform behavior xº) and from measures of self-predictions (e.g., ªHow likely is it that you will perform behavior x?º). This distinction is important when considering the prediction of health behavior because while, for example, David might intend to quit smoking, he might also think that it is unlikely that he will do so. Sheppard et al. went on to argue that self-predictions should provide better predictions of behavior as they are likely to include a consideration of those factors which may facilitate or inhibit performance of a behavior as well as a consideration of the likely choice of other competing behaviors. Sheppard et al.'s meta-analysis supports this view; measures of self-predictions were found to have stronger relationships with behavior than behavioral intentions. However, Norman and Smith (1995) found no difference in the extent to which the two measures correlated with exercise behavior. Furthermore, the measures of behavioral intentions and self-predictions are strongly correlated, suggesting that the discri-

11

minant validity for the two concepts may be weak. Bagozzi (1992) notes that the causal path may begin with the formation of desires which then develop into intentions, which in turn inform self-predictions. However, Conner and Sparks (1996) note that while theoretically these concepts may be distinguishable, empirically there is little to distinguish the three concepts. Clearly, more work is needed to further disentangle these and other related constructs that have appeared in the literature such as planning and commitment (Bagozzi, 1992, 1993), need to change (Paisley & Sparks, 1998), and behavioral willingness (Gibbons, Gerrard, Ouelette, & Burzette, 1998). Self-efficacy is a powerful predictor of the performance of a range of health behaviors (Schwarzer & Fuchs, 1996). Ajzen (1991) argues that the PBC and self-efficacy constructs are interchangeable. However, several authors (e.g., Terry & O'Leary, 1995) have suggested that selfefficacy and PBC are not entirely synonymous. Bandura (1986), for example, argues that control and self-efficacy are quite different concepts. Although Bandura (1986) accepts that some external factors (e.g., task difficulty) will have an influence on self-efficacy, it may still be argued that self-efficacy is more concerned with perceptions of control based on internal control factors. In contrast, PBC is likely to reflect more external factors, and may be more usefully described as ªperceptions of control over the behaviorº (Armitage & Conner, in press). For example, Terry and O'Leary (1995) measure self-efficacy over exercising by items such as ªFor me to exercise would be . . . easy±difficultº and perceived control over the behavior by ªHow much control do you have over exercising? no control±complete control.º De Vries, Dijkstra, and Kuhlman (1988) have advocated the use of measures of self-efficacy as opposed to PBC in the prediction of intentions and behavior. Further, Dzewaltowski et al. (1990), in a comparison of the TRA, TPB, and Bandura's (1986) Social Cognitive Theory, found that self-efficacy rather than PBC had a direct impact on behavior. Terry and O'Leary (1995) examined exercise behavior and found that self-efficacy only predicted intentions, while PBC had main and interactive effects on exercise behavior. Crucially, a combined measure of PBC and self-efficacy failed to moderate the effect of intention on behavior, suggesting that the two constructs are not synonymous. This issue warrants further empirical study. It seems plausible, however, that perceptions of control and self-efficacy are two separable constructs which not only have differential effects on intentions and behavior but may act differently for different behaviors.

12

Health Behavior

The TPB is correctly regarded as a theory of the proximal determinants of behavior. Indeed, Ajzen (1991) describes the model as open to further elaboration if further important proximal determinants are identified. A number of potential candidate variables for addition to the TRA/TPB have been suggested. In each case both theoretical and empirical justifications are necessary (Fishbein, 1993). Some of the most promising of these ªadditional variablesº are considered in Section 8.01.5.2. 8.01.3.4 Health Locus of Control 8.01.3.4.1 Model description The HLOC construct is one of the most widely researched constructs in relation to the prediction of health behavior (K. A. Wallston, 1992). Its origins can be traced back to Rotter's (1954) social learning theory which states that the likelihood of a behavior occurring in a given situation is a function of the individual's expectancy that the behavior will lead to a particular reinforcement and the extent to which the reinforcement is valued. As well as being applied on a specific level, Rotter argued that social learning theory could be applied on a general level such that individuals may have generalized expectancy beliefs which cut across situations. It was at this generalized level that Rotter introduced the distinction between internal and external locus of control orientations, with ªinternalsº believing that events are a consequence of their own actions and thereby under personal control and ªexternalsº believing that events are unrelated to their actions and thereby beyond their personal control. Early work examining the relationship between locus of control and health behavior with Rotter's (1966) Internal±External (I±E) scale produced mixed results. However, the I±E scale was criticized for being too generalized to predict health behavior and for conceptualizing locus of control as a unidimensional construct. In particular, Levenson (1974) argued that internal locus of control beliefs are orthogonal to external locus of control beliefs, and that within external locus of control a distinction can be made between external control exerted by powerful others and the influence of chance or fate. The development of the multidimensional health locus of control (MHLC) Scale (K. A. Wallston et al., 1978) addressed both these criticisms, and has since become the most popular locus of control measure in research on health behavior (Wallston & Wallston, 1981, 1982). The MHLC scale measures generalized expectancy beliefs with respect to health along

three dimensions. These measure the extent to which individuals believe their health is a function of their own actions (i.e., internal HLOC), the actions of powerful others such as health professionals (i.e., powerful others HLOC), and the influence of chance or fate (i.e., chance HLOC). According to HLOC theory, individuals who have strong internal HLOC beliefs should be more likely to engage in health-promoting behaviors. Conversely, those who believe that their health is due to chance or fate should be less likely to engage in healthpromoting behaviors. The prediction for powerful others HLOC is less clear cut. Strong powerful others HLOC beliefs may reflect a receptivity to health messages endorsed by health professionals. Alternatively, strong powerful others HLOC beliefs may indicate a strong belief in the ability of health professionals to cure subsequent illnesses and may be unrelated or negatively related to the performance of health-promoting behaviors. According to social learning theory, the above relationships should only hold for individuals who place a high value on their health as behavior is a function of both expectancy beliefs (e.g., HLOC) and the value attached to certain outcomes (e.g., health value). As K. A. Wallston (1991) argues, individuals are unlikely to engage in health-promoting behaviors if they place a low value on their health, whatever their HLOC beliefs. Thus, health value should act as a moderator of the relationship between HLOC and health behavior. 8.01.3.4.2 Review of research The majority of the research using the HLOC construct has correlated HLOC beliefs with the performance of health behavior, without paying attention to the potential moderating role of health value. This may be due to a lack of appreciation of the complexity of social learning theory (Wallston, 1991) and/or an unchallenged assumption that all people value their health (Lau, Hartman, & Ware, 1986). Several studies have examined the relationship between HLOC beliefs and general indices of health behavior. Most of these have reported a positive correlation between internal HLOC beliefs and the performance of health-promoting behaviours (Duffy, 1988; Mechanic & Cleary, 1980; Seeman & Seeman, 1983; Waller & Bates, 1992; Weiss & Larsen, 1990), although other studies have failed to find such a relationship (Brown, Muhlenkamp, Fox, & Osborn, 1983; Muhlenkamp, Brown, & Sands, 1985; Norman, 1995; Steptoe et al., 1994; Wurtele, Britcher, & Saslawsky, 1985). Some studies have found a negative relationship

Understanding the Basis of Health Behavior between chance HLOC beliefs and health behavior indices (Brown et al., 1983; Duffy, 1988; Muhlenkamp et al., 1985; Steptoe et al., 1994). Finally, powerful others HLOC beliefs have rarely been found to predict the performance of health-promoting behaviors (Brown et al., 1983; Duffy, 1988; Muhlenkamp et al., 1985; Steptoe et al., 1994; Waller & Bates, 1992; Weiss & Larsen, 1990). The above results are generally in line with predictions, although the relationship between HLOC and health behavior is typically a weak one. A similar pattern of results is obtained for the relationship between HLOC beliefs and specific health behaviors. For example, studies have reported a link between internal HLOC beliefs and exercise (Carlson & Petti, 1989; O'Connell & Price, 1982; Slenker, Price, & O'Connell, 1985), while other studies have found only a weak link or no link (Burk & Kimiecik, 1994; Calnan, 1989; Liao, Hunter & Weinman, 1995; Norman, 1990, 1995; Speake, Cowart, & Stephens, 1991). In a large-scale representative sample, Calnan (1989) found significant negative correlations between the powerful others and chance HLOC dimensions and exercise. In relation to alcohol consumption, a number of early studies used the locus of control construct to compare alcoholics with nonalcoholics producing mixed results (Butts & Chotlas, 1973; Costello & Manders, 1974). More recent work with the HLOC construct has produced similar mixed results with a number of studies finding no relationship between HLOC beliefs and drinking behavior (Dean, 1991; Liao et al., 1995; Norman, 1990, 1995) and Calnan (1989) only finding weak negative correlations between powerful others and chance HLOC beliefs and alcohol consumption. A number of studies have applied the HLOC construct to the prediction of smoking cessation. A few of these studies have found internal HLOC beliefs to be related to smoking cessation (Horwitz, Hindi-Alexander, & Wagner, 1985; Rosen & Shipley, 1983). Other studies have failed to find a relationship between internal HLOC beliefs and smoking cessation (Kaplan & Cowles, 1978; Segall & Wynd, 1990; Wojcik, 1988). Smokers who believe that their health is under the control of powerful others might be expected to be more successful in giving up smoking after attending a formal smoking cessation program. However, a couple of studies suggest that strong powerful others HLOC beliefs are related to a greater likelihood of relapse following attendance at a smoking cessation program (Segall & Wynd, 1990; Wojcik, 1988). Studies examining the relationship between HLOC beliefs and the performance of breast

13

self-examination among women have found a positive relationship with internal HLOC beliefs (Redeker, 1989) and a negative relationship with powerful others HLOC beliefs (Hallal, 1982; Nemeck, 1990). The negative relationship with powerful others HLOC beliefs may reflect a belief that breast examination is the responsibility of health professionals. In support of this view, Bundek, Marks, and Richardson (1993) found a positive relationship between gynecological screening including physician breast examination and powerful others HLOC beliefs, and a positive relationship between self breast examination and internal HLOC beliefs. However, other studies have failed to find any relationship between HLOC beliefs and breast self-examination (Lau et al., 1986; Liao et al., 1995; Seeman & Seeman, 1983). Those studies that have tested the moderating role of health value have generally produced positive results. Considering the prediction of indices of health behavior first, Weiss and Larsen (1990) found a significant correlation between internal HLOC beliefs and a health behavior index among individuals placing a high value on their health, but a nonsignificant correlation among individuals placing a low value on their health. Similar results have been reported by a number of researchers (Lau, 1982; Lau et al., 1986; Seeman & Seeman, 1983; K. A. Wallston & Wallston, 1980), although other studies have failed to find evidence for the moderating role of health value (Norman, 1995; Wurtele et al., 1985). Studies looking at the interaction between health value and the powerful others and chance dimensions have generally produced nonsignificant results (Lau et al., 1986; Wurtele et al., 1985 ). A similar pattern of results emerges when the performance of specific health behaviors is considered. Evidence for an interaction between internal HLOC beliefs and health value has been found for a range of behaviors including dietary behavior (Hayes & Ross, 1987), smoking cessation (Kaplan & Cowles, 1978), breast self-examination (Lau et al., 1986), and information seeking (K. A. Wallston, Maiders, & Wallston, 1976). However, other studies have failed to find evidence for such an interaction when considering cancer-preventive behavior (McCusker & Morrow, 1979), exercise (Burk & Kimiecik, 1994), attendance at health checks (Norman, 1991), and information seeking (De Vito, Bogdanowicz, & Reznikoff, 1982). 8.01.3.4.3 Commentary Reviews of research with the HLOC construct have concluded that HLOC is a weak predictor of health behavior, even when

14

Health Behavior

considered in conjunction with health value (Norman & Bennett, 1996; K. A. Wallston, 1991, 1992). There are a number of reasons for this poor performance which are outlined below. K. A. Wallston and Wallston (1981, 1982) have argued that certain combinations of HLOC beliefs may be important in predicting health behavior. For example, when being advised to quit smoking by a health professional, it may be advantageous to have a combination of strong powerful others and internal HLOC beliefs. K. A. Wallston and Wallston (1981) have therefore proposed a 2 6 2 6 2 typology based on median splits on the three HLOC dimensions (see also Waller and Bates, 1992). Using this typology, ªbelievers in controlº (i.e., high internal high powerful others, low chance HLOC beliefs) have been found to show better adjustment in relation to rheumatoid arthritis (Roskam, 1986) and diabetes (Bradley, Lewis, Jennings, & Ward, 1990). To date, this approach has not been applied to the prediction of health behavior. However, despite the promise of this approach, its utility may be limited given that large sample sizes are required in order to compare all eight types. In addition, this approach may lead to results which are difficult to interpret, given the large number of comparisons. A number of researchers have questioned the way in which health value is measured. Typically, health value has been measured as an absolute value using Lau et al.'s (1986) fouritem scale. However, when deciding whether or not to perform a specific health behavior, individuals are often faced with more appealing alternatives. As a result, values other than health may be important in determining behavior. In such cases it may be more appropriate to use relative measures of health value. Kristiansen (1986) followed this approach and found that a measure of the value placed on health relative to value of an exciting life was more predictive of health behavior among young people than an absolute measure of health value. However, Wurtele et al. (1985) reported the opposite pattern of results in a sample of female undergraduates. Clearly, more work is needed comparing different approaches to the measurement of health value. The need to consider behavior-specific control beliefs has been highlighted by a number of researchers. In particular it is possible to argue that one reason for the relatively poor performance of the HLOC construct is that it measures generalized expectancy beliefs with respect to health. In other words, while HLOC is specific to a given goal (i.e., health), it cuts across many situations (e.g., smoking, exercise,

diet, etc.). As a result, the development of behavior-specific HLOC scales has been advocated. Georgiou and Bradley's (1992) smokingspecific locus of control scale is a good example of such a scale. This scale was found to have stronger correlations with smokers' behaviors and intentions than the more generalized MHLC scale. Other scales have been developed in relation to exercise (Burk & Kimiecik, 1994), AIDS risk behavior (Kelley et al., 1990), weight loss (Saltzer, 1982), alcohol use (Donovan & O'Leary, 1978) and a range of specific conditions including diabetes (Bradley et al., 1990), arthritis (Nicassio, Wallston, Callahan, Herbert, & Pincus, 1985), cancer (Prwun et al., 1988), hypertension (Stanton, 1987) and heart and lung disease (Allison, 1987). Generally, these scales have been found to be more predictive of health behavior than more generalized measures (Lefcourt, 1991). In conclusion, the amount of variance in health behavior explained by the HLOC construct is low, even when considered in conjunction with health value (Norman & Bennett, 1996; K. A. Wallston, 1991, 1992). Nevertheless, the pattern of results obtained are generally in line with predictions suggesting that HLOC beliefs may have a distal influence on health behavior. In line with this position, K. A. Wallston (1992) has proposed a ªmodified social learning theoryº in which health behavior is a function of HLOC beliefs, health value, and self-efficacy. Importantly, internal HLOC beliefs are seen to be a necessary, but not sufficient, condition for performing a health behavior. To date, there have been no formal tests of this modified theory, although the attempt to embed HLOC beliefs into a broader theoretical perspective is an encouraging development. 8.01.3.5 Protection Motivation Theory 8.01.3.5.1 Model description Protection motivation theory (Rogers, 1983) was originally developed as a framework for understanding the effectiveness of health-related persuasive communications, although more recently it has also been used to predict health protective behavior. It has its origins in early work on the persuasive impact of fear appeals, which was concerned with the conditions under which fear appeals may influence attitudes and behavior. In an extension of the fear-drive model, Janis (1967) proposed that if a persuasive communication successfully arouses fear, usually through emphasizing the severity of a threat and the likelihood of its occurrence, individuals will be motivated to reduce this unpleasant emotional state. If the message also

Understanding the Basis of Health Behavior contains recommendations for action, then one way in which individuals can reduce this state of arousal is to follow the communicator's advice. If the message does not contain effective behavioral advice, then maladaptive coping reactions may follow such as denial or avoidance. Janis proposed that fear appeals may be most effective when a medium level of fear is evoked. Under such conditions the cognitive responses that promote adaptive reactions (e.g., following behavioral advice) outweigh those that promote maladaptive reactions (e.g., denial). However, later work has failed to confirm this hypothesis (Sutton, 1982). Leventhal (1970) made a similar distinction between adaptive and maladaptive reactions in the parallel response model which differentiates between two independent control processes that are initiated by a fear appeal. The first, fear control, focuses on attempts to reduce the emotional threat (e.g., avoidance) while the second, danger control, focuses on attempts to reduce the threatened danger (e.g., following behavioral advice). The parallel response model is important in proposing that protection motivation results from danger control processes (i.e., cognitive responses) rather than from fear control processes (i.e., emotional responses). Roger's (1983) (PMT) outlines the cognitive responses resulting from fear appeals in more detail (see Figure 3). It is argued that various environmental (e.g., fear appeals) and intrapersonal (e.g., personality variables) sources of information can initiate two appraisal processes: threat appraisal and coping appraisal. Threat appraisal, which is similar to Lazarus and Launier's (1978) primary appraisal, focuses on the source of the threat and the factors that may increase or decrease the probability of the maladaptive response. Both the perceived severity of the threat and the individual's perceived vulnerability to the threat are seen to inhibit maladaptive responses. However, there may be a number of intrinsic (e.g., pleasure) and extrinsic (e.g., social approval) rewards which may serve to increase the likelihood of maladaptive responses. Coping appraisal, which is similar to Lazarus and Launier's (1978) secondary appraisal, focuses on one's ability to cope with the threat and the factors that may increase or decrease the probability of an adaptive response. Both the belief that the recommended action will be effective in reducing the danger (i.e., response efficacy) and the belief that one is capable of performing the recommended action (i.e., selfefficacy) are likely to increase the probability of an adaptive response, although various response costs (e.g., financial cost) associated with

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performing an adaptive response will serve to inhibit such a response. Protection motivation results from the two appraisal processes and is a positive function of beliefs about severity, vulnerability, response efficacy, and self-efficacy, and a negative function of beliefs about the rewards associated with the maladaptive response and the response costs of the protective behavior. Moreover, for protection motivation to be elicited, it is necessary for the rewards associated with the maladaptive response to be outweighed by perceptions of severity and vulnerability, and the response costs of the protective behavior to be outweighed by perceptions of response efficacy and self-efficacy. Protection motivation, which is usually measured by behavioral intentions, is seen to arouse, direct, and sustain protective behavior. 8.01.3.5.2 Review of research Protection motivation theory provides a framework for understanding both the effects of fear appeals and the social cognitive variables underlying health behavior. As a result, tests of PMT have taken two forms. In the first, the key components of PMT are manipulated in persuasive communications and their effects on protection motivation tested (see Section 8.01.4.1). In the second, PMT is considered as a general attitude±behavior model and its components used as predictors of health behavior. This work is reviewed below. One area in which PMT has been used as a general attitude±behavior model is in relation to cancer-related preventive behavior. In one of the few longitudinal tests of PMT, Hodgkins and Orbell (1998) examined the social cognitive predictors of breast self-examination (BSE) in a sample of young women (17±40 year olds) over a one-month period. Each of the main components of PMT was measured (i.e., severity, vulnerability, response efficacy, self-efficacy) as well as the response costs of performing BSE (e.g., I would feel awkward examining my breasts). In a path analysis, only self-efficacy was related to intentions to perform BSE. Time one behavioral intention was in turn found to be the most important predictor of performance of BSE at one month follow-up. Similar results have been reported by Seydel, Taal, and Wiegman (1990) who found response efficacy and self-efficacy to be predictive of intentions to engage in, and concurrent performance of, a number of cancer-related preventive behaviors. Boer and Seydel (1996) also found response efficacy and self-efficacy to be predictive of intentions to participate in mammography screening.

16

Health Behavior

SOURCES OF INFORMATION

Threat appraisal Perceived vulnerability

Environmental Fear appeals

Perceived severity

Observation Intrinsic rewards Intrapersonal Personality

Extrinsic rewards Protection Motivation

Prior experience

Behavior

Coping appraisal Response costs Other external variables Age, sex, occupation, socioeconomic status, religion, education

Response efficacy

Self-efficacy Figure 3 Protection motivation theory.

A second area of application of PMT has been in relation to AIDS risk-reducing behaviors such as condom use. Aspinwall, Kemeny, Taylor, Schneider, and Dudley (1991) examined the ability of the PMT components to predict reductions in a number of AIDS risk-reducing behaviors in a sample of gay men over a sixmonth period. The results showed that strong levels of self-efficacy and a high level of perceived vulnerability at time one were predictive of a reduction in the number of sexual partners over the six-month follow-up period. In addition, self-efficacy also emerged as the most important predictor of reductions in the number of anonymous sexual partners. Van der Velde and van der Pligt (1991) used PMT as a framework for assessing the coping responses of heterosexual men and women and homosexual men with multiple partners. Considering the heterosexual sample first, it was found that vulnerability, response efficacy, and self-efficacy all had a direct positive effect on behavioral intentions to use condoms. In addition, severity had an indirect effect on

behavioral intentions through a measure of fear. Similar results were found with the homosexual sample with response efficacy, self-efficacy, and severity having a positive effect on behavioral intentions to engage in safe sex. However, contrary to expectations, a negative relationship was found between vulnerability and behavioral intentions. In a sample of male and female adolescents, Abraham, Sheeran, Abrams, and Spears (1994) found that self-efficacy had a positive influence and response costs (i.e., concern about reputation) had a negative influence on behavioral intentions to use a condom. In addition, vulnerability had a negative effect on behavioral intentions to limit the number of sexual partners. In a cross-sectional study of male and female heterosexuals, Bengel, Beltz-Merk, and Farin (1996) found that self-efficacy was related to a greater use of condoms and fewer sexual partners. However, perceptions of vulnerability were related to greater use of condoms, but also higher number of sexual partners.

Understanding the Basis of Health Behavior Taken together, the above results suggest that PMT is a useful framework for understanding HIV-related protective behavior. Self-efficacy emerges as the most important predictor of such behavior, with response efficacy and severity also emerging as significant predictors in some studies. A conflicting pattern of results has been found with the vulnerability component. Similar conclusions have been reached by Farin (1994) in a meta-analysis of PMT and HIVprotective behavior, in which self-efficacy and response efficacy emerged as the best predictors of protective behavior. However, these two components were only able to explain 2.2% and 1.8% of the variance in such behavior. Severity was seen to be less important, and vulnerability had a conflicting pattern of results. 8.01.3.5.3 Commentary Despite relatively few studies in the area, the above review highlights the potential utility of PMT as a framework for considering the social cognitive predictors of health protective behavior. However, there are a number of issues which future work needs to address. First, some studies have reported a positive relationship between perceptions of vulnerability and protection motivation, while others have reported a negative relationship. Seydel et al. (1990) suggest that the negative relationship between vulnerability and intentions to engage in cancer-related preventive behavior in their study may be due to a ªdefensive avoidanceº style of coping, in which perceptions of vulnerability to cancer may lead to feelings of anxiety which may inhibit adaptive responses and promote avoidance. However, it is more likely that the mixed pattern of results is due to measurement issues. As Weinstein and Nicolich (1993) argue, a negative correlation may be expected between perceptions of vulnerability and concurrent protective behavior given that one's current behavior may be used to make vulnerability judgments. In contrast, a positive correlation may be expected between perceptions of vulnerability and future protective behavior to the extent that perceptions of vulnerability motivates protective behavior. Considering behavioral intentions, individuals may feel vulnerable and therefore intend to engage in a protective behavior (i.e., positive correlation), or may feel vulnerable because they do not intend to engage in a protective behavior (i.e., negative correlation). Clearly, more consideration needs to be given to the measurement of perceptions of vulnerability and the potential use of conditional measures of risk. Second, while PMT provides a framework for considering the social cognitive predictors of

17

protective behavior, a number of researchers have commented on its lack of specification in terms of the nature of its components and the relationships between them (Bengel et al., 1996). For example, Rogers (1983) states that the response costs of the protective behavior need to be outweighed by perceptions of response efficacy and self-efficacy for protection motivation to be elicited. However, no guidance is given as to how these variables are to be measured and combined in order to predict protection motivation. Overall, PMT identifies many of the social cognitive variables which are important predictors of health behavior. It shares a number of similarities with the HBM (i.e., measures of perceived susceptibility, severity, benefits, and barriers) although it also includes self-efficacy, which has been found to be one of the most powerful explanatory constructs in relation to health behavior (Schwarzer & Fuchs, 1996), and a measure of behavioral intention, which is seen to mediate the influence of threat appraisal and coping appraisal. It is also important for providing a synthesis between social cognitive approaches and coping models as outlined by Lazarus and Launier (1978). However, to date there have been relatively few longitudinal tests of PMT in relation to health behavior. Such studies should help clarify some of the issues raised above. 8.01.3.6 Self-efficacy 8.01.3.6.1 Model description Self-efficacy is one of the most powerful predictors of health behavior (K. A. Wallston, 1992). It has its origins in Bandura's (1977) social cognitive theory which states that behavior is a function of both incentives (i.e., reinforcements) and expectancies. Three kinds of expectancies can be identified, these being situation-outcome expectancies which refer to beliefs about how events are connected, outcome expectancies which refer to beliefs about the consequences of performing a behavior, and self-efficacy expectancies which refer to beliefs about one's ability to perform the behavior. Thus in order to perform a health behavior, individuals must value their health (i.e., incentive), believe that their current lifestyle poses a threat to their health (i.e., situation-outcome expectancy), believe that adopting the new behavior will reduce the threat to their health (i.e., outcome expectancy) and believe that they are capable of performing the behavior (i.e., self-efficacy expectancy). While all these beliefs are seen to be important in the initiation and maintenance of health behavior, self-efficacy

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Health Behavior

expectancies are seen to be the most important. Individuals with strong self-efficacy beliefs are believed to develop stronger intentions to act, to expend more effort to achieve their goals, and to persist longer in the face of barriers and impediments (Bandura, 1991). Self-efficacy beliefs are therefore believed to play a crucial role in the determination of health behavior. According to Bandura (1977, 1982), such beliefs can be conceptualized and measured in terms of three parameters; magnitude, strength, and generality. The first parameter refers to the level of difficulty of the behavior. Individuals with low-level expectations feel capable of performing only very simple behaviors, whereas individuals with high-level expectations feel capable of performing even the most difficult of behaviors. In this way it is possible to assess individuals' expectations about their level, or magnitude, of performance. The second parameter refers to individuals' confidence that they could perform a specific behavior, while the third parameter refers to the generality of expectations across situations or domains. The measurement of self-efficacy usually focuses on the strength of the selfefficacy expectation (e.g., ªI am confident that I can refrain from smokingº), although it will often incorporate the magnitude of expectation (e.g., ªI am confident that I can refrain from smoking, even if someone offers me a cigaretteº).

Wandersman, 1991; Kok, de Vries, Mudde, & Strecher, 1991; Morrison, Gillmore, & Baker, 1995). While the majority of studies examining the relationship between self-efficacy and AIDS risk-reducing behaviors have reported significant results, a few studies have failed to do so (Boyd & Wandersman, 1991; Morrison et al., 1995). Considering exercise behavior, selfefficacy has been found to be an important predictor of both intentions to engage in regular exercise and actual exercise behavior (Desharnais, Bouillon, & Godin, 1986; McAuley, 1993; Sallis, Howell, Hofsteffer, & Barrington, 1992). Finally, self-efficacy has also been related to dieting and weight control (Bernier & Avard, 1986; Hofstetter, Sallis, & Howell, 1990; Jeffrey et al., 1984). For example, Jeffrey et al. examined the relationship between self-efficacy and weight loss following participation in a behavioral treatment program over a two-year period. Making a distinction between ªemotionalº self-efficacy (i.e., confidence in one's ability to refrain from eating during various emotional states) and ªsituationalº self-efficacy (i.e., confidence in one's ability to refrain from eating in various situations), they found pretreatment measures of both types of self-efficacy to be predictive of weight loss at one and two years. However, post-treatment measures of self-efficacy were not so powerful with only ªsituationalº self-efficacy predictive of weight loss at one year.

8.01.3.6.2 Review of research The self-efficacy construct has been successfully applied to the prediction of a range of health behaviors (see Bandura, 1991; O'Leary, 1985; Schwarzer & Fuchs, 1996). One of the main areas of application has been in relation to smoking cessation (Condiotte & Lichtenstein, 1981; Colletti, Supnick, & Payne, 1985; Kavanagh, Piere, Lo, & Shelley, 1993). These studies have found self-efficacy to be a consistent predictor of smoking cessation. For example, Condiotte and Lichtenstein (1981) found that post-treatment self-efficacy beliefs were predictive of both the probability of relapse and the amount of time before relapse. In addition, a close correspondence was noted between selfefficacy beliefs for a range of specific tempting situations (e.g., after a meal, when drinking coffee) and the actual situation in which the relapse occurred. The results therefore indicate that self-efficacy is important not only in predicting the likely success of smokers who are trying to quit, but also the situations in which they are most likely to relapse. Self-efficacy has also been related to AIDS risk-reducing behaviors, such as condom use (Basen-Engquist & Parcel, 1992; Boyd &

8.01.3.6.3 Commentary The self-efficacy construct has been found to be one of the most important predictors of health behavior (K. A. Wallston, 1992). However, there are a number of issues which future work needs to address. First, the relationship between outcome and self-efficacy expectancies has been a source of some debate (Corcorcan, 1991; Kirsch, 1986, Maddux, 1993). As Schwarzer (1992) argues, there may be a temporal and causal order among the two types of expectancy beliefs inasmuch as individuals are unlikely to consider their ability to perform a behavior before first considering the efficacy of the behavior. Bandura (1991) argues that the effect of outcome expectancies on intentions and behavior are partly governed by self-efficacy expectancies; even if outcome expectancy is high, performance of a behavior is unlikely if self-efficacy is low. As a result, when selfefficacy is partialed out, any relationship between outcome expectancy and behavior should disappear. However, some research has indicated that outcome and self-efficacy expectancies can be independent predictors of intentions and behavior (Maddux, 1993).

Encouraging the Adoption of Health Behaviors Second, the role of incentives, or outcome values, has tended to be overlooked in research with the self-efficacy construct. This is despite the fact that a large body of research in expectancy value theory has found outcome value to be an important predictor (Kirsch, 1986; McCelland, 1985). Unfortunately, those studies which have considered the role of outcome and self-efficacy expectancies in conjunction with incentives or outcome values have produced mixed results (Maddux, Norton, & Stoltenberg, 1986; Manning & Wright; 1983). Third, there is some disagreement over whether it is appropriate to consider generalized self-efficacy expectancies. According to Bandura's (1977) original conceptualization, selfefficacy beliefs should focus on specific behaviors in specific situations. Self-efficacy is not seen to be a personality trait as self-efficacy beliefs can be seen to vary across behaviors and situations, although self-efficacy beliefs may generalize to other behaviors and situations to the extent that the new behaviors require similar skills and the new situations have similar features (Bandura, 1986). Nevertheless, Schwarzer and Fuchs (1996) have argued that self-efficacy can be viewed as a generalized trait reflecting a personal resource factor, pointing to studies which have successfully employed generalized measures of self-efficacy to predict behavior (Mittag & Schwarzer, 1993; Snyder et al., 1991; K. A. Wallston, 1992). Generalized self-efficacy may be closely related to dispositional optimism (Scheier & Carver, 1992), although on an empirical level Schwarzer (1994) found a correlation of only 0.60 between dispositional optimism and generalized selfefficacy. In conclusion, self-efficacy has been found to be one of the most powerful and consistent predictors of health behavior. For this reason alone, it is not surprising that it has been incorporated into a number of the main social cognition models of health behavior; for example, Rogers' (1983) PMT and Ajzen's (1991) TPB. In addition, Rosenstock, Strecher, and Becker (1988) have called for the inclusion of self-efficacy in the HBM. It is likely that selfefficacy will continue to attract considerable interest and continue to be a key predictor of health behavior. 8.01.4 ENCOURAGING THE ADOPTION OF HEALTH BEHAVIORS 8.01.4.1 Intervention Studies The models presented earlier in this chapter outline some of the key social cognitive determinants of health behavior. In this section

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we consider the use of these models in the design of interventions to encourage new health behaviors. As Fishbein (1993) has argued, the ultimate test of the utility of these models lies in their ability to inform the design of effective interventions. To the extent that these models outline the key social cognitive determinants of health behavior, interventions which target these variables should lead to associated changes in behavior. However, to date there have been relatively few theoretically driven interventions. As a result there is still a need for more tests of these models ªin actionº (Fishbein, 1993). Brawley (1993) argues that we need to take account of the practicality of employing SCMs when designing interventions. In short, a model which offers a high level of practicality must be shown to have predictive utility, to describe the relationships between key constructs, to offer guidelines for the assessment of these constructs, to allow the translation of these constructs into operational manipulations, and to provide the basis for detecting the reasons why an intervention succeeds or fails. The SCMs considered here can be been seen to have a high level of practicality and therefore should provide a good framework for the design of effective interventions. One model which has been used widely to design interventions is the PMT. A good example of the use of PMT in this respect is provided by Wurtele and Maddux (1987) in their study on exercise intentions and behavior. In this study essays recommending beginning a regular exercise program were presented to a sample of nonexercising female undergraduates. The essays were designed so that each of the PMT's main components (i.e., severity, vulnerability, response-efficacy, and self-efficacy) were independently manipulated, resulting in a 2626262 between-subjects factorial design with two levels (present vs. absent) of each factor. For example, the severity message emphasized the seriousness of the threat of a sedentary lifestyle by vividly describing the negative effects of a heart attack (e.g., ªNauseated, the victim vomits; pink foam comes out of the mouth. The face turns ashen grey, sweat rolls down the face . . .º). After reading an essay, subjects completed a questionnaire containing measures of the main components of PMT and were followed up two weeks later to chart any changes in exercise behavior. Manipulation checks revealed that each of the messages successfully manipulated their corresponding component from PMT, as is the case in most PMT intervention studies. Of more interest was the effect of the messages on protection motivation as measured by

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behavioral intentions to start a regular exercise program. The results showed that only the vulnerability and self-efficacy messages had a significant effect on behavioral intentions, although a three-way interaction between vulnerability, response efficacy, and self-efficacy was also found. In relation to changes in exercise behavior over the two-week follow-up period, a significant interaction was found between severity and self-efficacy, such that the self-efficacy message only had a significant effect when the severity message was absent. Overall, studies which have used PMT to design interventions have shown that selfefficacy is the most powerful component that can be manipulated in persuasive messages (Boer & Seydel, 1996). In addition, manipulating response efficacy has been found to have a significant effect on intentions in a majority of studies. These two variables have been shown to influence intentions to engage in a range of health behaviors including exercise (Stanley & Maddux, 1986), quit smoking (Maddux & Rogers, 1983), dietary intake (Wurtele, 1988), and breast self-examination (Rippetoe & Rogers, 1987). Manipulating perceptions of vulnerability has been found to influence intentions in other studies (Maddux & Rogers, 1983; Wurtele & Maddux, 1987), while manipulating perceptions of severity has not been found to have an influence on behavioral intentions. However, many PMT intervention studies have combined the vulnerability and severity components so that the potential threat of a maladaptive behavior is emphasized. This has been found to have a significant effect on intentions in relation to alcohol use (Stainback & Roger, 1983), dental flossing (K. H. Beck & Lund, 1981), dietary behavior (Wurtele, 1988), information seeking (Brouwers & Sorrentino, 1993), and breast self-examination (Rippetoe & Rogers, 1987). Some studies have focused more specifically on enhancing feelings of self-efficacy as a means for encouraging health behavior change. As Bandura (1986) outlines, there are four main sources of self-efficacy, each of which could be addressed in interventions. First, individuals can develop feelings of self-efficacy from personal mastery experience. For example, it may be possible to split a behavior into various subgoals, such that the easiest subgoals are achieved before more difficult tasks are attempted. Second, individuals may develop feelings of self-efficacy through observing other people succeed on a task (i.e., vicarious experience). Third, it is possible to use standard persuasive techniques to try to instil feelings of self-efficacy. Finally, one's physiological state may be used as a source of information, such

that high levels of arousal or anxiety may indicate to the individual that he or she is not capable of performing a given action. As a result, relaxation techniques may be employed to help maintain feelings of self-efficacy. Each of these techniques have been used in intervention studies to try to enhance feelings of self-efficacy. Maibach, Flora, and Nass (1991) report the results of a year-long community health campaign to encourage the adoption of health behaviors. The campaign materials were all designed to reflect the main principles of Bandura's (1986) social cognitive theory and used a number of strategies for enhancing feelings of self-efficacy and encouraging behavior change attempts. These included encouraging participants to set behavior change goals, using community members who had successfully changed their behavior as role models, using health experts to give advice about behavior change and focusing on the skills needed to support behavior change. The campaign was found to successfully increase feelings of self-efficacy which, in turn, were related to the adoption of new health behaviors. A number of interventions have focused on more situation-specific feelings of self-efficacy. Stevens and Hollis (1989) designed an intervention to help smokers quit smoking which built on the results of earlier research which had shown that situation-specific ratings of selfefficacy were predictive of the circumstances in which relapses occurred (Condiotte & Lichtenstein, 1981). Abstinent smokers have identified potential relapse situations in which they perceived low levels of self-efficacy and then developed and rehearsed appropriate coping strategies over three weekly meetings. This intervention led to a greater abstinence rate at one year than both a discussion-only intervention and a no-treatment control. Other studies which have attempted to improve behavioral skills to enhance feelings of self-efficacy have produced positive results in relation to alcohol use (Baer et al., 1992) and dental hygiene (McCaul, Glasgow, & O'Neil, 1992). Few studies have attempted to use the TRA/ TPB as a framework for developing interventions, despite quite clear guidelines outlined by Ajzen and Fishbein (1980). In fact, van den Putte (1993) reports a mere five studies which have followed such an approach, with only limited evidence for success compared to approaches not based upon the model. For example, Brubaker and Fowler (1990) examined the effect of persuasive messages upon men's intentions to perform testicular self-examination. A persuasive message based on the theory of reasoned action was found to increase intentions to perform testicular self-examination compared

Limitations and Extensions of Existing Models to a no-message control, but was no more effective than a knowledge-only message. More recently, Parker, Manstead, and Stradling (1996) have developed intervention videos based on the TPB to discourage speeding in residential areas by car drivers. The results showed that the normative belief video had a significant effect on a postintervention measure of normative beliefs, while the behavioral belief video had no effect on behavioral beliefs, and the perceived behavioral control video had a negative effect on perceptions of control. Overall, the videos had no effect on subjects' expectations of speeding in residential areas over the next year. Finally, there is some evidence that tailoring interventions to fit in with individuals' existing belief orientations may lead to more effective interventions. Chambliss and Murray (1979a) devised a weight control program in which participants were given placebo medication to help control their metabolism. After two weeks participants in one group were debriefed about the placebo medication and encouraged to attribute any weight loss to their own efforts over the previous two weeks. Participants in a second group were given further information about the efficacy of the medication and encouraged to attribute any weight loss to the medication. At two-week follow-up, a significant interaction was found between the giving of information and participants' preprogram locus of control orientation, such that ªinternalsº lost more weight than ªexternalsº in the self-efficacy information group, while the opposite pattern of results was found for the drug information group. Similar results have been reported by Chambliss and Murray (1979b) in relation to smoking cessation. These results led to further work exploring the match between the control orientation of the intervention and participants' existing health locus of control beliefs. For example, Quadrel and Lau (1989) found an interaction between health locus of control beliefs and the control orientation of a message to encourage breast self-examination among female students. In particular, those females with strong internal health locus of control beliefs who received a message in a ªcontrolº frame were more likely to perform breast selfexamination at follow-up, although this effect was reversed if a neutral reminder was sent. Further evidence for a ªmatching hypothesisº has been provided in relation to weight reduction (B. S. Wallston, Wallston, Kaplan, & Maides, 1976) and smoking cessation (Best, 1975). Despite offering a high level of practicality, there have been relatively few studies testing SCMs ªin action.º As the above review shows,

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practical applications of these models have met with some success and suggest that health behavior change interventions may have a lot to gain from using these models as a guiding framework. As Lewin (1951) concludes, ªthere is nothing so practical as a good theoryº (p. 169). 8.01.5 LIMITATIONS AND EXTENSIONS OF EXISTING MODELS 8.01.5.1 Limitations of Current Models The SCMs described above represent one widely used approach to understanding health behaviors. Here we provide a critique of this approach to understanding health behavior and outline ways in which research might develop through consideration of additional theoretical constructs, the processes by which cognitions influence behavior, stage models of behavior change, potential integrations, and future directions for work in this area. There are several advantages of using social cognition models in health psychology (Conner, 1993; Conner & Norman, 1996b). First, they provide a clear theoretical background to research, guiding the selection of variables to measure, the procedure for developing reliable and valid measures, and how these variables are combined in order to predict health behaviors and outcomes. Second, to the extent that the models identify the important variables in predicting health outcomes and behaviors, they enable us to develop effective behavioral interventions. Third, the models provide us with a description of the cognitive processes determining individuals' motivation to perform different behaviors. There are parallel disadvantages in too exclusive a focus upon social cognition models as the way to understand health behaviors. First, in providing such an explicit general theoretical framework, these models may lead us to neglect variables (cognitive and noncognitive) potentially important in understanding a particular health behavior or outcome. For example, the decision to use a condom may be a function of cognitions, emotional reactions, and also a complex interaction between the individuals involved. Social cognition models on their own are unlikely to provide considerable predictive power in these situations. In addition, SCMs are open to extension when empirically and theoretically justified (Fishbein, 1993). Second, while such models provide us with targets for interventions to produce behavior change, they do not specify how such cognitions are best changed. Effective interventions need to consider both the targets (e.g., cognitions) and the persuasion process itself. This process of

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persuasion is described by other models of social cognitive processes (e.g., the elaboration likelihood model: Petty & Cacioppo, 1986; the systematic-heuristic model: Chaiken, Lieberman, & Eagly, 1989). In addition, applications of SCMs should not lead to neglect of alternatives to persuasion in producing behavior change such as extrinsic changes to the rewards and costs of a given behavior. For example, increased taxation and legal restrictions can be effective in producing change in health behaviors either in isolation or in tandem with persuasion. Third, although SCMs have furthered our understanding of motivational processes and their influence upon behavior, they have neglected other aspects of behavior change. For example, few of the models consider volitional processes beyond attempting to explain intentions (Bagozzi, 1993; Gollwitzer, 1990). However, many individuals who intend to change fail to do so. Hence, we need to consider the other important volitional processes associated with attempts to change and maintain behavior change (see Norman & Conner, 1996a; Schwarzer & Fuchs, 1996).

8.01.5.2 Additional Theoretical Constructs While the social cognition models outlined here provide an important framework for considering the social psychological determinants of health behavior, it is clear that in some instances they only account for a modest amount of the variance in health behavior. For example, Sheppard et al. (1988) noted that about 10% of studies they reviewed reported correlations between behavioral intentions and behavior below 0.2. This suggests that key variables have failed to be included in these models. We review here the most promising of such variables appearing in the literature: measures of norms, anticipated affective reactions, self-identity, and past behavior. A number of researchers have argued that further attention needs to be paid to the concept of normative influences (e.g., Cialdini, Reno & Kallgren, 1990; Conner, Martin, Silverdale, & Grogan, 1996). Of the major SCMs, only the TPB incorporates perceived social pressures to perform a behavior as a predictor of intentions. Based upon social identification theory, Terry and Hogg (1996) suggest that such (injunctive) normative measures might be more predictive of behavior if they employed a measure of group identification rather than motivation to comply (e.g., I identify with my friends with regard to smoking). Similarly, Gibbons and Gerrard (1995, 1997) have noted the need to consider

social comparison processes and how the social image or prototype of the person who performs a particular behavior influences the performance of various health behaviors (particularly among young people). Other researchers have suggested other forms of normative influence we might consider. These include descriptive norms and personal or moral norms. Descriptive norms are perceptions of the behavior of salient others. For example, Jane's eating behavior may be influenced not only by her perceptions of what others think she should eat, but also perceptions of what they actually do eat. Several studies have reported that perceptions of others' behavior contributed to the prediction of intentions independently of perceived injunctive norms (e.g., Conner et al., 1996; De Vries, Backbier, Kok, & Dijkstra, 1995; Grube, Morgan, & McGee, 1986). Personal, or moral, norms are the individual's perception of the moral correctness or incorrectness of performing a behavior (Ajzen, 1991; Sparks, 1994) and take account of, ª. . . personal feelings of . . . responsibility to perform, or refuse to perform, a certain behaviorº (Ajzen, 1991, p. 199). Moral norms should have an important influence on the performance of those behaviors with a moral or ethical dimension (L. Beck & Ajzen, 1991; Gorsuch & Ortberg, 1983; Kurland, 1995). A number of studies have found measures of moral norms to be predictive of blood donating behavior (Pomazal & Jaccard, 1976; Zuckerman & Reiss, 1978) as well as intentions to donate organs (Schwartz & Tessler, 1972), eat genetically produced food (Sparks, Shepherd, & Frewer, 1995), buy milk (Raats, 1992), use condoms (Nucifora et al., 1993), and commit driving violations (Parker, Manstead, & Stradling, 1995). Anticipated affective reactions to the performance or nonperformance of a behavior may also be an important determinant of behavior (Triandis, 1977; Van der Pligt & de Vries, 1998), especially in situations where the consequences of the behavior are unpleasant or negatively affectively laden. In the 1990s research has focused on the influence of anticipated regret (Parker et al., 1995; R. Richard & van der Pligt, 1991; Richard, Van der Pligt, & de Vries, 1995, 1996a, 1996b). It is argued that if individuals anticipate feeling regret after performing a behavior then they will be unlikely to perform the behavior. Richard et al. (1995, 1996a) investigated the role of anticipated regret in relation to condom use among adolescents and found such feelings to be an important predictor of intentions. Richard et al. (1996b) examined the influence of anticipated regret on subsequent behavior. Participants in their study were asked to either focus on their anticipated

Limitations and Extensions of Existing Models feelings following safe and unsafe sexual behavior or on their present feelings about these behaviors. At follow-up, participants in the anticipated feelings condition were more likely to have used condoms in casual sexual encounters in the intervening five months. The effects of anticipated affective reactions have been confirmed in studies of driving (Parker, Manstead, Stradling, Reason, & Baxter, 1992) and consumer behavior (Simonson, 1992). However, in terms of developing social cognition models of health behavior, it is possible to argue that anticipated affective reactions may be incorporated into constructs that focus on the consequences of behavior (e.g., behavioral beliefs in the TPB; see Van der Pligt & de Vries, 1998). The concept of self-identity has also been suggested as a predictor of behavior (Biddle, Bank, & Slavings, 1987; Charng, Piliavin, & Callero, 1988). For example, the extent to which individuals think of themselves as ªhealthy eatersº should predict their dietary intentions and behavior. In support, Sparks and Shepherd (1992) found that respondents who thought of themselves as ªgreen consumersº had stronger intentions to consume organic vegetables. Sparks (1994) noted that self-identity may simply be a proxy for past behavior, although Sparks and Shepherd (1992) found that the relationship between self-identity and future intentions remained when past consumption of organic vegetables was controlled for. Selfidentity as someone who is concerned about the health consequences of one's diet has also been related to intentions to reduce fat consumption (Sparks, Shepherd, Wieringa, & Zimmermanns, 1995), although in an earlier study Sparks, Shepherd, Wieringa, and Zimmermanns (1994) failed to find an independent effect for selfidentity. Role identity (regarded as synonymous with self-identity) was measured by Theodorakis (1994) and found to be a significant predictor of exercise behavior. Future work needs to assess the influence of self-identity across of range of behaviors as it may be the case that self-identity is only important in a restricted range of situations. The influence of past on current behavior in SCMs has attracted much attention. It is argued that many health behaviors are determined by one's previous behavior rather than cognitions. The argument is based on the results of a number of studies showing past behavior to be the best predictor of future behavior. For example, Mullen, Hersey, and Iverson (1987) found initial behavior to be the strongest predictor of the consumption of sweet and fried foods, smoking, and exercise over an eightmonth period. Similar results have been

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reported in relation to drug use (Bentler & Speckart, 1979; Huba, Wingard, & Bentler, 1981), exercise (Godin, Valois, & Lepage, 1993; Norman & Smith, 1995; Valois, Desharnais, & Godin, 1988), breast self-examination (Hodgkins & Orbell, 1998), attendance at health checks (Norman & Conner, 1993, 1996b) and seat belt use (Sutton & Hallett, 1989). Such results have led to calls for past behavior to be considered as an independent predictor of future behavior (Bentler & Speckart, 1979; Fredricks & Dossett, 1983). However, there are problems with this view. Ajzen (1988) argues that the effects of past behavior on future behavior should be mediated by the variables included in social cognition models; past behavior shapes individuals' beliefs about the behavior in question, and it is these cognitions that determine subsequent behavior. When past behavior is found to have a direct effect on future behavior it is because key social cognitive variables have not been considered (Ajzen, 1991). There has also been focus on the concept of habit (i.e., behaving in a way you have acted before without thinking about it). Eagly and Chaiken (1993) review numerous studies where the addition of habit has added to the prediction of future behavior over and above the influence of variables such as intention, attitude, and subjective norm. Despite this evidence, few SCMs incorporate a measure of habit. A notable exception is Triandis (1977) who argues that it is possible to make a distinction between habitual and intentional behaviors. He argues that novel behaviors will be primarily determined by intention, while repeated behaviors will be primarily determined by habit. Ronis, Yates, and Kirscht (1989) make a similar distinction between habits and decisions, arguing that the performance of repeated behavior is determined by habit rather than social cognitive variables. For example, Dishman (1982) distinguished between the initiation and maintenance of behavior in relation to clinical exercise programs and found that only the initiation of exercise behavior was predicted by social cognitive variables. Sutton (1994) has proposed a further distinction between habits and routines. He argues that many health behaviors commonly considered habitual may be more appropriately considered routines. Sutton (1994) describes a routine as a sequence of behaviors which is repeated on a regular basis. However, what distinguishes them from habits is their need to be supported by selfreminders. It may be possible therefore to make the distinction between occasions when the influence of past behavior is mediated by social cognitive variables and those occasions when it

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is seen to have a direct influence via habitual responses. In particular, future work should develop measures of habit and routine that are discriminable from frequency of past behavior and outline the processes through which habit and routine determine behavior.

8.01.5.3 Processes by which Cognitions Influence Behavior One important implication of Ronis et al.'s (1989) distinction between habits and decisions is the suggestion that social cognition models may only predict health behavior under certain conditions. This issue has been addressed by Fazio (1990) in the development of the MODE model of attitude±behavior relationships. He suggests that attitudes (and presumably other cognitions) influence behavior via two distinct processes: a deliberative (or controlled) process and a spontaneous process. Most social cognition models can be labeled as deliberative processing models as they assume that behavior results from a controlled process of conscious deliberation. However, Fazio (1990) argues that individuals may only make a behavioral decision in such a manner when they have the opportunity and motivation to do so. Under other conditions, attitudes which are highly accessible in memory may determine behavior in a spontaneous fashion (Fazio, Powell, & Williams, 1989). When the spontaneous process is operating, an attitude may be automatically activated from memory following the presentation of relevant cues, with the likelihood of activation determined by the accessibility of the attitude. Once activated, the attitude shapes the perception of the attitude object in an automatic, attitude-congruent, fashion. For example, if a positive attitude is activated then this will lead the individual to attend to and notice the positive qualities of the attitude object. This automatic process of selective perception will therefore shape the individual's definition of the event, and thus determine behavior. If the event is defined on the basis of positive perceptions of the attitude object, for example, then approach behaviors will follow. In addition, it is argued that normative guidelines (e.g., social norms or rules) may also influence the definition of the event and thus may help to determine behavior in some situations. One important feature of the spontaneous processing model is that it outlines one way in which social cognitive variables (i.e., highly accessible attitudes) may determine behavior without systematic deliberation. To date, there has been little research on Fazio's model, although it has been successfully shown that

the accessibility of relevant attitudes influences the strength of the relationship between attitudes and behavior (Fazio & Williams, 1986) and that highly accessible attitudes can lead to selective perception (Houston & Fazio, 1989; Fazio & Williams, 1986). Both findings are consistent with the spontaneous processing model. This above work has important implications for SCMs and health behaviors. The SCMs outlined here are deliberative processing models inasmuch as they focus on the conscious processing of information and fail to consider spontaneous or automatic influences on behavior. Hence, current SCMs may provide only a partial account of the social cognitive determinants of behavior, that is, they may only be applicable in situations where the individual has the ability and motivation to engage in deliberative processing of information (Conner, 1993). For many behavioral decisions, simplified or spontaneous decision-making rules may be employed instead (Norman & Conner, 1993). Fazio's (1990) spontaneous model has considerable potential in helping to provide a full account of the cognitive influences on behavior. However, it is clear that most of the empirical work to date has focused on issues surrounding the activation of attitudes and their influence on perception; later components of the model have received less attention.

8.01.5.4 Stage Models of Health Behavior A number of researchers have suggested that there may be qualitatively different stages in the initiation and maintenance of health behavior, and that to obtain a full understanding of the determinants of health behavior it is necessary to conduct a detailed analysis of the nature of these stages. From a social cognitive perspective, an important implication of this position is that different cognitions may be important at different stages in promoting health behavior. One of the first stage models was put forward by Prochaska and DiClemente (1984) in their transtheoretical model of change (TTM). Their model has been widely applied to analyze the process of change in alcoholism treatment (DiClemente & Hughes, 1990), smoking cessation (DiClemente et al., 1991), head injury rehabilitation (Lam, McMahon, Priddy, & Gehred-Schutlz, 1988), and psychotherapy (McConnaughly, DiClemente, Prochaska, & Velicer, 1989). In its most recent form, DiClemente et al. (1991) identify five stages of change: precontemplation, contemplation, preparation, action, and maintenance. Individuals are seen to progress through each stage to achieve successful maintenance of a new behavior. Taking the

Limitations and Extensions of Existing Models example of smoking cessation, it is argued that in the precontemplation stage smokers are unaware that their behavior constitutes a problem and have no intention to quit. In the contemplation stage, smokers start to think about changing their behavior, but are not committed to try to quit. In the preparation stage, the smoker has an intention to quit and starts to make plans about how to quit. The action stage is characterized by active attempts to quit, and after six months of successful abstinence the individual moves into the maintenance stage characterized by attempts to prevent relapse and to consolidate the newly acquired nonsmoking status. Whilst relative widely applied, the evidence in support of the model and the different stages is at present relatively weak (see Weinstein, Rothman, & Sutton, in press). Heckhausen (1991) has similarly identified phases in the initiation and maintenance of behavior change; these being the predecisional, postdecisional, actional, and evaluative phases, which follow a similar progressive sequence as that outlined by Prochaska and DiClemente (1984). It is further suggested that different types of cognitions are important in each of these phases. So in the predecisional phase, cognitions about the desirability and feasibility of the behavior are believed to be important determinants of a desire to perform the behavior in question. This phase ends with the formation of an intention to change. In contrast, the decisional phase focuses on the development of plans and ends with the successful initiation of the behavior. In the actional phase the individual focuses on effectively achieving performance of the behavior and ends with the conlusion of the behavior. In the final, evaluative phase the individual compares achieved outcomes with initial goals in order to regulate and maintain behavior. While this four phase model of behavior was not developed for the prediction of health behavior, the potential for its application is clear (see Gollwitzer, 1993). Other stage models have been developed including the health action process approach (Schwarzer, 1992; Schwarzer & Fuchs, 1996), the precaution-adoption process (Weinstein, 1988, Weinstein & Sandman, 1992), and goal setting theory (Bagozzi, 1992, 1993; Bagozzi & Edwards, 1998). There are two important themes in each of the stage models outlined above. First, they emphasize a temporal perspective with different stages of behavior change. While the models postulate different numbers of stages, they all follow the same pattern from a precontemplation stage through a motivation stage to the initiation and maintenance of behavior. The

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important point is that these models are dynamic in nature; people move from one stage to another over time. Second, these stage models imply that different cognitions are important at different stages (Sandman & Weinstein, 1993). For example, in the earlier stages information may be processed about the costs and benefits of performing a behavior, while in the later stages cognitions become more focused on the development of plans of action to initiate and support the maintenance of a behavior. This earlier motivational phase is assumed to end with the formation of an intention and only when the level of motivation or intention reaches a particular level is the individual assumed to be likely to move on to later stages. The main SCMs of health behavior are primarily concerned with people's motivations to perform a health behavior and, as such, provide strong predictions of behavioral intentions (i.e., the end of a motivational stage). Ajzen (1991), for example, reports an average multiple correlation of 0.71 between variables in the TPB and behavioral intention. However, intentions do not always lead to corresponding actions. Studies examining the intention± behavior relationship have reported a wide range of correlations. For example, Sheppard et al. (1988) reported intention±behavior correlations ranging from 0.10 to 0.94. Clearly, many people who intend to perform a behavior fail to do so. However, the SCMs considered do not address the issue of translating intentions into action. They can be conceptualized as static models that stop at the formation of an intention without distinguishing between intenders who become actors and those who do not. As Bagozzi (1993) argues, the variables outlined in the main social cognition models are necessary but not sufficient determinants of behavior. Clearly, a detailed analysis of the social cognitive variables important in translating intentions into action is required to provide a full account of the determinants of health behavior. Relatively little detailed attention has focused on the cognitive processes underlying the successful implementation of intentions. The main social cognition models contain few measures that account for the intention± behavior gap (Abraham & Sheeran, 1993). The TPB attempts to do this by proposing a direct link between perceived behavioral control and behavior. Thus, people's perceptions about the amount of control they have over a behavior influence the likely performance of behavior independently of their intentions, although an analysis of the volitional processes underlying performance of a health behavior is required,

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and a number of researchers have focused attention on this issue (e.g., Kuhl, 1985; Schwarzer, 1992; Weinstein, 1988). Here we focus on Gollwitzer's (1993) work on implementation intentions and Bagozzi's (1992) model of goal achievement to highlight the social cognitive variables important in the initiation and maintenance of behavior. Gollwitzer (1993) made the distinction between goal intentions and implementation intentions. While the former are concerned with intentions to perform a behavior or achieve a goal (i.e., ªI intend to achieve xº), the latter are concerned with plans as to when, where, and how the goal intention is to be translated into behavior (i.e., ªI intend to initiate the goaldirected behavior x when situation y is encounteredº). Goal intentions are most like the intention construct in the TPB, although in the TPB such intentions usually refer to actions or behaviors rather than goals. The important point about implementation intentions is that they commit the individual to a specific course of action when certain environmental conditions are met; in so doing they help translate goal intentions into action. Gollwitzer (1993) argues that by making implementation intentions individuals pass over control to the environment. The environment acts as a cue to action, such that when certain conditions are met, the performance of the intended behavior follows. These ideas have similarities with Weinstein's (1988) ªmessy deskº analogy, whereby people may have intentions to achieve a number of goals (i.e., ªprojectsº) which get ªlostº on the ªmessy desk.º Which project is actually worked upon is determined by environmental factors in a similar way as outlined by Gollwitzer (1993). Gollwitzer (1993, 1996) has compiled a range of experimental evidence to support the view that the making of implementation intentions can aid the performance of intended behavior. To date, the only application of implementation intentions to the prediction of health behavior is a study by Orbell, Hodgkins, and Sheeran (1997) on breast self-examination. At the end of a questionnaire about breast self-examination, half the women were asked to indicate when and where in the next month they intended to perform breast self-examination. A one month follow-up found that 64% of these women had performed breast self-examination that month compared with only 16% of women who had not made an implementation intention, despite no difference in goal intentions. In addition, everyone in the implementation condition who actually performed the behavior reported doing so in response to the environmental cue in the implementation intention and not in response to

any other environmental cue. This suggests that the making of an implementation intention can significantly increase the performance of a behavior. In a study on exercise behavior, Kendzierski (1990) found that respondents were more likely to implement their intentions to exercise when they had engaged in some prior planning. Further work needs to establish the utility of implementation intentions in predicting health behavior. However, initial findings are encouraging and suggest that those who make such plans of action are more likely to initiate and maintain behavior. The work of Gollwitzer (1993) is important in that it identifies one way in which goal intentions may be translated into behavior. A similar but more comprehensive approach has been put forward by Bagozzi (Bagozzi, 1992, 1993; Bagozzi & Edwards, 1998; Bagozzi & Warshaw, 1990) in his model of goal achievement. He focuses on goal-directed behavior and argues that to initiate behavior individuals need to form an ªintention to tryº to achieve their desired goal. Once an intention to try has been formed, the individual focuses on the means, or instrumental acts, by which to attempt to achieve the desired goal. Considering the example of weight loss, a number of instrumental acts can be identified, including restricting between-meal foods, reducing overall calorie consumption, avoidance of high calorie foods, exercise, and so on. Bagozzi (1993) argues that for each of these instrumental acts, three appraisal tasks are performed. First, the individual considers the extent to which they are confident that they could perform the instrumental act (i.e., specific self-efficacies). Second, the likelihood that the instrumental act will help in achieving the desired goal is assessed (i.e., instrumental beliefs). Third, the individual considers an affective response towards the instrumental act (i.e., affect towards means). Once an individual initiates efforts to achieve a goal, there are a number of cognitive activities that support the successful initiation and maintenance of goal-directed behavior. First, the individual can develop plans in order to ensure that instrumental acts are performed. This involves identifying the situation or triggering conditions under which the instrumental act is performed (Bagozzi & Warshaw, 1990). This idea that certain environmental conditions may trigger behavior has a clear overlap with Gollwitzer's (1993) work on implementation intentions and Weinstein's (1988) ªmessy deskº analogy. One way in which plans are more likely to be acted upon is through the development of scripts or cognitive rehearsal, whereby the individuals imagine themselves performing the instrumental act (Anderson,

Limitations and Extensions of Existing Models 1983). Another is through the use of precommitting devices whereby the behavior is made more likely by precommitting oneself to it (e.g., avoiding eating butter at home by not having butter in the house). Bagozzi (1993) also proposes that ongoing behavior has to be monitored to ensure, for example, that the instrumental acts achieve their objectives. If any unforeseen impediments are encountered then these need to be taken into consideration and any future plans modified accordingly. These ideas overlap with Kuhl's (1985) theory of action control which identifies a number of processes by which individuals attempt to control their actions and achieve their goals. These processes may be particularly important in allowing individuals to overcome temptations to break their new behavior (see Loewenstein, 1996). Finally, goal-directed behavior is likely to be stronger and more persistent if the individual has a strong sense of commitment to the decision to try to achieve the goal and the means to achieve it.

8.01.5.5 Theoretical Integrations and Future Directions The above research demonstrates some of the ways in which research into health behaviors based upon social cognitive approaches is developing. Here we outline possible directions for the future development of an integrative social cognition model of health behavior, outline some of the basic requirements for such a model, and indicate some fruitful avenues for future research. It is clear that to fully explain health behavior it is necessary to develop a more dynamic model that examines different stages or phases in the contemplation, initiation, and maintenance of behavior. What is being proposed is an integration of current SCMs (such as the TPB) with stage models of health behavior (such as the TTM). Several authors have recommended such an integration (e.g., Courneya, Nigg, & Estabrooks, 1998; Godin, Desharnais, Valois, & Bradet, 1995; Marcus, Eaton, Rossi, & Harlow, 1994). Though the stage models considered in this chapter have suggested differing number of stages, it is likely that an integrative model should address at least four or five main stages: precontemplation, contemplation, planning, action, and maintenance (Norman & Conner, 1996a). One implication of the identification of different stages is that different cognitive variables may be important in ensuring movement from one stage to the next. In the first stage, the individuals are not thinking about

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making a change to their behavior. However, this stage may be brought to an end by a range of cues to action, as outlined in the HBM, which may motivate the individual to start thinking about performing a health-related behavior. One such cue to action may be perceived threat (i.e., perceived susceptibility and perceived severity). While perceived susceptibility and perceived severity are seen to be important determinants of behavior in the HBM, research with these dimensions has tended to show that they are relatively weak predictors of behavior. However, as Schwarzer (1992) has argued, it may be more appropriate to consider these variables to have an indirect or more distal influence on behavior. Thus they may act as a cue to action, motivating the individual to start deliberating over performing a health-related behavior, and thus ensuring movement from the first to the second stage. In the second stage, a decision-making or motivation stage, the individual is thinking about adopting a new behavior, and the stage ends when the individual forms an intention to perform the behavior. To date, most social cognition models have been primarily concerned with this stage. These models distinguish between three distinct determinants of individuals' intentions to perform a health behavior. First, are outcome expectancies, which focus on the perceived consequences of performing a behavior. These expectancies may also cover the notion of behavioral beliefs as considered in the TPB and include anticipated affective reactions. Second, are normative influences which are primarily tapped by the subjective norm and normative belief components of the TPB. This group of variables could also include descriptive norms, moral norms, and perceived social support. The third influence on individuals' intentions to perform a behavior is control beliefs (or self-efficacy expectancies) and may be based on a consideration of perceived barriers (HBM) and control beliefs (TPB). In the motivation stage, it is likely that other variables may have a more distal influence on behavioral intention via the variables outlined above. For example, health locus of control beliefs may help shape self-efficacy expectancies, self-identity and health values may influence the interpretation of the potential consequences of a behavior, and past behavior or experience may provide information which is used to determine the ease or difficulty of performing a behavior (i.e., self-efficacy). Once a behavioral intention has been formed, it has to be translated into behavior. In the third stage, the individual is therefore concerned with planning; focusing on the specific actions or instrumental acts that need to be performed and

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Health Behavior

the resources required to support them. Thus, a number of authors have highlighted the importance of action plans in this stage (Bagozzi & Warshaw, 1990; Schwarzer, 1992). Similarly, Gollwitzer (1993) focuses on implementation intentions which help ensure performance of the target behavior. Despite slight differences between definitions of these two concepts, both emphasize the need to construct fairly detailed plans of action in order to bridge the intention± behavior gap. As Schwarzer (1992) argues, selfefficacy may have an important role to play in the development and implementation of such plans, as might self-identity (Sparks & Shepherd, 1992) and a sense of commitment (Bagozzi, 1993). The planning stage is brought to an end when the individual initiates behavior. In the fourth stage, the individual has to ensure that the behavior is successfully enacted. Various cognitive processes which are concerned with the monitoring and controlling of behavior may be important in this stage. Schwarzer (1992), for example, highlights the need for action control in which the behavior is re-evaluated against initial goals in order to regulate and maintain behavior (see also Bagozzi & Warshaw, 1990; Heckhausen, 1991). As with the development of action plans, self-efficacy, self-identity, and commitment may all be important variables in ensuring that behavior is maintained. In addition, Kuhl (1985) has argued that there may be individual differences in people's propensity to engage in monitoring activities that may account for why behavior is not always maintained. These monitoring activities help to ensure that the behavior is successfully completed. The same activities will be important in the fifth, maintenance stage for ongoing behaviors, where the individual is concerned with ensuring that the behavior is successfully repeated.

8.01.6 CONCLUSIONS Health behaviors have been demonstrated to have important consequences for both the quality and length of life through influencing various disease outcomes. We have attempted to justify the interest in understanding health behaviors as a basis for attempting to change their occurrence in order to increase both length and quality of life. SCMs provide one approach to understanding health behavior in describing the important social cognitive variables underlying such behaviors. We believe that these models provide an important way of achieving these aims by providing a means for identifying useful targets for persuasion. It would seem that there is already sufficient literature to support

the contention that important determinants of health behaviors are identified in these models. Further refinement and development of these models along the lines we have suggested and reviewed may lead to even better predictions of behavior and greater understanding of health behavior and how individuals may be encouraged to change. However, persuasive messages targeted at relevant cognitions identified by SCMs may not be sufficient to produce the major behavior change necessary for health benefits to accrue. It may be that strategies which employ multiple level interventions which take account not only of the psychosocial factors influencing performance of the behavior (derived from SCMs) but also models of the process of persuasion of how people change and the context in which changes are made will be important (Glanz et al., 1990; Hockbaum & Lorig, 1992; Winett, 1985). 8.01.7 REFERENCES Abraham, C., & Sheeran, P. (1993). Inferring cognitions, predicting behaviour: Two challenges for social cognition models. Health Psychology Update, 14, 18±23. Abraham, C. S., Sheeran, P., Abrams, D., & Spears, R. (1994). Exploring teenagers' adaptive and maladaptive thinking in relation to the threat of HIV infection. Psychology and Health, 9, 253±272. Adler, N., & Matthews, K. (1994). Health psychology: Why do some people get sick and some stay well? Annual Review of Psychology, 45, 229±259. Aguirre-Molina, M., & Gorman, D. M. (1996). Community-based approaches for the prevention of alcohol, tobacco, and other drug use. Annual Review of Public Health, 17, 337±358. Aho, W. R. (1979). Smoking, dieting and exercise: Age differences in attitudes and behavior relevant to selected health belief model variables. Rhode Island Medical Journal, 62, 95±102. Aiken, L. S., West, S. G., Woodward, C. K., Reno, R. R., & Reynolds, K. D. (1994). Increasing screening mammography in asymptomatic women: Evaluation of a second-generation, theory-based program. Health Psychology, 13, 526±538. Ajzen, I. (1988). Attitudes, personality and behavior. Milton Keynes, UK: Open University Press. Ajzen, I. (1991). The theory of planned behavior. Organizational Behavior and Human Decision Processes, 50, 179±211. Ajzen, I. (1996). The directive influence of attitudes on behavior. In P. Gollwitzer & J. A. Bargh (Eds.), Psychology of action (pp. 385±403). New York: Guilford Press. Ajzen, I., & Fishbein, M. (1980). Understanding attitudes and predicting social behavior. Englewood-Cliffs, NJ: Prentice-Hall. Allied Dunbar Fitness Survey (1992). London: Health Education Authority. Allison, K. R. (1987). Perceived control as a determinant of preventive health behaviour for heart disease and lung cancer. Unpublished doctoral dissertation, University of Toronto. Amler, R. W., & Dull, H. B. (1987). Closing the gap. New York: Oxford University Press. Anderson, C. A. (1983). Imagination and expectation: The effect of imagining behavioral scripts on personal

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.02 Psychophysiological Bases of Disease ANDREW STEPTOE University of London, UK 8.02.1 INTRODUCTION

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8.02.2 THE PSYCHOPHYSIOLOGICAL RESEARCH FRAMEWORK

41 41 42 42 43 43 44 44

8.02.2.1 Stress and Coping 8.02.2.2 Research Strategies 8.02.2.2.1 Animal studies 8.02.2.2.2 Mental stress testing 8.02.2.2.3 Field studies 8.02.2.2.4 Survey studies 8.02.2.2.5 Convergence of methods 8.02.3 PSYCHOPHYSIOLOGICAL RESPONSES

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8.02.3.1 Neuroendocrine Parameters 8.02.3.1.1 Adrenal steroid stress response 8.02.3.1.2 Catecholamines and the sympathetic nervous system 8.02.3.1.3 Endogenous opioids 8.02.3.1.4 Other neuroendocrine and hormonal responses 8.02.3.2 Cardiovascular and Autonomic Parameters 8.02.3.2.1 Blood pressure, heart rate, and regional blood flow 8.02.3.2.2 Cardiac function 8.02.3.2.3 Platelets and hemostasis 8.02.3.2.4 Other physiological systems 8.02.3.3 Lipids and Glucose Metabolism 8.02.3.3.1 Insulin metabolism and abdominal obesity 8.02.3.4 Immune Parameters 8.02.3.4.1 Regulation of immune function 8.02.3.4.2 Acute stress-induced immune responses 8.02.3.4.3 Chronic changes in immune function 8.02.3.4.4 Functional significance of stress-induced immune modulation 8.02.3.5 Adaptive or Destructive? 8.02.4 THE NATURE OF PSYCHOSOCIAL DEMANDS 8.02.4.1 Life Events, Chronic Stressors, and Daily Hassles 8.02.4.2 Characteristics of Psychosocial Demands 8.02.4.2.1 Novelty, familiarity, and predictability 8.02.4.2.2 Control and lack of control 8.02.4.3 Work Characteristics, Control, and Psychophysiological Responses 8.02.4.4 Concurrent Stressors 8.02.5 RESISTANCE AND VULNERABILITY FACTORS 8.02.5.1 Personality and Behavior Patterns 8.02.5.1.1 Disease-prone personality and negative affectivity 8.02.5.1.2 Anger and hostility 8.02.5.1.3 Depression, pessimism, and optimism 8.02.5.1.4 Emotional inhibition

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45 45 46 47 47 48 48 49 50 50 51 51 52 53 53 53 54 55 55 55 56 56 57 57 58 58 58 59 59 60 60

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Psychophysiological Bases of Disease 61 62

8.02.5.2 Social Isolation and Social Support 8.02.5.3 Prior Experience of Stressful Events 8.02.6 PATHWAYS TO DISEASEÐPREDISPOSING FACTORS 8.02.6.1 8.02.6.2 8.02.6.3 8.02.6.4 8.02.6.5 8.02.6.6 8.02.6.7

Nutrition and Exercise Advanced Age Gender Ethnicity Socioeconomic Status and Education Genetic Factors Individual Patterns of Psychophysiological Responses

8.02.7 PSYCHOPHYSIOLOGICAL MODELS OF DISEASE 8.02.7.1 8.02.7.2 8.02.7.3 8.02.7.4

Physiological Physiological Physiological Physiological

Reactivity Reactivity Reactivity Reactivity

as as as as

63 63 64 64 65 65 65 66 66

a Causal Factor an Inhibitor of Host Resistance and Defense a Disruptive Factor a Trigger of Acute Clinical Events

67 68 69 70

8.02.8 CONCLUSION

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8.02.9 REFERENCES

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8.02.1 INTRODUCTION All behavioral states and activities are underpinned by variations in physiological activity, and are associated with specific patterns of autonomic nervous system, neuroendocrine, and metabolic response. The relationship between emotional disturbances and physiological function has been recognized since the work of Sherrington, Cannon and their contemporaries was carried out nearly 100 years ago. One of the fundamental concepts underlying clinical health psychology is that psychosocial factors influence the etiology and maintenance of disease through perturbation of physiological functions. This chapter will evaluate the empirical evidence supporting this concept, and will outline the theoretical framework within which psychophysiological or psychobiological processes can best be understood. The range of experimental and clinical research relevant to this topic is large, since it not only includes work on the regulation of peripheral bodily functions by the brain, but also the distinctive pathological processes implicated in individual medical disorders. The chapter begins with a discussion of the psychophysiological research framework, basic models of stress and coping, and methods of investigation and quantification. The nature and pattern of psychophysiological responses is then described, together with an outline of the psychosocial factors that influence the intensity and duration of these responses. Later sections of the chapter describe how the physiological responses elicited by psychosocial factors actually affect disease mechanisms and increase health risk. In keeping with the remit of health psychology, the focus is on nonpsychiatric ªmedicalº conditions and on peripheral rather than central

nervous system psychophysiology. Thus the role of physiological factors in problems such as depression, panic, or hypochondriasis will not be discussed. This does not imply an endorsement of Cartesian dualism, or a belief that psychiatric and nonpsychiatric disorders are regulated by different processes. Rather it reflects the specific expertise that has developed within health psychology and behavioral medicine over recent years. Many of the important medical conditions that concern health psychologists are detailed in later chapters of this volume. The present chapter therefore concentrates on general models rather than specific conditions, and problems such as high blood pressure (hypertension), diabetes mellitus, and bronchial asthma are introduced only for illustrative purposes. The arguments here build on the models of psychophysiological processes in disease that have been presented in earlier publications (Steptoe, 1980, 1984a, 1991). The major theme of this chapter is that there is now abundant evidence that psychophysiological processes have a role in a range of medical conditions. However, the nature of this role is varied, and depends on the stage of the development of the disorder, and in the ways psychophysiological processes interact with other factors and pathological mechanisms. Psychophysiological processes are implicated as cofactors in medical conditions, rather than exclusive etiological agents. As such, their importance varies across medical problems and between individuals. The era has passed in which certain diseases might be regarded as ªpsychosomatic,º while others were purely biological. Instead, a more fluid concept needs to be understood, in which emotion, behavior, and other psychosocial factors play their parts to a varying extent right across the disease spectrum. Exciting possibilities for management

The Psychophysiological Research Framework and prevention in the new models of psychophysiological processes are emerging from the literature. 8.02.2 THE PSYCHOPHYSIOLOGICAL RESEARCH FRAMEWORK Physiological adjustments are associated with the entire range of behavioral states from sleep to vigorous physical exercise. Patterns of blood flow, pulmonary function, gastrointestinal activity, and so on are adapted to sustain the motoric, energetic, and metabolic requirements of the organism. For example, acute exercise is accompanied by an increase in pulmonary ventilation, heart rate and blood pressure, preferential blood flow to skeletal muscle, and mobilization of energy supplies stored in the liver and adipose tissue. These responses maintain adequate glucose supplies to working muscle, and ensure prompt removal of waste products. In the context of disease, the physiological responses that are particularly relevant are those elicited by potential harm. Responses of this kind are typically described as psychophysiological stress responses. 8.02.2.1 Stress and Coping The definition of psychological stress is an issue that has generated a great deal of discussion and dispute, reflected in the colorful title of the chapter by Engel (1985) Stress is a noun! No, a verb!, No, an adjective! It has been argued that stress is a term that is so misused and abused that it be jettisoned altogether as a construct of serious scientific value. Nevertheless, the term has proved difficult to discard, if only as a shorthand to help define a valid area of human experience and clinical importance. Many of the problems surrounding the concept of stress have stemmed from the definition put forward by an early pioneer, Hans Selye. His definition of stress as the ªnonspecific response of the body to any demandº gave rise to two major difficulties. First, the conditions eliciting stress responses were defined so widely (as ªany demandº) as to be virtually meaningless. The second difficulty is that he introduced the idea of an undifferentiated biological stress response, characterized principally by release of the group of steroid hormones known as glucocorticoids from the adrenal glands. He failed to appreciate that the activation of neuroendocrine, autonomic, and immune pathways is delicately patterned, depending on the precise demands on the organism and the behavioral and cognitive coping responses that are mobilized.

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Weiner (1992) has eloquently deconstructed the background to Selye's model, and argues that it arose from the type of animal experiment that was carried out in the middle decades of the century. These studies utilized a variety of intense aversive experiences such as anoxia, limb fracture, extreme cold, and exposure to X rays. They involved potentially life-threatening damage, isolated the organism from its social context, and the stimuli were typically painful, unavoidable, and uncontrollable. These intense experiences, which lacked ecological relevance, masked variations in biological response produced by different contingencies and patterns of coping. They also led to the belief that only very profound and overwhelming experiences were likely to generate damaging physiological change. The remnants of this concept persist in today's literature with the emphasis placed on the study of major life events at the expense of milder everyday aversive experiences that may be cumulatively more significant. It is now recognized that stress is a biopsychosocial construct, and cannot be defined purely in terms of physiological response. The physiological responses are only part of the profile that include changes at the affective, behavioral, and cognitive levels as well. Nor can stress simply be defined as the response to aversive environmental stimulation or disturbing events. The same situation may produce quite different responses in two people, or in one individual on different occasions. Most frameworks of contemporary research and clinical practice therefore recognize that stress responses arise through interactions between demands on the one hand, and psychosocial resources on the other. Cohen, Kessler, and Gordon (1995a), for example, have defined stress as a process in which ªenvironmental demands tax or exceed the adaptive capacity of an organism, resulting in psychological and biological changes that may place persons at risk for diseaseº (p. 3). This process, and the physiological responses that may be elicited, is outlined schematically in Figure 1. The psychosocial demands (or stressors) can be defined as potential or actual threats or challenges to the integrity, survival, and reproduction of the organism (Weiner, 1992). They may be anticipated, and may be real or imaginary. In the field of health psychology, the main categories of psychosocial demand are acute life events, chronic stressors, and day-today hassles and irritations. The characteristics of these demands that make them particularly potent elicitors of psychophysiological responses are described in Section 8.02.4.2. Adaptive capacity is operationalized in terms of resistance and vulnerability factors, and

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Psychophysiological Bases of Disease

Psychosocial demands (stressors)

Resistance and vulnerability factors

Life events Chronic stressors Daily hassles

Coping responses Personality Social supports

Psychobiological stress response

Neuroendocrine Cortisol, ACTH Catecholamines Beta-endorphin Testosterone Insulin

Autonomic/ metabolic

Cardiovascular function Respiration Renal function Gastro-intestinal motility Fat metabolism, Hemostasis

Immune Immunoglobulins White cell counts Lymphocyte subpopulations Cytokines

Figure 1 Outline of the major physiological elements of the psychobiological stress response.

aspects of people's psychological makeup and social world that may render them more or less susceptible. Personality, behavioral coping style, and social resources are among the major resistance and vulnerability factors, and their role is examined in Section 8.02.5. Of course, it must be recognized that although, for convenience, demands and adaptive resources are viewed as distinct categories, they are difficult to disentangle in practice. For example, social isolation can be conceptualized both as the absence of a social resource or as a chronic stressor, while close social contact may be supportive or the source of major interpersonal conflict. Psychophysiological responses are elicited when the organism's adaptive capacity fails to match demands. Typically, this will be under conditions of over-stimulation, but it is conceivable that lack of stimulation may also lead to adverse physiological change. The physiological responses themselves include adjustment in a number of biological systems, but the most important for health risk are neuroendocrine, immunological and autonomically-mediated changes in physiological function.

8.02.2.2 Research Strategies Before the physiological systems perturbed by stressful transactions are detailed, a note about research strategies is needed. The clinical literature contains many sceptical comments about psychosocial factors in disease, typically based on negative results emerging from particular studies. It is important to recognize that evidence for a psychophysiological influence on disease does not rest with any one study or even with a single research paradigm. Rather, the evidence is assembled from a range of study types, each with their strengths and limitations. 8.02.2.2.1 Animal studies Experimental studies with animals can document the ways in which pathological changes may emerge following exposure to different types of behavioral environment. Work with animals allows precise control over genetic background, rearing, and physical surroundings; factors that are difficult to regulate in human studies. Animals can be randomized to different conditions of behavioral stimulation

The Psychophysiological Research Framework for known periods of time, so true experimental designs are feasible. Detailed physiological assessments are practical, as is concurrent measurement of central neurochemistry. As noted above, early work with animals tended to utilize physical insults; some of these methods, such as restraint stress, continue to be used (Glavin, Pare, Sandbak, Bakke, & Murison, 1994). Subsequently, experiments in which the behavioral contingencies surrounding physical insults are manipulated have helped to tease out the impact of psychological factors from the effects of pain or tissue damage. There have, for example, been numerous studies comparing controllable and uncontrollable electric shocks matched in intensity and duration, and these have demonstrated pronounced effects of behavioral control (Steptoe & Appels, 1989). However, stressors such as electric shock bear no resemblance to threats that animals encounter in their natural environments, so the value of studies on social challenges has been increasingly recognized. Social disruption and antagonism have been found to influence a range of physiological responses of potential pathological significance including blood pressure, coronary atherosclerosis (Kaplan, Manuck, Williams, & Strawn, 1993), cell-mediated and humorally-mediated immunity (Laudenslager & Fleshner, 1994), visceral fat accumulation (Jayo, Shively, Kaplan, & Manuck, 1993), and renal function (Von Holst, 1972). Animal studies have clearly demonstrated that behavioral stimuli can elicit physiological responses of pathological significance, and have also underlined the importance of coping behaviors and social position. However, caution is required in their interpretation. Situations that promote pathophysiological responses in some species do not necessarily transfer to others, and there are important strain differences within the species as well (Gilad & Gilad, 1995). The dominant regulatory mechanisms for important target responses are not necessarily the same in different species. For example, glucocorticoids may play a more prominent role in regulating immune function under stress in rodents than in humans, in whom sympathetic pathways are salient (see Section 8.02.3.4). Finally, it is important not to be swayed unduly by superficial similarities between the types of challenge that provoke pathological responses in animal models and the demands to which humans are exposed. 8.02.2.2.2 Mental stress testing Mental stress testing involves monitoring physiological responses in the laboratory or clinic during exposure to acute psychological

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challenge. A wide range of mental stress tests are employed, including cognitive and problemsolving tasks, emotionally charged interviews, public speaking tasks, upsetting movies and painful stimuli. Mental stress testing has been a dominant paradigm in cardiovascular research, and has also been utilized to investigate immune, musculoskeletal, respiratory and neuroendocrine responses. Both reactivity and recovery effects may be important (e.g., Seeman & Robbins, 1994). The value of mental stress testing has been the subject of vigorous dispute. Briefly, the advantage of mental stress testing is that responses to standardized and uniform sets of stimuli can be monitored under environmentally controlled conditions, reducing many of the sources of bias and individual difference that are extraneous to the investigation. Experimental designs can be used with randomization to different conditions, and sophisticated measurement of physiological function is possible in clinical settings. The assertion that responses to mental stress tests show poor reproducibility seems not to be true provided that care is taken with procedures, although adaptation to repeated exposure may occur (Kamarck et al., 1992). However, there are other limitations. One is that use of standardized stimuli means that conditions may be somewhat divorced from everyday life. Few people spend much of their lives carrying out mental arithmetic under time pressure, or having ice packs placed on their foreheads. The monitoring of physiological activity during conversation and speech tasks goes some way towards evaluating ecologically more relevant situations. Second, physiological responses to standardized conditions may not always be representative of function outside the laboratory or clinic. 8.02.2.2.3 Field studies Field studies are naturalistic investigations in which physiological measures are obtained while people go about their lives outside the laboratory or clinic. By taking repeated measures, it is possible to monitor the pattern of response to real-life stressors, or to assess associations with fluctuations in behavioral and emotional state. Three types of field study are relevant to psychophysiological aspects of disease. The first involves recording during challenging tasks such as parachuting, learning to fly aeroplanes, or speaking in public (e.g., Biselli, Farrace, Amelio, & Fattorossi, 1993; Van Doornen & Van Blokland, 1992). These investigations are closest to laboratory studies in that they evaluate responses to acute and relatively unusual events. The second type of

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Psychophysiological Bases of Disease

study involves repeated assessments of physiological parameters as people go about their ordinary lives. For example, repeated samples of saliva can been obtained over the day and analyzed to measure the profile of cortisol release in people exposed to different levels of daily stress (Van Eck, Berkhof, Nicolson, & Sulon, 1996). The third type of field study involves using automated portable (ambulatory) apparatus to measure physiological activity in a relatively unobtrusive fashion from free living individuals. For instance, portable electrocardiograms (EKG) and ambulatory blood pressure monitoring equipment have proved valuable for assessing psychosocial factors related to cardiovascular disease, while electromyographic (EMG) assessments of muscle tension in the neck and forehead are feasible for the investigation of headache (Hatch et al., 1991 Pickering, 1991). The main advantage of field studies is that they have ecological validity, in that physiological measures are obtained under naturalistic conditions of ongoing behavior and emotion. Studies of blood pressure in patients with hypertension suggest that ambulatory measures are even more predictive of pathological progression than are measures taken in the clinic (Pickering, 1991). The limits of field measures are essentially technological, but developments of instrumentation mean that even rather complex functions such as the dynamics of the filling and contraction of the heart can now be monitored. There are, however, a number of factors that need to be borne in mind when interpreting these data. The first is that field measures are inevitably somewhat disturbing, since people are aware of the apparatus and may modify their behavioral responses. One study of ambulatory blood pressure demonstrated that in comparison with a control day, people were less physically active on the measurement day, and rested more (Blanchard, Cornish, Wittrock, & Jaccard, 1990). Second, there are numerous extrinsic influences on physiological function that need to be taken into account, including cigarette smoking, food and caffeine intake, and patterns of sleep and activity. Perhaps most problematic is distinguishing physiological responses related to physical activity and exertion from those elicited by psychosocial factors. For example, we have recently studied ambulatory blood pressure monitored from a group of men during an eight-hour work shift, and a comparable nonwork period (Steptoe, Roy, & Evans, 1996). Blood pressure was recorded every hour using portable apparatus, and ratings of activities were made in diaries. As might be expected, blood pressure was higher over the

work than nonwork day, and the men also reported more frequent stress at work. However, the blood pressure readings were more likely to be associated with high physical activity at work than during nonwork periods, and this may have accounted in part for differences between the days. Sophisticated analytic procedures are required to take account of these factors (Schwartz, Warren, & Pickering, 1994). 8.02.2.2.4 Survey studies The last type of study in which psychophysiological processes are evaluated involves measurement of physiological parameters in epidemiological surveys or in clinical samples. Typically, the physiological markers are recorded on a single occasion rather than repeatedly, with efforts being made to standardize recording conditions as far as possible. It is sampling of this type that established high blood pressure and elevated serum cholesterol concentration as standard risk factors for coronary heart disease, and recent years have witnessed extension of the methodology to the study of psychosocial factors. For instance, the relationship between blood pressure and psychological characteristics such as anger has been assessed in several surveys (Jorgensen, Johnson, Schreer, & Kolodziej, 1996). Immune measures derived from single blood samples have been shown to be disturbed in people under the chronic burden of caring for dementing relatives (KiecoltGlaser, Dura, Speicher, Trask, & Glaser, 1991). Concentration of fibrinogen, a substance involved in the process of blood clotting, has been related to social class, and may contribute to the socioeconomic gradient in coronary heart disease (Markowe et al., 1985). Survey studies are valuable in identifying the biological parameters relevant to the influence of psychosocial disturbances on disease risk. Measures from large representative samples can be obtained at relatively low cost, prospective study designs can be employed, and potential confounders can be taken into account by statistical manipulation. However, survey studies provide limited information about the dynamics of physiological responses, their origins or consequences, and the causal sequences are often difficult to disentangle. 8.02.2.2.5 Convergence of methods Efforts are increasingly being made to integrate the different methods outlined here. This trend has been particularly prominent in the cardiovascular area, with work on the interrelationship between responses to mental stress testing and ambulatory cardiovascular

Psychophysiological Responses monitoring. The aim has been to discover whether acute blood pressure responses during behavioral tasks correlate with blood pressure levels recorded under naturalistic conditions (Turner et al., 1994). Another example is the extension of mental stress testing into the epidemiological framework, replacing the small selected samples typical of laboratory studies by large-scale evaluations (Carroll, Smith, Sheffield, Shipley, & Marmot, 1995). Developments in instrumentation technology are likely to promote this important trend, since at present the results of investigations carried out with different study types are often difficult to compare directly. 8.02.3 PSYCHOPHYSIOLOGICAL RESPONSES The psychophysiological responses relevant to disease are many and varied. Each system has a complex organization involving the integration of autonomic, hormonal, and metabolic regulatory processes. The brain mechanisms responsible are also complicated, and several neurotransmitters are implicated, including serotonin, gamma-aminobutyric acid and dopamine (Gray, 1995; Williams, 1994). The aim here is to describe the major psychophysiological responses currently thought to be relevant to disease, and briefly to outline their regulation and effects. More detailed accounts will be cited where appropriate. Measurement issues will not be discussed, since there are texts directly devoted to these topics (Cohen, Kessler, & Gordon, 1995b). 8.02.3.1 Neuroendocrine Parameters 8.02.3.1.1 Adrenal steroid stress response The adrenal steroids known as corticosteroids have held center stage in research on psychophysiological aspects of disease for many decades, largely as a result of Selye's work. There is, however, a growing feeling among investigators that this emphasis may be misplaced, originating as it does in rodent biology. In humans, the sympathetic nervous system and the catecholamines may be more important as mediators of peripheral physiological dysfunction. Nonetheless, there is no doubt about the extensive effects of corticosteroid release. Corticosteroids are produced by the cortex of the adrenal glands as a result of activity in the hypothalamic±pituitary±adrenal (HPA) axis. Neurosecretory neurons in the paraventricular nuclei of the hypothalamus contain a peptide called corticotropin releasing factor (CRF), which is transported through the hypothalamic

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hypophyseal portal system to the pituitary where it initiates the synthesis of adrenocorticotropin (ACTH) and beta-endorphin. The amygdala is in part responsible for stimulating CRF in response to stressors, while the hippocampus plays an inhibitory role (McEwen & Sapolsky, 1995). ACTH in turn travels through the circulatory system to the adrenal glands, where it stimulates production of steroid hormones such as androgens, estrogens, mineralocorticoids and glucocorticoids. The most important corticosteroid in the stress response is the glucocorticoid cortisol (corticosterone in rodents). Corticosteroid production is regulated through negative feedback loops to the hippocampus, hypothalamus, and pituitary gland. Corticosteroid receptors in the hippocampus mediate a fast feedback loop responding to increases in plasma corticosteroids by inhibiting the HPA, while glucocorticoids inhibit CRF biosynthesis in the hypothalamus and ACTH release in the pituitary through a delayed feedback circuit that responds to tonic corticosteroid levels (Checkley, 1996). The dexamethasone suppression test is a method of assessing the feedback loop by measuring the suppression of HPA function with a synthetic glucocorticoid. Other important regulators of the HPA axis are cytokines, peptides released by activated immune cells that act on the brain structures involved in corticosteroid release, and these processes will be described in Section 8.02.3.4 (Besedovsky & Del Rey, 1996). Together, the regulatory mechanisms ensure that under normal circumstances, corticosteroid production is maintained within a narrow range. Much of the cortisol secreted by the adrenals is inactive and bound to carriers. Free corticosteroids have a range of actions including stimulation of glucose production by the liver, the release of free fatty acids from adipose fat stores, the modification of water balance, alteration in vascular tone and the excretion of sodium by the kidney, the promotion of antiinflammatory responses, and immunoregulatory effects. Disruption of corticosteroid output during stress responses may have a variety of adverse effects such as the elevation of lipid concentration in the bloodstream (which may in turn be incorporated into atherosclerotic plaque), deposition of fat in abdominal adipose tissue, the suppression of some immune functions, decalcification of bone, and impaired fertility (Sapolsky, 1992; Weiner, 1992). There is evidence that blood pressure increases with glucocorticoid stimulation, and cardiovascular reactivity to sympathetic nervous stimulation is enhanced (Whitworth, Gordon, Andrews, &

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Psychophysiological Bases of Disease

Scoggins, 1989). Within the central nervous system, sustained elevation of glucocorticoid concentration may lead to damage of the hippocampus, attenuating the hippocampal inhibition of CRF production. Increased levels of glucocorticoids are associated with clinical depression, and may promote hippocampal atrophy in humans (Holsboer & Barden, 1996). Increased cortisol has been observed under a range of acutely challenging conditions in humans and animals. Early work in this area was reviewed by Mason (1968) who did much to dispel the notion that corticosteroid production bears a simple linear association with the emotional distress. Increased cortisol in the blood, urine, and saliva is found in response to mental arithmetic, speech tasks, simulated driving, and other challenges (e.g., Kirschbaum et al., 1995; Seeman et al., 1995). Chronic stress in animals has been shown to lead to a reduction in the number of corticosteroid receptors in the hippocampus, impairment of central nervous system inhibition of the HPA, and hypertrophy of the adrenal glands (Herman, Adams, & Prewitt, 1995). Results of studies of naturalistic stressors in humans have been somewhat variable, partly because measurement is complicated by circadian variations and the influence of factors such as physical exercise, smoking, caffeine, alcohol, and medication. A longitudinal investigation of an elderly population showed that plasma cortisol was elevated up to three months following severely threatening life events, and cortisol elevations are particularly marked among depressed people who experience long-term stressors (Willis, Thomas, Garry, & Goodwin, 1987). High cortisol has also been recorded from people exposed to major threats such as being a hostage of war (Rahe, Karson, Howard, Rubin, & Poland, 1990). On the other hand, ex-soldiers suffering from post-traumatic stress disorder show low cortisol levels, and an inverse relationship with intensity of combat exposure has been described (Boscarino, 1996). Despite the opinion that many types of work are stressful, the results of investigations of corticosteroid levels in people at work have been inconsistent, and it appears that only a proportion of individuals respond even to very challenging occupations such as air traffic control (Rose & Fogg, 1993). Nonetheless, day-to-day stressors or hassles have been found to stimulate increased cortisol independently of factors such as smoking, food intake, and coffee consumption (Van Eck et al., 1996). There is sufficient evidence to infer that heightened cortisol secretion may be a mechanism through which psychophysiological factors influence risk of disease.

8.02.3.1.2 Catecholamines and the sympathetic nervous system The autonomic nervous system is the branch of the nervous system that regulates the function of visceral organs, and has two divisions, the sympathetic and the parasympathetic. Many tissues are dually innervated, with stimulation of the sympathetic and parasympathetic nerves having opposite effects. For instance, heart rate accelerates under sympathetic stimulation and slows with parasympathetic (vagal) stimulation. The major neurotransmitter in the sympathetic nervous system is norepinephrine (noradrenaline) while acetylcholine is released from parasympathetic nerve terminals. The sympathetic nervous system tends to induce activation in many tissues, so the second major component of the psychophysiological stress response is the sympathetic-adrenomedullary (or sympathoadrenal) system. Norepinephrine is stored in granules in the sympathetic nerve terminals, and is released when these nerves are stimulated. Much of the neurotransmitter binds to alpha-adrenergic and betaadrenergic receptors on effector cells, while the remainder is released into the bloodstream. Sympathetic pathways also stimulate the synthesis of epinephrine (adrenaline) in the chromaffin cells of the adrenal medulla. A series of enzymes are involved in this process, including tyrosine hydroxylase, dopamine beta-hydroxylase, and phenylethanolamine N-methyltransferase, that are sometimes measured as indices of catecholamine production. The sympathetic nervous system and epinephrine from the adrenal glands typically operate in concert to stimulate a wide range of physiological responses that are summarized in Sections 8.02.3.2±8.02.3.4. Catecholamine levels in the bloodstream are not easy to measure since responses are rapid and transient, and concentrations in venous blood may not be representative of the overall level of circulating epinephrine and norepinephrine. Other techniques such as the measurement of norepinephrine spill-over from nerve terminals, electrical recording from sympathetic nerves using microneurography, and measures of adrenergic receptor density provide more direct information. These techniques indicate that sympathetic activation is not a generalized phenomenon with mental stress, since the degree of sympathetic response differs substantially across tissues (e.g., Anderson, Wallin, & Mark, 1987). However, most human laboratory and field studies have measured catecholamines from venous blood samples or from urine. In the laboratory, acute increases in epinephrine and norepinephrine have been

Psychophysiological Responses recorded in response to mental stress tests such as arithmetic, cold stimulation, and social conflict (Malarkey, Kiecolt-Glaser, Pearl, & Glaser, 1994). In field studies, elevations of catecholamines have been shown in diverse groups including the bereaved and victims of industrial disasters and sexual abuse (De Bellis, Lefter, Trickett, & Putnam, 1994; Gatchel, Schaeffer, & Baum, 1985). A substantial amount of research has been carried out into sympathoadrenal responses to work. Studies from Sweden have shown that catecholamine excretion is elevated among people on piece work or those carrying out highly mechanized work (Johansson, Aronsson, & Lindstrom, 1978). Differences between sexes and people at higher and lower work grades have been reported, with some evidence for sustained elevations of norepinephrine in the evening among women in managerial positions (Frankenhaeuser et al., 1989). Frankenhaeuser, Lundberg, and Forsman (1980) have argued that behavioral performance efficiency under challenging conditions is positively associated with catecholamine secretion. However, one of the problems interpreting catecholamine responses is that excretion is positively correlated with physical effort and with motor activity; consequently, norepinephrine may increase when people are more actively engaged in tasks. The sympathoadrenal system and the HPA axis are not independent of one another. The glucocorticoids have a role in regulating catecholamine biosynthesis in the adrenal medulla, while catecholamines stimulate ACTH release from the pituitary (Axelrod & Reisine, 1984). Under acute conditions, correlations have been observed between cortisol and sympathetically mediated responses in some but not all studies (Cacioppo, 1994). At the same time, there has been great interest in identifying situations that lead to differential release of corticosteroids and catecholamines. Extensive evidence (reviewed by Steptoe, 1983) suggests that HPA activation is associated with passivity in the face of aversive situations, with behavioral withdrawal, and with loss of control. Sympathoadrenal responses on the other hand are maximized under conditions of active efforts to cope and maintain control over the environment. This distinction may be significant when examining psychophysiological pathways to disease. 8.02.3.1.3 Endogenous opioids Beta-endorphin and the enkephalins are endogenous opioid peptides, and are derived from the same precursor molecule as ACTH. The secretion of beta-endorphin from the

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anterior lobe of the pituitary gland is regulated by CRF, and occurs in response to a wide range of painful stimuli and stressors (Madden, Akil, Patrick, & Barchas, 1977). Inescapable electric shock in rats has been shown to produce stress-induced analgesia or increased pain tolerance. One form of this analgesia is dependent on endogenous opioids, in that it is blocked by antagonists such as naloxone, and shows cross-tolerance with morphine-induced analgesia (Terman, Shavit, Lewis, Cannon, & Liebeskind, 1984). There is growing evidence that endogenous opioids are involved in the regulation of neuroendocrine stress responses (McCubbin, 1993). Serum concentration of beta-endorphin increases during mental stress tests, and assessments have also been made during naturalistic challenges such as anticipation of academic examinations (Malarkey, Pearl, Demers, Kiecolt-Glaser, & Glaser 1995; Sheps et al., 1995). When the opioid antagonist naloxone is administered under double-blind conditions, it leads to increases in stress-induced heart rate, epinephrine, ACTH and cortisol responses (Morris et al., 1990). This suggests that betaendorphin normally operates to dampen excessive responses, and is part of the organism's self-regulatory mechanism, preventing overshoot of stress-induced physiological reactions. The pathway may operate less effectively in young people at elevated risk for high blood pressure, since their cardiovascular responses to mental stressors are unchanged by naloxone (McCubbin, Surwit, Williams, Nemeroff, & McNeilly, 1989). The increase in beta-endorphin with mental stress has been shown to correlate with raised pain thresholds in patients with coronary artery disease (Sheps et al., 1995). This may be one explanation for stress-induced episodes of reduced coronary blood flow (ischemia) occurring without concomitant chest pain in so-called ªsilentº ischemia. 8.02.3.1.4 Other neuroendocrine and hormonal responses A range of other hormones are involved in psychophysiological responses. Dopamine in the brain increases in response to experimental stressors in animals, and peripheral dopamine may be particularly important in modulating gastrointestinal injury (Glavin, 1992). Reproductive function is inhibited by various components of the HPA system, with suppression of luteinizing hormone releasing hormone in the hypothalamus, and inhibition of testosterone and estrogen by glucocorticoids (Rabin, Gold, Margioris, & Chrousos, 1988). The classic studies of Christian (1970) showed that

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Psychophysiological Bases of Disease

crowding in animals impaired reproductive efficiency. Social status has also been shown to affect ovarian function in cynomolgus monkeys, with more anovulatory cycles and progesterone-deficient luteal phases in subordinate animals (Adams, Kaplan, Clarkson, & Koritnik, 1985). Hypogonadal function in middle-aged men is associated with psychosocial risks such as work-related problems, living alone, lower social class, and high levels of physical symptoms (Nilsson, Moller, & Solstad, 1995). Vasopressin and prolactin have also been studied as components of psychophysiological responses, although their significance is not yet clear (Theorell, 1992). 8.02.3.2 Cardiovascular and Autonomic Parameters Psychophysiological responses are organized hierarchically, and a series of physiological adjustments take place as a result of the neuroendocrine secretions described in Section 8.02.3.1 coupled with direct autonomic stimulation. They include changes in cardiovascular function, sweat gland activity, gastrointestinal motility and pulmonary ventilation. Not all of these responses are immediately relevant to disease risk. Studies using direct stimulation of brain regions in unanaesthetized animals indicate that emotional behaviors can be elicited that are associated with a range of damaging physiological changes such as cardiac arrhythmias, gastric erosions, and adrenal hyperplasia (Kojima et al., 1996). Cardiovascular and metabolic responses are particularly important when considering psychophysiological processes in disease. 8.02.3.2.1 Blood pressure, heart rate, and regional blood flow Blood pressure and heart rate generally increase in response to acute challenges in the laboratory. During performance of tasks such as mental arithmetic, the increase in blood pressure and heart rate is associated with vasodilation in skeletal muscle and reduced blood flow to the kidneys, skin, and viscera (Tidgren & Hjemdahl, 1989). The high heart rate (tachycardia) is a result of sympathetic stimulation coupled with parasympathetic or vagal withdrawal. Blood flow in adipose tissue is increased, and is associated with enhanced lipolysis (Linde, Hjemdahl, Freyschuss, & Juhlin-Dannfelt, 1989). The sensitivity of the cardiac baroreceptor reflex, the mechanism through which increased blood pressure is offset by slower heart rates and vice versa, is inhibited

during acute stress. Power spectrum analysis of heart rate and blood pressure signals show changes in spectral density at different frequencies indicative of these autonomic adjustments (Pagani et al., 1991). The capacity of the kidneys to excrete sodium and maintain fluid balance may also be impaired, and this may have implications for the development of hypertension (Light, Koepke, Obrist, & Willis, 1983). Several factors need to be taken into account when evaluating acute stress responses in humans. First, response patterns depend critically on the nature of the demands imposed on the individual. Actively demanding situations such as information processing and problem solving tend to elicit cardiovascular responses that are mediated by increases in myocardial contractility leading to elevated stroke volume and cardiac output. In contrast, passive aversive conditions and situations over which people have little control elicit increases in peripheral resistance rather than cardiac responses (Sherwood, Dolan, & Light, 1990). Consequently, it is not appropriate to regard the cardiovascular response to acute stressors as a uniform phenomenon. Second, individuals show characteristic response patterns that persist across different situations. Manuck (1994) identified groups of ªcardiacº and ªvascularº reactors, according to whether they showed increases in cardiac activity or total peripheral resistance during tasks. The magnitude of blood pressure response was similar in the two groups despite variation in the underlying pattern of haemodynamic adjustment. This means that individual differences as well as situational characteristics need to be taken into account (see also Section 8.02.6.7). Third, there appears to be flexibility across hemodynamic mechanisms, so that certain aspects of cardiovascular responses are maintained during mental stress through alternative pathways when necessary. For example, when actively demanding mental stress tests are carried out during inhibition of sympathetic pathways by beta-adrenergic blockade, blood pressure elevations are maintained through other autonomic mechanisms (Julius, (1988). Similarly, adrenelectomized subjects show the same blood pressure response to mental arithmetic or other stimuli as healthy controls, despite the lack of epinephrine response and a reduced heart rate increase (Lenders, Peters, Pieters, Willemsen, & Thien, 1988). Julius (1988) had described this as a ªblood pressureseeking propertyº of the central nervous system, with integrative mechanisms in the brain operating to maintain sustained high blood pressure during challenge through a variety of physiological mechanisms. If this is true, it

Psychophysiological Responses has important implications for interventions designed to reduce blood pressure stress responses. 8.02.3.2.2 Cardiac function Several aspects of cardiac function may be disturbed as part of the psychophysiological stress response in vulnerable individuals (see Steptoe & Tavazzi, 1996). The two most important types of response are changes in the rhythm of cardiac contraction and alterations in blood flow in the coronary circulation. Clinical disturbances of the generation and conduction of heart beats include various types of tachycardia and arrhythmia (Janse & Davies, 1996). Arrhythmias affecting the left ventricle of the heart (ventricular arrhythmias) can be provoked by sympathetic nervous stimulation, while the parasympathetic system is protective. Stimulation of the posterior hypothalamus in dogs reduces the threshold for potentially lethal ventricular fibrillation, and similar responses have been observed during avoidance conditioning and other types of psychological stress (Lown, Verrier, & Rabinowitz, 1977). In cardiac patients, ventricular arrhythmias have been associated with high levels of norepinephrine spill-over indicative of sympathetic activity (Meredith, Broughton, Jennings, & Esler, 1991). Tavazzi, Zotti, and Rondanelli (1986) evaluated the influence of mental stress on the electrophysiology of the heart using programed ventricular stimulation in postinfarction patients. Transient ventricular tachycardia and fibrillation were induced in patients during psychological stress, but not under resting control conditions. These studies suggest that the disturbances of cardiac rhythm can be induced by activation of psychophysiological pathways. High levels of parasympathetic or vagal tone act in opposition to sympathetic traffic, and reduce vulnerability to certain arrhythmias. Clinically, it has been observed that high heart rate, which may be a reflection of low vagal activity, may be an independent risk factor for coronary heart disease (Dyer et al., 1980). The minimum heart rate achieved during 24-hour ambulatory monitoring is positively associated with coronary atherosclerosis as determined by angiography (Perski et al., 1992). Parasympathetic activity is also related to heart rate variability, with higher variability being indicative of greater parasympathetic tone. Mortality in postmyocardial infarction patients has been related to low heart rate variability, and this may be another important marker of the psychophysiological response (Klieger, Miller, Bigger, & Moss, 1987).

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Blood flow abnormalities in the coronary circulation can provoke ischemia and abnormalities of contractility and left ventricular wall motion. In classical angina pectoris, cardiac ischemia due to increased myocardial oxygen demand during exercise is associated with chest pain, but episodes of ªsilentº ischemia (without pain) are also common. Mental stress may stimulate cardiac ischemia in a manner similar to exercise, with raised blood pressure and heart rate leading to heightened myocardial oxygen demand. Alternatively, there may be a direct influence of the central nervous system on the vascular tone of the coronary arteries and arterioles, leading to reductions in coronary blood flow. Sustained infusions of norepinephrine have been shown to induce myocardial lesions indicative of ischemia (Schenk & Moss, 1966). Several new methods of assessing cardiac function in conscious people have allowed stress-induced silent ischemia to be evaluated in detail. In an early study, positron tomography was used in a study of 16 angina patients (Deanfield et al., 1984). Twelve patients showed abnormalities of perfusion of the heart during mental arithmetic, but pain was experienced by only four. Rozanski et al. (1988) documented a high incidence of left ventricular wall motion abnormalities during mental stress in patients with coronary artery disease using radionuclide ventriculography, with public speaking being a particularly provocative stress test. Similar results have emerged with other methods (Steptoe & Tavazzi, 1996). Studies of ischemic responses under field conditions have largely been confined to examining abnormalities of the EKG rather than more sensitive measures, although the introduction of the ambulatory ªnuclear vestº may be helpful in the future (Legault, Freeman, Langer, & Armstrong, 1995). Gabbay et al. (1996) assessed the frequency of ST-segment depression (an EKG change indicative of myocardial ischemia) in patients during ambulatory monitoring. It was found that both physical exertion and mental stress (anxiety and anger) were associated with ischemic episodes. The presence of ischemic responses to mental stress in the laboratory has recently been found to predict silent ischemia during ambulatory monitoring in a large sample of patients with coronary artery disease (Blumenthal et al., 1995). Interestingly, positive correlations have also been recorded between the number and duration of ischemic episodes in daily life, and heart rate responses to mental stress in the laboratory (Krittayaphong, Light, Biles, Ballenger, & Sheps, 1995). These results indicate that laboratory responses to mental

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stress may have genuine significance for cardiac function in patients with coronary artery disease. 8.02.3.2.3 Platelets and hemostasis The ability of blood to coagulate rapidly is one of the primary defense mechanisms reducing the impact of injury. One of the early stages of the clotting process is the adhesion of blood platelets to the lips of a wound and the formation of a platelet plug. This is followed by reinforcement of the platelet plug with fibrin. Later the deposit is removed by fibrinolytic and other mechanisms. This process is also involved in the formation of the thrombi in the vascular system that contribute to clinical events such as myocardial infarction and stroke. It has been known for many decades that catecholamines stimulate the activation of platelets and their aggregation (Ardlie, Glew, & Schwartz, 1966). Platelet activation and aggregation have been shown to increase in healthy subjects carrying out challenging mental stress tests (Larsson, Hjemdahl, Olsson, Egberg, & Hornstra, 1989). Rapid increases in platelet activation and aggregability have also been recorded in patients with coronary artery disease performing mental arithmetic (Grignani et al., 1991). The implication of such findings is that vulnerability to the formation of thrombi may be enhanced as part of the psychophysiological stress response. Unfortunately, results of naturalistic studies have been rather inconsistent, with both increases and decreases in platelet activation and aggregation being reported under challenging conditions (Haft & Arkel, 1976, Levine et al., 1985). One complication is that there are several markers of platelet function and they may not produce uniform results. The later stages of the coagulation cascade culminate in the action of the enzyme thrombin, which converts fibrinogen into fibrin. There has been limited study of this process in the psychophysiological context, although one study showed a decrease in fibrinogen and other blood coagulation factors during a prolonged episode of work without sleep (Palmblad et al., 1977), while work stress has been associated with elevated fibrinogen levels (Davis, Matthews, Meilahn, & Kiss, 1995). 8.02.3.2.4 Other physiological systems Respiration is regulated by brain stem mechanisms that are closely integrated with cardiovascular control systems. During challenges that involve active efforts to cope, increases in respiration rate are typically

observed, while the depth of breathing (tidal volume) is augmented. Changes in the constriction of the airways can also be induced as part of the psychophysiological stress response. Restriction of the airways (or bronchoconstriction) is stimulated not by the sympathetic but by the parasympathetic nervous system, while epinephrine relaxes the smooth muscle of the bronchial tree. The airways therefore operate in the opposite fashion to cardiovascular parameters, in that problems are more likely to be induced by parasympathetic than sympathetic stimulation. Effects are found most prominently among people suffering from bronchial asthma, for whom challenges such as the suggestion that an agent which causes wheezing is being inhaled can stimulate pronounced bronchoconstriction (Steptoe, 1984b). These responses are blocked by atropine and other anticholinergic agents, confirming that the parasympathetic nervous system is involved. Passive aversive situations in which the person is not required to respond actively but rather to endure stressful conditions are especially provocative (Lehrer et al., 1996). There is some evidence that bronchoconstrictive responses can be elicited in nonasthmatics as well as asthmatic individuals, but the findings are controversial. The gastrointestinal tract is innervated by the autonomic nervous system in such a way that stimulation of the sympathetic branch decreases digestive functions such as saliva production, bile secretion, and gut motility, while these processes are enhanced by ACTH and parasympathetic responses. Large individual differences have been recorded in studies of gastric acid secretion with mental stress (Holtmann, Kriebel, & Singer, 1990). Thompson, Richelson, and Malagelada (1982) have shown how a variety of acute stressors, such as the cold pressor test or ear irrigation with cold water, delay gastric emptying and perturb duodenal motility. Other measures of gastrointestinal function are disturbed with acute stressors in people suffering from disorders such as duodenal ulcer and irritable bowel syndrome (Kumar & Wingate, 1985). Changes in skeletal muscle tension are important components of the psychobiological stress response. These reactions are difficult to quantify without elaborate instrumentation, since no one set of muscles is a reliable indicator of general tension. Levels of tension in various tissues are heightened among patients with anxiety disorders, and acute stressors may also affect both level and variability of muscle tension (Hoehn-Saric, McLeod, & Zimmerli, 1989). The role of these responses in headache and low back pain is discussed in further detail in Section 8.02.7.3.

Psychophysiological Responses 8.02.3.3 Lipids and Glucose Metabolism The level of blood cholesterol is well recognized as a risk factor for coronary artery disease, so the influence of psychosocial factors on cholesterol metabolism is of great interest. Cholesterol is a fat-like material synthesized mainly in the liver, and is transported through the circulation in the form of lipoprotein particles. These protein molecules are of several types. Low-density lipoproteins (LDL) carry much of the cholesterol, and are the main culprit in coronary artery disease. High-density lipoproteins (HDL) also carry cholesterol but are protective in that they clear lipid from blood vessel walls. In addition, triglycerides are fats that are not attached to proteins; they may be associated independently with cardiovascular disease risk, although the importance of this mechanism remains uncertain. Indirect evidence for the involvement of psychophysiological stress responses in lipid metabolism comes from experiments showing that blood pressure, heart rate, and catecholamine responses are correlated with the concentration of cholesterol and lipid fractions (e.g., Fredrikson, Lundberg, & Tuomisto, 1991; Suarez, Williams, Kuhn, Zimmerman, & Schanberg, 1991). If people prone to large physiological stress responses show higher lipid levels, then a common pathway of sympathetic or HPA activation may be responsible. Psychological challenges can also lead to acute increases in total cholesterol and LDL-cholesterol concentration (McCann et al., 1995). However, it has been discovered that this response may be secondary to alterations in blood volume. Plasma volume shows small reductions during mental stress tests because of shifts between intra-cellular and extra-cellular compartments. This can lead to an increase in blood protein concentration that accounts for the apparent elevation in blood lipid levels. The impact on lipids of longer-term stressors such as anticipation of academic examinations, stressful work, and threat of unemployment has also been evaluated (Brindley, McCann, Niaura, Stoney, & Suarez, 1993). Results have been quite mixed, with increases in total cholesterol and LDL-cholesterol in some studies but not others. The problem in understanding these responses is that under naturalistic conditions, changes may take place in dietary composition, smoking, and other factors that influence lipids independently of any psychophysiological processes. Clearer evidence derives from animal studies in which diet and other factors can be controlled. Infusion of epinephrine has been shown to increase cholesterol concentration in primates

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and rodents, while socially subordinate baboons have lower HDL-cholesterol than dominant animals, and this is coupled with a higher cortisol concentration (Sapolsky & Mott, 1987). However, it is striking that in the series of studies of social stress in cynomolgus monkeys carried out by Kaplan, Manuck and co-workers, increases in coronary atherosclerosis have been observed that were not due to elevations in lipid concentration (Kaplan et al., 1993; Manuck, Kaplan, Adams, & Clarkson, 1989). In this animal model, social stress promotes atherosclerosis independently of lipid concentration, through mechanisms such as damage to the endothelial surface of arterial walls, which may permit greater deposition of lipids in vessel walls (Strawn et al., 1991). 8.02.3.3.1 Insulin metabolism and abdominal obesity One of the critical mechanisms linking neuroendocrine activation with lipid metabolism is insulin. Insulin is a hormone produced by the cells of the Islets of Langerhans in the pancreas, and facilitates the utilization of glucose by tissues. Destruction of the insulinproducing cells leads to insulin-dependent (or Type 1) diabetes mellitus, in which protein and fat are metabolized instead of glucose, resulting in accumulation of toxic substances in the blood and kidney damage. A more common disorder is noninsulin dependent (or Type II) diabetes, in which high levels of circulating glucose (hyperglycemia) arise either because of failure to produce adequate insulin, or because of defects in the ability of tissues to respond to insulin (insulin-resistance). Both the sympathoadrenal and HPA axes influence insulin metabolism, affecting its secretion, the conversion of glycogen to glucose in the liver, and glucose uptake in tissues. A constellation of metabolic disturbances (sometimes known as syndrome X or the insulin resistance syndrome) coexist in people at raised risk for cardiovascular disease. Their problems include insulin resistance, hyperinsulinemia, glucose intolerance, low concentrations of HDL-cholesterol and high blood pressure (Reaven, 1988). Another element of this risk profile is obesity, due particularly to deposition of fat in the central or abdominal fat stores. Bjorntorp (1990) has argued that a disturbance of corticosteroid control over lipid metabolism may underlie the development of abdominal obesity. Cortisol responses to mental stress tests have been shown to correlate positively with the degree of abdominal obesity (Moyer et al., 1994), while animal studies have demonstrated that social stress promotes deposition of

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Psychophysiological Bases of Disease

abdominal fat (Jayo et al., 1993). It appears, therefore, that lipid and glucose metabolism play important roles in psychophysiological responses, and may be relevant to the pathogenesis of coronary heart disease and diabetes. 8.02.3.4 Immune Parameters One of the most exciting developments in the psychophysiological studies of disease over recent decades has been the discovery that immune function may alter as part of the stress response. Knowledge of these links increases understanding of the mechanisms through which psychosocial factors can influence vulnerability to infection, inflammation, autoimmune disease, and certain types of cancer. Sweeping assertions that stress suppresses immune function are not appropriate, since it is now recognized that the central nervous system and immune system engage in a complex interplay, and that immune responses can be both up-regulated and down-regulated by different behavioral and emotional states. The immune system is the body's primary defense against infection and invading pathogens such as viruses, bacteria, and fungi. Some immunity is innate and is present from birth, acting nonspecifically to protect against foreign materials. The skin and mucus membranes are part of this innate immune defence, using autonomic and chemical methods to prevent invasion, while cells such as macrophages are also involved. Local invasion can also trigger a general or systemic ªacute phase response,º in which several general bodily processes are elicited, including fever and raised body temperature. Although the innate system is highly effective, it cannot cope with all pathogens, so there is a second form of immunity which is acquired or specific. Acquired immunity involves the recognition of substances (antigens) as ªnonself,º and the destruction or elimination of these materials. The immune system has memory, reflected in the fact that secondary exposure to antigens elicits a more vigorous immune response than the initial reaction, although the mechanism is poorly understood (Ahmed & Gray, 1996). The main organs of the immune system include the bone marrow, thymus gland, spleen, and lymphatics, but there are also cells active in the skin, lungs and gut. There are two major arms of the immune system. Humoral immunity is involved in defense against bacteria and viruses in body fluids, while cell-mediated immunity is relevant to intracellular viruses and fungi, and also to cancer cells and transplanted tissue. Humoral immunity is mediated by serum antibodies or

immunoglobulins. These are proteins that derive from B-lymphocytes in the bone marrow, and react with specific antigens. There are five major classes of immunoglobulin, IgA, IgM, IgG, IgE, and IgD, and each has unique characteristics. For example, IgE has a primary role in defense against parasites, and elicits a range of responses designed to exclude these organisms including bronchoconstriction, vomiting, inflammation, itching, and coughing. It also has a key role in allergic responses which are generally caused by overproduction of IgE (Sutton & Gould, 1993). IgA is found in secretions such as saliva and tears, and is important in defense against local infections in the gut and respiratory system. Cellular immunity involves T-lymphocytes that arise in the bone marrow and mature in the thymus before circulating in the blood and lymph. T-cells do not recognize antigens by themselves, so antigens are usually presented to them by macrophages. T-cells have to be activated, but once activated become memory cells, migrating to tissues in which they are most likely to re-encounter their specific activating antigen. They are differentiated into various types. Of particular importance to work on stress and immune function are cytotoxic Tlymphocytes that kill invading pathogens and are involved in defense against infections such as influenza and the herpes simplex virus. T-cells are classified by surface cell markers, and cytotoxic T-cells fall into the CD8+ class. Helper T-cells (CD4+) play a central regulatory role in immune defense, stimulating B-cells to produce antibody, activating macrophages to engage in antimicrobial activity, and cytotoxic T-cells. Some of these actions are mediated through immune products called cytokines that have very specific actions on other branches of the immune system. Another type of lymphocyte, the suppressor T-cell, largely falls into the CD8+ category, but is less well understood. Suppressor cells are thought to shut off the activity of helper cells, and the helper/cytotoxicsuppressor ratio is sometimes assessed as a marker of immune health. Natural killer cells are a further class of immune cell, and are involved in immune surveillance, acting nonspecifically to defend against certain tumor cells and virus-infected cells. Many different assays of immune function have been used in the context of health psychology (Kiecolt-Glaser & Glaser, 1995). They include enumerative assays or counts of various cell types, measures of concentration of immunoglobulins in the blood and saliva, measures of cytokine activity, and functional assays. Functional assays include testing responses to mitogens, which are substances that

Psychophysiological Responses stimulate replication or proliferation of T and B cells. Common mitogens include phytohemagglutinin (PHA) and concanavalin A (Con A), with larger responses indicating more effective function. Natural killer cell activity (or cytotoxicity) is assessed by measuring the ability of natural killer cells to lyse target cells from known tumor cell lines. 8.02.3.4.1 Regulation of immune function Both the HPA and sympathoadrenal pathways are involved in immune regulation (Besedovsky & Del Rey, 1996). There are receptors in the cytoplasm of lymphocytes for cortisol, and glucocorticoids suppress the activation of circulating lymphocytes and inhibit production of cytokines (Chrousos, 1995). The HPA plays a major role in the regulation of inflammation, and corticosteroids have long been used as anti-inflammatory agents. In addition, stress-induced production of CRF by the hypothalamus has been shown to reduce T-cell proliferation in response to mitogens independently of adrenal mechanisms (Jain et al., 1991). The sympathetic nervous system innervates immune organs such as the spleen and lymph nodes, and there are adrenergic receptors on circulating lymphocytes. Many of the immune responses to acute stressors are similar to those elicited by injection of epinephrine. It has been argued that sympathetic stimulation may lead to contraction of smooth muscle in the spleen which results in extrusion of lymphocytes into the circulation. Alternatively, the sympathetic nervous system may inhibit production of the cytokine interleukin-2 by helper T cells. Catecholamines also modulate natural killer cell activity. In many studies of the stress process, it is not possible to determine whether HPA or sympathoadrenal pathways (or both) are responsible for stress-induced changes in immune function. However, there are striking examples of chronic increases in corticosteroid activity being maintained with behavioral stressors in the absence of changes in immune activity (Klein et al., 1992). In addition, alterations of immune function may occur in acute settings before changes in circulating corticosteroid concentrations have evolved. In these cases, sympathoadrenal activity is almost certainly responsible for regulating immune function. The brain and immune system engage in a two-way dialogue, and the flow of information and control is not simply from the central nervous system to the periphery. Cytokines such as interleukin-1 are released during immune activation and mediate the host's response to

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infection and inflammation. Cytokines also act centrally, affecting neural growth and repair, stimulating sickness behaviors such as reduced social exploration, food intake and weight loss, and in addition disturbing cognitive functioning (Aubert, Vega, Dantzer, & Goodall, 1995). Dantzer and Kelley (1989) have argued that many of the nonspecific symptoms of sickness and behavioral responses to infectious illness are mediated by immune products, helping to coordinate the central and peripheral responses to infection. 8.02.3.4.2 Acute stress-induced immune responses A number of studies of cellular immune responses to acute challenges such as problem solving and public speaking have been reported. Among the most consistent effects are an increase in the number of circulating CD8+ and natural killer cells, and reductions in mitogen-induced lymphocyte proliferation (Herbert et al., 1994). Changes in natural killer cell activity have been variable, with increases in cytotocity in some studies and inhibition in others (Bachen et al., 1992; Gerritsen, Heijnen, Weigant, Bermond, & Frijda, 1996). In a particularly striking set of studies, KiecoltGlasser et al. (1993) assessed newly-wed couples during a discussion of martial problems, and analyzed neuroendocrine and immune functions from blood samples. They showed that those who manifest critical interpersonal behaviors produced greater decrements than did other couples in natural killer cell activity and mitogen-induced lymphocyte proliferation. The evidence that these responses are related to sympathoadrenal pathways is strong. The magnitude of immune response has been shown to correlate with the magnitude of cardiovascular reactions (Herbert et al., 1994). Furthermore, many of these responses can be attenuated by the blockade of adrenergic pathways with pharmacological agents (Bachen et al., 1995; Benschop et al., 1994). In contrast with work on cell-mediated effects, studies of acute changes in immunoglobulins have been very limited, although some investigation of IgA concentration in the saliva have been carried out (Herbert & Cohen, 1993b). Immunoglobulins have long half-lives, and salivary IgA may be influenced by saliva flow rate, making interpretation difficult. 8.02.3.4.3 Chronic changes in immune function There is an extensive literature in animals demonstrating the impact of chronic stressors on immune function such as mitogen-induced

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Psychophysiological Bases of Disease

lymphocyte proliferation (Coe, 1993; Line et al., 1996). It appears that these effects are ameliorated by social affiliation, which may be an analogue of social support (Cohen, Kaplan, Cunnick, Manuck, & Rabin, 1992). In humans, some of the changes in immune function associated with long-term threats are similar to those observed with acute challenges. Thus a reduction in mitogen-induced lymphocyte proliferation to PHA has been recorded in caregivers for demented patients, bereaved people, and in couples experiencing severe disruption of marital relationships leading to separation or divorce (Herbert & Cohen, 1993b; KiecoltGlaser, Malarkey, Cacioppo, & Glaser, 1994). The effects are rather persistent, with deficits being recorded over several years, and responses may be associated with depression (Herbert & Cohen, 1993a). Changes in the number of helper T-cells and cytotoxic-suppressor cells have been inconsistent, with modifications being recorded in some studies but not others. One important difference from acute reactions is that instead of an increase in natural killer cell number, a reduction has generally been observed with chronic stressors (Castle, Wilkins, Heck, Tanzy, & Fahey, 1995). In addition, natural killer cell cytotoxicity is suppressed. The reason for these differences from the responses to acute stressors is unclear, but immune parameters are influenced by lifestyle variables such as smoking, exercise, and intake of dietary fat and vitamins. These variables are not controlled in naturalistic studies, but may be modified among individuals enduring chronic threats, so affecting the immune responses that are recorded. In addition, the pattern of hormonal reaction may alter with long-term threat, and also has a bearing on immune competence. One interesting study of innate immune responses was published by Bosch et al., (1996), who assessed the aggregation of streptococcal bacteria in the saliva of students under normal conditions and then prior to an academic examination. Bacterial aggregation was reduced in the pre-exam period, suggesting that the saliva was less effective in preventing bacterial adhesion to oral surfaces, and defending against the early stages of infection. As far as immunoglobulins are concerned, studies have been carried out relating nonspecific salivary IgA to mood fluctuations (Evans, Bristow, Hucklebridge, Clow, & Walters, 1993). No differences in the production of IgM or IgG in adults exposed to severe long-term threat and control were recorded by McKinnon, Weisse, Reynolds, Bowles, and Baum (1989), while another study recorded associations with daily hassles (Jabaaij, Benschop, et al., 1993a).

Rather consistent changes in antigen-specific salivary IgA and serum antibody response have also been recorded in studies by Stone et al., (1994). Subjects consumed a capsule containing a novel oral antigen on a daily basis, so the IgA antibody response was elicited in a way that might be analogous to invasion by a novel virus. Over several weeks, desirable daily events were associated with elevated IgA antibody production, while undesirable events led to a suppressed antibody response. 8.02.3.4.4 Functional significance of stressinduced immune modulation An issue that arises in the investigation of immune responses is whether the changes are of clinical significance, or are so small as to be solely of academic interest. Many alterations in immune function will only affect health if an invading pathogen is present, so a short-term change in function may have few consequences if it does not coincide with exposure. There are now studies that have addressed functional significance more directly. One of the first models to be used was the response to latent viruses that remain within the host undetected unless deficits in immune control allow replication to increase. Large antibody titers to latent herpes viruses such as herpes simplex or Epstein-Barr virus indicate poor control by the cellular immune system over these pathogens. Reports by Kiecolt-Glaser, Glaser and colleagues have shown that antibody titers are elevated as part of the stress response (KiecoltGlaser et al., 1994). A second approach has been to assess responses to nonpathogenic antigens, since studying the immune response to experimental infection is rarely ethical. Vaccination provides a useful model, but results to date have been inconclusive. One study of responses to influence of vaccine showed that psychological distress was associated with poor lymphocyte proliferative responses, while a second study showed no significant effects. Poor immune responses to hepatitis B vaccines have been elicited by acute or chronic stressors in some investigations but not in others (Glaser et al., 1992, Jabaaij et al., 1996). Results evidently depend critically on the timing of measures of the immune response, and on the size of the vaccination dose. A third method that shows considerable promise relates to wound healing. Cellular immunity plays an important role, since cytokines such as interleukin-1 and tumor necrosis factor help to protect against infection and repair the damaged tissue. An investigation of caregivers for Alzheimer victims and matched

The Nature of Psychosocial Demands controls has been published (Kiecolt-Glaser, Marucha, Malarkey, Mercado, & Glaser, 1995). Participants were given a punch biopsy to create a standard small wound on the forearm, and the rate of healing was assessed in the two groups. Wound healing was delayed among care-givers, and cytokine responses were impaired. This approach provides direct evidence for stressinduced suppression of immune defense being significant for health, and may be relevant to studies of psychosocial influences over recovery from surgery. 8.02.3.5 Adaptive or Destructive? It has been argued since the earliest scientific investigations that the physiological activation seen under conditions of behavioral stress is an adaptive response. Its ªpurposeº is to prepare the organism for vigorous physical work such as might be called upon with fighting or escaping from danger. Thus, stored energy supplies are mobilized to feed working muscle, clotting processes are stimulated to prevent blood loss from wounds, and vegetative functions that are not essential for short-term activity are suppressed. Unfortunately, this phylogenetically primitive psychophysiological response is stimulated in humans under circumstances that do not call for vigorous exercise, and may therefore become destructive. There are, however, features of psychophysiological responses that are puzzling from this perspective. They include the inhibition of inflammatory responses, the suppression of cell-mediated immunity, and the promotion of fluid loss through inhibition of the antidiuretic hormone vasopressin. How can the hypothesis that the response pattern is adaptive be reconciled with the evidence that some of the body's major defense systems are disrupted? How could such an organization of physiological responses survive the pressures of evolution? Various explanations of this apparent anomaly have been put forward. One possibility is that suppression of immune responses is adaptive in directing energy to more pressing needs. Maier, Watkin, and Fleshner (1994) have argued that the production of acute phase responses, which include substantial cellular proliferation plus increases in body temperature, requires an increment in caloric energy production of at least 10%. Such responses might be difficult to sustain in the presence of the simultaneous demands of vigorous exercise. A second possibility developed by Besedovksy and Del Rey (1996) is that it may be adaptive for a species if on occasion immune systems fail and lead to the death of an individual, since this may

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prevent transmission of pathogens to conspecifics. This active negative self-selection may sacrifice the individual to ensure survival of other members of the population. Another view that has gained widespread acceptance is that the role of the HPA axis is not to stimulate defense reactions, but rather to act as a regulatory mechanism and a restraint on other defenses. Munck, Guyre, and Holbrook (1984) have proposed that glucocorticoids play a central role in preventing the overshoot of inflammatory, immune, and metabolic responses that might otherwise take place when the organism is challenged. They suggest, for example, that in the absence of glucocorticoid counter-control, high levels of insulin might cause dangerous hypoglycemia, and that the suppression of vasopressin prevents excessive fluid retention. Chrousos (1995) has extended this perspective by pointing out that corticosteroid release may protect against susceptibility to autoimmune diseases. These are diseases in which the body's own antibodies cause inflammation and tissue destruction, and include rheumatoid arthritis, pernicious anemia and various types of thyroid dysfunction. In the absence of sustained control over immune responses by corticosteroids, risk might be increased. 8.02.4 THE NATURE OF PSYCHOSOCIAL DEMANDS It will be apparent from the discussion thus far that a wide range of physiological responses are mobilized as part of the stress response. The question arises of what types of psychosocial demand stimulate these responses, and what characteristics of stressors are particularly relevant. 8.02.4.1 Life Events, Chronic Stressors, and Daily Hassles Adverse experiences that have an impact on psychophysiological responses are conveniently divided into acute events that can be pinpointed in time and cause substantial disruption to life, chronic adverse social factors that may continue for months or even years, and less severe day-to-day sources of irritation (daily hassles). All three types of phenomenon have been associated with psychophysiological responses and subsequent health risk. Among the acute events, earthquakes and other natural disasters may be followed by elevations in health problems and mortality (e.g., Adams & Adams, 1984, Trevisan et al., 1992). Bereavement through death of a partner leads to responses such as immune down-regulation and

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an increase in all-cause mortality risk (Jones, 1987), while other life events have been associated with problems such as premature delivery for pregnant women (Nordentoft, Lou, & Hanson, 1996). Chronic stressors, such as living in the presence of loud ambient noise, crowding, unemployment, or caring for dementing relatives, also have effects on psychophysiological processes, and in some cases on mortality (Evans, Hygge, & Bullinger, 1995; Kiecolt-Glaser et al., 1994; Morris, Cook, & Shaper, 1994). Daily hassles have been linked with fluctuations in salivary cortisol levels, blood pressure, and IgA (Steptoe et al., 1996; Stone et al., 1994; Van Eck et al., 1996). The quantification of psychosocial demands has been discussed and criticized extensively elsewhere (Cohen et al., 1995b). One of the issues to emerge is that many standard measures of life events may misrepresent the impact of adverse experiences by failing to be comprehensive (Turner, Wheaton, & Lloyd, 1995). If certain types of events are more common in one sector of society than another, then failure to include such experiences in the assessment instrument would lead to underestimation of exposure. This may account for the observation that has repeatedly been made in the literature that young adults experience more stressful events than older people; this is because many life event measures target events such as pregnancy, marriage, and so forth at the expense of the infirmities and loss of capacity that are more common among the elderly. Aneshensel (1992) has argued that life event research may neglect the problems of ordinary social life and that the latter show strong gradients with socioeconomic status that may not be apparent for acute events. Although it is convenient to distinguish acute events from chronic stressors, in reality the classification is far from clear cut. Many important life events have long-term ramifications that either precede the actual event (such as discord leading up to a marital separation), or last well beyond the incident itself. Single acute events may show a sustained capacity to elicit physiological activation through repetitive intrusive memories and other cognitive transformations. Rather little is known about the extent to which the impact of acute events or chronic severe stressors is mediated through daily hassles. An event such as the death of a spouse is distressing in itself, but may also lead to numerous petty difficulties in financial and legal matters, the practicalities of living, and in social life. An interesting analysis of this issue was described by Pillow, Zautra, and Sandler (1996), who investigated the links between major threats such as death of a spouse, divorce, or

having a child with chronic illness, daily hassles, and psychological distress. Different links between hassles and the various types of major threat were observed. The impact of divorce on psychological distress was mediated almost entirely through daily hassles, while the impact of a serious childhood illness was independent of daily hassle levels. The associations between bereavement and distress were partly direct, and partly mediated through an increase in daily hassle levels. These issues have implications for systematic investigations of psychosocial factors in health risk. One of the major problems encountered in the study of physical illness is the ªindependenceº of events from the prodromata of clinical illness. Many cross-sectional or retrospective studies of psychosocial factors examine life events or chronic stressors in case-controlled designs, comparing, for example, women who show a recurrence of breast cancer with nonrecurrence (Ramirez et al., 1989), or insulindependent diabetics and their siblings (Robinson & Fuller, 1985). Inferences concerning the causal sequence depend critically on the timing of adverse life experiences. But many threatening events such as being sacked from a job, or a breakdown in important relationships, may be the culmination of a series of hassles, some of which may have preceded physical pathology, or have even been caused by early symptoms and limitations in capacity brought on by the medical condition itself. 8.02.4.2 Characteristics of Psychosocial Demands The arguments outlined in earlier sections indicate that psychophysiological responses are not uniform across situations, but vary with the nature of demands. Some of the broad dimensions that appear relevant are described in this section. 8.02.4.2.1 Novelty, familiarity, and predictability Psychophysiological responses tend to be more intense when animals or humans are placed in unfamiliar situations and confronted with novel demands. This was strikingly illustrated by Mason (1975) who found that the neuroendocrine reactions elicited in primates were as great when animals were placed in the experimental situation for the first time, as they were to any subsequent ªstressors.º The neuroendocrine and autonomic reactions in people learning new dangerous skills such as parachuting also typically diminish rapidly with repeated exposure.

The Nature of Psychosocial Demands The reduction in psychophysiological responsivity with familiarity may be due to several factors. Natelson et al. (1988) have argued that adaptation in physiological stress responses is similar to the process of sensory habituation. Many biological systems show reduced responsivity over time, with alterations in biosynthesis, storage, secretion and re-uptake capacity, modulation of receptor sensitivity, and the institution of counter-regulatory feedback mechanisms. Familiar conditions may also elicit smaller psychophysiological responses because they become predictable. Psychophysiological responses are more pronounced in unpredictable conditions, even if the duration and intensity of stimulation is the same as that in predictable conditions (Abbott, Schoen, & Badia, 1984). To take just a few examples, rat studies have shown that corticosteroid responses are enhanced and the proliferative capacity of lymphocytes is suppressed by unpredictable as opposed to predictable stressors (De Boer, Van der Gugten, & Slangen, 1989; Mormede, Dantzer, Michaud, Kelley, & Le Moal, 1988), while in humans, Zakowski, Hall, and Baum (1992) found that lymphocyte proliferative responses to Con A were impaired to a greater extent with unpredictable stressors. 8.02.4.2.2 Control and lack of control Behavioral control over psychosocial demands can be defined as the possibility of being able to take actions that prevent, terminate, or modify aversive stimulation. Lack of control implies that such actions are not available to the individual because of the prevailing circumstances, or because the actions are not in the behavioral repertoire. In the context of psychophysiological stress responses, perceived control, or the perception that actions can be taken, may be as important as actual control. There is ample evidence from acute studies in animals that simple forms of behavioral control such as pressing a lever to avoid or escape shock are associated with smaller psychophysiological responses than equivalent uncontrollable stimulation. Uncontrollable conditions elicit greater corticosterone and catecholamine responses, an increased tendency to gastric lesions, a decrease in natural killer cell cytotoxic activity and mitogen-induced lymphocyte proliferation, and greater weight loss (Steptoe & Appels, 1989). In humans, diminution in blood pressure, heart rate, and cortisol responses have been recorded with controllable demands as opposed to equivalent demands that are not controllable. However, the beneficial effects of control are limited to circumstances in which the behavioral

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responses are relatively easy to carry out. When contingencies are more complex or when behavioral tasks are difficult, physiological responses may be enhanced. This was neatly demonstrated in the study of gastric lesions in rats administered escapable or yoked inescapable electric shocks (Tsuda, Tanaka, Nishikawa, & Hirai, 1983). When the behavioral response was simple, animals in the uncontrollable condition showed greater ulceration than those in the controllable group. But with complex contingencies, the situation reversed. In humans, it is known that increasing task difficulty is associated with greater blood pressure and sympathetic nervous system activity (Callister, Suwarno, & Seals, 1992). When the tasks that must be carried out to maintain control over aversive stimulation are difficult and require considerable effort, psychophysiological responses may be greater than in uncontrollable conditions (Bongard, Hodapp, Frisch, & Lennartz, 1994). Even the perception that the person has chosen difficult tasks to perform may elicit heightened cardiovascular responses (Sherwood, Royal, & Light, 1993). However, it should be emphasized that in humans, the negative consequences of effortful control have largely been recorded during acute laboratory studies. Whether effects are sufficient to offset the benefits of perceived control in clinical and naturalistic settings remains unknown. 8.02.4.3 Work Characteristics, Control, and Psychophysiological Responses For people in employment, work occupies a considerable portion of waking life. It is scarcely surprising therefore that the work characteristics associated with ill-health have been extensively studied. Various types of pathology such as hypertension and peptic ulcer are more prevalent in people in certain demanding occupations, although it is often difficult to disentangle psychophysiological processes from variations in lifestyle and health behavior (Cobb & Rose, 1973). Work may also lead to increases in catecholamines and blood pressure, notwithstanding the points made in Section 8.02.2.2.3 about the role of physical activity that remain pertinent to these investigations. Much research on the health risks of work has been oriented around the demand-control model of job strain put forward by Karasek (1979). This proposes that risks to health are particularly great when work is characterized by high demands or work load coupled with low control or autonomy. The model therefore points to control as being an important element of psychosocial demand. A substantial literature

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has accumulated suggesting that high demand/ low control jobs are associated with increased risk of coronary artery disease and high blood pressure (Schnall, Landsbergis, & Baker, 1994). The data are not all consistent, and other factors such as social support at work and psychological traits also need to be taken into account. A study from the author's laboratory suggested that perceptions of job strain and a disposition to high physiological stress reactivity interact in determining elevated blood pressure at work (Steptoe, Roy, Evans, & Snashall, 1995). A group of healthy young men working as firefighters were classified on the basis of job strain and their blood pressure reactivity to standardized mental stress tests. Eighteen months later, blood pressure was monitored during a work shift and an equivalent period of leisure using automated ambulatory apparatus. Neither high job strain nor physiological reactivity in isolation predicted blood pressure at work, but men who displayed both characteristics had elevated blood pressure during the later hours of their work shifts. 8.02.4.4 Concurrent Stressors Adverse life experiences do not occur in isolation, but are superimposed on a background of hassles or chronic stressors. An issue that is poorly understood is the role of concurrent stressors in determining levels of psychophysiological activity. It might be assumed that if people are already under pressure because of other problems in their lives, then the reactions to fresh threats would be heightened. Alternatively, it is possible that new demands might act as distractors from concurrent difficulties, dampening the intensity of responses. Cardiovascular responses to mental stress were inversely related to recent life events in a study of adolescents (Boyce & Chesterman, 1990), and beta-adrenergic receptor density was lower among homeless people who had experienced severe life events over the past six months (Dimsdale, Mills, Paterson, Ziegler, & Dillon, 1994). Other studies have shown that high occupational demands are associated with reduced blood pressure responses to acute mental stress tests (Schaubroeck & Ganster, 1993). These reports are consistent with the notion that concurrent stressors dampen physiological responses to fresh challenges. But other work points to the opposite conclusion, with the chronic stress of crowding and high levels of recent hassles being associated with elevated cardiovascular reactions and reduced antibody formation to hepatitis B vaccination (Fleming, Baum, Davidson, Rectanus, & McArdle, 1987; Jabaaij, Grosheide et al.,

1993b). It is not certain what factors determine whether concurrent stressors enhance or inhibit psychophysiological responsivity. 8.02.5 RESISTANCE AND VULNERABILITY FACTORS The other side of the model outlined in Figure 1 concerns the personal characteristics, social resources, and experiential and biological factors that serve to increase or decrease the ability of people to adapt effectively to psychosocial demands. These factors will be outlined in this section, focusing particularly on the evidence for influence over psychophysiological processes. The inclusion of both resistance and vulnerability factors reflects the presumption that some characteristics are protective, while others are potentially damaging. Perhaps the ideal type of evidence is from studies in which individuals or groups who differ on a putative resistance or vulnerability factor are exposed to identical demands. Any difference in psychophysiological response or health risk would indicate that the factor in question was indeed operative. Within this framework, the resistance or vulnerability factors might exert a ªbufferingº effect, being operative at high but not low levels of psychosocial demand. Alternatively, they might exert ªdirectº effects, influencing responses irrespective of the level of demand. Many resistance and vulnerability factors may influence psychophysiological variables through their associations with different types of behavioral and cognitive coping response. The vulnerability factors discussed in this section are those related to psychophysiological responses in general. The factors that may predispose people to particular types of health problem are considered in Section 8.02.6. 8.02.5.1 Personality and Behavior Patterns A number of personality factors have been postulated as relevant to stress vulnerability and resistance. Some have been linked to risk for specific disorders (the best known case being Type A coronary-prone behavior), while others are thought to affect general vulnerability to psychosocial demands. There are several processes through which personality might influence psychophysiological responses, and these have been described by Bolger and Zuckerman (1995). First, personality factors or habitual ways of behaving might affect exposure to demands, increasing or decreasing the experience of potential threats by influencing social, vocational, and recreational activities. For instance, a person high in extroversion may

Resistance and Vulnerability Factors have a very different experience of life than one who is introverted. Second, personality factors may affect the appraisal of situations, and whether or not they are perceived as threatening, challenging, irrelevant, exciting, controllable, and so on. Neuroticism and hostility come to mind as exemplars of this process. Third, personality can influence the individual's choice of coping responses. For example, an individual with high internal locus of control may launch into efforts at active problem-solving more readily than someone with external beliefs. Finally, personality may have an impact on the effectiveness of coping responses. A person with high hostility scores may mobilize social support in an effort to cope, but alienate his or her social contacts with abrasive behavior. Thus far, there are rather few studies that have been able to tease out these different modes of action. Intriguing findings have been described for a number of personality and behavioral patterns including locus of control (Parkes, 1984), sense of coherence and conscientiousness (Friedman et al., 1995). The concept of the hardy personality developed by Kobasa has attracted considerable attention, but has also been criticized on conceptual and empirical grounds (Funk, 1992; Kobasa, Maddi, Puccetti, & Zola, 1985). This review is therefore confined to four areas of research into personality and behavioral patterns that appear especially relevant to psychophysiological processes. 8.02.5.1.1 Disease-prone personality and negative affectivity The notion that a constellation of personality characteristics may put people at higher risk for all manner of diseases was proposed by Friedman and Booth-Kewley (1987). They described meta-analyses in which high levels of anxiety, neuroticism, depression, anger, and hostility emerged as features linked with a range of pathologies including coronary heart disease, bronchial asthma, peptic ulcer, rheumatoid arthritis, and headache. It was postulated that a person with these characteristics was predisposed to developing physical illness, but that the nature of the illness would depend on biological factors such as genetic risk. This position can be criticized on three main grounds. First, many of the studies used to support this proposition are cross-sectional or retrospective in nature. It cannot be assumed that the psychological characteristics displayed by someone with manifest disease were present prior to diagnosis, or are present among people with similar medical conditions who have not been diagnosed (the ªclinical icebergº). Many of the illnesses discussed by Friedman and Booth-

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Kewley lead to functional limitations, pain, and impaired quality of life. It is not surprising that individuals with these problems score higher on measures of anxiety, depression, and anger or irritation than healthy people. In some cases such as hypertension, it is known that diagnosed cases and awareness of the problem are associated with increased psychological distress and neuroendocrine activation independently of blood pressure levels (Rostrup, Mundal, Westheim, & Eide, 1991). Second, the constellation of factors thought to reflect disease-prone personality overlaps strikingly with negative affectivity. Negative affectivity is a tendency to pervasive dysphoria and low mood, and has been found to influence reports of social support, life events, and symptoms, and to affect health service utilization (Watson & Pennebaker, 1989). It is frequently indexed by measures such as neuroticism, so is difficult to distinguish operationally from a personality trait in cross-sectional studies. Negative affectivity is a mediator of associations between stressors and affective responses, and may consequently contribute to the correlation between disease and personality as well. The third reason for reservations about the disease-prone personality is that it agglomerates a range of characteristics, each of which may have distinct associations with health risk and psychophysiological responses. To group factors such as depression, anxiety, and hostility together loses the potential for refining the role of psychosocial factors. 8.02.5.1.2 Anger and hostility The constructs of anger and hostility illustrate this point very well. There has been great interest in the role of these factors in physical health. However, there are many different types of measure and experience that fall within this area, and not all may be relevant to health risk. Thus anger as an emotional state or trait can be separated from hostility, which is generally regarded as a broader construct involving cognitive and behavioral factors. Cynical hostility, for example, is centered on beliefs that others are motivated by selfish concerns, and is a dimension tapped by the Cook and Medley Hostility Scale. These characteristics can in turn be distinguished from the expression of anger (a behavioral response) and from overt aggression. Space prevents more than a brief summary of the literature relating anger and hostility to physical health and psychophysiological processes. Interest has chiefly focused on cardiovascular disorders. Although the literature is

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not all consistent, meta-analyses indicate that coronary heart disease and its manifestations such as myocardial infarction are positively associated with overt hostility (Miller, Smith, Turner, Guijarro, & Hallett, 1996). There is limited evidence that hostility also predicts allcause mortality and by implication health in general. A different pattern is found for high blood pressure, which is associated with low levels of anger expression, particularly among people who are not aware of their blood pressure level (Jorgensen et al., 1996). These effects are not of course necessarily mediated through psychophysiological pathways, since hostility has also been associated with poor health habits such as lack of exercise and drinking and driving (Leiker & Harley, 1988). However, a number of investigators have shown that hostility is positively related to cardiovascular reactions to mental stress, particularly under conditions of harassment and provocation (Suls & Wan, 1993). Hostility is also positively correlated with cortisol excretion during the day, and with blood platelet activation, an early marker of thrombotic processes (Markovitz, Matthews, Kriss, & Smitherman, 1996; Pope & Smith, 1991). It is reasonable to assume, therefore, that anger and hostility are vulnerability factors in psychophysiological processes and disease. 8.02.5.1.3 Depression, pessimism, and optimism People with serious illnesses frequently experience depression. Clinically, it is commonly observed that people suffering from painful conditions such as chronic back pain or rheumatoid arthritis are at least mildly depressed for a great deal of the time. Depression is also associated with nonpainful but restrictive conditions such as bronchial asthma and various cardiomyopathies. Herbert and Cohen (1993a) have reported a meta-analysis of studies linking depression with immune function, and conclude that depressed people generally exhibit lower mitogen-induced lymphocyte proliferation, natural killer cell activity, and smaller numbers of circulating helper T-cells than do comparison groups. Studies of patients following myocardial infarction indicate that depressed individuals are at high risk for future complications and early mortality independent of cardiological variables (Frasure-Smith, LespeÂrance, & Talajic, 1993), and pessimism as a trait has been shown to predict future mortality in at least one longitudinal study (Peterson, Seligman, & Vaillant, 1988). These associations raise the question of whether psychiatric disorder of an affective

nature increases risk of physical illness. There has been speculation on this topic for many decades, and recent years have seen the publication of several convincing systematic studies. For example, Huppert and Whittington (1995) used data from the Health and Lifestyle Survey to show that elevated scores on the General Health Questionnaire predicted mortality over a seven-year follow-up period independently of age, diagnosed physical disorder at the start, social class, and smoking. A more rigorous interview-based measure of depression was used in a study of first-degree relatives of depressed patients and controls (Moldin, et al., 1993). People classified as having experienced clinical depression at some time in their lives were at increased risk for headache, skin infection, respiratory illness, diabetes, and low blood pressure, after controlling for age, sex, and alcohol use. In a larger study of people with diagnosed anxiety and depressive disorder in Sweden, risk of death from coronary heart disease was increased among men but not women (Allgulander, 1994). Unfortunately, interpretation of studies of this kind is problematic, since utilization of healthcare services may be different among people who are distressed or depressed, leading in some circumstances to an increased likelihood of diagnosis of conditions that might otherwise go unnoticed. Psychological disturbance may be a product of early subclinical physical illness, and not predate health problems. Patterns of health behavior such as exercise and food choice also vary with mental health, and may contribute to increased risk of disease. The other side of the coin is optimism, which has been defined by Scheler and Carver (1992) as a set of global expectancies in which people generally experience good as opposed to bad outcomes in life. Optimism as measured, for example, by the Life Orientation Test, has been associated with favorable adaptation to cardiac surgery, lower distress among women with breast cancer and HIV positive men, and fewer psychological problems following unsuccessful medical interventions (e.g., Carver et al., 1993; Taylor et al., 1992). An optimistic disposition appears to be associated with the use of adaptive coping strategies in the face of threat, such as planning and positive reinterpretation, with low levels of cognitive avoidance. In this respect, optimism would appear to fulfill the criteria for a general resistance factor. 8.02.5.1.4 Emotional inhibition One of the key concepts underlying the psychodynamic tradition of psychosomatics is

Resistance and Vulnerability Factors that physical disorders might emerge through repression of neurotic conflicts. From this, the idea developed that people suffering from various physical complaints might be emotionally repressed or inhibited. A more modern development of this theme is the construct of alexithymia, a difficulty in accessing feelings and bodily sensations and in relating to emotional experiences (Sifneos, 1973). The hypothesis that the inhibition of emotion is potentially damaging can be supported without accepting all the intellectual penumbra of psychodynamic thought. Openly discussing emotionally-charged events may facilitate emotional processing, may help give meaning to distressing experiences, and may allow for social comparison and input of information and advice from others. Several different methods of operationalizing the inhibition of emotion have been developed in the research literature (Pennebaker, 1995). The method developed by Weinberger and coworkers involves measuring anxiety and social desirability so as to identify people who report low anxiety together with high social desirability scores (Weinberger, Schwartz, & Davidson, 1979). The rationale is that people with a ªrepressive coping styleº fail to acknowledge emotional distress (hence having low anxiety) but also desire social approval. Weinberger et al., found that students with repressive coping styles showed greater autonomic responses to a task than did genuinely low anxious individuals. This finding has been replicated in other studies, although not entirely consistently. For example, antibody titers to Epstein-Barr virus antigen were found to be raised among students with high anxiety plus high social desirability scores by Esterling, Antoni, Kumar, and Schneiderman (1993), and not among repressors. Simpler measures of emotional expression are also negatively associated with physiological responses to challenge, a pattern that has been identified even in children of three and four years old (Cole, Zahn-Waxler, Fox, Usher, & Welsh, 1996). Anger inhibition may be particularly relevant to the development of hypertension, and has been shown to predict heightened cardiovascular reactions to mental stress tests in people with a family history of high blood pressure (VoÈgele & Steptoe, 1993). Another approach has been to assess the psychophysiological and health consequences of disclosure of emotionally distressing information. In one study of this kind, students were randomized into writing about very traumatic episodes in their pasts, or essays on neutral topics (Pennebaker, Kiecolt-Glaser, & Glaser, 1988). Cellular immune function appeared to be favorably affected by confronting traumas, with

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some evidence for a reduction in episodes of minor illness over subsequent weeks. There are other intriguing preliminary findings suggesting that lack of disclosure may have important health consequences. Cole, Kemeny, Taylor, and Visscher (1996) followed a cohort of HIVnegative homosexual men with regular health checks over a five-year period. They found that men who concealed their homosexual identity experienced a high incidence of infectious illnesses such as sinusitis and bronchitis, independent of common health behaviors, negative affect, age, and education. Risk for these types of disorder might be mediated through suppression of immune defense.

8.02.5.2 Social Isolation and Social Support The influence of social isolation, social integration, and social support on health risk is now well established. A substantial literature on social support and physiological processes has also emerged, and this has been amply reviewed by Uchino, Cacioppo, and KiecoltGlaser (1996). Social network refers to the person's web of social relationships and ties, and is typically assessed by measures such as marital status, number of people in the household, number of close friends and relatives, church attendance, and participation in group activities. Composite measures of social networks have been shown to predict mortality in the Alameda County study, Tecumseh, Scandinavian cohorts, and elsewhere (House, Landis, & Umberson, 1988). It is apparent that network measures may include a number of quantitatively different types of social contact, and it is unlikely that all are equally important. Church attendance may bring with it particular attitudes to problems and styles of coping that have little to do with group involvement per se, while marriage is much more than having someone close in the social network. The function of social networks is thought to be to provide social resources and support, and several types of support can be distinguished. They include material or tangible support, such as the provision of assistance with tasks; emotional support, or the availability of someone with whom to share personal problems and from whom to receive comfort and concern; informational support which involves the provision of advice and suggestions about plans of action; and belongingness, or a sense that one is part of a group with similar interests and concerns. Again, not all these elements are equally important across situations. The mother with young children who has recently been left by an errant spouse might benefit particularly

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from practical support in terms of help with child-care and shopping, and informational support such as legal advice. By contrast, a person worried about being dismissed from their job might especially value emotional support and a feeling that they still belong to their social group. Social support and strong social networks are not uniformly distributed through the population. Perceived social support from spouses, friends, relatives, and co-workers is greater among people of higher socioeconomic status (Turner & Marino, 1994). In the Whitehall II epidemiological study of British civil servants, satisfaction with practical support was greater in men of higher than lower employment grade (Marmot et al., 1991). Women tend to report higher social support than men from most sources, although ratings of relationships with spouses are frequently less positive. In their studies of the social origins of depression, Brown and Harris (1978) showed that poor spouse/partner support was more frequent among women of low social class with young children at home than it was in other groups. It should of course be recognized that in general, social ties may have many negative consequences, and some of the most potent sources of chronic distress arise from relationships in the family (Burg & Seeman, 1994). The literature is rather consistent in showing that social networks and social support are associated with favorable cardiovascular function (Uchino et al., 1996). For example, a study of elderly Swedish men found that blood pressure was negatively correlated with degree of anchorage in formal and informal social groups after controlling for social class, marital status, alcohol, smoking, body weight, and physical activity (Hanson, Isacsson, Janzon, Lindell, & Rastam, 1988). A frequently cited follow-up study of Italian nuns from a secluded and close-knit religious order showed that their rise in blood pressure with age was less marked than in the general population, although being a nun has more to it than social integration (Timio et al., 1988). Dressler (1991a, 1991b) has performed an interesting set of studies showing an interaction between chronic life stress and support among black men in southern USA. A subgroup were characterized by ªlifestyle incongruity,º in that their lifestyle in terms of material goods and status displays exceeded their occupational position. Dressler argued that efforts to maintain such an ostentatious lifestyle in the absence of sufficient funds constituted a source of chronic life stress. He found that blood pressures were indeed higher among men with lifestyle incongruity, but only when they had low levels of social support.

Physiological variables have also been assessed in a series of acute laboratory studies of responses to standardized tasks carried out in the presence of supportive friends. Effects have been somewhat mixed, although there is some evidence that cardiovascular reactions are reduced in the presence of friends (Kamarck, Annunziato, & Amateau, 1995). Evidence concerning neuroendocrine function and social support is less consistent, with several studies showing little effect. Immune data are more compelling in showing that the down-regulation of function elicited by chronic stressors may be ameliorated by support (Baron, Cutrona, Hicklin, Russell, & Lubaroff, 1990; KiecoltGlaser et al., 1991). The results of studies that have attempted to bolster social support but have been rather disappointing to date. For example, Arnetz et al. (1987) randomized unemployed women to control or intervention groups that provided information and engaged in alternative activities. No effect on immune or endocrine function was observed. A very substantial study providing social support to deprived young pregnant women in Latin America failed to find any protective effects on birth outcomes (Villar et. al., 1992). Helgeson and Cohen (1996) have argued that although emotional support groups are desired by patients with cancer, there is little evidence that they are of benefit in terms of psychological well-being or other aspects of adjustment. It is not yet clear that support provided externally will necessarily have comparable effects to support that emerges more naturally from the individual's evolving social world.

8.02.5.3 Prior Experience of Stressful Events There are distinct schools of thought about whether prior adverse experience helps to strengthen the individual's resistance to later threats, or whether it increases vulnerability. On one side, there is evidence that earlier stressful experiences increase vulnerability to later adverse events. Thus experiences such as disruption of family relationships early in life increase risk for later emotional and behavioral problems (Wadsworth, Maclean, Kuh, & Rogers, 1990). In work on life events and depression, Brown and Harris (1978) found that women who had as children experienced the loss of their own mothers through death, ran a high risk of developing depression in adult life in the face of negative life events. Adverse effects are by no means inevitable, since the impact of early stressful experiences is ameliorated by temperamental factors and

Pathways to Disease±Predisposing Factors coping style (Garbarino, Kostelny, & Dubrow, 1991). Cortisol responses to stressful situations are smaller among infants with more secure attachments (Nachmias, Gunnar, Mangelsdorf, Parritz, & Buss, 1996). Animal studies have shown that early social isolation leads to increased HPA output, reduced lymphocyte activation by mitogens, and an elevation of central norepinephrine turnover (Suomi, 1991). The enhancement of psychophysiological responses arising from disruption of early development may increase vulnerability to later disease. Prenatal factors may also be significant. For example, the exposure of pregnant rats to behavioral stress has been shown to influence the immune function of their offspring (Klein & Rager, 1995), and influences on later neuroendocrine function have been described as well. On the other side, prior experience may mitigate the effects of later aversive stimulation. Thus early handling in laboratory animals produces more rapid adaptation to avoidance conditioning, smaller adrenal responses to chronic stress, and enhanced antibody responses to experimental infections (Solomon, Levine, & Kraft, 1968). Dienstbier (1989) has argued that prior stressful experiences lead to ªphysiological toughening,º and more effective adaptation to later challenges. A direct test of this model was described by Norris and Murrell (1988) who examined the impact of a natural disaster (serious flooding) on anxiety symptoms. It was found that older adults who had experienced similar disasters earlier in their lives showed better adaptation than did those who lacked prior experience. These discrepant findings can probably be reconciled through consideration of the specific adverse events experienced in the past and current demands on the individual. Previous exposure to a particular threat (such as a natural disaster) might indeed improve adaptation, since the sequence of events will be more familiar and less unpredictable than before, and strategies for coping may already have evolved. Other types of threatening experience may disrupt developmental trajectories, impair selfesteem and reduce the individual's social resources, leading to heightened responsivity to later events.

8.02.6 PATHWAYS TO DISEASEÐ PREDISPOSING FACTORS Thus far, factors have been described that influence the magnitude and duration of psychophysiological responses in a general fashion. However, as well as establishing

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credible biological pathways, models of psychophysiological processes in disease must account for individual differences. Why is it that groups who suffer from ªstress-relatedº pathology often do not appear to have more stressful lives than those who remain healthy? How is it that two people may have similar life experiences, yet one becomes ill while the other remains healthy? Why, in the face of chronic stressors, do some people succumb to infectious illness while others show increases in blood pressure and the development of hypertension? Faced with these issues, it has been traditional in psychophysiological models to invoke ªbiological vulnerabilityº as an explanation. People will succumb to the pathologies to which they are most vulnerable, depending on their locus minoris resistentiae. Thus an individual prone to coronary artery disease will show accelerated atherogenesis with adverse life experience, while another susceptible through biological factors to muscular contraction will be at increased risk for headache or muscular skeletal pain. Still another person may be physically robust, but prone to anxiety disorders. This model may account superficially for individual differences, but unless it is properly characterized it has little explanatory power. The problem is that unless biological vulnerability is defined a priori with clear measurable markers, then there is the danger that vulnerabilities are identified after the event, and that reasoning becomes circular. Fortunately, there has been progress over recent years in delineating predisposing factors. Some of these help account for why one person becomes ill and another does not, while others explain why individuals succumb to particular forms of illhealth.

8.02.6.1 Nutrition and Exercise Nutritional deficits in early life affect later functioning of the immune system even after proper nutrition has been reinstated. A persistent alteration in phagocytosis and an accelerated decline in cell-mediated immunity have been described (Dutz, Kohout, Rossipal, & Vessal, 1976). Serum immunoglobulins appear relatively unaffected by malnutrition through protein and energy deficits, but secretory IgA responses are reduced and may enhance the risk of succumbing to viral infection. Among elderly people, subtle and often undetected micronutrient deficiencies lead to reductions in lymphocyte function and natural killer cell activity (Chandra, 1989). Other aspects of nutrition such as the consumption of saturated fats, salt, and fruit and vegetables are of clear importance

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as risk factors in disease. Thus nutritional profiles may have a profound influence on the extent to which psychophysiological responses will have clinical consequences in terms of disease risk. Regular physical activity and physical fitness may potentially be protective. A substantial number of studies have assessed associations between fitness or regular activity and psychophysiological stress responsivity. Although by no means consistent, investigators have shown that blood pressure and catecholamine stress responses are smaller among fit or more active individuals (Seraganian, 1993). However, crosssectional differences may be due to selection factors or other aspects of the lifestyle of sedentary and active people. Efforts have therefore been made to assess psychophysiological responsivity to mental stress before and after exercise training. Again the results have been very mixed, with reductions in stress responsivity with physical training emerging in some studies but not others (De Geus, Van Doornen, & Orlebeke, 1993; Rogers, Probst, Gruber, Berger, & Boone, 1996). The explanation of these discrepancies is not clear, so the extent to which psychophysiological mechanisms are moderated by regular physical activity and fitness is uncertain. Field studies certainly suggest that fitness is protective. For example, Brown (1991) found that in a sample of students, adverse life events over the past year were associated with psychological distress and self-reported illness level. However, both illness rates and healthcare utilization were lower in those who had experienced life events but were also physically fit, as opposed to the unfit. Results of this kind indicate that further investigation of the influence of regular activity and fitness on psychophysiological processes and disease is warranted.

8.02.6.2 Advanced Age Many of the medical disorders investigated in health psychology are more common in older than younger adults, including coronary artery disease, rheumatoid arthritis, high blood pressure, and various cancers. The issue of aging is becoming increasingly important to an understanding of psychosocial contributions to disease risk (Schaie, Blazer, & House, 1992). The nature of psychosocial demands changes with age. Heckhausen and Schulz (1995) have argued that later years are characterized by increasing exposure to events over which the individual has little control, including bereavement, health problems, the reduced economic power associated with retirement, and diminution in social

networks due to death and changing roles. People who appear to age more successfully may adapt by lowering their evaluation of the importance of areas of life over which they lose control (Brandtstadter & Rothermund, 1994). However, flexibility and adaptation may be reduced at both the psychological and biological levels, contributing to increased disease risk. The profile of biological stress responses changes with age. Older age is characterized by higher levels of circulating catecholamines but reduced responsiveness to sympathetic stimulation (Lakatta, 1993). Thus, heart rate responses to challenging tasks are reduced, while a decrease in the dilation of blood vessels supplying working muscle results in increased blood pressure responsivity. Animal studies suggest that the magnitude of acute responses in the HPA system is unchanged with age, but that cortisol elevations are more prolonged in older animals, suggesting disruption to regulatory feedback mechanisms (Seeman & Robbins, 1994). A limited amount of evidence suggests similar processes are at work in humans, although increased cortisol responses to challenging tasks with age have also been described (Gotthardt et al., 1995). The magnitude of ACTH and cortisol responses to a simulated real-life challenge (a driving test) were shown to be inversely associated with self-esteem in an elderly cohort, suggesting that maintenance of psychological well-being in old age may help reduce adverse psychophysiological response patterns (Seeman et al., 1995).

8.02.6.3 Gender Many of the medical disorders discussed in other chapters of this volume have different rates of occurrence in men and women. There are also consistently higher reports of psychological distress on measures such as anxiety and depression among women than men, and these differences do not appear to be accounted for by disclosure or response biases (Mirowksy & Ross, 1995). The question therefore arises of whether psychophysiological processes contribute to differences in disease and distress between the sexes. Faced with identical challenges, young men tend to show more sustained cortisol reactions than young women (Kirschbaum, Wust, & Hellhammer, 1992), together with higher epinephrine responses (Frankenhaeuser, Dunne, & Lundberg, 1976). Men also manifest greater blood pressure responses than women, and this pattern can be seen even in childhood (Allen, Stoney, Owens, & Matthews, 1993; Murphy, Stoney, Alpert, & Walker, 1995). By contrast,

Pathways to Disease±Predisposing Factors heart rate responses are typically greater in women. Studies comparing women at different phases of the menstrual cycle have not reached a consensus about effects on stress responsivity (Stoney, Owens, Matthews, Davis, & Caggiula, 1990). However, it is probable that the low responsivity of young women is mediated at least in part by circulating estrogen, and after menopause the blood pressure stress responsivity and ambulatory blood pressure of women approach that of men (Owens, Stoney, & Matthews, 1993). 8.02.6.4 Ethnicity There are pronounced ethnic differences in the prevalence of a variety of diseases (Murray & Lopez, 1996). The contribution of psychosocial factors has been investigated extensively in relation to cardiovascular disorders and diabetes. Noninsulin dependent diabetes is particularly common among Micronesians, native Americans, Hispanic Americans, and in migrants from South Asia to the UK. It is accompanied by a high prevalence of insulin resistance, low concentrations of HDL-cholesterol and high levels of abdominal obesity. Although there have as yet been few studies of psychophysiological processes, it is plausible that these ethnic differences may relate to the stress-related pathways described in Section 8.02.3.3.1. Hypertension is more prevalent among black than white people in urbanized societies, and research indicates that factors such as repressed hostility, socioeconomic status, and social integration may all contribute (Anderson, Myers, Pickering, & Jackson, 1989). There have been many studies of differences in the responses of black and white volunteers to laboratory mental stress tests. The data suggest that black people show greater increases in peripheral vascular resistance than whites, particularly when confronted by passive aversive tasks such as the cold pressor test (Saab et al., 1992). White people by contrast show increases in heart rate and myocardial contractility, indicative of greater sensitivity to betaadrenergic sympathetic nervous stimulation. These findings indicate that when faced with the same psychosocial demands, ethnic differences in responsivity may contribute to differential disease risks. 8.02.6.5 Socioeconomic Status and Education The major sources of morbidity and mortality in developed countries show strong socioeconomic gradients, with higher prevalence

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among people of lower socioeconomic status (Blane, Brunner, & Wilkinson, 1996; Kaplan & Keil, 1993). Socioeconomic status may be assessed by a variety of indices including occupation, income, type of housing and education. Differences are present not only in manifest disease but in subclinical pathology, and are present throughout the life course. As noted earlier, psychosocial demands are greater among people of the lower socioeconomic status, while perceived social support is poorer (Turner & Marino, 1994; Turner et al., 1995). Low socioeconomic status is associated with chronic stressors such as excessive work demands, inadequate rewards, economic hardship and uncertainty, increased exposure to crime and noise in everyday life, frustration in expectations associated with social roles, and greater barriers to achieving life goals (Aneshensel, 1992). A combination of biological factors, health behaviors and psychosocial influences such as poorer support appears to account for much of the socioeconomic gradient in mortality and cardiovascular disease risk factors (Lynch, Kaplan, Cohen, Tuomilehto, & Salonen, 1996). However, some social variations require further explanation. For example, Nordentoft et al. (1996) found that life stress and education were independent predictors of premature delivery in a large sample of pregnant women. There is limited evidence that psychophysiological responsivity is associated with socioeconomic markers such as education and work status, but further study of these issues is essential (Carroll, Smith, Sheffield, Shipley, & Marmot, 1997; Owens et al., 1993)

8.02.6.6 Genetic Factors Genetic factors are probably responsible for many of the differences between people who are at risk of psychophysiological disease. They may operate in several different ways. First, twin adoption studies indicate that a substantial proportion of the variance in the experience of adult life events and in social support is accounted for by genetic influences (Bergeman, Plomin, Pedersen, McClearn, & Nesselroade, 1990; Plomin, Lichtenstein, Pedersen, McClearn, & Nesselroade, 1990). Psychological factors such as optimism, hostility, and Type A behavior are also heritable. Consequently, the likelihood that a person will manifest intense psychophysiological responses is determined not only by his or her experience, but by genetic makeup. Second, the magnitude of psychophysiological stress responses to standardized tasks in the laboratory shows significant heritability (Hewitt & Turner, 1995). Third, genetics

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contribute to other predisposing factors like obesity, and to activities such as alcohol consumption, thereby increasing risk of disease through behavioral pathways. Overall, there is a sizeable genetic contribution to risk of illnesses such as coronary heart disease, hypertension, rheumatoid arthritis, diabetes, and certain types of cancer, so it is likely that psychophysiological processes will have a greater impact on an individual who is genetically predisposed to a particular condition. 8.02.6.7 Individual Patterns of Psychophysiological Responses The final predisposing factor that needs to be considered is each person's tendency to show a particular pattern of physiological responsivity to psychosocial demands. As noted earlier, physiological responsivity is a relatively stable characteristic for each individual, and it is one that emerges early in life in animals and humans (Brown-Borg, Klemcke, & Blecha, 1993). Lewis, Thomas, and Worobey (1990) showed that infants who were emotionally reactive to a painful stimulus (inoculation) at two months old were more prone to infection over the subsequent year, probably because of a tendency towards stress-induced immunosuppression. In adult life, many people show individualresponse specificity, which is the tendency to respond maximally and consistently in a particularly physiological pathway. It has typically been evaluated by measuring a range of autonomic responses to a series of different tasks. A person manifests individual-response specificity if they are maximally reactive in one measure across situations. Individuals differ in the measures in which they are most responsive, so some may be blood pressure responders, while others are most sensitive in terms of the electrodermal system or cortisol (Steptoe, 1984a). Multivariate analyses suggest that about one-third of people show consistent individual-response specificity. It is appealing to speculate that these people may be prone to developing disorders associated with the psychophysiological parameter in which they are most responsive. 8.02.7 PSYCHOPHYSIOLOGICAL MODELS OF DISEASE The previous sections have described the physiological responses that are activated when psychosocial demands outweigh the resources available to the individual, and have outlined the factors that increase vulnerability and predisposition to disease. There remain the

actual mechanisms through which disease is initiated and exacerbated. However, before these psychophysiological processes are described, it must be emphasized that they are not the only pathways through which psychosocial factors affect disease and physical health. Psychosocial factors may influence disease not only through psychophysiological processes, but also through behavioral, affective, and social-cognitive pathways. These latter will not be discussed here, since they have been extensively described previously (Cohen & Rodriguez, 1995; Steptoe, 1991). Cognitive processes such as the identification of symptoms or decisions to seek help from health professionals, and behaviors such as alcohol consumption, adherence to medical advice, and risky sexual practices, may all be affected by the psychosocial factors described in this chapter. They may in turn impact on diagnosis and disease. It is frequently difficult fully to apportion accountability to psychophysiological and behavioral mediators. For example, both poor social support and depressed mood have been shown to predict early mortality following myocardial infarction (Berkman, Leo-Summers, & Horwitz, 1992; Frasure-Smith et al., 1993). The known effects of these factors on physiological systems relevant to coronary disease may be responsible, but so might behavioral factors. For instance, there may be differences in adherence to medication, or small variations in the speed with which help is sought following the onset of symptoms, that might occur between the socially isolated or depressed patients and others. These might determine whether or not the patient survives a fresh cardiac event irrespective of psychophysiological disturbances. Notwithstanding these considerations, there is ample evidence for psychophysiological involvement in disease pathology. In fact, several types of mechanism have now been identified, and these are summarized below. It is important to recognize the differences between them, since the role played by psychophysiological factors in disease pathology is somewhat varied. Moreover, the types of research design needed to evaluate the various mechanisms are also quite distinct. (i) Psychosocially induced physiological reactivity as a causal factor. (ii) Psychosocially induced physiological reactivity as an inhibitor of host resistance and host defenses. (iii) Psychosocially induced physiological reactivity as a disruptive factor on existing pathology. (iv) Psychosocially induced physiological reactivity as a trigger of acute clinical events.

Psychophysiological Models of Disease 8.02.7.1 Physiological Reactivity as a Causal Factor The first possibility is that psychophysiological reactivity is directly responsible for disease. Particular individuals show heightened reactivity in specific physiological parameters such as blood pressure, gastrointestinal motility, or muscle tension in the head and neck. Through regular or sustained exposure to psychosocial demands that over-tax resources, these physiological responses may be repeatedly elicited and in due course may gravitate from acute reactions to sustained pathology. Of course, physiological reactivity does not act alone, but against the substrate of predispositions outlined in Section 8.02.6. The type of study needed to evaluate this mechanism is a longitudinal investigation in which psychobiological predispositions and reactivity patterns are measured at the outset, and exposure to the stressors that trigger appropriate physiological responses is tracked. It would then be predicted that people with heightened reactivity in a particular physiological response system, and who also experience psychosocial demands that elicit these reactions over a sustained period, will be at increased risk for developing the disease. This type of study is difficult to carry out in humans, although it forms the basis of some animal models of pathology (Manuck et al., 1989). More readily available in humans is evidence that people with a variety of disorders tend to react to cognitive and emotional challenges with heightened responses in the physiological systems relevant to their disorder. Thus people with hypertension typically show larger blood pressure responses to mental stress tests than do those with normal blood pressure. Asthmatics react to challenges with greater increases in bronchoconstriction, people with irritable bowel or irritable colon show greater disturbances in motility of the gut, patients suffering from tension headache or chronic low back pain show heightened reactivity in muscles in appropriate tissues, and so on (Flor & Turk, 1989; Kumar & Wingate, 1985; Steptoe, 1997). These studies are consistent with psychophysiological reactivity being involved in disease etiology, but do not provide strong evidence. The reason is that disturbances in reactivity to behavioral challenges may be secondary to the pathological changes characteristic of the disease itself. Thus bronchial hyper-reactivity is a general process in asthma that triggers reactions to exercise, cold, housedust mite and other factors apart from emotional challenges. In other conditions as well, exaggerated reactivity

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may be an effect rather than cause of the medical condition. A way of circumventing this cause±effect problem is to identify people who are at enhanced risk for a particular disorder prior to the onset of pathology. If aberrant reactivity is present among these individuals, then the psychophysiological disturbance clearly precedes the development of the disorder. Unfortunately, markers of enhanced risk are rare for many medical disorders, making this approach difficult to implement. The field in which this strategy has been developed most vigorously is hypertension, since there is a moderate but consistent hereditary contribution to blood pressure level. This means that young people whose parents have hypertension are at increased risk themselves. The blood pressure and other cardiovascular responses to mental stress of normotensive people with and without a family history of hypertension have therefore been examined. It is frustrating that despite a large number of studies, findings have been inconclusive, with heightened reactivity being recorded from high risk people in some studies but not in others (Steptoe, 1997). The explanation for the variability in results is not clear, although the nature of psychological demands and the co-existence of vulnerability factors such as emotional inhibition may be relevant. Perhaps more importantly, even this research strategy does not completely overcome the cause±effect problem in interpretation. A variety of pathophysiological processes are disturbed in young normotensives with a family history of hypertension, including sodium transport, vascular distensibility and left ventricular structure. Consequently, the possibility cannot be ruled out that heightened psychophysiological reactivity is secondary in these groups, just as it may be in established hypertensives. Longitudinal studies have also been conducted, testing the hypothesis that normotensive people with heightened reactivity will be at increased risk of developing hypertension in the future. Here the evidence is rather more compelling, with an increasing number of studies showing that high reactivity does predict future hypertension (Light, Dolan, Davis, & Sherwood, 1992; Treiber et al., 1996). Blood pressure reactivity to mental stress is also associated with the pathological consequences of hypertension such as hypertrophy of the left cardiac ventricle (Hinderliter, Light, Girdler, Willis, & Sherwood, 1996). Yet it is also the case that some longitudinal studies have failed to show any prediction of future cardiovascular problems (Carroll et al., 1995). Two issues are relevant. The first is that heightened psychophysiological reactivity may only be significant

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in the presence of co-factors such as obesity or salt sensitivity. Second, it is necessary in longitudinal studies to include measures of the life experience of the cohort over the follow-up period. Unless this is done, one important element of the psychophysiological causal hypothesis is missing. 8.02.7.2 Physiological Reactivity as an Inhibitor of Host Resistance and Defense The second mechanism through which psychosocially-induced physiological reactions may influence disease is by altering physical vulnerability in ways that render the person more susceptible to invasive organisms. The mechanism is presented diagrammatically in Figure 2, which shows four possible scenarios linking exposure to pathogens and bodily defenses. The mechanism is illustrated through the case of infectious agents and immune defense, although it is equally applicable to other pathogens and defense systems. Panel A represents the situation when the organism mounts an adequate immune response that tackles the infection effectively and prevents disease. In panel B, exposure takes place in the presence of a stress-induced impairment of immune response, allowing the infection to be acquired and illness to develop. This is the situation that pertains when physiological reactivity alters host resistance. This psychophysiological mechanism is different from the process described in Section 8.02.7.1 in two important ways. First, the psychophysiological response is not presumed to cause illness, but rather to influence vulnerability. Second, it is not necessary to postulate that people are exposed to intense, repeated stressors in order for disease risk to be enhanced. Rather, heightened vulnerability for a single short time period may be sufficient, if it is contiguous with a critical state of invasion. The ideal type of study of this mechanism is a longitudinal investigation in which psychosocial factors are monitored together with measures of bodily defenses, exposure to infectious agents, and illness. Such studies are difficult to carry out at a technical level and also require high levels of cooperation from participants. Interpretation of results is also complicated by the two additional scenarios shown in panels C and D of Figure 2. Panel C describes a situation when the infectious agent to which the individual is exposed is particularly virulent. Under these circumstances, illness may occur even though immune responses are intact. Another possibility is that bodily defenses are disrupted, but since there is no simultaneous exposure to a pathogen, no illness results (Panel D). Taking

account of all these alternatives probably goes beyond the scope of any study in humans that has been conducted thus far. Some of the most convincing evidence for psychosocially induced impairment of host defenses comes from studies in which infectious agents were administered experimentally. Cohen, Tyrrell, and Smith (1991) demonstrated that the acquisition of infection following administration of known doses of common cold viruses was related to a composite measure of psychological stress; subsequent analyses suggested that infection rate was predicted by negative affect and subjectively-rated stress, while illness was predicted by negative life events. These findings have been replicated in broad outline, albeit without assessment of the immune parameters that might have mediated clinical effects (Cohen, Boyle et al., 1995, Stone et al., 1992). Psychosocial factors are associated with infectious illness in naturalistic settings as well (Cohen & Williamson, 1991). For example, the herpes virus responsible for cold sores and genital lesions may remain latent in the body after the first exposure, but can be reactivated to produce new episodes of illness. Several retrospective studies have shown that recurrence is more likely during episodes of psychosocial stress. One prospective investigation with daily ratings of mood indicated that the ten days prior to a recurrence of genital herpes were characterized by elevations in ratings of nervousness (Dalkvist, Wuahlin, Bartsch, & Forsbeck, 1995). Interestingly, Turner-Cobb and Steptoe (1996) found in another longitudinal experiment that symptoms of upper respiratory tract illness were preceded by high levels of perceived stress for two to three weeks. In the study of immune function in care-givers for dementing patients alluded to in Section 8.02.3.4.3, Kiecolt-Glaser et al., 1991) reported that caregivers experienced longer episodes of illness over a 12-month follow-up than did controls. This suggests that the immune suppression recorded among care-givers may have led to prolongation of illness. Evidence for psychosocially-induced impairment of host resistance having a clinical role is therefore becoming increasingly convincing. In studies of pathophysiology, there is a new understanding that infectious processes are not confined to traditional self-limiting disorders, but may contribute to conditions such as peptic ulcer, gastric cancer, dementia, vasculitis, and insulin-dependent diabetes (Lorber, 1996; O'Connor, Buckley, & O'Morain, 1996). As these mechanisms are uncovered, the role of psychophysiological processes in reducing resistance may assume even greater importance.

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Stress, immune responses and infection B

A Infectious agent

Adequate immune response

Infectious agent

No illness

C

Impaired immune response

Illness

D

Powerful infection

Adequate immune response

Illness

No infectious agent

Impaired immune response

No illness

Figure 2 Schematic outline of associations between immune defenses and infection.

8.02.7.3 Physiological Reactivity as a Disruptive Factor If psychosocially induced physiological reactions do not act as causal factors, how do they contribute to the disease process? An important possibility is that psychophysiological reactions act on existing pathology to disrupt regulatory mechanisms. The result may be exacerbation of the patient's clinical state, possibly leading to symptomatic episodes, or to more rapid degeneration in progressive conditions than would otherwise be the case. The role of physiological reactivity as a disruptive factor differs from its involvement in the processes outlined in Section 8.02.7.1 and 8.02.7.2 in several ways. First, this mechanism is operative in people already suffering from disease, although the pathology may not necessarily have reached the stage of clinical diagnosis. It is particularly likely to be active in chronic or episodic conditions such as pain syndromes, bronchial asthma, and diabetes. Second, the influence of psychophysiological responses may be manifest at the level of day-to-day clinical status, and consequently relatively minor daily hassles may be influential. Third, the physiological reactions may either be directly involved in pathology (such as dis-

turbances of bronchoconstriction in asthma) or may disrupt host resistance, as in the case of autoimmune conditions. There may be some problems such as insulin-dependent diabetes where effects could be mediated either directly through disturbances of insulin metabolism or indirectly through failures in resistance to enteroviruses. There is a substantial amount of data showing that symptoms and other indicators of medical conditions covary with psychosocial factors, and the mechanism outlined here may be responsible for these associations. By way of illustration, factors such as negative mood and daily stressors have been shown to covary with disability and symptoms in rheumatoid arthritis (Affleck, Tennen, Urrows, & Higgins, 1994), irritable bowel syndrome (Suls, Wan, & Blanchard, 1994), the chronic inflammatory condition systemic lupus erythematosus (Adams, Dammers, Saia, Brantley, & Gaydos, 1994), headache, Crohn's disease (Brantley & Jones, 1993), insulin-dependent diabetes (Goldston, Kovacs, Obrosky, & Iyengar, 1995), and phantom limb pain (Arena, Sherman, Bruno, & Smith, 1990). However, the problem arises of whether these associations reflect genuine influences on pathology, or effects on symptom reporting and complaints. In order to show that

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psychophysiological processes are operative at the biological level, it is necessary to measure covariation of psychosocial factors with physiological regulatory parameters as well as symptoms. Here findings are more sparse, but nevertheless suggestive. Thus several studies of insulin-dependent diabetes have shown that stressors influence blood glucose levels and metabolic control independently of variations in diet, exercise, or compliance with medical advice (Goldston et al., 1995; Halford, Cuddihy, & Mortimer, 1990). In patients with rheumatoid arthritis, the experience of minor life events was associated with fluctuations in T and B lymphocyte counts (Zautra et al., 1989). As methods of physiological monitoring become more sophisticated and less obtrusive, it is likely that more influences of this kind will become apparent. The role of psychosocial factors in the development of cancer and progression of HIV infection are controversial issues that are discussed in other chapters of this volume. It is probable that if psychophysiological processes are involved, they act through the dysregulation of immune surveillance in a fashion similar to the mechanisms outlined in this section.

8.02.7.4 Physiological Reactivity as a Trigger of Acute Clinical Events The fourth distinct psychophysiological mechanism in disease concerns the elicitation of acute clinical events. It is possible that psychophysiological responses can be so intense as to trigger episodes of serious illness, and possibly even death. Such an effect is unlikely in the absence of severe underlying disease rendering the victim especially vulnerable. The mechanism is distinctive in that a single occurrence may have serious clinical consequences. It has been proposed that such a process may be involved in the precipitation of epileptic seizures (Webster & Mawer, 1989). One study of civilians under threat of missile attack showed seizures to be triggered by raid alarms in a small group of patients (Neufeld, Sadeh, Cohn, & Korczyn, 1994). It is conceivable that the process is also relevant to the occurrence of stroke, although evidence is sparse (House, Dennis, Mogridge, Hawton, & Warlow, 1990). Probably the best illustration of the impact of psychophysiological processes on acute clinical events is in the cardiovascular field, with the triggering of myocardial infarction and sudden cardiac death. Recent studies of myocardial infarction victims suggest that the disturbances of cardiac rhythm and coronary blood flow described in Section 8.02.3.2.2 may precipitate

clinical events in susceptible individuals. One study assessed anger during the hours prior to acute infarction in comparison with other time periods (Mittleman et al., 1995). A high incidence of severe anger was recorded in the two hours before symptom onset. The effect was not present among patients taking beta-blockers, suggesting that stimulation of coronary vasospasm or thrombotic processes by sympathoadrenal activation may have been involved. Emotional triggers of acute cardiac events have been reported in other studies as well (Tofler et al., 1990). Jain, Burg, Soufer, & Zaret (1995) showed that cardiac patients who responded to laboratory mental stress with disturbances of myocardial function were more likely over the next two years to have acute infarctions or develop unstable angina pectoris than were nonresponders to stress. Taken together, these findings suggest a plausible link between psychosocially-induced physiological reactions and acute episodes of clinical disease. 8.02.8 CONCLUSION The psychophysiology of disease is a vigorous and exciting area of research. It involves the integration of several disciplines including neuroscience, pathophysiology, and health psychology, and in each of these areas new discoveries are constantly changing our levels of understanding. The complexity of links between the brain, peripheral physiological function, and disease risk is formidable, and linear models are of limited value. The broad processes linking psychophysiological factors with disease risk are now understood, although many of the biological mediators remain tantalizingly illusive. Important challenges for future research include delineation of the processes through which psychosocial factors such as social inequality and social isolation affect disease, understanding how emotional and behavioral coping responses can modify physiological reaction patterns and contribute to resistance and vulnerability, and defining the ways in which psychophysiological knowledge can be harnessed for prevention and disease management. Psychophysiology is one of the cornerstones of clinical health psychology, and is of prime importance in understanding how psychological and social experience can influence health and disease. 8.02.9 REFERENCES Abbott, B. B., Schoen, L. S., & Badia, P. (1984). Predictable and unpredictable shock: Behavioral measures of aversion and physiological measures of stress. Psychological Bulletin, 96, 45±71.

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.03 Health Care JOHN WEINMAN United Medical and Dental Schools of Guy's and St. Thomas's Hospitals, London, UK 8.03.1 INTRODUCTION

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8.03.2 THEORETICAL BACKGROUND

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8.03.3 PERCEIVING SYMPTOMS AND ENTRY INTO THE HEALTH-CARE SYSTEM

81 81 82 82 83 83 83 84 84

8.03.3.1 The Nature and Experience of Symptoms 8.03.3.2 Factors Influencing Symptom Perception 8.03.3.2.1 Attentional focus 8.03.3.2.2 Knowledge and expectations 8.03.3.2.3 Disposition and emotions 8.03.3.2.4 Contextual factors 8.03.3.3 Summary: Symptom Perception 8.03.3.4 Symptom Perception and Help Seeking 8.03.4 HEALTH-CARE PROFESSIONAL±PATIENT COMMUNICATION

86 86 87 89 91 92 92 92 94 98 98

8.03.4.1 Input Factors in Communication 8.03.4.1.1 Patient input factors 8.03.4.1.2 Health-care professional input factors 8.03.4.2 The Consultation Process 8.03.4.3 Outcomes of Health-care Communication 8.03.4.3.1 Cognitive outcomes 8.03.4.3.2 Affective outcome: patient satisfaction 8.03.4.3.3 Behavioral outcome: adherence 8.03.4.3.4 Consultation outcomes: an overview 8.03.4.4 Improving Health-care Communication 8.03.5 HEALTH CARE IN HOSPITALS

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8.03.5.1 Psychological Effects of Hospitalization 8.03.5.1.1 Physical and social environment 8.03.5.1.2 Communication in hospital 8.03.5.2 Children in Hospital 8.03.5.3 Psychological Aspects of Specific Hospital Treatments 8.03.5.4 Stressful Medical Procedures in Hospital 8.03.5.5 Psychological Interventions for Stressful Medical Procedures

100 100 101 102 102 104 104

8.03.6 CONCLUSION

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8.03.7 REFERENCES

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sense of and respond to symptoms, leading up to the decision to seek health care. Following this, a large part of the chapter is concerned with the process and outcome from medical consultations. Finally, it considers some very specific health-care settings such as hospital

8.03.1 INTRODUCTION This chapter is concerned with a range of psychological processes involved in the entry into, experience of, and outcome from health care. It begins by considering how people make 79

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environments and surgical treatments where psychological factors can play an important role in adaptation and recovery. Thus, the chapter covers the three following broad areas, which form its major subsections: (i) perceiving symptoms and entry into health care, (ii) health-care professionalÐpatient communication, and (iii) health care in hospital. It is important to note at the outset that this chapter does not deal with the nature of healthcare systems and the ways in which these are organized and accessed. Health-care systems vary greatly from country to country and there can be considerable differences in the ease of access to health care, the relative roles of the primary and secondary care sectors, and the ways in which health care is funded and delivered. All these are extremely important contextual factors which can directly influence the experience of health care for the individual but a consideration of their influence is beyond the scope of this chapter. The focus here will be on those psychological processes involved in the entry into and use of health services, and which may be seen across different health-care systems. 8.03.2 THEORETICAL BACKGROUND Although this chapter focuses on a range of psychological processes and issues, there is a general model which unifies many of the various themes, particularly from the patient's perspective. This is the self-regulatory approach (e.g., Carver & Scheier, 1990; Leventhal et al., 1997). The core concept here is that the individual attempts to make sense of threats to health using preexisting knowledge or schema which give rise to behavioral responses (e.g., taking nonprescribed medicines, deciding to seek medical help, following medical advice, etc.). Thus, many of the individual's behaviors within the health-care setting can be understood from the perspective of their own thoughts and ideas. These are not static but may well change and develop with the experience of new symptoms or information. Self-regulation is therefore a dynamic process in which the individual attempts to preserve the

sense of self and to solve the problem of what is happening to their health. The individual's initial representations of a health problem (e.g., ªthis stomach pain is a temporary problem brought on by something specific such as over-eatingº) give rise to specific coping procedures (e.g., not eating, taking antiacids) which are appraised for their effectiveness (see Figure 1). If the appraisal process results in the view that the mode of coping is not working, then another coping procedure may be selected or the individual may change their view about the nature of the problem (e.g., ªthis stomach pain has lasted for the whole day and has not responded to indigestion medicationÐit must be something more seriousº) and their response to it. The core of the self-regulatory approach is the individual's own understanding or representation of their situation. Work by Leventhal and colleagues (Leventhal et al., 1997; Leventhal, Nerenz, & Steele, 1984) has shown that this representation is built around five distinct but interrelated themes, namely identity, cause, time-line, consequences, and cure/control. On experiencing a new symptom, the individual typically will provide a label or description and possibly search for or link this with other symptoms which they are experiencing. These aspects constitute their perceived identity of the problem, and typically this is linked with a causal explanation, as well as some expectations about how the problem will last (time-line), its likely effects (consequences) and the extent to which it is amenable to cure or control. These representations will influence how the individual responds to the problem in the short-term and the longer-term, if it persists. They will also provide the conceptual framework for providing and making sense of information within consultations with health-care professionals, as well as for evaluating the appropriateness and efficacy of recommended treatment or advice. In some of the following sections (e.g., symptom perception), this self-regulatory, schema-based approach will be very obvious but in others it will be less clear or less pertinent.

Cognitive representation of illness/health threat

Coping

Appraisal

Representation of emotion (fear/distress)

Coping

Appraisal

Internal and environmental stimuli

Figure 1

Leventhal's self-regulatory model (adapted from Leventhal, Diefenbach, & Leventhal, 1992).

Perceiving Symptoms and Entry into the Health-care System Nevertheless, it is a central tenet in this chapter, just as it is in many other areas of psychological research. Just as individuals actively interpret and make sense of their physical (Eysenck & Keane, 1995) and their social environment (Fiske & Taylor, 1991), it will be shown that the psychological processes involved in experiencing symptoms and utilizing health care can be understood in a similar way (Weinman & Petrie, 1997). 8.03.3 PERCEIVING SYMPTOMS AND ENTRY INTO THE HEALTH-CARE SYSTEM There are many reasons why people gain access to health care. Increasingly people are encouraged to attend on a regular basis for check-ups or for screening or preventive purposes, but by far the most common reason for seeking medical help is the experience of a symptom. At first sight, the relation between symptoms and entry into health care might appear straightforward. A simplistic model of the relation between symptom experience and health-care utilisation would probably involve the idea of a threshold of symptom severity, and that individuals would only seek care when this notional threshold is exceeded. As we shall see, this simple model is untenable and it is necessary to understand first how symptoms are perceived and then to examine how they influence behavior, including help-seeking behavior. 8.03.3.1 The Nature and Experience of Symptoms There are continuous changes in bodily functions but individuals have limited awareness of these. In a series of studies, Pennebaker (1982) examined the awareness of a number of changing bodily processes (e.g., heart rate, finger temperature) and showed that this process is neither direct nor accurate The awareness and interpretation of bodily processes has been found to involve a range of factors, as will be outlined below, and an understanding of these is a basic first step in explaining why people seek help for health problems. A fundamental issue here concerns the point at which the individual decides that a particular change in bodily functioning might constitute a symptom and may therefore be indicative of a medical condition. Symptoms are experienced quite frequently. This has been found by asking people to recall symptoms experienced in the preceding days or weeks or by getting them to record their symptoms, by keeping a health or symptom diary. Typically people recall experiencing between two and

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three symptoms per week and very often symptom diaries reveal the presence of daily symptoms. Most of these are transient and, while they may make the individual wonder about their nature and cause, they may not give rise to any further behavior such as taking medication or seeking medical help. One study, of people keeping health diaries, found that while symptoms were recorded on 38% of the days in the study period, medical care was sought for only 5% of those symptoms (Verbrugge, 1985). This ªclinical icebergº has been reported elsewhere (e.g., Last, 1963) and it is clear that neither the experience nor the severity of a symptom provides an adequate explanation of why people seek medical help. There are many people who seek help for symptoms which doctors consider to be ªminorº or ªtrivialº and there are also people who delay or do not seek help for symptoms which may reflect serious or life-threatening conditions, and some examples of this will be discussed in Section 8.03.3.4. In order to understand the relation between symptoms and help-seeking behavior, it is necessary first to examine how symptoms are perceived and then to examine their role, alongside other factors, in initiating access to health care. The studies of Pennebaker (1982) and others show clearly that symptom perception shares many characteristics of other perceptual processes, such as those which are involved in the recognition of objects and sounds in the external world. Thus, there is considerable evidence that bodily changes are not perceived accurately and that there can be large variations in what is attended to and how it is perceived and interpreted. Just as attentional processes and ªtop-downº influences in the form of knowledge and prior experience can determine how objects are perceived (Eysenck & Keane, 1995), the same factors play a critical role in influencing our awareness of and interpretation of bodily changes. Physical symptoms are often ambiguous and their interpretation involves a number of cognitive-perceptual processes which are subject to both psychological and social influences (Cioffi, 1991; Pennebaker, 1982). The experience of a bodily symptom initiates an active memory search in order to generate comparisons between current stimulus and the concrete and abstract knowledge contained in the person's illness schemas. These cognitive structures are the dominant source of information for the appraisal of health threats (Leventhal et al., 1997). According to Bishop (1991), the information contained in illness schemas forms a stable knowledge base or prototype which acts as a standard for the comparison and interpretation

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of bodily symptoms. Current symptoms are compared with prototypical patterns of illness retrieved from long-term memory. If there is a close enough resemblance between the illness prototype and the current symptoms, then a congruent interpretation will be made. However, H. Leventhal and Diefenbach (1991) propose that comparisons are made not with illness prototypes but with specific illness episodes. They suggest that matching to prototypes is likely to result in an ambiguous outcome and that the resulting uncertainty will initiate additional, more specific searches. Croyle and Barger (1993) comment that both types of matching may occur. Frequently experienced illnesses such as flu may promote the formation of prototypes, whereas unusual symptom clusters may give rise to matching with specific illness episodes. Cioffi (1991) has described a model of symptom interpretation which is compatible with the self-regulation model. Her model proposes that symptom interpretation is a function of interactions between ªbottom-up,º stimulus-driven processes, situational cues, and ªtop-downº processes which reflect the influence of higher level cognitive structures (e.g., knowledge, expectations) on other cognitive functions such as attention and memory. According to Cioffi (1991), ambiguous physiological changes compete with other events for a share of our fixed attentional capacity. If the stimuli are strong enough, or if there is little competition from other sources, the sensations are noticed and given a somatic label. An attribution is then made regarding the cause of the change and its consequences. Causal attributions reflect the relative influence of the procedures involved in the interpretative process and may be symptomological (e.g., muscle pain as a symptom of illness), or nonsymptomological (e.g., muscle pain due to exercise). Symptomological attributions can reflect preexisting hypotheses such as particular health concerns which may bias both attention to bodily stimuli and choice of attribution. Alternatively, in the absence of a prior hypothesis, a memory search is launched in order to generate plausible attributions. These processes, along with subsequent behavioral responses, are mediated by factors such as mood, coping repertoire, available choices, and both situation-specific and general goals. A schematic of this model is shown in Figure 2. 8.03.3.2 Factors Influencing Symptom Perception The appraisal of health threats may be influenced by a range of personal, psychological, social, and cultural factors (Croyle, 1992). While

many of these factors interact, they can be loosely categorized into those which affect or are a part of the self-system and those which stem from external, social, and cultural influences. 8.03.3.2.1 Attentional focus Symptom perception is subject to the same limits and biases as other types of sensory processing, where there are well-demonstrated limits in attentional capacity which can be influenced by internal states, perceiver's intentions, and environmental stimuli and contexts (e.g., Kinchla, 1992). Similarly, a number of studies have shown that symptom perception depends on what the individual is attending to as well as what is happening in the perceiver's environment. For example, Pennebaker (1982) reports a study in which the symptom reports of fatigue were compared in two groups of joggers, one running around a track and the other on a cross-country run. The cross-country group report less fatigue, presumably because of the more varied and interesting surroundings. Similarly it has been reported that, while watching films, people are more likely to notice itchy/tickly throat sensations and then cough during boring parts of the film. Attention to symptoms is to some extent under strategic control and a number of studies have examined the effects of attention to or distraction from physical sensations (Cioffi, 1991). Experimental studies examining the effects of various unpleasant stimuli (e.g., loud noise, pain induced by immersing one's hand into iced water) on tolerance and arousal, have shown that active distraction can have shortterm advantages over more direct attention to the stimuli (Mullen & Suls, 1982). However, focused attention results in more favorable outcomes than distraction when the noxious stimulus is chronic and when the attentional strategy involves focusing on concrete aspects of the sensation (Suls & Fletcher, 1985). This raises the question as to whether focusing on aversive symptoms such as pain could have any positive or negative effects which could be utilized in the clinical situation. Work by Leventhal, Leventhal, Shacham, and Easterling (1989) indicates that focusing on sensory properties of sensations can result in reduced levels of distress. This type of sensory focusing or monitoring serves to direct attention to more objective, sensory properties of the stimulus and away from the more negative, emotionally arousing aspects, resulting in a more neutral interpretation and response. This can be used to good effect in providing sensory information to patients prior to stressful medical procedures and surgery (see Section 8.03.5.5).

Perceiving Symptoms and Entry into the Health-care System

Behavior

Mediators

Prior hypothesis

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communication with other people, particularly medical practitioners (Leventhal et al., 1984). The body or self schema also affects the interpretation of health threats as it provides a basis for comparing deviations from the norm and for discriminating normal age-related changes from illness (Keller, Leventhal, Prohasha, & Leventhal, 1989). Indeed, with older people there is evidence of a bias towards agerelated attributions (i.e., ªit's because I am oldº) which can serve to delay seeking help or prevent taking appropriate action (E. Leventhal & Crouch, 1997). 8.03.3.2.3 Disposition and emotions

Attributions

Somatic label

Physical state Figure 2 A model of symptom perception (adapted from Cioffi, 1991).

8.03.3.2.2 Knowledge and expectations The knowledge contained within illness schemas imposes meaning on internal and external events (Leventhal et al., 1984). A powerful illustration of the influence of schema contents on the interpretation of somatic stimuli comes from studies of patients suffering from panic disorder and hypochondriasis whose catastrophic illness-related interpretations of benign bodily stimuli reflects their current health concerns (Warwick & Salkovskis, 1990). Similar influences of catastrophic interpretations on symptoms can be seen in patients with chronic fatigue syndrome (Moss-Morris, 1997) and with chronic pain disorders (e.g., Keefe, Brown, Wallston, & Caldwell, 1989). In all these situations the catastrophizing individual will be likely to interpret a bodily symptom in a very negative way (i.e., perceive it as indicative of a serious problem), which then will generate even higher levels of anxiety and an increased focus on and negative interpretation of related symptoms. In addition to personal illness experience, illness schemas are derived from illness information current in the culture and from social

The content and activation of illness schemas may also be influenced by dispositional factors such as psychological traits and emotions (H. Leventhal & Diefenbach, 1991; Leventhal, Diefenbach, & Leventhal, 1992). For example, Leventhal et al. (1992) propose that personality factors such as repression-sensitisation (Byrne, 1964) may affect illness representations by influencing attention to and interpretation of somatic states. Also, high levels of negative affectivity, which is highly correlated with neuroticism (Watson & Clark, 1984), have been found to predict symptom reporting and health complaints, but not actual health status (Watson & Pennebaker, 1989). Laboratory studies involving experimental induction of a negative mood state in volunteer subjects results in more negative judgements of health status and higher levels of symptom reporting than is reported by comparison subjects who had undergone positive mood induction (Croyle & Uretsky, 1987). Similarly, when individuals are asked to keep a diary of symptoms and moods, they report higher levels of symptoms during negative mood states (Verbrugge, 1985). 8.03.3.2.4 Contextual factors Social information and the environmental and cultural context also affect symptom perception (Croyle & Barger, 1991). When intrapersonal memory searches aimed at establishing the meaning of symptoms fail to provide an answer, social information becomes an important factor. In particular, the social comparison process, in which illness information is shared within the social network, has a significant influence on symptom appraisal (Leventhal & Diefenbach, 1991). Medical sociologists describe the way people use ªlay referralº networks in trying to make sense their symptoms. These reflect the use of advice given by family and friends, who may often refer the individual to others who are known to have knowledge or experience which could help in

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throwing some light on the nature of the problem (see Armstrong, 1989). Situational and contextual cues can play an important role in interpreting symptoms and in the generation of illness representations. For example, Baumann, Cameron, Zimmermann, and Leventhal (1989) found that, in the presence of a stressful life event, participants were more likely to interpret ambiguous symptoms as signs of stress than signs of illness. However, in the absence of stress, an illness interpretation was more likely. While external factors affected judgements about ambiguous symptoms, the effect was constrained by prior knowledge since context did not influence judgements about symptoms representing familiar illnesses. 8.03.3.3 Summary: Symptom Perception The interpretation and response to symptoms is guided by illness schemas and involves several cognitive procedures. Typically, it begins with a search of long-term memory for comparable illness episodes, which promotes comparisons between the current state and previous experience. The outcome of the comparison process influences judgements about illness status and the identity of symptom clusters. These judgements can be mediated by the self-system and by external factors. The influence of the self-system reflects personal illness experience, the cultural knowledge base, the body schema, and personality traits. Symptom appraisal may also be biased by motivational processes aimed at minimizing health threats (Croyle, Sun, & Hart, 1997). For example, in an experimental study, Croyle, Sun, and Louie (1993) found that students who had been told that they had a potentially risky cholesterol level actually rated high cholesterol as less serious than those who were informed that theirs was in the normal range. Contextual and situational cues may also modify symptom interpretation, by the provision of specific local information (e.g., other people with similar symptoms) or via selective attention to specific aspects of the symptom experience (Cioffi, 1991). 8.03.3.4 Symptom Perception and Help Seeking From a population perspective, the experience of symptoms is widespread and it is clear that the majority of these are transient and benign. For the individual, each symptom is evaluated in terms of its potential threat and decisions will be made on how best to respond on the basis of past experience and the present context. Thus, the perceived identity and cause of the symptom and its anticipated timeline and consequences will give rise to particular health-

related behaviors. The most common initial response is to anticipate that the symptoms will be short-lived and can be attributed to a specific situational factor but there are important individual and cultural differences in this respect (Robbins & Kirmayer, 1991; Kirmayer, Young, & Robbins, 1994). These authors have carried out studies in which they presented various imaginary symptoms (e.g., dry mouth) to participants and asked them to choose the most likely cause from three alternatives, of which one was situational (ªI need to drink more liquidsº), one of which was physical (ªthere is something wrong with my salivary glandsº), and the other was psychological (ªI must be scared or anxious about somethingº). Situational explanations were chosen most frequently but some individuals showed clear biases towards selecting more physical or psychological explanations. A bias towards opting for physical explanations for symptoms could lead to potential conflicts in health care, when tests fail to reveal any organic cause for a problem. To some extent this can be observed in people with chronic fatigue syndrome since they commonly attribute their symptoms to a physical cause in the absence of any confirmatory evidence (MossMorris, 1997). This, in turn, may reduce the perceived relevance of any psychological treatments which may be offered and have adverse effects on treatment adherence (see Section 8.03.4.3.3). Seeking medical help is a relatively uncommon response since the majority of individuals wait, do nothing, or self-medicate (Freer, 1980). However, there has been considerable interest in understanding the responses of two groups of individuals: those who persistently seek help for what appear to be quite minor symptoms and those who delay seeking help while experiencing serious or life-threatening symptoms. Studies of frequently attending patients reveal that they are typically high in trait anxiety (Banks, Beresford, Morrell, Waller, & Watkins, 1975). This is consistent with the finding that trait anxiety is associated with a stronger attentional focus on internal bodily states, as well as higher levels of symptom reporting (Watson & Pennebaker, 1989). Also, these individuals are more likely to make more negative interpretations and attributions for particular symptoms than their less anxious counterparts (Sensky, Macleod, & Rigby, 1996). Given the negative cognitions which accompany anxiety (Lucock, Morley, Peaks, & White, in press), it is therefore not surprising that there will be greater concern and an accompanying need for reassurance but, as is discussed more fully at the end of this section, the rather minimal reassurance which is

Perceiving Symptoms and Entry into the Health-care System very often provided by the doctor is not likely to be effective in reducing anxiety or preventing further help-seeking. Delay in seeking help for serious symptoms is a complex process which depends critically on the individual's perception of their symptoms as well as contextual factors, such as barriers to health care. Three stages of delay can be identified and have been described by Safer, Tharps, Jackson, and Leventhal (1979) as appraisal delay, illness delay, and utilisation delay. Appraisal delay involves the decision as to whether one is ill, given the particular pattern of symptoms which are being experienced. This stage is very much a function of the sensory properties of the symptoms as well as the way in which these are interpreted either from past experience, from reading about one's symptoms, or from discussion with others. The appraisal stage can be understood easily in terms of the models of Leventhal et al. (1997) and Cioffi (1991) which were outlined earlier in the chapter, since symptoms which do not activate threat-related illness schema are not interpreted as serious or potentially serious and are very unlikely to instigate help-seeking. Illness delay describes the delay between recognising that there is an illness and deciding that professional help should be sought, whilst the time taken from that point to actually seeking help is referred to utilisation delay. Different factors contribute to the various stages of delay, including past experience of symptoms, their perceived consequences and concerns about the possible costs, and negative aspects of the treatment and outcome. One condition where delay can have very serious consequences is myocardial infarction (MI), since early utilization of medical care is associated with improved changes of survival. Death following MI typically occurs within a few hours of symptom onset, yet the evidence shows there is a large variation in utilization delay times and that some individuals put themselves at much greater risk as a result (Dracup et al., 1995). This work also shows that symptom severity and interpretation are important since those who perceive their symptoms as indicative of MI are less likely to delay. Problems caused by patient delay over a longer time period are also found with other conditions, including cancer (Facione, 1993), sexually transmitted diseases (Leenars, Rombouts, & Kok, 1993), and mental health problems (Clausen, Pfeffer, & Huffine, 1982). From the health-care professional's (HCP) perspective it is therefore important to know what symptoms the individual has experienced and the way that these have been interpreted as a basis for understanding the decision to seek

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help. In view of this, it is noteworthy that guidelines for good patient interviewing in primary care include an encouragement to focus on why the patient has come (Pendleton, Schofield, Tate, & Havelock, 1984). Thus, in addition to eliciting signs and symptoms, doctors are expected to develop an interviewing approach which allows patients to express their own ideas or concerns about their condition. From the HCP's perspective, patients may appear to be seeking help for relatively minor symptoms (e.g., transient pain from indigestion) whereas specific contextual factors (e.g., a close relative with a heart problem) may cause the patient to hold a much more serious representation of their problem. A further implication for HCP's lies in the issue of reassurance. As will be outlined in Section 8.03.4.1.1, one of the most common patient expectations for a primary care consultation is to be able to have a better understanding of a current complaint (Williams, Weinman, Dale, & Newman, 1995). Since the majority of symptoms will not be found to be indicative of any underlying problem, as the result of a physical examination or diagnostic test, it is not surprising that the HCP will expect this to be sufficient to reassure the patient. For some patients being told that there is no underlying or serious problem is effective in providing reassurance but there is consistent evidence that this is not always so. For a significant minority, there is continued concern about their health status (Channer, James, Papouchado, & Rees, 1987; Lucock et al., in press). This continued anxiety following reassurance from the HCP may then result in further needless consultations or investigations, and is one of the factors involved in frequent attendance for health care. The key issue here seems to be the nature of the reassuring message which typically consists of reporting that no pathology can be detected and so there is no need to worry (McDonald, Daly, Jelinek, Panetta, & Gutman, 1996). Although apparently comforting from the HCP's perspective, this message only provides negative information and fails to contribute a positive explanation for the symptoms which the patient had or is experiencing. According to Lucock et al. (in press), reassurance in the form of negative information will only provide a short-term reduction of health concern. If symptoms persist or reoccur, then the health concern will also return since the patient still lacks a satisfactory explanation which would enable them to interpret the symptoms as benign. For reassurance to be effective, patients' concerns need to be elicited and appropriate information provided for

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explaining the symptoms. These findings can be understood in terms of Leventhal's self-regulatory model, which was outlined at the beginning of this chapter. If the patient's cognitive representation of a problem is that it is serious (e.g., heart disease) and the diagnostic test fails to provide any evidence for this, then an adequate alternative explanation and discussion of the symptoms will probably be necessary for the patient to generate a more benign representation and therefore be reassured by the test results.

8.03.4 HEALTH-CARE PROFESSIONAL± PATIENT COMMUNICATION The consultation between the patient and the HCP lies at the centre of health care. The information which is transmitted during the consultation is very often critical in the formulation of diagnoses and in the organisation of treatment. Effective communication is necessary to ensure not only that the patients' problems and concerns are understood by the HCP but also that relevant information, advice, and treatment is received and acted upon by the patient. Since the late 1960s there has been considerable research on the medical consultation, prompted to a large degree by the fact that there has been consistent evidence that not only are the process and outcome often unsatisfactory for patients but also there is widespread noncompliance with subsequent treatment recommendations. Early research revealed quite high levels of patient dissatisfaction which was often associated with insufficient information, poor understanding of the medical advice, and subsequent reluctance or inability to follow recommended treatment or advice (e.g., Korsch & Negrete, 1972). These early findings showed that many patients complained that they were not given sufficient information about the nature of their problem, the treatment, and the likely outcome. For example, in the Korsch and Negrete (1972) study, which involved mothers taking their children to a paediatric outpatient clinic, about 20% of mothers were not informed clearly about the diagnosis and nearly 50% were uncertain afterwards as to the course of their child's illness. Similar findings have been produced in more recent studies in a variety of health-care settings and it is notable that these problems are unrelated to the length of time spent with the HCP (Korsch & Negrete, 1972). A related problem involves the use of information, such as medical jargon, by the HCP which the patient misconstrues or cannot understand. Korsch and Negrete (1972) found

that jargon was used in about half the consultations in their study. Other studies have shown how much this ªcommunication gapº reflects differences in biomedical knowledge between patients and HCPs. A good example is seen in Figure 3 which shows some data from a study by Hawkes (1974) who investigated patients' and doctors' interpretations of anatomical terms. Not only did this study show that patients' understanding of anatomical terms is often quite different from that of their doctor but also that doctors may also differ in their use of some terms. Another complaint from patients is that the HCP does not appear to be interested in their presenting problem or in their concerns or worries about it and this is associated with lower levels of satisfaction with the consultation (Williams & Calnan, 1991). Moreover, patients often report feeling that they have not been sufficiently involved in the decision-making which may have occurred in the consultation. Hence, Roter and Hall's (1989) overview of research in this area revealed that patient satisfaction was higher following consultations in which the HCP engaged in more social conversation, positive verbal and nonverbal behavior, and partnership building. The development of relatively unobtrusive audio and video-recording techniques has allowed researchers to investigate the consultation and many studies have analyzed the process of the consultation and attempted to relate process variables or characteristics to outcome. While these studies have identified important themes, they have not always been successful in making clear links between process and outcome (Stiles, 1989). In the absence of simple relations between consultation process variables (e.g., duration or style of consultation) and various outcomes (e.g., satisfaction, adherence, etc.), more recent studies have begun to examine what HCPs and patients bring to the consultation, as well as the importance of contextual factors. As a result, many current frameworks for understanding doctor-patient communication tend to be based on the relations between inputs (i.e., the attitudes, beliefs, expectations, etc. which patient and doctor bring to the consultation), process (the nature of the encounter), and outcome (the short- and longer-term effects on the patient). An example of one such framework is provided by Friederikson (1993) and is shown in Figure 4. An overview of input, process, and outcome factors follows. 8.03.4.1 Input Factors in Communication Input factors which influence the consultation include not only aspects of the doctor and

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Health-care Professional±Patient Communication

In the picture below put a tick underneath the drawing that shows the correct position of the brain

Doctors Patients

0 11 (5.9%)

0 9 (4.8%)

0 53 (100%) 0 0 17 (9.2%) 122 (66.3%) 4 (2.1%) 21 (11.4%)

Total 53 184

Rating Good Fair

In the picture below put a tick underneath the drawing that shows the correct position of the sciatic nerve

Doctors Patients

0 37 (22.8%)

1 (1.8%) 25 (15.4%)

2 (3.7%) 8 (4.9%)

29 (54.7%) 36 (22.2%)

21 (39.6%) 56 (34.5%)

Total 53 162

Rating Fair Poor

Figure 3 Examples of the differences in the use of anatomical terms by patients and doctors (from Hawkes, 1974).

patient but also the context and setting in which the consultation occurs. For example, for many primary care consultations in the UK, patients are booked in for 10-minute appointments whereas similar consultations in other countries may typically last two to three times longer. Although longer consultations do not inevitably result in better patient outcomes (Morrell, Evans, Morris, & Roland, 1986), the resulting process may well be different. Similarly, the layout of the consulting room, including the proximity and positioning of the HCP and patient, can also influence the communication process. 8.03.4.1.1 Patient input factors When considering patient ªinputº factors which can influence the medical consultation, a number of studies have shown that patients cope with health threats in diverse ways and show consistent differences in how they want to

be involved in the health-care process (Krantz, Baum, & Wideman, 1980). These studies also show that patients differ in the amount of information which they would like to receive about their health problem. Similarly, a distinction has been made by Miller, Brody, and Summerton (1988) between ªmonitorsº and ªblunters,º with the former being more inclined to need and seek out information about their problem and treatment, whereas the latter group prefer consultations in which relatively limited information is provided. This is similar to the repression-sensitisation classification, described in Section 8.03.3.2.3, and reflects the extent to which patients choose to cope with their health problems in a problem-focused or an avoidant manner. Patients come into the health-care setting with different levels of biomedical knowledge, based on their past experience. There is also consistent evidence that patients have differing expectations for specific consultations (Williams et al.,

P A T I E N

Initialization

Frame of Reference

Perceptions Compliance

Motivations, goals, needs, expectations

Concern Information exchange

T

Personal information

D

Frame of Reference

T

Acknowledgement of problem

Questions

Physical exam

Perceptions Diagnosis

Diagnosis

Motivations, goals, needs, expectations

Prognosis Treatment/Action

Treatment option

O R

Understanding Relationship

O C

OUTCOMES

PROCESS

INPUT

Medical information

Understanding Relationship

Termination

Figure 4

Information processing model of medical consultation (adapted from Friedrikson, 1993).

S A T I S F A C T I O N

S A T I S F A C T I O N

Health-care Professional±Patient Communication 1995), and an awareness of these can be helpful in understanding not only why they are seeking help at that time but also in being able to respond effectively to their needs. Following the selfregulatory model, described at the beginning of this chapter, it has been found that patients' illness representations will influence their decision to seek help (Cameron, Leventhal, & Leventhal, 1993) and hence their expectations of the consultation. Patient expectations have been conceptualized and defined in a range of different ways. In their review of the literature, Thompson and Sunol (1995) have proposed working definitions for four types of expectations that are used frequently: (i) Ideal. This may be referred to as an aspiration or desire; (ii) Predicted. The realistic, practical, or anticipated outcome which therefore reflects what users actually believe will happen in an health care consultation; (iii) Normative. What should or ought to happen and could be equated with what users are told, or led to believe, or personally deduce that they ought to receive from health services; and (iv) Unformed. This state occurs when users are unable or unwilling to define their expectations, which may be because they do not have any, or find it too difficult to express, or do not wish to reveal their feelings, due to fear anxiety, conformity to social norms, etc. The term ªexpectationsº itself therefore needs to be clearly defined and one reason for the lack of consistency in the research in this area is that many studies have failed to do this. An example of this problem can be seen in a study carried out to investigate the relationship between patients' expectations and HCPs' actions (Webb & Lloyd, 1994). Primary care patients' expectations were measured using questionnaires which asked each patient ªHow do you think the doctor will be able to help you with your problem?º and instructed the subjects to tick as many of the following actions: ªgive you a prescription,º ªrefer you to hospital,º ªgive you advice,º ªhelp you in some other way.º By this method it would not be clear to the patients whether they should respond according to what they themselves want (i.e., ªidealº expectations) or what they merely expect that they will be given by the doctor (i.e., ªpredictedº or ªnormativeº expectations). One method of measuring patients' expectations is to categorize their informational needs into distinct categories such as information in relation to aetiology, diagnosis, prognosis, treatment, and social effects (Kindelan & Kent, 1987). However, the measurement of patients'

89

expectations by the simple categorization of needs according to the medical condition can be inadequate since patients may require varying levels of information about the presenting symptoms. The range of psychosocial and medical expectations of primary care patients has been investigated by Good, Good, and Nassi (1983). They have developed a scale (Primary Care Patient Request Scale) from the responses of North American primary care patients and it requires patients to rate the extent to which each item on the scale reflects their needs prior to the consultation. The results of a principal components analysis to investigate underlying components on the types of consultation requests of primary care patients revealed five distinct dimensions: treatment of psychosocial problems, medical explanation, supportive communication, test results, and ventilation and legitimation. A simpler version of this scale, developed by Salmon and Quine (1989), measures four components: explanation and understanding, support, medical treatment, and information-seeking. Using this scale, Williams et al. (1995) have shown that the most common expectation in primary care patients is for explanation and understanding of their problem, with much smaller numbers wanting tests, diagnoses, or support. Thus,patients do not always want or expect diagnosis or treatment since they may be looking to the consultation to gain more understanding of their health problem or may be hoping for support or understanding from their doctor. These prior expectations can be important in determining outcomes, since consultations in which patient expectations are met have been shown to result in greater satisfaction and an increased willingness to follow advice or treatment (Williams et al.). 8.03.4.1.2 Health-care professional input factors It is important to acknowledge that healthcare professionals can vary considerably in the attitudes and beliefs which they have not only about their own and the patient's role, but also about the function and conduct of the consultation. Doctors have been categorized in various ways according to their role perceptions and the extent to which they concentrate on the technical or more psychosocial aspects of patient care, as well as their beliefs about whether patients should be actively involved in the consultation and in decision-making about the management of the clinical problem (e.g., Grol, de Maeseneer, Whitfield, & Mokkunk, 1990). Inevitably, these broad attitudinal differences are reflected in differences in the way in which the consultation is conducted and in

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other aspects of professional behavior, including decision-making, prescribing, and management of clinical problems (McGee, 1997). Similarly, other HCPs have also been found to vary in their beliefs and attitudes in ways which impact on the way they manage their encounters with patients (Marteau & Johnston, 1990). In clinical psychology, one very obvious HCP input factor is the theoretical orientation of the practitioner, since this can have a major influence on the way in which clients' problems are conceptualized and managed. It has also been shown that personal characteristics of the practitioner can have significant effects on the process and outcome of psychological therapy (e.g., Strupp & Hadley, 1979). A few studies have attempted to examine the interaction of clients' and therapists' values in psychological therapies (e.g., Kelly, 1990). There is evidence that strong initial differences between client and therapist may have significant negative effects on the early stages of therapy (Kelly & Strupp, 1992) and may be a contributory factor to client dropout (Vervaeke, Vertommen, & Storms, 1997). Although HCPs undergo a common training and share a common body of knowledge and skills, wide variations in their clinical behaviour have been noted (e.g., Marteau & Johnston, 1990). Part of this variation is a by-product of personality differences and can be seen in differences in interpersonal aspects of clinical practice but part is a reflection of differences in the approach to clinical problems. Some of these are between-individual differences, whereas others reflect factors which can vary within the same individual, such as changing mood, time pressure, and various other contextual influences. In their overview of clinical decision-making, Schwartz and Griffin (1986) point out that there are often substantial disagreements between doctors when interpreting the same clinical information (e.g., X-rays). They also note that doctors may be inconsistent and disagree with their own previous judgements. Clinical decision-making has been the subject of psychological research for a number of years and there is accumulating evidence of inter- and intra-individual differences in both the process and the outcome (Schwartz & Griffin, 1986). A detailed account of medical decision-making is beyond the scope of this chapter and so what follows is a brief outline of the process together with a focus on some factors which are associated with variation in decision-making performance. In responding to a new patient, the doctor will first try to solve the problem of what is wrong, based on the various signs and symptoms, and

then will have to make a decision about the best approach to treatment. Both these processes occur under conditions of uncertainty and, for much of the time, the doctor's thinking will be based on the use of probabilistic information. The signs and symptoms may be ambiguous and there is often a margin of error in test results. Also, treatment decisions, whether they involve waiting to see what will happen or the prescription of treatment, can involve risks of complications or side-effects. During clinical decision-making, the doctor is often faced with having to process a large amount of information about the patient and the possible diagnoses and treatment options. In this they are subject to the same limits of information-processing capacity which affect all of us (see Eysenck & Keane, 1995). Thus, there are limits in what can be attended to and how much information can be held in working memory. In view of this it is not surprising to find that all doctors acquire heuristics, or general strategies, for processing diagnostic and treatment information and these are subject to a range of influences. Kahnemann, Slovic, and Tversky (1982) have described a number of the heuristics which are used during clinical decision-making. These include the representativeness heuristic (decisions based on the similarity between the present situation and known previous ones) and the availability heuristic (judgments made on the basis of information which is most readily available). The influence of representativeness heuristics can be seen in the initial hypotheses which doctors generate for newly presented symptoms and availability heuristics can be inferred from the influence of such factors as recent or emotionally salient events which readily come to the doctor's mind during the clinical judgment process. ChristensenSzalanski, Beck, Christensen-Szalanski, and Keopsell (1983) have demonstrated an availability bias in doctors' estimates of the risk of different diseases since their overestimates of risks were found to be biased by encounters with people with the disease. Similarly, attitudes and beliefs about the doctor's and the patient's role can influence the weighting given to information from patients (e.g., the relative attention given to physical and psychosocial information). The doctor's mood can affect information-processing in a number of ways by directly influencing the speed and accuracy of clinical problem-solving (Isen, Rosenzweig, & Young, 1991) or possibly by constraining access to mood congruent semantic information, as has been demonstrated on more general studies of the effect of mood on cognition (e.g., Power & Dagleish, 1997).

Health-care Professional±Patient Communication 8.03.4.2 The Consultation Process There are a range of methods and frameworks for analyzing and describing the process of the consultation. One of the broadest distinctions made has been between consultations which are described as patient-centered and those which are HCP-centered, reflecting the extent to which the HCP or patient determines what is discussed (Grol et al., 1990). HCP-centered consultations are ones in which closed questions are used more often and the direction is determined by the HCP, typically with a primary focus on medical problems. In contrast, patient-centered encounters involve more open-ended questions with greater scope for patients to raise their own concerns and agendas. Related to this are consistent differences in the extent to which the HCP responds to the emotional agendas and the nonverbal cues of the patient (see Roter & Hall, 1989). Although there has been a tendency to consider the more patient-centered/emotionfocused approach as preferable, what appears to be more important is for HCP and patient to be in agreement over the nature of the problem and the best course of action (Starfield et al., 1981). A number of specific methods have been developed for carrying out detailed analyses of the social interaction between HCP and patient based on audio or videotapes or transcripts of the consultations but, as yet, there is no real consensus as to the best method for this. One of the earliest of these was the Bales's (1950) process analysis system which distinguishes verbal statements into those which are task or emotion-focused and then into more specific categories and this approach has been adapted and extended by a number of other investigators (see Roter & Hall, 1989). With Bales's system, the coding can be carried out using transcripts, audiotapes, or first-hand observations (Bales, 1950; Korsch & Negrete, 1972). Verbal behavior is usually studied, although nonverbal behavior may also be coded. A unit can be as short as a single word or as long as a lengthy sentence; compound sentences are usually divided at the conjunction and sentence clauses are scored as separate units when they convey a single item of thought or behavior. The rationale underlying this approach is that all interpersonal statements can be classified as falling into one of two domains, the task and the socioemotional. Interaction is described in terms of 12 mutually exclusive categories: six ªeffectively neutralº in the task dimension (e.g., doctor gives suggestion) and six equally divided into positive and negative affective categories in the socioemotional dimension (e.g., doctor agrees or disagrees).

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Wasserman and Inui (1983) have noted that a strength of Bales's system is that it deals with both the content and relationship levels of the communication and that it is particularly strong on the relationship level, where it is sensitive to the feelings of each communicator. Moreover, it has been shown to be reliable and applicable in diverse situations. Its main weakness is the treatment of information transfer, that is, the transfer of information from the patient to the doctor as well as in the reverse direction. With this system there is a difficulty in categorising statements that involve both information transfer and affective components. As a result, a number of investigators, including Roter (1977), have modified the system to allow direct coding from audiotapes, assessment of the affective aspects of the clinician's behavior, and a more finely tailored categorisation of the clinical encounter. An alternative approach, known as the Verbal Response Mode (VRM), has been developed by Stiles (1978) and which classifies each statement made by the HCP and patient into one of eight basic categories (e.g., questions, giving interpretations, etc.). Good overviews of these different approaches are available elsewhere (e.g., Roter & Hall, 1989) and attempts have been made to define a number of more general ways of classifying HCP-patient interactions. For example, one can distinguish between verbal and nonverbal information and, within the verbal domain, six broad categories can be defined: informationgiving, information-seeking, social conversation, positive talk, negative talk, and partnership building. From a meta-analysis of these broad categories (Roter, 1989) it has been found that for the doctor, information-giving occurs most frequently (approximately 35% of the doctor's communication) followed by information-seeking (approximately 22%), positive talk (15%), partnership building (10%), social conversation (6%), and negative talk (1%). In contrast, the main type of patient communication consists of information giving (approximately 50%) with less than 10% involving information seeking. A comparative study of process analysis methods was carried out by Inui, Carter, Kukull, and Haigh (1982). The Bales, Roter, and the VRM system were applied to 101 new patient consultations at a general medical clinic. The outcome measures were patient knowledge, satisfaction, recall of prescribed medications, and compliance. The findings revealed that the explanatory power of the three systems differed. Roter's system was found to explain 28% of the variance in adherence to prescribed medicines, compared to 19% for the Bales system and none

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for the VRM. The Roter and Bales systems were also better than VRM in explaining variation in satisfaction. More recently, Roter et al. (1997) have used cluster analysis with the Roter Interactional Analysis System (RIAS) to describe doctor's communication patterns in a study of 127 doctors and 537 patients. Their results revealed five distinct patterns: (i) ªnarrowly biomedical,º (ii) ªexpanded biomedical,º (iii) ªbiopsychosocial,º (iv) ªpsychosocial,º and (v) ªconsumeristº (see Table 1). They found that ªbiomedicalº approaches were used more often with more sick, older, and lower income patients by younger, male doctors. Patients and doctors completed a satisfaction questionnaire immediately after the consultation. The highest levels of doctor satisfaction were found in those using the consumerist approach and the lowest levels were found in those using the narrowly biomedical approach. In contrast the highest levels of patient satisfaction were found with those who had seen doctors using the psychosocial communication pattern whereas the lowest satisfaction scores were recorded in those who had experienced either of the two biomedical patterns. A very different approach to process analysis can be found in the studies of Ley and colleagues (Ley, 1988), who have concentrated on the informational content of the consultation and the quality of information provided by the doctor. In particular they have analyzed the content in terms of its level of complexity, comprehensibility, and the extent to which the information is organized. They and others have found that medical information may be too detailed or complex with the result that important information may not be understood or retained by the patient. Ley's studies have shown patients' understanding and recall of the consultation can have a direct influence on treatment adherence or can influence adherence via their effects on satisfaction (see Figure 5). There is even evidence that patients and doctors may interpret the same information in different ways and this communication gap can occur around anatomical information or other technical terms which are used to describe illness or treatment (see Figure 3). These various ways of conceptualizing and analyzing the consultation process have given rise to a large number of indices or categories which have been related to outcomes, often in quite a limited fashion. Outcomes, such as patient satisfaction or adherence to treatment, are likely to be determined by a range of factors, reflecting a complex interaction of input, process, and situational variables.

8.03.4.3 Outcomes of Health-care Communication The efficacy of any communication needs to be evaluated in terms of its effect on outcome. For health-care communication, the ultimate outcome is health but only relatively few studies have measured short or longer-term health outcomes following consultations and these will be mentioned briefly. However, a range of other outcomes have been assessed and these fall into three broad groups, namely cognitive, affective, and behavioral. 8.03.4.3.1 Cognitive outcomes These can be assessed by evaluating changes in patients' knowledge, understanding, and recall of the relevant information provided in the consultation. Ley and colleagues have carried out a number of careful studies of patient recall and these have been summarized (Ley, 1997). Studies which have assessed how much patients are able to recall from consultations have shown that about half the information is retained but there is considerable range. This variation partly reflects the type of setting and sample used and partly the method which is used to test for recall. There are a number of other factors involved including the content of the information, the patients' prior knowledge, and their level of anxiety. With regard to the content and structure of the message, information which is presented early in the consultation is recalled better (the primacy effect) as are statements which are perceived as being important or relevant. Moreover, if the HCP makes an effort to present information in an organized way based around specific themes (e.g., the nature of the problem, the details of the treatment, etc.), then recall is improved. Not surprisingly, the more information which is presented, the smaller proportion is remembered. 8.03.4.3.2 Affective outcome: patient satisfaction One of the broadest indicators of the patients' affective response to a health-care consultation is their overall level of satisfaction. Fitzpatrick (1997) has commented that the concept of patient satisfaction is important because it focuses on the need to understand how patients respond to health care. As a result, it is increasingly being assessed in surveys of healthcare settings as a marker of quality of care, along with such other dimensions of quality as access, relevance to need, effectiveness, equity and efficiency. Patient satisfaction is also considered important since it is associated with patient

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Health-care Professional±Patient Communication Table 1 Communication patterns and their frequency of use in primary care consultations. Type of pattern Narrowly biomedical Expanded biomedical Biopsycho-social Consumerist

Psychosocial

a

Characteristics

Consultations

% of doctorsa

Low % of talk on psychosocial topics; high % of biomedical information given by dr. & pt.; high % of question asking by dr. High % of question asking by dr.; moderate levels of biomedical and psychosocial exchange for dr. & pt. Balance between biomedical and psychosocial exchange in dr. & pt.; fewer questions than in the two biomedical patterns High frequency of question asking by pt. and information giving from dr.; low levels of question asking by dr. and of psychosocial exchange Dominated by psychosocial exchange; dr. talk divided between psychosocial and biomedical; high % of pt. psychosocial talk; lowest levels of question asking by dr. & pt.; dr.- very positive and accepting of pt. input

32

68

33

61

20

42

8

23

7

19

percentage of doctors with at least one of their consultations falling in the pattern Source: Roter et al. (1997).

cooperation (Hall, Roter, & Katz, 1988; Roter, Hall, & Katz, 1987), improved health status (Eraker, Kirscht, & Becker, 1984), and fewer malpractice suits (Vaccarino, 1977). Increased levels of satisfaction have also been found to be related to other important outcomes from the consultation, particularly adherence or compliance with treatment or advice. Although the concept of satisfaction has good face validity, there is a singular lack of good theory or consensus about its nature or structure. Some approaches are based around the anxiety surrounding illness and equate satisfaction with the adequacy with which this is dealt with by HCPs. Stimson and Webb (1975) have suggested that patient satisfaction is related to the perceptions of the outcome of treatment and the extent to which treatment meets the patient's expectations. This can be related to the self-regulatory model, in that greater satisfaction would be predicted if the patient's own representation of the problem is taken into account by the HCP and if the information which is provided allows the patient to develop a representation of the problem and the treatment which reduces their uncertainty and facilitates their coping, including their adherence to treatment (Leventhal & Cameron, 1987). More recently Fitzpatrick (1997) has promoted the idea of patient satisfaction as a multidimensional concept, since patients have been found to have differing views about different aspects of their health care, such as

the HCP's behavior towards them, the information provided, the technical skills of the HCP, and the access to and quality of the health-care setting. Despite this, there is evidence that the behavior of the HCP is the critical determinant and one which can significantly influence ratings of all the other aspects of health care. Although patient satisfaction appears to be a relatively straightforward concept, there remain a number of difficulties in measuring it. Results from most satisfaction surveys reveal very skewed data, apparently indicating very high levels of satisfaction across patient samples, particularly amongst older patients (Hall & Dornan, 1988). Part of this problem seems to lie in the reluctance of patients to criticize healthcare services and part of it is due to the structure of the questionnaires which have been used to assess patient satisfaction. Comparative studies of different methods have shown variability in satisfaction across measurement approaches. Wide variation in satisfaction scores between three commonly used methods has been reported (Counte, 1979). For example, consistently lower rates of satisfaction are found when the same respondents use a five-point rating scale ranging from ªpoorº to ªexcellentº compared to a six-point rating scale ranging from ªextremely satisfiedº to ªvery dissatisfiedº (Ware and Hays, 1988). In addition, the use of more in-depth methods which require patients to describe their experiences of health from their own perspective, typically give rise to a more critical view (Fitzpatrick & Hopkins, 1993).

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Understanding

Satisfaction

Adherence

Recall Figure 5

Ley's cognitive model, showing the relations between the patient's understanding, recall, and satisfaction with the consultation and subsequent treatment adherence.

Although these do not provide a quantitative measure, they can be used to highlight areas of dissatisfaction. There are many patient satisfaction questionnaires that have been developed for use in different health-care settings. For assessing patient satisfaction with the consultation, one of the most widely used measures is the Medical Interview Satisfaction Scale (MISS) (Wolf, Putnam, James, & Stiles, 1978). This scale measures satisfaction with three aspects of the medical consultation. First, it assesses the extent to which the patient feels that the doctor listens, understands, and is interested (affective). Second, it assesses the patient's evaluation of the doctor's competence in the consultation (behavioral) and the third aspect is concerned with the amount and quality of information provided (cognitive). Bowman, Herndon, Sharp, and Dignan (1992) have identified a number of important structural and measurement criteria for an adequate patient satisfaction scale and have reported that the MISS meets all of these. Moreover, it has good internal consistency and correlates highly with other equivalent measures (Kinnersley, Stott, Peters, Harvey, & Hackett, 1996). 8.03.4.3.3 Behavioral outcome: adherence The most widely studied behavioral outcome from health-care consultations is reflected in the extent to which the patient adheres to the advice or treatment offered by the HCP. Many consultations result in the prescription of treatment or advice by the HCP and the appropriate adoption of self-care behaviors, including use of medicines, is a key aspect to the self-management of most chronic illnesses. However, many patients fail to do this and low rates of adherence to recommended treat-

ment are seen as problematic in most chronic diseases including asthma (Yeung, O'Connor, Parry, & Cochrane, et al., 1994), diabetes (Glasgow, McCaul, & Schafer, 1986), heart disease (Horwitz & Horwitz, 1993; Monane, Bohn, Gurwitz, Glynn, & Avorn, 1994), cancer (Lilleyman & Lennard, 1996), and kidney disease (Cleary, Matzke, Alexander, & Joy, 1995), as well as in psychological treatments, such as relaxation training for anxiety-related disorders (Taylor, Agras, Schneider, & Allen, 1983). The incidence of reported medication nonadherence varies greatly from 4±92% across studies, converging at 30±50% in chronic illness (Haynes, Taylor, & Sackett, 1979; Meichenbaum & Turk, 1987). In the area of primary prevention, it has been found that many participants drop out of lifestyle change programs designed to improve diet or reduce health risk behaviors (Dunbar & Agras, 1980). Even patients who have experienced major health problems, such as heart attacks, may show low levels of uptake of rehabilitation programs as well as considerable variation in the adoption of recommended lifestyle change (Petrie, Weinman, Sharpe, & Buckley, 1996). In the area of mental health, there is also evidence of significant rates of nonadherence to various recommendations from HCPs. For example, about half of those undergoing intake in a mental health clinic were found to fail to attend for the first arranged interview and something like three-quarters of psychotherapy patients have been found to drop out by the fifth session of treatment (Phillips, 1988). There has been a major interest in patient adherence for many years since it has been found that many so patients fail to follow advice or treatment. In view of the importance of this topic, the following section will present an extended overview of it, focusing on the

Health-care Professional±Patient Communication nature of the concept and its causes, as well as ways in which it can be influenced by specific interventions. Although adherence may be simply defined as ªthe extent to which the patient's behavior coincides with the clinical prescriptionº (Sackett & Haynes, 1976), there are several conceptual and methodological issues (Gordis, 1976). It is neither usually possible nor desirable to define nonadherence as an ªall or nothingº response in which the patient either completely follows the HCP's instruction (adherence) or deviates from it in some way (nonadherence). For most treatments, the need for total adherence is questionable and this has led Gordis (1976) to define nonadherence as ªthe point below which the desired preventative or desired therapeutic result is unlikely to be achieved.º The percentage adherence necessary to achieve the desired effect varies between treatments and between and within individuals. Many individuals, particularly those with chronic health problems, are required to adhere to a variety of recommendations from their HCPs. For example, diabetic patients are required to take medication, control their diet, and check their feet and blood glucose levels on a regular basis but it has been found that these behaviors are not highly correlated (Glasgow, McCaul, & Schafer, 1987). Nonadherence behaviors may be categorized as either active or passive. Active nonadherence arises when the patient makes a strategic decision not to take the treatment as instructed. An example of this type of behavior was found among hypertensive patients who believed that they could judge when their blood pressure was high by the presence of symptoms such as stress or headache and thus took antihypertensive medication only when these symptoms were experienced (Baumann et al., 1989; Meyer, Leventhal, & Guttman, 1985). Active nonadherence behavior has been noted among several chronic illness groups including those with asthma (Becker et al., 1978; Woller, Kruse, Winter, Mans, & Alberti, 1993), rheumatoid arthritis (Lorish, Richards, & Brown, 1990), epilepsy (Conrad, 1985), and hypertension (Morgan & Watkins, 1988), and may be particularly influenced by the patients' perception of their problem as well as their level of satisfaction with the HCP and the consultation. From a self-regulatory perspective, the level of treatment adherence may be indicative of a strategic coping response which is entirely consistent with the patient's view of their problem (Leventhal & Cameron, 1987). Thus, patients who believe that their problem will not last for long have been found to be less likely than those with a more chronic timeline

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representation to adhere to their medication over a long period of time (Meyer, Leventhal, & Guttman, 1985). Passive nonadherence may be unintentional when the patient's intentions to follow treatment recommendations are thwarted by barriers such as forgetting, and inability to follow treatment instructions because of a lack of understanding or physical problems such as poor eyesight or impaired manual dexterity. Thus, if the quality of communication is poor and patients receive information which is difficult to understand or recall, as has been outlined above, then this makes it less likely that treatment will be adhered to (Ley, 1988). (i) Measuring adherence Adherence measures can be divided into two broad categories according to whether the assessment is direct or indirect. Direct measurement entails observing the required adherence behavior such as the ingestion of the drug or by detecting its presence in body fluids. Indirect measures assume ingestion based on proxy evidence such as the patient's report or the number of dosages removed from a container. The strengths and weaknesses of available direct and indirect methods have been reviewed extensively (e.g., Rudd, 1993). At first sight, direct methods might appear to be the best way to assess adherence as other methods do not directly confirm that the medication has been ingested (Caron, 1985). However, these techniques are problematic partly because they may be difficult to carry out and partly because there is not a one-to-one relationship between the amount of medication or tracer taken and the concentration found in body fluids. Furthermore, a major drawback of direct methods is that they are invasive, expensive, of questionable reliability, and provide no indication of the type or time-course of nonadherent behavior. A commonly used indirect method for assessing adherence is to count the number of dosage units left in the container and compare this to the number which would have been left had the patient followed the instructions. This method has the advantages of being technologically simple and inexpensive. However, some studies have shown that pill counts may under-estimate the true level of nonadherence (Kruse, Nikolaus, Rampmaier, Weber, & Schlierf, 1993; Rudd, Ahmed, Zachary, Barton, & Bonduelle, 1990). For example, patients may remove medication for reasons other than to use it. They might give the medication to someone else, or transfer it to another container, or may deliberately discard doses prior to monitoring to create an impression of high adherence.

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In the 1990s, technological developments have allowed the incorporation of electronic devices into the medicine container to record the time and date of usage. The major advantage of these devices is that potentially they provide a profile of medication taking rather than simply detailing how much was taken (Kruse et al., 1993; Rudd et al., 1990). However, as with the pill count method, a dose removed is not necessarily a dose taken. Furthermore, if inclusion of the monitoring device changes the appearance of the medicinal product, this will alert the patient to the fact that they are being monitored and may change behavior. Similarly studies assessing adherence to behavioral treatments, such as the use of relaxation tapes, have required the users to keep diaries recording their daily use of the tapes (e.g. Bennett & Millard, 1985) and it is very likely that this self-monitoring process will influence rates of adherence. One of the most widely used methods of assessing adherence is patient self-report which is held to be a valid indicator of treatment adherence that is practical and useful in a wide variety of research settings (Ley & Llewellyn, 1995; Meichenbaum & Turk, 1987). One problem with self-reported adherence is that questions about medicine taking are often presented at a time and place which is quite distant from the actual event and so reports are subject to recall effects. In particular, even when they admit to nonadherent behavior, people tend to overestimate the extent of their adherence (Ley & Llewellyn, 1995). The accuracy of self-report as a measure of adherence has been assessed by comparison with other, more objective, methods or evaluated on the basis of correlation between selfreported adherence and clinical outcome measures. In the main these studies show that the accuracy of self-report varies according to the type of adherence behavior (e.g., medicine taking vs. lifestyle change) as well as the type of self-report measure used. Nevertheless Morisky, Green, and Levine (1986) have shown that a four-item scale of adherence to antihypertensive medication had acceptable internal consistency and was moderately predictive of blood pressure control at two and five year follow-ups. (ii) The determinants of nonadherence The search for causal factors to explain patients' adherence or nonadherence to their recommended treatment or advice has progressed through different phases since the 1960s. Much of the early work focused on the possible contribution of demographic or personality factors, as well as particular characteristics of

the treatment or the disease which might influence adherence levels. More recent studies have tended to concentrate on cognitive factors, particularly patients' beliefs and attitudes, since these are potentially modifiable. In an early systematic review of 185 studies (Sackett & Haynes, 1976), no clear relationship emerged between race, gender, educational experience, intelligence, marital status, occupational status, income, and ethnic or cultural background and adherence behaviors. Moreover, there is little evidence that adherence behaviors can be explained in terms of personality characteristics (Becker, 1979; Bosley, Fosbury, & Cochrane, 1995; McKim, Stones, & Kozma, 1990). Also, the idea that stable sociodemographic or dispositional characteristics are the sole determinants of adherence is discredited by evidence that an individual's levels of adherence may vary over time and between different aspects of the treatment regimen (Cleary et al., 1995; Hilbrands, Hoitsma, & Koene, 1995; Rudd et al., 1990). This limitation also applies to the search for disease and treatment characteristics as antecedents of adherence since there are wide variations in adherence between and within patients with the same disease and treatment (e.g., Cleary et al.; Lilleyman & Lennard, 1996). One very obvious explanation for nonadherence arises from the poor cognitive outcomes outlined above, particularly poor understanding and recall of information presented in the consultation. Many patients lack basic knowledge about their medication (Al Mahdy & Seymour, 1990; Cartwright, 1994; Eagleton, Walker, & Barber, 1993) but the relationship between this and their adherence is neither simple nor clear-cut. In a review of the adherence literature Haynes (1976) concluded that, although 12 studies had demonstrated a positive association between knowledge and adherence, there were more that had failed to demonstrate a link. Studies conducted since then generally indicate that associations between knowledge and adherence are at best small and inconsistent (Eagleton et al., 1993), and interventions which enhance knowledge do not necessarily improve adherence (George, Waters, & Nicholas, 1983; Haynes et al., 1978). There is increasing interest in the role of patient satisfaction as a mediator between information provision, recall, and adherence, as would be predicted by Ley's model which was outlined earlier (see Figure 5). In a national UK survey of patients' satisfaction with medicines information, over 70% of respondents wanted more information than they were given (Gibbs & George, 1990). Dissatisfaction with attributes of the practitioner or the amount of information

Health-care Professional±Patient Communication and explanation provided may act as a barrier to adherence by making the patient less motivated towards treatment (Hall et al., 1988). The emphasis of adherence research since the late 1980s has moved away from attempts to identify stable trait factors which characterize the nonadherent patient to achieving a greater understanding of how and why patients decide to take some treatments and not others (Horne, 1993). Much of this research is informed by psychological theories which conceptualize behavior as the product of cognitions which occur within a social framework and these are described more fully in Chapter 8.01. The application of social cognition models in research indicates that medication nonadherence may arise from a rational decision on the part of the patient and identifies some of the cognitions which are salient to these decisions. Although there is some variation in the specific type of beliefs which are associated with adherence across studies, the findings show that certain cognitive variables included in the Health Belief Model (HBM) (Janz & Becker, 1984) and Theory of Planned Behaviour (TPB) (Ajzen, 1988) appear to be prerequisites of adherence in certain situations. For example, beliefs that failure to take the treatment could result in adverse consequences and that one is personally susceptible to these effects tend to be associated with higher adherence (Cummings, Becker, Kirscht, & Levin, 1981; Kelly, Mamon, & Scott, 1987; Nelson, Stason, Neutra, Soloman, & McArdle, 1978). Perceived severity of anxiety has also been found to be related to adherence to recommended practice of relaxation training at home (Bennett & Millard, 1985). Additionally, adherence decisions may be influenced by a cost-benefit analysis in which the benefits of treatment are weighted against the perceived barriers (Brownlee-Duffeck et al., 1987; Cummings et al., 1981; Nelson et al., 1978). Other studies, based on the TPB, have shown that the perceived views of significant others such as family, friends, and doctors normative beliefs may also influence adherence (Cochrane & Gitlin, 1988; Reid & Christensen, 1988). Several studies have demonstrated the value of interventions based on the HBM in facilitating health-related behaviors, such as attending for medical check-ups (Haefner & Kirscht, 1970), or using emergency-care facilities in an acute asthma attack (Jones, Jones, & Katz, 1987). Another cognitive approach which has been used to explain nonadherence is the selfregulatory model outlined at the beginning of this chapter. This model also acknowledges the importance of symptom perception in influencing illness representations and adherence as a

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coping behavior. Confirmatory evidence for this is provided by findings from a study of patients with diabetes who used perceived symptoms to indicate their blood glucose levels and to guide self-treatment (Gonder-Frederick & Cox, 1991). Unfortunately patients' beliefs about their symptoms, and estimations of their own blood glucose levels, were often erroneous and resulted in poor diabetic control. Further evidence of the importance of illness representations was obtained by Meyer et al. (1985) who noted a clear relationship between illness representations and behavior in their study of patients with hypertension. Patients who believed that their hypertension was an acute condition were more likely to cease taking antihypertensive medication than those who believed it to be a chronic condition. This study also showed that patients' representations of their illness often conflicted with the medical view and provided an insight into the effects of mismatch between the patients' representations and those of their doctor. In a group of 50 patients who had continued in treatment, 80% agreed with the statement that ªpeople cannot tell when their blood pressure is up.º However, 92% believed that they could tell when their own blood pressure was raised by monitoring symptoms such as tiredness, headache, and stress. Patients who believed their anti hypertensive medication improved symptoms were more likely to take it. A striking example of this was provided by five out of 17 patients who believed that their medication affected symptoms. These patients took their antihypertensive medication only when they judged their blood pressure to be raised. The patients had understood and accepted the abstract medical view of hypertension as an asymptomatic condition but their concrete experience or symptoms caused them to hold contrasting beliefs and to behave according to these. Illness perceptions have been linked with a range of adherence-related behaviors other than the use of medicines. These include various selfmanagement behaviors, such as dietary control and blood glucose testing in diabetes, attending rehabilitation, and the adoption of various lifestyle changes following myocardial infarction. A study of noninsulin dependent diabetic patients, has shown that personal models of diabetes are related to dietary self-management and to exercise adherence but not to the more medical aspects of control, such as blood glucose testing and taking medication (Hampson, 1997). Similarly, in a prospective study of patients following first-time myocardial infarctions (MI), Petrie et al. (1996) have found that specific illness perceptions are predictive of different post-MI behaviors. They found that

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attendance at rehabilitation, which is prescribed for all patients, was predicted by the strength of their belief in the cure/control of their MI whereas return to work depended more on the extent to which the patient saw their MI as having less serious consequences In addition to studies of the role of illness beliefs, there is a small body of work which has examined people's beliefs about medicines and the ways in which these could influence adherence (Britten, 1994; Conrad, 1985; Donovan & Blake, 1992; Morgan & Watkins, 1988). The negative beliefs about medicines identified in these studies appear to be common across several illness and cultural groups and include worries about the potentially harmful effects of medicines and about long-term dependence on them. However, there are only a few studies which have assessed medication beliefs quantitatively and they have used different questionnaires or have investigated medication beliefs in the broader context of views about the practice of medicine (Echabe, Guillen, & Ozamiz, 1992; Marteau, 1990). Some studies have assessed peoples' ideas about medicines in general, whereas others have focused on specific medication prescribed for a particular illness. Research by Horne (1997) indicates that four ªcore-themesº or factors underlie commonly held beliefs about medicines. Factor analysis of a pool of belief statements revealed two broad factors describing peoples' beliefs about their prescribed medicines: their perceived necessity for maintaining health (specific-necessity) and concerns based on beliefs about the potential for dependence or harmful long-term effects and that medication taking is disruptive (specific concerns). Two factors were also found to describe peoples' beliefs about medicines in general. The first relates to the intrinsic properties of medicines and the extent to which they are harmful, addictive substances (generalharm) and the second factor comprises views about whether medicines are overused by doctors (general-overuse). Peoples' views about the specific medication regimen prescribed for them were found to be much more strongly related to adherence reports than are more general views about medicines as a whole. Moreover, an interplay was found between concerns and necessity beliefs which suggests that people engage in a risk-benefit analysis and consequently attempt to moderate the perceived potential for harm by taking less. Patients with stronger concerns based on beliefs about the potential for longterm effects and dependence reported lower adherence rates, whilst those with stronger beliefs in the necessity of their medication

reported greater adherence to medication regimen (Horne, 1997). 8.03.4.3.4 Consultation outcomes: an overview The cognitive, affective, and behavioral outcomes of the consultation are very closely linked and can influence each other. Patient satisfaction, understanding, and beliefs can play a major role in influencing adherence with treatment or advice, which is obviously important in situations where nonadherence results in adverse health consequences. Since there is evidence of high levels of nonadherence, this can clearly affect other outcomes including health and well-being. The latter have not often been studied as communication outcomes but there are a number of studies which demonstrate positive effects on patients' health and well-being arising from positive experiences in medical consultations (Stewart, 1995). These have focused on psychological states such as anxiety as well as changes in specific physical variables such as blood pressure and blood glucose control. Some of the most impressive findings here have been found in the patientintervention studies, which are described below. 8.03.4.4 Improving Health-care Communication In addition to increasing our understanding of health-care communication and its central role in health-care delivery, some research findings have also provided insights for developing interventions to improve the quality of communication. The majority of these have been aimed at improving the communication skills of health-care students or practitioners at various stages of training but a few have been targeted at patients, to enable them to get the most from a consultation. Both types of intervention approach will be outlined. Communication skills training is now regarded as a fundamental part of the curriculum for medical, nursing, and other health-care students but this varies considerably in terms of the amount and type of teaching and the stage at which it is taught. Typically, students are provided with an overview of the basic skills of ªactiveº listening which facilitate patient communication. At a basic level these include the importance of developing good rapport and the use of open-ended questions early in the consultation, appropriate eye-contact and other facilitatory responses to help the patient talk, together with the ability to summarize and arrive at a shared understanding of the patients' problem. These skills can be taught in a number of ways but the successful courses inevitably

Health-care Professional±Patient Communication involve active learning, using role-plays with simulated patients, as well as real patient interviews (see Kendrick, 1997; McManus, Vincent, Thom, & Kidd, 1993). Feedback is important to identify problem areas as well as indicators for improvement, and increasing use is made of videotape for this purpose. There is consistent evidence that this type of training can result in clear improvements in basic communication skills which are maintained for a number of years (Maguire, Fairburn, & Fletcher, 1986). In addition to these basic packages, it is also necessary for health-care students to learn how to communicate about sensitive or difficult areas of clinical practice, including dealing with distressed patients or relatives and giving ªbad news.º Research in this area, using taperecorded consultations, has shown that doctors tend to give detailed information rather than find out and respond to patients' concerns and informational needs. As Maguire (1997) notes, this avoidance of patients' worries can have negative effects in the short and longer term. An immediate consequence is that patients may remain preoccupied with their own concerns and fail to take in information or advice. They may also selectively attend to negative phrases or messages and be unresponsive or misconstrue more positive or neutral information. Maguire (1997) provides the example of a surgeon who informs a recently diagnosed cancer patient that radiotherapy will be given ªto mop up any residual cells,º and then adds ªI am sure that we will eradicate your cancer.º When questioned afterwards, the patient only recalled the phrase ªresidual cellsº and became very distressed since she thought that this meant that the cancer would spread through her body. There were are various reasons why doctors and other health-care professionals may be poor at ªbad newsº communication and these include lack of training, fears about the effects of exploring patients concerns, lack of support, and a desire to protect their own emotional wellbeing. Some of the training packages which have been developed have taken these factors into account and provide sufficient time for the learners to explore and get feedback on different strategies, using role-play situations. Many of the component skills are those which are part of any communication training package, such as those outlined earlier in this section. The key first step is to ensure that this communication takes place in an appropriate environment and needs to start with the patient, exploring what they have been told and what they think and feel about their condition. If will often be necessary to take time to provide the patient with the information which they want, letting patients

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proceed at their own pace and allowing information to be assimilated. The other key skills involve developing the ability to recognise distress and allow this to be expressed without feeling discomfort or providing unrealistic reassurance (Maguire, 1997). There is growing evidence that the way bad news is presented to patients can have major effects on the patient's perception of their condition and on subsequent coping and adjustment (Fallowfield, Hall, Maguire, & Baum, 1990). Effective training of health-care professionals in this area can have significant effects on the quality of health care for patients with serious or terminal conditions. In addition to improving the HCP's communication skills, there is also considerable scope for providing patients with more useful information, including tape-recordings of their consultations. Since the 1980s, there have been a number of interesting interventions aimed at patients. Generally, these have involved interventions for patients prior to a consultation in order to increase their level of participation, particularly to ensure that their own concerns are dealt with and that information provided by the doctor is clearly understood. A successful development of this approach can be seen in the work of Greenfield, Kaplan, and Ware (1985) who used a preconsultation intervention lasting 20 minutes for hospital outpatients who were helped to identify their main questions and encouraged to ask these in the consultation. Compared with control patients, these patients participated more actively in the consultation and this was also associated with better long-term health outcomes, including lowered blood pressure in hypertensives and better glycaemic control in diabetic patients. These interventions can be quite time-consuming and a number of researchers have explored the possible efficacy of simpler patient-based interventions, such as the use of preparatory leaflets (e.g., McCann & Weinman, 1996), but these have not shown such significant effects in changing the process or outcome of consultations. Finally, mention should be made of two specific patient-based approaches which have been very successful. The first by Ley and colleagues (see Ley, 1988) involved hospital patients and an additional short visit which allowed them to ask for any information to be clarified. Compared with control groups, these patients had a much higher level of satisfaction with communication, indicating that effective interventions need not be of complex or timeconsuming. Hogbin and Fallowfield (1989) describe another simple intervention which consisted of making a tape-recording of the ªbad newsº consultation and allowing patients

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to take away and keep the tape. Since this type of consultation is often very distressing, patients may often find it very difficult to take in all the information. Thus, it was found that patients welcomed the use of these tapes as something which they could go back to and which others could also listen to. The importance of providing patients with access to information in various forms, which can be discussed and shared with family and friends, is very pertinent in this area of health. In this respect it is interesting to note the development of patient support groups and information exchanges using the ªinternetº (Davison & Pennebaker, 1997). Providing patients with access to others with similar or related medical conditions may result in very important gains in communication. For example, patients may be able to locate and communicate with others who have very similar experiences and circumstances, which may not only have a supportive function but may also provide ways of sharing and coping with many of the problems which are experienced. 8.03.5 HEALTH CARE IN HOSPITALS This section of the chapter will focus on a range of psychological aspects of health care in hospital settings. It begins with a general consideration of the psychological consequences of admission to hospital and is followed by a brief outline of some of the psychological problems associated with the hospitalization of younger children. Then there is a selective overview of particular hospital treatments such as intensive care and haemodialysis which can produce specific emotional reactions due to the limitations and demands they impose on patients. Similarly, many medical procedures are found to be painful or distressing and a number of psychological interventions, which have been devised to help patients cope with these, are outlined in the final part of this section. 8.03.5.1 Psychological Effects of Hospitalization Hospital patients vary in many ways including their age, personality, and social circumstances, as well as in the severity of their health problems and the duration of their stay. Also, their experience in hospital will vary greatly and this inevitably means that there are difficulties in attempting a general discussion of the impact of hospital admission. Some specific issues concerning children are presented separately but the following account is intended to convey some of the more general factors which have

been identified. The psychological reactions which are described may reflect not only a response to hospitalization but also to the illness itself. 8.03.5.1.1 Physical and social environment One obvious feature of hospital life which involves a considerable change for the patient is the physical environment. Although a number of studies have demonstrated positive and negative effects of the built environment on psychological well-being and health (Spencer & Baum, 1997), there are relatively few studies which have directly investigated how the physical environment of the hospital affects the patient's condition. The hospital environment has been identified as one of a range of stressors which people experience in hospital (Koenig, George, Stangl, & Tweed, 1995). Even such factors as the nature of the view from the patient's bed have been found to affect recovery. For example, Ulrich (1984) found that patients with a window view of trees had a better postoperative recovery (i.e., fewer complications, less analgesia, better adaptation, shorter length of stay) than patients recovering from the same type of surgery but whose hospital window looked out on to a brick wall. The hospital environment is frequently seen to be drab, clinical, impersonal, and cold by patients. Whereas in the outside world the individual operates with a strong sense of personal space, which is the amount of space necessary for optimal social behavior, in hospital this space is being constantly invaded as part of the daily routine. The daily routine itself is one which is very likely to be very different from life at home and therefore may require considerable adjustment. It is not therefore surprising to find that studies, which have compared home-treated and hospitalized patients with the same condition, have shown less psychosocial distress in those remaining at home (e.g., Oldenburg, Macdonald, & Perkins, 1988). Enforced life-style changes have also been identified as a key hospital-based stressor in the Hospital Stress Index (Koenig et al., 1995). Admission to hospital removes individuals from a familiar, well-ordered world and places them in an environment which is different in every respect. In hospital they are likely to be totally dependent on others for most basic functions such as washing and feeding. Usually they will be restricted to one place, surrounded by totally new people, whose skills are now of vital importance to them, and it is significant that developing good relations with hospital staff is not only an important factor in adaptation to

Health Care in Hospitals hospital life but can also be a potential source of stress for patients (Koenig et al.). Other hospital stressors which have been identified by an older measure, the Hospital Stress Rating Scale (Volicer & Bohannon, 1975), include worries about aspects of communication with staff as well as concerns about investigations and treatment, which are discussed in more detail below. On the positive side, studies by Kulik and Mahler (1987) and Kulik, Mahler, and Moore (1996) have demonstrated the importance of social contact in the recovery of patients following surgery. These studies have focused on the effects of having a preoperative roommate on the anxiety and recovery of surgical patients. In the early study they compared the effects of sharing a room either with a patient who was also about to undergo cardiac surgery or with one who had already had the same operation. The results showed clear beneficial effects of sharing a room with someone who was recovering from surgery. The patients who had postsurgical room-mates were less anxious prior to surgery, engaged in more postsurgical physical activity, and were discharged sooner (Kulik & Mahler, 1987). In a more recent variation on this study, two further variables were investigated, namely having a room-mate or being on ones own and having a room-mate who was about to undergo or had gone through same type of operation. In addition to replicating the earlier findings with respect to the advantage of sharing with a postsurgical patient, it was also found that it was advantageous to share with a postsurgical patient who had undergone the same type of surgery and that those who were in rooms on their own had the slowest recovery (Kulik et al., 1996). 8.03.5.1.2 Communication in hospital In addition to the general stresses associated with hospital admission, some of the fear and anxiety which is found in many hospital patients may stem from the uncertainty and lack of information which they may have about the nature of their illness and its treatment and prognosis. There are a number of studies of hospital patients which show clearly that they are greatly dissatisfied with the communications aspect of hospital life (e.g., Ley, 1972). These studies indicate that about 40±50 % of hospital patients are critical of the communication aspects of their stay. Many of the communication problems which were discussed in the earlier part of this chapter (see Section 8.03.3) are also seen in hospital settings. There is also evidence that hospital patients are often diffident in this respect and are

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unwilling to ask for information. The diffidence which seems to underlie patients' reluctance to complain or ask for information has been the subject of psychological study and it would appear that patients enter hospital with ideas about how they should behave. Lorber (1975) has identified three categories of patient which she labeled ªgood patientsº (about 50% of her sample), ªaverage patientsº (about 25%), and ªbad patientsº (about 25%) on the basis of the ratings of their medical staff. Patients who were labeled ªgoodº were ones who had straightforward medical problems, were uncomplaining and docile, who took up minimal staff time, and showed uncomplicated recovery. The ªaverageº group were rather similar except they had some problems, but these were manageable. The ªbadº group consisted either of patients with serious conditions or those without serious conditions but who complained and put extra demands on the staff as a result. Interestingly, these patterns of behavior could be detected from interviews with patients about their views of the patient's role at the time of their admission. Thus, it would appear that many patients enter hospital with the expectation of being in a relatively passive role and the pattern of life in hospital actually reinforces this, sometimes to the point of helplessness. Taylor (1979) describes how helplessness can develop when questions go unanswered and desires for attention are not met. As a result ªgoodº patient behavior may actually be detrimental to recovery since it prevents patients from taking an active role in their health care. Moreover ªbadº patient behavior can be seen as a reaction against helplessness and an attempt to gain a degree of control, and hence could be thought of as a healthier response. Fortunately, these problems do not appear to be insurmountable. For example, Ley, Bradshaw, Kincey, and Atherton (1976) conducted a study of hospital patients on three wards of a general hospital. In one ward there was an extra visit made to patients every 10 days, in which attempts were made to ensure that they had understood what they had been told. These visits were relatively brief and only concerned with clarifying existing information rather than raising new issues. The second ward essentially comprised a control group, who received an extra visit to discuss their welfare, food, and so on and not to clarify information. Patients in the third ward in the study received no extra visits. The results showed that 80% of patients who had received the informational visit were satisfied with the communication received, which was approximately twice the level of satisfaction with communication found in the other two groups.

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In addition to these general psychological impacts of hospitalization, there may be specific problems or demands which occur either as the result of the particular health problems or the type of treatment which the patient has to undergo. An example of the way in which the patient's health problem may influence their experience of hospital care can be seen in some of the studies of patients with AIDS who may experience negative attitudes from staff or other patients. These negative attitudes are closely linked with the blaming attributions which staff or patients may have for the cause of AIDS. In a survey of 270 AIDS patients being treated in either special care units or integrated in more general hospital settings, specific stresses were reported by those in the integrated units (Van Servellen, Lewis, & Leake, 1990). Whereas both groups were bothered by the same range of general stressors identified above, particularly loss of independence, separation from loved ones, and problems with medicines, those who were in integrated settings more frequently experienced and were upset by factors associated with ambiguity about their care and their medical condition. Moreover, these patients also reported higher levels of stress associated with feelings of abandonment and impersonal or discriminatory treatment. A number of studies of HCPs have revealed evidence that their attributions of patient blame for their condition can have direct influences on their attitudes to the care of the patient as well as their approach to and involvement with them. Broadly, it has been shown that where staff see patients as instrumental in having brought about their own condition through their own behavior or neglect, then they may be less committed, motivated, and sympathetic towards them (Marteau & Riordan, 1992).

8.03.5.2 Children in Hospital In many countries approaching 50% of children will have spent a period of time in hospital and for those with chronic conditions many have to spend longer periods or visit repeatedly over a number of years. There is evidence that children's reactions to illness and hospital treatment can be quite distinct and that the psychological and social consequences of separation from home can produce quite specific problems. Older studies of the emotional reactions of children to hospital (e.g., Illingworth & Holt, 1955) showed that admission to hospital was often very distressing for them, particularly the younger ones, but the situation has improved over the years. Since that time various recommendations have been

put forward and, to some extent, implemented to allow greater access by parents to their hospitalized children. These have included increased flexibility in visiting arrangements as well as a greater provision of overnight accommodation for parents. Adaptation to hospital life will depend greatly on the age and personality of the child as well as on the family and their reaction to the child, to disease, and to hospitals. When they occur, emotional problems in hospital are much more prevalent in younger children, particularly up to and around the age of four. Older children are more amenable to explanation and are usually less distressed by separation from home and by being surrounded by strangers. A more extensive discussion of children's responses to health issues and health care can be found in Chapter 8.27. There are a number of specific psychological problems associated with the hospitalization of children. The problems would appear to stem from three sources: (i) The social separations and disruptions incurred by admission to hospital; (ii) The emotional response to the clinical problem; and (iii) The lack of preparation for hospital life and the investigations and treatments to be carried out. The more long-term effects of hospitalization on children suggest that some of the traumatic effects reported in early studies may have been overstated. Follow-up studies of hospitalized children indicate that serious problems are only found in children who had psychological problems prior to admission or who come from difficult families (La Greca & Stone, 1985). Studies of preparation of children for hospitalization also show that different types of preparation appear to be suitable for children of different ages and with different amounts of prior experience (see Schmidt, 1997 for an overview).

8.03.5.3 Psychological Aspects of Specific Hospital Treatments In the same way that physical illness imposes physical and social limitations on the individual which can give rise to psychological reactions, some treatments are also very restricting and have been found to cause emotional and behavioral changes. In particular, a number of studies have been made of patients in specific treatment settings such as intensive care units (ICUs), coronary care units (CCUs), and haemodialysis. Although these treatment environments can give rise to specific stressors,

Health Care in Hospitals they also offer challenging opportunities for psychological interventions. Experimental work with healthy volunteers has shown that long periods of sensory deprivation or sensory overload will often give rise to a state characterized by increased wakefulness, disorientation, and visual hallucinations (Goldberger, 1982) These states have also been found in some patients who are being treated in ICUs since they may be exposed to long periods of sensory deprivation produced by monotony and immobilization, sometimes interrupted by periods of overstimulation, as well as sleep deprivation. It is claimed that the observed ªICU psychosisº is the result of all these factors on an individual who is already fearful of his or her life because of a serious physical illness. Fortunately, these dramatic psychological responses gradually disappear when normal amounts of sensory stimuli and sleep are restored by returning the patient to a normal hospital environment. More important, these changes can be avoided if the ICU contains a more varied sensory environment and with good contact with visitors and staff. For example, Keep, James, and Inman (1980) have compared patients in ICUs with and without windows, and found that those in the windowless units were less well oriented during their stay and had a less accurate recall of their length of stay afterwards. In addition to these general problems associated with the ICU, other studies have assessed the degree of stress experienced by patients, staff, and visitors. For example, in a study of a surgical ICU, patients rated their level of stress from a wide range of events which occurred (Pennock, Crawshaw, Maher, Prue, & Kaplan, 1994). The ratings were made shortly after their transfer from the ICU and indicated relatively minimal distress associated with many events with exception of being intubated and not being able to communicate. For patients' relatives there is evidence that they find the time spent by the patient on life support in the ICU particularly worrying. During this time they experience considerable fear and uncertainty but this can be resolved by seeking information and the use of other resources (Jamerson et al., 1996). For staff working in this climate, it is assumed that greater levels of workrelated stress will be experienced, compared with other hospital personnel. However, the evidence on this is ambiguous and some studies have shown that ICU staff show a more positive attitude to their work and work environment than equivalent non-ICU staff (Boumans & Landerweerd, 1994). In the context of coronary care, a number of studies have identified possible areas for psychological intervention in facilitating the

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recovery of patients in CCUs. Using a selfregulatory framework, one study has shown that patients with myocardial infarction have clear beliefs about the cause, timeline, consequences, and controllability of their heart condition during the acute phase of their hospital stay in the CCU. Moreover, these beliefs appear to be associated with subsequent attendance at cardiac rehabilitation and with later adaptive changes, such as return to work and social functioning (Petrie et al., 1996). In addition to these cognitive processes, there is also good evidence that patients' mood states at the early stages of recovery are related to longerterm physical and psychological well-being (Frasure-Smith, Lesperance, & Talajie, 1995) and there is now increased awareness of the ways in which appropriate care during the hospitalization phase of treatment can promote adaptive coping and recovery (see Bennett, 1994). In contrast to the acute psychological restrictions and demands of intensive or coronary care, some patients are subject to much more chronic restrictions as part of their treatment. Many patients with renal failure are required to spend a considerable amount of time on renal dialysis machines, either in hospital or at home. These patients have a uniquely dependent relationship not only on their dialysis machine but also with the staff involved in their treatment. Dialysis can have major effects on an individual's psychological and social functioning, particularly giving rise to vocational impairment, reduced sexual activity, and mood changes (Oldenburg et al., 1988). In addition to the physical limitations and demands of dialysis, the patients are also faced with the need to adhere to strict recommendations regarding diet and fluid consumption, as well as complex medication regimens. Nonadherence can be a key issue in renal failure and the range of adherence-related factors outlined in an earlier section are very pertinent for patients on dialysis. One finding which emerges from studies of patients on renal dialysis is that psychological dysfunction at an early stage is a predictor of longer-term adjustment. This means that it is not only vital that good psychological care is available during hospital treatment but also that ªat riskº individuals can and should be identified at an early stage in order to anticipate later difficulties. It is noteworthy that comparative studies of patients on hospital or homebased dialysis show that the home-treated individuals show much less social dysfunction (Oldenburg et al., 1988). Part of this may well reflect the patient selection criteria for hospital and home dialysis, with more ªproblematicº

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patients tending to be treated in the hospital setting. However, part of this may also reflect the additional negative effects of hospitalization, outlined earlier, superimposed on the specific limitations and demands of dialysis. The most commonly reported psychological difficulties found in patients on renal dialysis are depression and anxiety but the extent of this is unclear. There is a range in the reported prevalence of depression from 10±100% (Levy, 1994) and this variation is partly due to the different criteria and measures used (see Kaplan De-Nour, 1994). Another reason stems from the similarities between the physical effects of renal failure, such as fatigue, apathy, and sleep difficulties, and the symptoms of depression. Despite these methodological problems, there do appear to be a number of aspects of dialysis which can give rise to psychological distress. For example, Devins, Binck, Hollomby, Barre, and Guttman (1981) have identified the constant threat of death, dependence on the dialysis machine, medical staff, and the stringent dietary and liquid restrictions as key factors in the widespread feelings of helplessness and lack of control. Patients' perceptions of control over their treatment have been found to interact with treatment experiences and illness severity in determining mood outcomes (Christensen, Turner, Smith, Holman, & Gregory, 1991). A belief that one's health is subject to personal control has been found to be associated with lower levels of depression in people who had only been treated by dialysis whereas, for those who had returned to dialysis following a failed kidney transplant, higher control beliefs over health were associated with greater depression. In line with self-regulatory theory, patients representations of their kidney disease, including their control perceptions, would be expected to influence coping and other outcomes, including treatment adherence (Horne & Weinman, 1994). Studies by Christensen, Benotsch, Wiebe, and Lawton (1995) have demonstrated that problem-focused types of coping were associated with better adherence to fluid intake restrictions when these coping strategies were used in response to stressors arising from a relatively controllable aspect of dialysis. For those stressors which patients perceived as less controllable, emotion-focused coping strategies were associated with better levels of adherence.

8.03.5.4 Stressful Medical Procedures in Hospital In addition to the generally stressful effects of hospital admission, there is a range of medical procedures which can give rise to considerable

discomfort and anxiety. These include specific investigative procedures such as barium X-rays (Allan & Armstrong, 1984), endoscopy (Johnson, Morrissey, & Leventhal, 1973), and cardiac catheterization (Kendall et al., 1979) which may not only be uncomfortable and sometimes physically distressing but which also carry the threat of uncovering a serious medical condition (Weinman & Johnston, 1988). The other obvious ªeventº in hospital which has been found to produce significant psychological effects is surgery. The psychological impact of surgery will partly depend on the procedure, the condition, and the likely outcome as well as on such psychological factors as the patient's expectations and coping style and the quality of communication. The way in which a patient reacts to a medical procedure can also have a significant influence on the outcome, particularly in recovery from surgery. Patients who show the highest presurgical levels of stress response will also tend to experience adverse psychological reactions postsurgically and will be more likely to show poorer physical recovery (Johnston, 1986). These patients have been found to request more analgesia, show more postsurgical complications, and tend to recover more slowly with delays in discharge, as compared with less anxious or stressed patients.

8.03.5.5 Psychological Interventions for Stressful Medical Procedures Since studies have shown a relation between patients' psychological state and their recovery, it has been recognized that there could be considerable gains from providing a psychological intervention designed to reduce or minimize the psychological impact of a medical procedure. There is a range of interventions which have been used to prepare patients for surgery or other stressful procedures in the hospital setting. In broad terms, they can help by providing the patient with information to reduce the uncertainty of the event, or with specific behavioral or cognitive skills to help with some of the discomfort or pain Mathews and Ridgeway (1984) have provided a clear overview of the various preparations and these are summarised in Table 2. Procedural information is probably the most widely used approach and consists of providing information about the various procedures which will take place before and after the operation. In short, it involves a description of what will be done to the patient at different stages pre- and postoperatively. Sometimes this information is also accompanied by an explanation of the

Health Care in Hospitals purpose of each of the procedures which are described. Thus, it provides the patient with a map of the events which will occur and, in doing so, can reduce the uncertainty of the whole process. Sensory information describes what patients are likely to feel, particularly during the immediate postoperative pain period. The important point here is to provide matter of fact or benign interpretations of the sensations so that the patient can recognize them as part of the expected postoperative process. Thus, the patient who can recognize postoperative pain as an expected sensation caused by the incision and reflecting the healing process will be far less likely to be distressed than someone who has not been prepared for the pain and who may think of it as problem or a complication of the surgery. Contrada, Leventhal, and Anderson (1994) have outlined an interpretation of the benefits of sensory and procedural information from the perspective of the self-regulatory model. They view the sensory preparation as providing a script which describes internal sensations and the procedural preparation as a script providing the objective external events involved in surgery. They maintain that it is the availability of the script which reduces uncertainty and worry for the patient. More specifically, Leventhal (1985) has argued that sensory information should be particularly helpful since it focuses on potentially threatening sensations (e.g., pain, discomfort) with the aim of ensuring that these are processed as nonthreatening or less threatening. However, evidence on the efficacy of both types of preparatory information indicates that procedural information is at least, if not more, effective in producing favorable outcomes (Johnston & Vogele, 1993, see below). Behavioral instructions are also commonly provided and describe different behaviors which will help before, during, and after surgery. These include instructions about ways to cough and move in bed which will reduce the likelihood of pain associated with these movements. Other behavioral instructions such as deep breathing and ambulation exercises may also reduce the incidence of pain or complications as well as facilitating recovery. Modeling is based on the use of filmed models who can be seen undergoing the same procedure as the patient. Following Bandura's social learning theory (Bandura, 1986), modeling or the observation of others completing a difficult or stressful task can serve to increase the individual's sense of self-efficacy for managing the same task. Two main types of model have been investigated: (i) mastery models who are

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shown dealing with the task with ease and ability, and (ii) coping models who are shown as having some anticipated concerns but who nevertheless are able to overcome these and cope with the procedure. The coping type of model has been found to be a more effective preparation for children undergoing surgery. For example, in a study of children about to be innoculated, Vernon (1974) has compared a group of children who saw a preparatory film which was realistic (the child in the film is seen to experience short-lived, moderate pain and emotion) with a group who saw an unrealistic film (no pain or emotional expression) and a group who saw no preparatory film. The realistically prepared group were found to experience least pain when receiving their injections. These methods have been more widely used with children than with adults, particularly since it may be difficult to provide children with sensory or procedural information or behavioral instructions in a meaningful way. Relaxation-based interventions can involve a number of different techniques. These may involve the use of deep breathing, progressive muscle relaxation, or, less frequently, hypnosis. Relaxation can be used both to provide a general preparation involving anxiety-reduction and to give a specific skill which can be used postoperatively for dealing with pain or discomfort. Cognitive coping procedures focus on patients' concerns and fears about the surgery and provide ways of dealing with them in one of two ways. First, they may make use of coping strategies which the patient has used successfully in the past for dealing with stressors, enabling the patient to rehearse and apply these in the surgical context (Langer, James, & Wolfer, 1975). The second cognitive approach involves dealing with negative thoughts by distracting attention from them and by focusing on positive aspects of the surgery and repeating positive self-statements (Ridgeway & Mathews, 1982). The efficacy of these interventions has been evaluated by examining their effects on a range of postsurgical outcomes, including anxiety, pain, and use of pain medication, length of stay in hospital, and various indicators of recovery. All the interventions have been found to be successful in improving at least one aspect of outcome and the majority have a positive impact on many of the outcomes. The different interventions have been examined systematically in a meta-analysis by Johnston and Vogele (1993) and their findings will be outlined briefly. The largest recovery effects were obtained for pain, negative affect, and physiological indices

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Health Care Table 2 Psychological preparations for stressful medical procedures. Type of preparation Procedural information Sensory information Behavioral instructions Modeling Relaxation Cognitive coping

Example ªAfter the operation, you will be taken to the recovery room, where specialist staff will care for youº ªIt is normal to feel a sharp, burning sensation along the line of the incisionº ªYou should try to cough four times each morning and afternoon/evening to keep your chest clearº ªThis film shows someone like you coping with the procedures that you will be experiencingº ªTry to breathe deeply and concentrate on relaxing the muscles of your body whenever you feel tenseº ªYou say that you are worried about the anaesthesia. Try to think of ways in which you could make those thoughts more positiveº

Source: Mathews & Ridgeway (1984).

of recovery but there was considerable variation in the magnitude of these effects. Smaller but more consistent advantages of psychological preparation were found on pain medication and length of hospital stay. The interventions which had the most widespead overall effects on all the outcomes were found to be procedural information provision and behavioral instructions. Relaxation was also found to have beneficial effects on the various outcomes. Whereas Mathews and Ridgeway (1984) had indicated that cognitive coping interventions were most likely to have the greatest efficacy, the metaanalysis results show that their effects appear to be restricted to specific outcomes. Thus, cognitive interventions have been shown to have positive effects on negative affect, pain and use of pain medication, and clinical recovery but do not appear to result in shorter lengths of stay or in improved physiological indices or behavioral recovery. Surprisingly, in view of the importance attached to patient evaluations of health care, only a few studies have examined the effects of these interventions on patient satisfaction but these show quite positive results, indicating that patients view them as acceptable and helpful. In summary, there is considerable evidence to indicate that different types of psychological preparation can not only reduce the anxiety, stress, and pain involved in many medical procedures, but also that there are considerable related benefits (e.g., less analgesia, better recovery, faster discharge, etc.). Although the above outline of approaches provided separate descriptions of each, they can easily be used in conjunction and often are. What is encouraging from the research and reviews of psychological preparation for surgery is that they show that it is possible to

intervene effectively using relatively uncomplicated procedures. Moreover, there is now sufficient information about their efficacy to be confident in recommending that they should be included as routine components of standard medical and nursing care for all patients undergoing surgery. 8.03.6 CONCLUSION The outline of psychological preparations for surgery provides a very positive endpoint for this chapter. The development and success of these procedures not only constitute very concrete evidence of the importance and contribution of psychological factors in health care but also serves to link together some of the other main areas covered in this chapter. For example, the preparations can have important effects on the way in which postsurgical symptoms are interpreted and responded to by patients. Indeed, the efficacy of the interventions provides additional evidence of the role of self-regulatory processes and expectations in symptom perception since the provision of sensory information can provide the patient with a benign interpretation of predictable postsurgical symptoms. Moreover, it is clear that whatever specific mode of intervention is used, each of them involves aspects of communication between the HCP and the patient. At the beginning of this chapter a brief mention was made of the variety of systems which have evolved for the delivery of health care in different countries. The psychological processes and topics covered here are of equal relevance across all these systems. It is notable that Johnston and Vogele (1993) end their metaanalysis with a similar observation since they find that psychological preparations for surgery

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approaches with suggestions for future research. Medical Care, 21, 279±293. Watson, D., & Clark, L. A. (1984). Negative affectivity: The disposition to experience aversive emotional states. Psychological Bulletin, 96, 465±490. Watson, D., & Pennebaker, J. W. (1989). Health complaints, stress and distress: Exploring the central role of negative affectivity. Psychological Review, 96, 234±254. Webb, S. L. M., & Lloyd, M. (1994). Prescribing and referral in general practice: A study of patients expectations and doctors actions. British Journal of General Practice, 44, 165±169. Weinman, J., & Johnston, M. (1988). Stressful medical procedures: An analysis of the effects of psychological interventions and of the stressfulness of the procedure. In S. Maes, P. Defares, I. G. Sarason, & C. D. Speilberger (Eds.), Topies in health psychology (pp. 205±217). Chichester, UK: Wiley. Weinman, J., & Petrie, K. (1997). Illness perceptions: A new paradigm for psychosomatics? Journal of Psychosomatic Research, 42, 113±116.

Williams, S., Weinman, J., Dale, J., & Newman, S. (1995). Patient expectations: What do primary-care patients want from the GP and how far does meeting patient expectations affect patient satisfaction? Family Practice, 12, 193±201. Williams, S., & Calnan, M. (1991). Key determinants of consumer satisfaction with general practice. Family Practice, 8, 237±242. Wolf, M. H., Putnam, S. M., James, S. A., & Stiles W. B. (1978). The Medical Interview Satisfaction Scale: Development of a scale to measure patients perceptions of physicians behaviour. Journal of Behavioural Medicine, 1, 391±401. Woller, W., Kruse, J., Winter, P., Mans, E. J., & Alberti, L. (1993). Cortisone image and emotional support by key figures in patients with bronchial asthma: An empirical study. Psychotherapy and Psychosomatics, 59(3±4), 190±196. Yeung, M., O'Connor, S. A., Parry, D. T., & Cochrane, G. M. (1994). Compliance with prescribed drug therapy in asthma. Respiratory Medicine, 88, 31±35.

Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.04 Assessment and Measurement Issues MARIE JOHNSTON and DEREK W. JOHNSTON University of St. Andrews, UK 8.04.1 INTRODUCTION

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8.04.1.1 Theoretical Frameworks and Questions Investigated 8.04.1.2 Measurement Approaches 8.04.1.2.1 Interviews 8.04.1.2.2 Questionnaires 8.04.1.2.3 Observation of behavior 8.04.1.2.4 Psychophysiological measurement 8.04.1.2.5 Clinical and pathophysiological indices 8.04.1.2.6 Health-care records 8.04.1.3 Design of Investigations 8.04.2 MEASURES USED WITH HEALTHY PEOPLE

114 115 115 116 117 117 119 119 119 120

8.04.2.1 Measuring Health 8.04.2.2 Health-related Behavior 8.04.2.3 Health Cognitions 8.04.2.4 Predicting Disease 8.04.2.4.1 Hypothesized link between behavior and disease 8.04.2.4.2 Stability of behavior 8.04.2.4.3 Independence of initial health status and predictor behavior 8.04.2.4.4 Independence of predictor behavior and disease endpoint 8.04.2.4.5 Costs and practicality of measures 8.04.3 MEASURES USED WITH ILL PEOPLE

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8.04.3.1 Measuring Illness 8.04.3.1.1 Symptoms and pain 8.04.3.1.2 Behavioral consequences of disease 8.04.3.1.3 Emotional consequences of disease 8.04.3.1.4 Quality of life 8.04.3.2 Illness Cognitions 8.04.3.3 Coping with Illness 8.04.4 MEASURES USED IN HEALTH-CARE CONTEXTS

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8.04.4.1 Measuring the Process of Health Care 8.04.4.1.1 Communications between patients and providers 8.04.4.1.2 Uptake and adherence 8.04.4.1.3 Behavior of health professionals 8.04.4.1.4 Psychological and behavioral interventions 8.04.4.2 Health Care Cognitions 8.04.4.2.1 Patients' health care cognitions 8.04.4.2.2 Providers' health care cognitions 8.04.4.3 Health Care Outcomes

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8.04.5 MEASURES USED IN ALL CONTEXTS

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8.04.5.1 Stress, Life Events, and Emotional States 8.04.5.1.1 Social deprivation

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8.04.5.2 Resources 8.04.5.2.1 Social support 8.04.5.2.2 Individual differences

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8.04.6 FUTURE DIRECTIONS

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8.04.7 REFERENCES

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8.04.1 INTRODUCTION Most measurement issues in health psychology are similar to those in all other areas of psychology and are characterized by the problems of placing a metric on behavior and on mental states. Health psychology examines psychological and behavioral processes in health, illness, and health care and its measures are distinguished by the nature of the theoretical frameworks and questions addressed, by the diversity of measurement methods used, and by the context of the applications. This introductory section deals with general measurement issues in health psychology. In the following sections, some of the measures used in the common areas of investigation are presented. We start with the assessment of healthy individuals, followed by measures used with people who are ill, then examine the measures adopted with both providers and users to investigate the process of health care and finally discuss measures that are used in all contexts. 8.04.1.1 Theoretical Frameworks and Questions Investigated Health psychology measurement is undertaken in order to understand behavioral and psychological processes in health, illness, and health care. The purpose may be research or application, especially in the fields of public health or clinical medicine. Measures are used to address three main theoretically, based questions concerning: (i) the assessment of psychological and behavioral indices of the status or amount of health, illness, or health care; (ii) the assessment or evaluation of the psychological and behavioral consequences of health, illness, or health care; (iii) the assessment of psychological and behavioral factors as predictors or explanations of health, illness, or health care. In each case, the measurement of health, illness, and health care is essential. Just as health is measured by psychological and behavioral processes, much of the assessment of illness and recovery from illness lies within this domain. Clinical signs and pathophysiological processes may be available in the assessment of patients with some conditions

(such as respiratory function in chronic bronchitis, or immune function in AIDS). Frequently, however, the clinician assesses disease processes by ascertaining how the patients feel and what they are doing (as in rheumatoid arthritis or multiple sclerosis)Ðif patients are recovering well, they describe themselves as feeling better and doing more for themselves. Indeed, Kaplan (1990) has argued that these behavioral processes are the important outcome of illness and health care. Measurement of illness has therefore included assessment of the psychological and behavioral consequences of the disease processes. Health care is largely a behavioral and interpersonal process. Indices of health care assess the use of services by patients, such as frequency of attendance at a clinic, as well as the performance of those involved in health care delivery (e.g., hand hygiene by surgical staff, provision of information by primary care physicians). These behavioral processes are likely to be a major influence on the effectiveness of health care as they determine the viability of delivery of biomedical treatments and advice. The behavior of patients in adhering to medical recommendations has long been recognized and methods of assessing adherence have been debated and developed, but the role of health professionals in determining patient outcomes has been less adequately assessed (Marteau & Johnston, 1991). An important development in all industrialized countries has been the drive to develop evidence-based health care. Expansion of the need for medical care has resulted in financial pressures and the inevitable selectivity in the provision of care. It is clearly desirable to select those services which are both effective in achieving good health outcomes and efficient in their delivery, but this requires both evidence concerning which procedures or services are effective and efficient, and the successful implementation of these services. The assessment of effectiveness requires the measurement of health or health care outcomes, that is, scaling of the consequences of disease or health care. As indicated above, such measurement will frequently lie in a psychological or behavioral domain. Further, investigation of the implementation of interventions reveals that even those proven to be successful are not fully

Introduction implemented; for example, appropriate thrombolysis for hospital patients has been shown to have the potential to reduce mortality, but there is evidence that it is not used appropriately in a large proportion of hospitals (Anderson et al., 1991). The assessment of health outcomes and the implementation of successful health care are key areas of health services research and are important areas of application for health psychology measures. 8.04.1.2 Measurement Approaches As a result of the types of application, a wide range of measures is necessary. Health psychology investigations may include any of the following types of assessment to achieve measurement: (i) interview (e.g., demographic information, self-report of behavior, beliefs, or feelings); (ii) questionnaire, (e.g., standardized measures of individual differences such as optimism or coping); (iii) observation of behavior (e.g., performance of self-care); (iv) psychophysiology (e.g., cardiovascular reactivity to stressors); (v) clinical indices (e.g., pulse rate, temperature, death); (vi) pathophysiological indices (e.g., brain scan, blood cell counts); (vii) information from health care records, (e.g., attendance at clinics, prescribed medication). 8.04.1.2.1 Interviews Interviews or interviews incorporating questionnaires are the most common method of collecting data from people who are undergoing health care or who are ill. Interviews can help to standardize the presentation of the measurement materials in a way that could not be achieved in routine clinical assessments. They can also motivate and facilitate responses to long questionnaires, while at the same time being sensitive to fatigue, especially in people who are ill. Clearly, interview techniques can also be a source of error, if interviewers vary or if an interviewer's behavior is variable. Interviews result in very diverse kinds of data. They may consist wholly or partially of closed precoded questions or they may contain open questions which require later coding. Some interviews may reproduce the format of a standardized interview, whereas others use newly designed questions. The most widely known example of a completely standardized interview in health psychology is the structured

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interview for the assessment of type A behavior (Friedman & Rosenman, 1964), where both the content and style of delivery of the questions is standardized as is the method of coding responses; both interviewers and coders require training and need to meet an acceptable standard of agreement with benchmark ratings. These ratings depend both on the content and style of response. Open questions on interviews and questionnaires require subsequent work by the investigator in order to interpret the data and provide a basis for measurement. Some qualitative methods are used to explore new domains of investigation, by examining the predominant themes emerging from responses using a variety of techniques and theoretical frameworks (Michie, McDonald, & Marteau, 1996). These analyses can provide useful insights and may form a basis for the development of hypotheses or measures that can be satisfactorily validated. However, other methods are required if even the most basic level of measurement is to be achieved and this will be essential if evidence of the replicability of the methods and findings are desired. The minimal level of measurement enables the investigator to classify a response as belonging to a specified category or not. For example, in interviews with patients with motor neurone disease, a question about who was with them when they were told was reliably categorized as ªtold aloneº or ªwith someone presentº (Johnston, Earel, Mitchell, Morrison, & Wright, 1996). Without at least nominal or categorical measurement, it is impossible to establish the reliability, validity, frequency, associations, consequences, or causal status of the phenomena investigated. Normally, investigators develop a coding frame from preliminary work with a subset of the data or from a preexisting theoretically or empirically-based framework. For example, the CAVE (Peterson, Buchanan, & Seligman, 1995) codes spontaneous utterances in terms of the attributions presented and classifies the material in terms of the respondent's explanatory style, whereas LIWC (Pennebaker, Mayne, & Francis, 1997) is a computer program that searches for key words reflecting the individual's attempts to find meaning. A group of four papers using different coding frames to analyze the same interview material (Folkman, 1997; Nolen-Hoeksema, McBride, & Larson, 1997; Pennebaker et al., 1997; Stein, Folkman, Trabasso, & Richards 1997) illustrates the diversity of measurement approaches that can be applied to spontaneous responses to open questions. This kind of coding frame guides the allocation of a code, usually a numerical code, to the responses. It is then possible to examine

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the reliability of the coding by comparing coders or the same coder on different occasions or on different parts of the data. Reliable data can then be investigated using appropriate statistical methods to examine the research questions (see Volume 3 of this series). Where interview responses take a precoded closed format, then coding responses is not an issue. Scoring and measurement then depend on the same psychometric issues as apply to questionnaires. 8.04.1.2.2 Questionnaires Questionnaires are widely used in health psychology to assess beliefs, attitudes, knowledge, mood, indices of individual differences, experience of health care, health-related behaviors, adherence to medical advice, etc. We have described or evaluated over 50 such measures in a user's portfolio of health psychology measures which provides a fuller account of the measures and their use (Johnston, Wright, & Weinman, 1995). Such easily accessible measures can appear to the novice health psychology investigator as an attractive display of off-the-shelf techniques that can solve many of the problems in research design. However, there are a number of pitfalls. First, the measures vary in the quality of their psychometric properties. There are measures that have insufficient items to achieve satisfactory reliability and, for some, reliability may not even have been assessed. Some form of internal consistency should be available and, where appropriate, evidence of test±retest and interrater reliability should be provided. Measures should also have demonstrated validity. Validity is normally conceptualized within a theoretical framework that defines the content and the functioning of the construct being measured. A second pitfall for the naive researcher is the use of measures outside the theoretical framework of their development and validity. It can be perplexing when a series of quite different measures all seem to be relevant to the same domain, but this can often be explained in terms of the underlying theoretical framework. For example, many measures assess control cognitions; however, some of these are directly associated with Rotter's (1966) Social Learning Theory, others are related to Bandura's (1977, 1997) Social Cognitive Model, and others arise from Attribution Theory (Weiner, 1986). The investigator should ensure that the measures chosen are compatible with the theory guiding the research. A third pitfall lies in the use of measures with populations they were not designed for. For example, it may be tempting to use a test validated with adults in work with

children or to use assessments shown to be valid with ill people in a study of a healthy community-based sample. Clearly it is important that measures are acceptable and applicable with the population being investigated. There are even greater hurdles in designing new measures that have no previous development, evaluation, or normative data, but this may prove necessary for the exploration of new constructs, theoretical approaches, or applications. It is helpful if the theoretical formulation guides the development of measures as was done for the Theory of Reasoned Action (Fishbein & Azjen, 1975). However, the content and format of new questionnaires is likely to begin with pilot or exploratory work, often using qualitative methods of data collection (see Volume 3 of this series) to identify salient material. For example, in developing a measure of perceived control of recovery from disabling disease, we started with spontaneous comments by patients which were subsequently evaluated using standard reliability analyses and tested for construct validity (Partridge & Johnston, 1989). The problems in using self-report interview or questionnaire data are widely recognized. Various response sets may affect responses and in health psychology, social desirability (the tendency to give responses attracting the approval of others) and negative affectivity (bias towards a negative view of self, circumstances, and events) may be particularly important. Social desirability is likely to be important where there are recommended or expected styles of behavior. For example, social desirability might lead to exaggeration of adherence to medical advice or health protective behaviors, but might result in under-reporting of health-damaging behaviors such as smoking. It is often valuable to assess and make allowance for social desirability by using an instrument such as the Marlowe±Crown Inventory as in Weinberger, Scwartz, and Davidson (1979). Watson and Pennebaker (1989) suggest that negative affectivity may be a source of error in examining the relationship between self-report measures where each measure may be influenced by the individual's tendency to focus on the negative aspect; for example, correlations between mood and health status might simply be due to individual differences in negative affectivity coloring perceptions of health status. Although such considerations apply to all measures, they may prove particularly important where measures involve self-report. These measures are commonly used in health psychology and the sources of error in self-report measures are generally recognized (Abrahams & Hampson, 1996; Haaga, 1997). However, they may be a particularly serious source of bias if the

Introduction investigator examines the relationship between two such measures. If both measures are subject to the same form of response set, such as social desirability or negative affectivity, then apparent relationships between constructs might be due entirely to the correlation in the biases in the measures.

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than home settings. Thus, while observational methods are attractive as an adjunct to selfreport methods used in interviews and questionnaires, they too have practical constraints, sources of unreliability, and factors which limit their validity. 8.04.1.2.4 Psychophysiological measurement

8.04.1.2.3 Observation of behavior Observations of behavior may be undertaken where self-report is impossible, or to supplement self-report measures. These observations may be made by health professionals, such as the clinical assessments frequently used in studies of preparation for surgery (Anderson, 1987), by members of the target person's household as in studies of smoking, or by the investigators as in the observation of limitations in the performance of daily activities following illness. Such observations are limited by the observers' inability to see the full range of the behavior. Most health professionals will see the patient for quite short periods, and even nursing staff are typically limited to 8 or 12 hours per day. Lack of concordance between self-report and the observation of the professional may therefore be due to limitations in their observations as well as the noted problems in selfreport. Nurses assess surgical patients as having more emotional problems than the patients report and are less accurate at pinpointing patients' emotional problems than other patients are (Johnston, 1982), perhaps because of the limited interactions they have with patients. Different health professionals perform different tasks and have very different styles of interaction with patients and this may result in systematic, rather than just random, variations in the assessments they make (M. Johnston et al., 1987). Thus, the choice of observer may critically affect the results obtained. Members of the individual's household or social network may also be limited in the observations they can make. Very often they are involved in assessing the performance of undesirable, health-damaging behaviors such as smoking or consumption of fatty food, or adherence to a recommended medication, diet, or exercise regimen. The chosen observer may be unable to ascertain whether the person has participated in the target behavior when out of sight, or may be motivated to present a favorable picture of the friend or relative they are observing. When investigators observe behavior, this is always restricted either in time or in the range of behaviors. For example, assessments of limitations of function typically require the performance of the activity, often in clinical rather

Many psychological processes implicated in the etiology, treatment, and assessment of disease and disease-related processes involve changes in physiological systems in response to psychological stimuli. This is particularly the case if stress, stress reduction, or emotion is involved. The measures used in particular investigations will often reflect the disease under study so, for example, heart rate and blood pressure are used in studies of heart disease (see Chapter 8.08, this volume), gastric measures in studies of gastrointestinal disorders (see Chapter 8.12, this volume), and measures of muscular tension in studies of headache (see Chapter 8.23, this volume). A general review of psychophysiological processes in disease is provided by Steptoe (Chapter 8.02, this volume). (i) Stress testing The actual use made of psychophysiological techniques obviously depends on the question under investigation. However, many studies involve contrasting a period when the subject is relaxed with when they are stressed. The choice of condition for both periods can be critical. Few subjects find the psychophysiological laboratory immediately relaxing and it may be difficult to control and standardize the temperature, humidity, and sound level. The choice of stressor and control tasks is also critical. The challenging video game that produces an enormous elevation in heart rate (HR) and systolic blood pressure (SBP) in a male teenager may be totally inappropriate in a late-middle-aged patient with heart disease where carefully selected role-play may be a more useful task (Ironson et al., 1992). It can also be difficult to find control tasks with similar metabolic requirements to the stressors to ensure that differences due to physical effort are not interpreted as being due to psychological stress. (ii) Physiological measures Some of the most commonly used psychophysiological measures are outlined below. Cacioppo and Tassiary (1990) describe most aspects of psychophysiological measurement in their excellent Principles of psychophysiology. The main bodily systems that are studied in

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health psychology using psychophysiological methods are the cardiovascular system, the respiratory system, aspects of sweating, the gastrointestinal system, and the skeletomuscular system. Hormonal measures such as adrenaline, noradrenaline, and cortisol are also often taken, as are a wide variety of measures of immune function. (a) Cardiovascular. Cardiovascular measures are among the most widely used psychophysiological measures. This is because of their use in the study of the stress process and also because of the specific relationship between such responses and cardiovascular disease (see Chapters 8.02 and 8.08, this volume). Heart rate, the most common cardiovascular measure, is reliably recorded from the electrocardiogram (ECG), a record of the electrical activity of the heart. There may be both intra- and interassessor unreliability in the manual assessment of blood pressure and therefore automatic assessments are better for most purposes. Blood pressure (BP) is determined by the amount of blood pumped by the heart (cardiac output) and the resistance of the blood vessels to the passage of blood (peripheral resistance). On each cardiac cycle, pressure fluctuates between a maximum value as the blood is ejected (SBP) and a minimal value just before the next heart beat (diastolic blood pressure, DBP). BP is measured in millimeters of mercury (mmHg). In healthy individuals the SBP is approximately 120 mmHg, and the DBP is 80 mmHg. BP can rise markedly during psychological stress and raised BP at rest defines hypertension. The more specialist measures of cardiac output and peripheral blood flow are less commonly used. As there are considerable technical challenges in the direct measurement of cardiac output, the most common measurement approaches are indirect, and based on measuring changes in electrical impedance across the heart. Peripheral resistance cannot be determined directly, but can be calculated from BP and cardiac output. However, flow in specific parts of the vascular system can be measured. The most widely used method is photoelectric plethysmography, which relies on the fact that red blood cells scatter infrared light. When infrared light is passed through the skin or scattered by the blood in skin, variations in light between the light source and a detector can give an indication of blood flow. Such methods are used in some heart-rate detectors that do not use the ECG, and have been used in the study of abnormalities of blood flow in the temporal artery in headache (see Chapter 8.23, this volume). More demanding methods, based on direct measures of limb volume, can provide quantitative measures of peripheral blood flow.

Freedman (1989) provides an application in Raynaud's disease. Further details on cardiovascular measurement can be found in Steptoe and Johnston (1991). (b) Respiration. Respiration is studied in its own right in conditions with respiratory symptoms and also because variations in breathing have a profound effect on other bodily systems such as the cardiovascular system. Respiration rate can be determined from either belt-like devices round the chest that produce a electrical signal that varies with chest expansion or from thermistors placed near a nostril, used to detect the difference in temperature between inhaled and exhaled air. Other measures to indicate different types of breathing, such as in hyperventilation, require the use of several chestmovement detectors. (c) Sweating. Sweating-related activity is a widely used psychophysiological measure. The number of sweat glands open determines variations in the resistance of the body to the passage of a small electric current between two sites. In certain areas of the skin, such as the fingertips, the main cause of sweating is arousal (rather than temperature), and therefore variations in electrodermal measures such as skin conductance provide a very useful measure of arousal. Since sweating is under purely sympathetic control, skin conductance is more readily interpreted than other measures, such as HR, which reflect the balance between the sympathetic and parasympathetic systems. (d) Gastrointestinal. The gastrointestinal system is measured using the electrogastrogram, a record of the electrical signals associated with contractions of the gut. (e) Musculoskeletal. Activity in the musculoskeletal system is recorded using the electromyogram, a record of the electrical impulses produced by contracting muscle fibers. This can give information on small specific muscles, such as the frontalis muscle often studied in relation to headache (see Chapter 8.23, this volume), or larger muscles relating to gross bodily movements (see Chapter 8.19, this volume). (f) Stress hormones. The stress hormones epinephrine, norepinephrine, and cortisol can be measured in either blood, urine, or saliva. Although these measures can be illuminating, the assays involved and their interpretation is a complex matter. Difficulties can arise in the methods of collection of samples, in the storage prior to assay, and in the reliability of assays over laboratories, technicians, and time. (g) Immune measures. The use of immunological measures, such as various types of immunoglobulin or T lymphocytes, is highly attractive in some areas of research such as infection, cancer, or HIV (see Chapters 8.10 and

Introduction 8.23, this volume). These measures incur the same hazards as stress hormone assays but, additionally, this is a rapidly advancing field and the choice and interpretation of measures requires current, specialist expertise. 8.04.1.2.5 Clinical and pathophysiological indices Medicine uses many clinical and pathophysiogical indices in screening populations, investigating disease, and charting recovery. These measures include: routine clinical measures such as temperature or pulse rate; indices of heart disease derived from the ECG or echocardiogram; measures of bacterial infection determined from samples of bodily fluids; the simple imaging techniques like the X-ray that have been in use for decades; and complex imaging of the functioning body now possible with techniques such as magnetic resonance imaging (MRI). In health psychology, one may wish to understand such measures either to have a better understanding of the medical condition of a patient in treatment or to use the measures in research. In either case it is important to ask oneself if the information is really necessary. Many psychologists enter this field with the belief that medicine has established valid and reliable measures of illness and recovery. This is not always so. Much of medicine relies on the patient's report of their symptoms. In many instances, treatments are given and terminated and patients are discharged from hospital when they indicate that they are better by their speech or actions. Other sections of this chapter indicate how such symptoms can be measured with much greater reliability and precision than is common in the medical assessment of symptoms. If one is treating a patient with a condition like diabetes, hypertension, or asthma, one often wishes to know the severity of the condition, the prognosis, or the patient's medical progress. Information on blood sugar, BP, or peak respiratory flow may inform treatment or, at the very least, increase communication and rapport between psychologist and client. A considerable amount of such information is provided in the chapters of this volume on specific medical conditions. In addition, it is likely that one of the current editions of standard large medical textbooks designed for undergraduate use will provide more than enough information. Difficulties can arise if textbooks use language that is not appropriate to local or national diagnostic and treatment approaches, and locally available patient pamphlets may be equally valuable. If medical test data is needed for research purposes, then the usual concerns over mea-

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surement standards apply. It is unwise to assume that medical measurement is either reliable or valid; for example, we have found that repeated measures of height in adults may not achieve high reliability. In overstretched medical environments, clinical testing is often carried out under far from ideal conditions. For example, sphygmomanometers (for measuring blood pressure) are often not serviced or even checked for long periods, and standard conditions for the taking of blood or urine samples are not always observed. The information obtained from such tests may be adequate for clinical purposes, such as preliminary screening or monitoring change, but not for research where accurate absolute values are required. It is therefore incumbent on the researcher to ensure that the measures they are using in research are of research quality, with known reliability and validity, and adequate to answer the research questions. 8.04.1.2.6 Health-care records Health-care records may be used as sources of data on the behavior of a patient, such as in seeking health-care, the nature of medical recommendations or treatment, the results of clinical assessments, or the patient's health or illness status. As these data were typically not recorded for the purposes that the health psychology investigator has in mind, they are unlikely to be biased with respect to the question investigated. However, they may have other biases and sources of error, and are frequently incomplete and therefore an unreliable source of information. As a result, they are normally used to back up or validate other, more direct, methods, rather than as the main source of evidence. 8.04.1.3 Design of Investigations Measurement can be improved if some thought is given to the selection and timing of measures, as well as to the measurement implications of the overall design of the investigation in the planning stage. Investigators often use a series of measures, especially questionnaires, and then the order of presentation needs to be considered. If a measure of transitory state, such as anxiety or pain, is included, this should normally be presented first as otherwise the responses may be largely determined by the effects of completing the questionnaires. For example, if respondents are required to answer questions about their illness and its future management first, this might increase the level of anxiety reported.

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Indeed, experimental approaches to mood manipulation may ask participants to recall just such events with reliable effects on mood (Fisher & Johnston, 1996a). There may still be order effects for other measures and some investigators present questionnaires in a randomized or counterbalanced order to ensure that results obtained are not simply due to order of presentation. Although this is desirable scientifically, it may sometimes reduce the acceptability to respondents if, for example, a clinical research interview does not appear to follow a logical sequence. Some error may be reduced if measures are not all completed at the same time. For example, mood might be measured on a different occasion from recall of illness events. If a causal analysis is required, then a longitudinal design will be more effective than a cross-sectional design where it is not even possible to assert that the causal construct was assessed prior to the consequence. Experimental designs are even more effective and these may range from short-term laboratory manipulations to randomized controlled trials of therapeutic interventions. For example, the effect of perceived control on disability was examined experimentally in the laboratory by manipulating control cognitions and observing the subsequent functional limitations (Fisher & Johnston, 1996b). An example of the use of a randomized trial in investing causal explanations is provided in the recurrent coronary prevention project (Friedman et al., 1986) where cognitive-behavioral methods were used to reduce Type A behavior in the experimental group but not in the control group; finding a reduced rate of recurrent cardiac episodes in the experimental group furthered the hypothesis that Type A behavior caused coronary heart disease (CHD). Other designs have been developed specifically for research in clinical situations (see Chapter 8.05, this volume).

8.04.2 MEASURES USED WITH HEALTHY PEOPLE This section addresses measures used in studying people who have not been selected as being ill or in need of medical care. Typically these are populations of students or community residents and may well contain many people who are ill and may even be receiving care. Undoubtedly the two main theoretical questions addressed in these populations have been the understanding of factors influencing healthrelated behaviors, namely behaviors likely to affect health (see Chapter 8.01, this volume), and identifying psychological and behavioral characteristics predictive of disease, especially

heart disease and cancer. A fundamental question that is sometimes addressed explicitly is how to measure health.

8.04.2.1 Measuring Health It has proved extremely difficult to measure health (Bowling, 1991). This is hardly surprising given the lack of an agreed definition of health. The complex WHO (World Health Organisation) definition of health that is commonly adopted includes social, psychological, and physical aspects (Abelin, Brzezinski, & Carstairs, 1987). There is common agreement that health is more than the absence of illness and that it is characterized by the individual's vitality and functional capacity, their mood and outlook, and their participation in activities. Wright (1990) has conceptualized health as three dimensional: freedom from unpleasant symptoms and sensations; ability to perform conventional roles and duties; and possession of physiological, psychological, and social resources. Assessment of absence of symptoms as an index of health has proved problematic as people who would be characterized as healthy are unlikely to be symptom-free. Even number of symptoms proves problematic, as symptom reporting is associated with mood, emotional disorder, and negative affectivity. For example, many measures of emotional disorder such as the GHQ (Goldberg & Williams, 1988) ask about the experience of somatic symptoms and have found that people with greater emotional disorder report more somatic symptoms. In a similar vein, use of health services may reflect individual patterns of responding to symptoms, rather than indexing health per se. Watson and Pennebaker (1989) suggest that there are individual differences in negative affectivity, the tendency to attend to and report negative experiences including sensations which might be interpreted as symptoms. They have developed a measure, the PILL, which assesses the tendency to endorse symptoms that can be used to allow for negative affectivity. Thus measures of symptoms or health-care usage may be misleading as an index of ªhealth.º Simple self-report measures of health, such as ratings on four-point verbal rating scales from excellent to poor, have been found to be predictive of future mortality (Idler, 1992). Even when allowance is made for concurrent illness, people rating their health as poor are more likely to be dead at follow-up than those giving higher ratings. These results suggest that such ratings must have some validity as measures of health. Their main limitation is

Measures Used with Healthy People the lack of sensitivity inherent in such brief scales. Measures of general well-being such as the Bradburn Affect Balance Scale (Bradburn, 1969) or even measures of satisfaction with life (Diener, Emmons, Larson, & Griffin, 1985) may come closer to the WHO concept of health as they allow the individual to evaluate all aspects of functioning. It is curious to note that the measurement of health-related quality of life has mainly been investigated in ill, rather than healthy, populations as discussed below. These measures are rarely evaluated with healthy populations and are therefore likely to be relatively insensitive to variations in their health. Health may also be characterized as an expectation of continuing absence of illness, either due to engagement in health-protective behaviors such as taking exercise, or to having few risk factors for disease. Risk factors may be genetic (e.g., heart disease or diabetes), physiological (e.g., high blood pressure), or environmental (e.g., living in an area of high air pollution). However, many risk factors are behavioral, such as smoking or diet, and these may be assessed along with health-protective behaviors as part of the measurement of health.

8.04.2.2 Health-related Behavior Two kinds of health-related behaviors can be identified. The first group of behaviors are those that have been demonstrated to confer health risk or disease protection. Evidence from the Alameda County study (Schoenborn, 1993) and from other epidemiological studies demonstrates that some behaviors, especially smoking (Doll, Peto, Wheatley, Gray, & Sutherland, 1994), increase risk, while others, such as engaging in exercise, appear protective. Clinical and public health interventions are frequently directed at changing behavior to reduce risk and enhance protective behaviors (Oxcheck Study Group, 1994; Family Heart Study Group, 1994; see Chapter 8.29, this volume). The behavioral assessments found to predict disease end-points in epidemiological studies have demonstrated predictive validity and should be used in order to assess risk in a population. For example, comparison with risk data from the British Regional Heart Study (Shaper et al., 1982; Shaper, Pocock, Phillips, & Wacker, 1987) is only valid if questioning about smoking and diet follow the methods used in that study. The other group of behaviors are the health behaviors, defined as those behaviors that people undertake in the belief that they will prevent disease or ensure detection prior to

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symptoms (Kasl & Cobb, 1966). There is ample evidence that most people report engaging in a number of these behaviors (Amir, 1987; Cox et al., 1987; Harris & Guten, 1979). Several checklists of these behaviors have been published (Amir, 1987; Prochaska, Leventhal, Leventhal, & Keller, 1985), but unlike the risk/protective behaviors that can be validated against epidemiological findings, there is little evidence of validation of these checklists. Selfreports of behavior are likely to be subject to bias, especially social desirability bias, as discussed above. Until they are validated against some other measure of health behaviors, their value as assessments of health behaviors is restricted and their primary value is in assessing the rate of reporting behaviors.

8.04.2.3 Health Cognitions A major group of theoretical models have been developed to predict health-related behaviours from health-relevant social cognitions (see Chapter 8.01, this volume; Conner & Norman, 1996). Models such as the Health Belief Model, Social Cognitive Theory, and the Theory of Planned Behavior propose that a range of health and health-behavior cognitions determine health-relevant behaviors. Health cognitions include outcome expectancy, perceived severity, perceived vulnerability, health locus of control, and health value, whereas health-behavior-relevant cognitions include response efficacy, self-efficacy, behavioral intention, implementation intention, and action plans. These models raise some important measurement issues: the individual may not be aware of the cognitive processes influencing behavior; it may be difficult to operationalize all of the model's constructs; and the problems with selfreport measures have been noted. Further, the models vary in the precision of specification of measurement of core constructs, ranging from the proscriptive Theory of Planned Behavior to the very poorly defined constructs of the Health Belief Model. Some constructs have standardised measures that have psychometric validation and published norms. The best known of these is the Multidimensional Health Locus of Control (MHLC) scale (Wallston, Wallston, & Devellis, 1978), which assess three components: internal, powerful others, and chance locus of control. Although this measure has been criticized for its lack of specific relevance for people who are ill, it continues to be appropriate for healthy populations. Wallston (1992) has proposed that locus of control by itself should not be enough

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to predict health behavior and proposed that it should be combined with a new construct, perceived health competence, a construct akin to generalized health self-efficacy (Smith, Wallston, & Smith 1995). The social learning theory, from which locus of control derived, would suggest that the MHLC should only predict health behavior in combination with a measure of health value (Lau, Hartman, & Ware, 1986) and there has been criticism of investigations in this area for using the model inappropriately. This relates to a more general methodological problem in this area of investigationÐthe selection of variables from models without addressing complete models. The investigator needs to have a clear objective. If the intention is simply to explain as much behavior as possible, then the investigator is justified in choosing the most likely combination of variables from whichever models seem appropriate. If the objective is to test a model, then all the constructs of the model, and none from other models, should be assessed. If the aim is to test the power of the model to explain behavior, then only the proximal determinants specified by the model need to be investigated; so, for example, in the Theory of Planned Behavior (see Chapter 8.01, this volume), only behavioral intention and perceived behavioral control would need to be assessed as all other variables act through these two. 8.04.2.4 Predicting Disease The main issues of measurement in predicting disease from individual differences in behavior are: (i) the specificity of the hypothesized link between behavior and disease, because this affects the choice of behavioral measure and disease endpoint; (ii) the stability of the behavior over time or environment; (iii) the independence of initial health status and the predictor measure; (iv) the independent measurement of predictor and endpoint; (v) the costs and practicality of the measures. 8.04.2.4.1 Hypothesized link between behavior and disease For much of the twentieth century there have been two competing views on the psychological factors thought to predict disease. One camp, which was most clearly manifest in the writings of the psychoanalytically influenced psychosomaticists of the 1930s and 1940s, held that there was a very specific relationship between parti-

cular personality types and specific diseases. The alternative view, exemplified by the theories of Cannon and Selye, maintained that disease was the result of general stress-related processes. More sophisticated versions of the same positions can be seen today (see Chapter 8.02, this volume) and lead to very different measures. Type A, or coronary prone, behavior (Friedman & Rosenman, 1964), and the more recent emphasis on hostility (Hecker, Chesney, Black, & Frautschi, 1988), or even type of hostility (Siegman, Dembroski, & Ringel, 1987), is a good example of a specific personality/disease theory. Friedman and Booth-Kewley's (1987) concept of the disease-prone personality is a version of a very general theory, as is Seligman's theory of a pessimistic explanatory style (Peterson et al., 1985). Friedman and Rosenman (1964) described Type A behavior (TAB) as a pattern of competitive, time-pressured, and aggressive behavior that led to CHD and developed a specific structured interview to assess it. They held that TAB was best measured by an observing behavior (during the interview) and not by questionnaire. In the landmark Western Collaborative Group study (WCGS), they showed that, in accord with their theory, TAB predicted a specific endpoint, CHD, independently of the classical risk factors for heart disease (Rosenman et al., 1975). Friedman and Rosenman's emphasis on specificity was extended by later researchers who showed the concept of TAB was too broad and that hostility (Hecker et al., 1988) or perhaps even a specific type of expressive hostility (Siegman et al., 1987) was the main psychological predictor of CHD. In marked contrast, Friedman and BoothKewley (1987) hypothesize that there is a general tendency to experience negative emotions which leads to enhanced risk of disease of many kinds. They are able to summarize an extensive literature describing many different negative psychological states, such as anxiety, depression, or anger, and relate them to many different diseases, such as CHD, asthma, or cancer. These two types of theory lead to markedly different measurement concerns with one requiring very specific behavioral measures, whereas the other is best served by very broad measures of negative emotion. Similarly, one theory requires careful measurement of a specific endpoint, CHD, whereas the other requires measures of all causes of morbidity or even total mortality. 8.04.2.4.2 Stability of behavior Typically, theories in this field imply that an enduring trait or style exacerbates psychophysiological processes which result in disease.

Measures Used with Ill People Thus, both the predictive measure and the underlying trait being measured have to be stable over the prolonged time periods likely to be necessary for disease to develop. This may be plausible for the personality characteristics described by Friedman and Booth-Kewley, but is less certain for TAB. Friedman and Rosenman held that TAB was a product of the subject's environment and would change if the environment changed. It is the case that TAB in the WCGS was predictive of CHD at 8.5 years postmeasurement (Rosenman et al., 1975) but not at 22 years (Ragland & Brand, 1988) and there are some indications that most of the predictive power of TAB falls in the first few years after assessment. There are predictors that are thought to be specifically short term such as vital exhaustion that predicts myocardial infarction best in the year or two after assessment (Appels & Otten, 1992). 8.04.2.4.3 Independence of initial health status and predictor behavior Predictive studies are seriously compromised if the subjects' current health status affects the predictive measure. So, for example, early reports of perceived heath predicting mortality in the Alameda County study might have been due to perceived health being affected by concurrent disease, but this is unlikely to be the explanation of prediction over decades (Schoenborn, 1993). This problem of health status affecting the predictor is rare in studies of healthy subjects, especially if care is taken to screen for disease. However, it is an obvious concern when subjects are selected for early signs of disease, as in the studies of vital exhaustion (Appels & Otten, 1992). The problem usually occurs when studying a shortterm predictor of a comparatively rare event, such as a myocardial infarction; a convenient way of ensuring enough events in a short time is to select high-risk subjects but then their state of health may affect psychological predictors such as depression or exhaustion. The best solution is to test a substantial number of unselected subjects so that enough events occur in the critical time period. 8.04.2.4.4 Independence of predictor behavior and disease endpoint In most predictive studies predictor and endpoint are, in measurement terms, independent, that is, the disease endpoint is determined without knowledge of the predictor. However, when self-report is used to define the predictor and the endpoint there is a real possibility of the relationship being inflated through common

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method variance. This is serious problem when concepts such as the disease-prone personality are used to predict conditions which depend on the patient's report of symptoms (e.g., angina pectoris), particularly as the disease-prone personality has an obvious similarity with Watson and Pennebaker's (1989) concept of negative affectivity which affects symptom reporting. 8.04.2.4.5 Costs and practicality of measures Predictive studies often involve the testing and follow-up of many subjects. Such studies are expensive, are often multidisciplinary, and there is a great pressure to measure as many predictive factors as possible with minimal load on the respondents. As a result, the epidemiological literature is replete with studies in which inadequate psychological measures fail to predict disease. A striking example was the decision, understandable but probably unfortunate, of many researchers to replace Friedman and Rosenman's (1964) expensive and time-consuming TAB structured interview with much simpler inexpensive questionnaires (D. W. Johnston et al., 1987). It has been known for some time that, although different questionnaire measures of TAB correlate satisfactorily (Johnston & Shaper, 1983), they do not measure the same behaviors as the structured interview (Matthews, Krantz, Dembroski, & MacDougall, 1982) and that aspects of TAB which relate to CHD may not be assessed well by questionnaire. Adequate psychological measurement is necessary in predictive studies since the cost of a longitudinal study that fails through poor measurement is immense. 8.04.3 MEASURES USED WITH ILL PEOPLE Under this heading, measures are considered which have been used with individuals identified by their illness status although they may not be concurrently experiencing illness. In addition to their relevance for ill people, such measures share a sensitivity to the respondent's status, for example, by being limited in length. The central issues here are to measure how ill the person is, what the effects of illness are and how individuals respond to and cope with illness. (The word ªillnessº is used to refer to the subjective experience associated with disease processes as we believe it has universal meaning. In American English, the word ªsicknessº would be synonymous, but in other parts of the world this term is confined to illness associated with nausea.)

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8.04.3.1 Measuring Illness It can be a source of some confusion and frustration to discover that there are no biomedical indices of illness. Although the state seems subjectively recognizable and can be meaningfully replicated in animal studies, there is as yet no measure which reflects it. Recent animal research suggests that the state of illness may be associated with raised brain cytokines (Dantzer, 1997), but even this research offers little immediate prospect of a useful biomedical measure. The concept of illness, the subjective experience, is contrasted with the concept of disease, the pathophysiological process. For some diseases, it is possible to obtain a biomedical measure of the disease process such as degree of atherosclerotic occlusion in cardiovascular disease, degree of invasion of cancer cells, or loss of CD4 cells in AIDS. For others such as rheumatoid arthritis, there are indices of current inflammatory activity. However, patient ªillnessº may not relate directly to the disease process and, for many conditions, the main clinical and research assessments depend on patient observation or self-report. So, instead of reliable biomedical indices, ªillnessº is characterized by the subjective experience and associated behaviors. The problem of measuring illness and disease is illustrated by Bowling (1995) in her book Measuring disease. She includes measures of symptoms, pain, emotional states, disability, and quality of life. However, none of these measures disease as such and each is influenced by psychological and/or social processes in addition to disease processes. As noted, the experience and report of symptoms may be influenced by individual differences in negative affectivity, but will also be affected by current attention, mood, cognitive, and social factors. As the behavioral, emotional, and quality of life consequences of disease are likely to be influenced by different factors, they are each considered separately. 8.04.3.1.1 Symptoms and pain Problems in assessing the subjective experience of symptoms have been discussed above for healthy populations. Thus symptom checklists (Dunnell & Cartwright, 1972) need to be used with caution. In ill populations, there are disease-specific measures of symptoms such as measures included within composite measures. Examples, are the Rotterdam Symptom Checklist for cancer (de Haes, Van Knippenberg, & Neijt, 1990) or the Arthritis Impact Measurement Scale (Meenan, Gertman, & Mason, 1980). Such measures tend to have good internal

consistency and have been validated using factor analytic methods and concurrent and predictive validation against other clinical or functional measures. Pain is an important symptom of many conditions and an important motivator in seeking health care. Like other symptoms it is a subjective experience and therefore difficult to assess and validate measurement. The best known and most widely used measure is the McGill Pain Questionnaire (MPQ) (Melsack, 1975) which allows separate evaluation of sensory, affective, and evaluative components of pain. It records location, change with time, and factors influencing the pain and provides three main measures of intensity, the number of words chosen, the pain rating index, and the present pain intensity rating. A short form of the MPQ has been introduced which correlates well with the full MPQ and demonstrates sensitivity to change (Melsack, 1987). In clinical settings where, due to pain, patients may not have the concentration required for more extensive measures, a variety of single-item numerical and verbal pain rating scales have been used (see Chapter 8.24, this volume). 8.04.3.1.2 Behavioral consequences of disease The WHO analysis of the consequences of disease identified three consequences: impairment or loss of structure/function, disability or loss of performance of activities, and handicap or loss of social roles (WHO, 1980). It was proposed that disability resulted from impairment and that handicap resulted from both impairment and disability. Although there has been much debate about this analysis, other (e.g. Nagi, 1991) and more recent WHO (1997) approaches retain the main characterizations of the elements involved. Disability is defined in terms of behavior (Johnston, 1996) and is measured in terms of behavioral performance or capability. Thus, general disability measures assess limitations in the performance of normal functions; for example, the Barthel Index (Mahoney & Barthel, 1965) includes walking, bladder control, dressing, and using stairs, whereas more specific measures of Activities of Daily Living (ADL) assess the performance of everyday tasks such as self-care, shopping, and household tasks (Katz, Ford, Moskowitz, Jackson, & Jaffe, 1963; Lincoln & Edmans, 1990). There is debate about whether measures should assess what the individual does or what they can do. Clearly, limitation in capacity is the construct most closely related to the direct consequence of disease, whereas limitation in performance may indicate the additional

Measures Used with Ill People psychological, social, and environmental influences. Similar issues arise in other areas of performance psychology, where techniques such as dual-task performance have evolved to assess capacity; using the argument that, although performance may be maintained despite lower capability, the extra effort involved is assessed by examining the effects on a second task. To date, measures of disability have not taken account of this problem, and dual-task measures may enhance the measures in this field. The behavioral consequences of disease may not simply be loss of activities, but may also involve the performance of new activities. The observable behaviors associated with pain have been assessed and they include additional behavior as well as loss of activities. Keefe and Block (1982) and Richards, Nepomuceno, Riles, and Su (1982) have developed measures of pain behaviors (e.g., grimacing, guarding movements, rubbing) which are assessed by observers. These measures are not necessarily closely related to self-report pain measures and may additionally reflect the individual's response to pain experience. 8.04.3.1.3 Emotional consequences of disease Illness in oneself or in close family or friends is recognized as a significant source of stress in most methods of assessing life events and difficulties, including the original Social Readjustment Rating Scale (Holmes & Rahe, 1967). The emotional consequences can be assessed using any of the available measures of mood such as the STAI (Spielberger, 1983), the profile of Mood States (McNair, Lorr, & Droppelman, 1992) the CES-D (Radloff, 1977), or the GHQ (Goldberg & William, 1988). However, these can be confounding where somatic symptoms may be interpreted as emotional symptoms, such as where loss of appetite or slowing are indices of depression. Zigmond and Snaith (1983) introduced the Hospital Anxiety and Depression Scale (HADS) which they suggested minimized such confounding by reducing the number of such items. However, the success of this scale compared with other scales has not been assessed and, because it contains items such as ªI feel as if I am slowed down,º it may still contain contaminated items. This problem does not arise in assessing the emotional consequences for people close to the patient and there is ample evidence that the emotional consequences may be as great for them as for the patient, for example, following myocardial infarction (MI). Where they are also caregivers, measures of caregiver burden are a combination of the emotional and behavioral burdens of caregivers (Orbell, 1996). The stress

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is observed not only in self-report measures but also in evidence of impaired immune function (Kennedy, Kiecolt-Glaser, & Glaser, 1988) with resulting vulnerability to disease. Some measures such as the GAIS and PAIS (Derogatis, 1975, 1986) assess adjustment to illness. Adjustment is frequently addressed as a form of coping or as illness cognitions (see Sections 8.04.3.2 and 8.04.3.3). 8.04.3.1.4 Quality of life Although the construct of quality of life (QL) is widely used in assessing the consequences of disease, there are quite divergent schools of thought regarding definition and measurement. On the one hand, it is argued that the measures should assess the quality objectively, while on the other it is proposed that QL can only be evaluated according to the individual's expectations and values. Measures such as the Quality Adjusted Life Year (QALY) (Kind & Rosser, 1988; Rosser & Kind, 1978) or the SF-36 (Jenkinson, Coulter, & Loright, 1993) assume a universal value system, and so by assessing the individual's limitations it is possible to give an overall value to QL. By contrast, the Patient Generated Index (PGI) (Ruta, Garratt, Leng, Russell, & MacDonald, 1994) and the SEIQOL (O'Boyle, McGee, & Joyce, 1994) assess the individual's value system as well as the current levels of achievement in valued areas. The values are combined with the levels of achievement to generate an index reflecting quality of life according to the individual's own value system. Whereas the PGI requires the individual to respond in the context of their illness, the SEIQOL is one of the few measures of QL in current use in health psychology which could be used equally readily with healthy and ill individuals. Measures in other fields, such as the Satisfaction with Life Scale (Diener et al., 1985), assess QL without reference to illness and can be used successfully with individuals who are ill. Some measures have been developed specifically for some diseases, including the AIMS (Meenan et al., 1980) for arthritis and the Rotterdam Symptom Check List (de Haes, Van Knippenberg, & Neijt, 1990) for cancer. The authors argue that a more sensitive and acceptable measure of QL can be obtained in this way. This reflects the design of diseaserelated QL measures, depending on assessment of symptoms and limitations in function as a major factor in QL. Where health-related QL measures assume a value system, this is usually based on assessment of emotional state, symptoms, and disability and the measure offers a method of combining these values. So, for

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example, the QALY gives values for each combination of distress and disability, and this can be done for individuals with diverse diseases. It is clear that QL comes quite close to the WHO concept of handicap or to a combination of disability and handicap. There has been some attempt to measure handicap (e.g., the London Handicap Scale; Harwood, Gompertz, & Ebrahiam, 1994) and some measures clearly combine disability and handicap (e.g., the Sickness Impact Profile (de Bruin, de Wilte, Stevens, & Diederiks 1992) or the Functional Limitations Profile (Patrick & Peach, 1989). It is unlikely that there will be agreement on measurement while there continues to be debate about the constructs to measure. Although the construct of QL would appear to have value as a global measure of health outcome, it may mask the underlying processes as proposed by the WHO model. The WHO model proposes causal links between impairment, disability, and handicap rather than a homogeneous single construct and, further, allows the possibility that factors which may moderate the relationship between impairment and disability may be different from those that moderate the relationship between disability and handicap. Thus, the choice of measure, given the current stage of development of theory and measurement, is likely to be determined by whether one is seeking a simple health outcome measure or to understand the processes determining outcomes.

8.04.3.2 Illness Cognitions The dominant models of response to illness, including stress and coping (Lazarus & Folkman, 1984), social-cognitive (Bandura, 1997) and self-regulation models (Leventhal et al., 1997), agree that individuals develop their own mental representations of the condition and it is these representations that guide the response. Models vary in the cognitions specified and in the level of measurement achieved. Some address illness simply as a further example of a stressor and consider the degree of threat, outcome expectancies, perceived controllability, etc. as they would for any stressor. Leventhal et al. (1997) have attempted to characterize illness cognitions per se, and provide the most extensive work on this topic. They have identified five representations commonly occurring in individual representations: (i) identityÐthe label and symptoms associated with the illness; (ii) time-lineÐthe pattern of change over time, especially whether it is acute, chronic or fluctuating;

(iii) causeÐattributions for the illness; (iv) consequencesÐthe actual and expected consequences; (v) control/cureÐthe extent to which the illness can be controlled or cured. Their work was based initially on open-ended questions and qualitative analyses from which they developed guidelines for interviews (Leventhal & Cameron, 1987). More recently, Weinman, Petrie, Moss-Morris, and Horne (1996) have developed a questionnaire assessment of these five components of representations, the Illness Perceptions Questionnaire, using psychometric techniques to establish basic properties such as internal reliability of the scales. They have demonstrated that the scales have predictive and construct validity, finding that these cognitions predicted subsequent behaviors in patients post-MI as would be expected within the self-regulation model (Petrie, Weinman, Sharpe, & Buckley, 1996). Weinman et al.'s analysis assumes but does not test the five-component structure found by Leventhal et al. It also assumes a dimensional structure, with each of the five types of representation being distributed along a numerical scale. There are other examples of assessments of illness cognitions which start from different premises. Turk, Rudy, and Salovey (1986) used factor analytic methods implying an underlying dimensional structure, and found support for four dimensions: seriousness, personal responsibility, controllability, and changability. Although these factors have not proved entirely reproducible in subsequent studies, the degree of overlap between their factors, as characterized by the content rather than the labels for the factors, and the components proposed by Leventhal et al. is impressive. Thus, their controllability construct matches Leventhal et al., control/cure. Other measures address single constructs other are still compatible with the Leventhal et al. model. Thus, Felton, Revenson, and Hinrichsen's (1984) measure of ªAcceptance of Illnessº appears to examine the consequences of the illness, containing items such as ªmy illness makes me a burden on my family and friendsº and ªI have a hard time adjusting to the limitations of my illness.º Many measures address the control construct, including Wallston's recent form C adaptation of the Health Locus of Control scales for people with chronic disease (Wallston, Stein, & Smith 1994), scales for specific groups such as those with diabetes (Bradley, Brewin, Gamsu, & Moses, 1984), and those with the prospect of recovery from disabling conditions (Partridge & Johnston, 1989).

Measures Used in Health-care Contexts There are alternatives to the dimensional structured approach. Instead of building a representation of the illness from components, it may be useful to examine the prototypes used in evaluating new conditions (Bishop & Converse, 1986). So, for example, Lalljee, Lamb, and Carnibella (1993) have found seven clusters of illness prototypes. This type of analysis may prove useful in understanding responses to ambiguous sets of symptoms where patterns of response may be different to those where symptoms are more clear-cut.

8.04.3.3 Coping with Illness Coping is defined as what people do to try to minimize stress and is commonly seen in health psychology as problem-focused, that is, directed at reducing the threats and losses of the illness, or emotion-focused, namely directed at reducing the negative emotional consequences. Perhaps the best known measure of coping is the ways of Coping Questionnaire, developed by Folkman and Lazarus (1980). They used factor-analytic procedures to establish the dimensional structure, but later analyses have produced different numbers and types of factors. Many different coping styles have been identified and measured and contrasts are made between avoidant and attention coping, between active and passive coping, and between behavioral and cognitive coping. The COPE (Carver, Scheier, & Weintraub, 1989) attempts to represent all of these aspects of coping in a multidimensional inventory giving scores on 13 conceptually distinct types of coping. Further, the measure can be used to assess coping style, a dispositional measure of habitual ways of coping, or to assess coping strategy, the methods of coping used to address a specific stressor such as a current illness. The disadvantage of the comprehensiveness of the measure is that it is quite long, appears repetitive, and can seem burdensome to people who are ill. Carver (1997) has therefore published a shortened version which has proved more acceptable while retaining the multidimensional features of the measure. Other measures address specific forms of coping, for example, Miller's (1987) measure of monitoring and blunting, or they deal with specific clinical conditions, such as Watson et al.'s (1988) assessment of coping styles employed by people with cancer. Investigators choosing a measure of coping need to consider the compatibility of the measures with their theoretical perspective, the range of scores available, the acceptability of the measure to their clinical group and,

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possibly, the need to measure not only coping with the illness, but also coping with stressful forms of health-care. 8.04.4 MEASURES USED IN HEALTHCARE CONTEXTS People receive diverse forms of health-care, ranging from health checks, through consultations about minor symptoms, investigations of ambiguous symptoms, receiving diagnoses with threatening implications, enduring complex, painful, uncomfortable, or inconvenient forms of treatment, to being maintained on lifesupport systems. Investigations in health psychology examine factors resulting in individuals seeking health-care or accepting care that is offered, they explore the nature of the process of delivery of health-care, and they evaluate the psychological and behavioral outcomes of health-care. For most forms of health-care, the recipients will be ill and therefore the questions and measures addressed in the previous section will also be pertinent. For those undergoing health checks or screening procedures, issues relevant to healthy individuals may have more relevance. A major source of behavioral variation in health-care is due to the health professionals or providers as well as to the patients (Marteau & Johnston, 1991). As health services move towards implementation of evidence-based care, the assessment, explanation, and modification of their behavior is likely to be an increasing focus of investigations (Grol, 1992, 1997). 8.04.4.1 Measuring the Process of Health Care The process of health-care delivery includes policy and management decisions and behaviors which occur at a level that tends to be outside the normal range of health psychology. The focus is primarily at the point of delivery, in the interaction between the patient and the health-care provider. 8.04.4.1.1 Communications between patients and providers There is ample evidence that the nature and style of communications can determine the outcomes of health care (Ley, 1988; see Chapter 8.03, this volume). Various methods have been developed to describe and characterize the interpersonal communication process, using raters to assess records (audio, video, or typed transcripts) of the communication. Roter and Hall's Interaction Analysis (1989) based on the

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original work by Bales has been used to assess the components of interpersonal communication, such as giving information, asking questions, etc., whereas Stiles' Verbal Response Mode analysis (Putnam, Stiles, Jacob, & James, 1985; Stiles, 1989) identifies eight mutually exclusive modes of responding, including disclosure, interpretation, confirmation, and reflection. Other rating scale measures have been developed to assess the performance of health professionals against verbal and nonverbal performance criteria used in training (Maguire & Selby, 1989) or to assess the degree to which a doctor is patient- or doctor-centered (Byrne & Long, 1976). In each case, the methods are assessed in terms of inter-rater reliability and the predictive value of the assessments. Methods of assessing written communications have also been developed (Ley, 1988). A major issue has been the assessment of intelligibility of written information such as leaflets for patients and some methods, such as the Flesch formula, can readily be applied to text using widely available word-processing software. 8.04.4.1.2 Uptake and adherence When patients do not take up an offer of health care or do not adhere to recommended advice or treatment, the process of health care is interrupted. Although the assessment of uptake per se is fairly easy from health care records, it may be more difficult to ascertain whether a failure of uptake is due to not receiving the invitation, not understanding the invitation, not being able to accept the health care offered, or refusing the health care offered. These different patterns of interrupted health care have different causes and may have different effects on health outcomes; for example, Marteau et al. (1992) found different patterns for women refusing tests in pregnancy compared with those who simply omitted to have the test. Similar contrasts have been drawn between intentional and nonintentional nonadherence to medication regimens and Horne (1997b) has developed a measure that allows separation of the two types of nonadherence. Although selfreports of adherence are widely criticized as being subject to social desirability biasing, they are correlated with other measures of adherence. In addition, all other measures of medication adherence have been criticized. Behavioral observation is limited as no observer can be permanently present, while pill counts and dispensers which record occasions of use can readily be manipulated by the patient who would wish to appear more compliant. For adherence to advice on behavior change, some observational corroboration may be

possible, but with the above caveats. For smoking advice, there are physiological indices such as serum cotinine which are less likely to be manipulated, whereas for dietary advice, measures of weight or serum cholesterol may be relevant. However, none of these measures has a one-to-one relationship with the behavior and they can therefore be misleading. In sum, there appears to be no easy accepted solution to the problem of measuring adherence. It may be sufficient to use one, probably a self-report measure, for most investigations, but if this is a key variable, then more than one method should be used if possible. 8.04.4.1.3 Behavior of health professionals Two main areas of behavior of health professionals have been investigated: their adherence to recommendations and the amount of stress they experience. As for patient adherence, it can be difficult to measure what cannot be observed and self-report may prove useful. However, some behaviors, such as hand hygiene, are observable and have been investigated. Other behaviors, such as drug dispensing, are likely to be assessable from patient or ward records. Stress in health professionals has been investigated because of the recognition that working with people who are ill may be stressful and a concern that stressed professionals may be less able to deliver effective health care (Payne & Firth-Cozens, 1987). Perceived stress and the emotional impact can be investigated using conventional measures such as the Perceived Stress Scale (Cohen, Kamarck, & Mermelstein, 1983) or measures of mood or emotional state. In addition measures of occupational stress have been used, for example, the nursing stress index (Cooper & Mitchell, 1990), and the Maslach Burnout Inventory (Maslach, 1982) has been widely used to evaluate disabling levels of stress. The effects of stress on performance of tasks has been assessed using self-reports of errors or by using cognitive tasks such as reaction time tasks as a proxy for the real task. The prevalence of major errors, such as in drug prescribing, can be investigated from health care or medicolegal records (Vincent, Ennis, & Audley, 1993). 8.04.4.1.4 Psychological and behavioral interventions The recording of psychological interventions is not normally regarded as a measurement issue. However, a wide range of psychological and behavioral interventions is used in health care and it becomes increasingly important to be

Measures Used in Health-care Contexts able to at least classify interventions. In the field of preparation for stressful medical procedures there are many interventions, for example, procedural information, sensory information, cognitive coping, and relaxation (Johnston & Vogele, 1993). For methods to be replicable and discriminable, they need to be characterized in sufficient detail to be able to at least classify which type of intervention is being used and perhaps to be able to rate interventions on the extent to which they use each mechanism (e.g., giving information, providing behavioral instruction, and training in relaxation). This issue becomes increasingly urgent as high-profile reports of investigations of such interventions are published without any data, descriptive information, or methods of accessing such information about the interventions being provided (Johnston, 1995). 8.04.4.2 Health Care Cognitions The beliefs, attitudes, and expectations of patients and health care providers to various aspects of health care have been investigated, often with a focus on the potential mismatch between patient and provider of health care or on beliefs likely to interfere with effective health care delivery. 8.04.4.2.1 Patients' health care cognitions Some of patients' health care cognitions are those already considered with reference to health and illness; for example, perceived effectiveness of health care may be assessed in social cognition models of health behaviors, and perceived cure and controllability is a key element in illness cognitions. Patients' expectations of health care have been investigated in terms of their general preference for managing their own treatment and the information relevant to their condition (Krantz, Baum, & Wideman, 1980) as well as preferences for care in a specific consultation with a doctor (Salmon & Quine, 1989). In each case, the scale has been validated using factor-analytic procedures and in both, items referring to provision of information have loaded on different factors from items dealing directly with treatment issues. Thus, there is some evidence that distinct elements of patients' preferences for medical care are being investigated. In addition, there are more general measures of attitudes toward physicians and towards medicine (Horne, 1997a; Hulka, Zyzanski, Cassel, & Thompson, 1970; Marteau, 1990). Measures that evaluate a specific consultation are considered as health outcomes below.

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Health care cognitions also include assessments of the stressfulness of receiving health care. For example, the Hospital Stress Rating Scale (Volicer & Bohannon, 1975) provides scaled values of the perceived stress associated with a large number of hospital experiences. 8.04.4.2.2 Providers' health care cognitions As for patients' cognitions, health care providers' cognitions have also been investigated using the constructs of social cognition models. For example, their self-efficacy for providing dietary instructions was examined in the context of reducing serum cholesterol (Schucker et al., 1987). Investigators have also investigated their views of their working environment in the context of investigations of the stressfulness of caring for patients (Parkes, 1982). Further, measures of clinicians' attitudes to different patients groups have been developed; for example, St Lawrence, Kelly, Owen, Hogan, and Wilson's (1990) measure of attitudes to AIDS gives an index of favorableness of attitudes and one of willingness to interact with them in a clinical situation. 8.04.4.3 Health Care Outcomes The main health care outcomes are health outcomes and these are measured as measures of illness as described in Section 8.04.3.1. In addition, health care outcomes include measures of health care utilization such as length of stay, number of primary care consultations, or use of medication; these measures can normally be obtained from health care records. For some investigations, these indices will be converted into health care costs, using the techniques of health economics. Delay in receiving health care, such as following MI, or deprivation of health care, especially preventive health care, may also constitute relevant outcomes. Where health care is directed at enhancing adherence with a prescribed regimen of medication or changing health-related behaviors such as diet, adherence to advice may also be an outcome, although it is more commonly seen as part of the process of health care. Where the objective is to impart information, measures of knowledge may constitute an outcome, although one might expect this improved knowledge to impinge on health or illness outcomes or on utilization of health care. An important health care outcome is patient satisfaction. The most commonly used measure of satisfaction with a medical consultation is the Medical Interview Satisfaction Scale (MISS) (Wolf, Putman, James, & Stiles, 1978) which

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assesses affective, behavioral, and cognitive aspects of the consultation. Most measures of patient satisfaction have problems of validity and scaling as responses are skewed towards favorable ratings. Ware and Hays (1988) have found that measures of satisfaction are less skewed and therefore have improved psychometric qualities if respondents are asked to assess the excellence of the medical consultation rather than their satisfaction with the consultation. 8.04.5 MEASURES USED IN ALL CONTEXTS Some measures are used in all contexts in health psychology. 8.04.5.1 Stress, Life Events, and Emotional States Measures of stressors such as Life Events Scales (Holmes & Rahe, 1967), Impact of Events Scales (Horowitz, Wilner, & Alvarez, 1979), perceived stress scales (Cohen et al., 1983), or emotional states (Radloff, 1977; Zigmond & Snaith, 1983) are relevant in all contexts of health psychology. Life events, stress, or emotional states may influence health or the practice of health-related behaviors, may affect the likelihood of disease, may result from illness, and may be a consequence of health care for patients, their families, and health care providers alike. Thus measures that tap the stress process may be relevant for investigations in all areas of health psychology. 8.04.5.1.1 Social deprivation Social deprivation has been shown to be related to the performance of health behaviors, to susceptibility to disease, to recovery from disease, and to receipt of health care (Adler et al., 1994; Carroll, Bennett, & Davey-Smith 1993; Carroll & Davey-Smith, 1997). It has been conceptualized in various ways: educational level, occupational status, financial status, socioeconomic status, residence in a deprived area, etc. Given the pervasiveness of this variable, it is important to ensure that it is measured as well as possible in all investigations. 8.04.5.2 Resources Similarly, the resources that the individual brings to the health, illness, or health-care context are likely to determine how individuals respond. Coping has already been considered in the context of coping with illness, but clearly models of stress postulate that coping responses

are likely to moderate the effects of stress and therefore it is appropriate to measure coping in contexts where stress may be relevant. 8.04.5.2.1 Social support Social support has been conceptualized as directly beneficial, with lack of social support being akin to a stressor or as a resource that buffers the effects of stress (Cohen & Wills, 1985). Social support has been found to predict susceptibility to disease, to moderate the effects of stress, and to influence health and health care outcomes. Social support has been measured in diverse ways and a major distinction is made between measures of the structure or network available to the individual and the quality or satisfaction with the support available; for example, the Social Support Questionnaire (Sarason et al., 1983; Sarason, Sarason, Shearin, & Pierce, 1987) gives measures of amount and satisfaction with social support. Similarly, there are different types of support with the most common distinction being made between emotional and practical support (Power, Champion, & Aris, 1988), but other forms such as esteem, informational, and companionship have also been distinguished (Cohen & Wills, 1985). Such measures are difficult to validate, but correlations with relevant other self-report measures supports the construct validity of the scales. 8.04.5.2.2 Individual differences Individual differences have already been referred to in the context of predicting disease (Section 8.04.2.4) and the confounding effects of negative affectivity in measurement especially in measuring illness (Section 8.04.3.1). Negative affectivity has been measured as trait anxiety (Spielberger, 1983), neuroticism (Eysenck & Eysenck, 1985), or using the scale developed by Watson, Clark, and Tellegen (1988), the Positive and Negative Affect Schedule (PANAS). Positive affectivity has been found to be independent of negative affectivity and may act as a resource in stressful situations. Similarly, other attributes that may serve this protective function are Dispositional Optimism (Scheier & Carver, 1985, 1987) and self-esteem (Rosenberg, 1989). 8.04.6 FUTURE DIRECTIONS This chapter has described the main measurement issues in health psychology. As this is a comparatively new area of research and practice, there are problems as well as solutions in many of

References these areas. However, there is increasing sophistication in measurement in most of the areas covered. In part this comes about simply as a result of increasing experience of the measures, so that gradually issues of reliability, validity, ambiguity, consumer resistance, etc. are identified and tackled. It is to be expected that this process will continue and increasing experience with measures and ever widening areas of application will lead to improved measurement. Measurement in health psychology will also benefit from the changes in technology that will affect most areas of psychology. Increasingly, testing will be computerized and as a result more relevant information will be gathered without overburdening the respondent. Advances in technology will also lead to more information, both behavioral and physiological, being gathered in the client's own environment, rather than the laboratory or clinic. However, it is expected that improvements will increasingly come about because of more fundamental changes in how questions are asked and in the tools used to answer them. As indicated, many measurement problems arise because of a lack of specificity in how theoretical concepts should be operationalized. Although still far from perfect, theories are becoming more specific and directly address issues of operationalization (see Chapter 8.01, this volume). If this trend continues then there should be an increasingly good fit between theory and measure, and also increased comparability across different domains when the same theory is applied to different problems. A tool that is starting to increase our understanding of what we measure (particularly in questionnaire design) and how to improve it is the widening use of complex multivariate methods such as structural equation modeling and the related procedures of confirmatory factor analysis. A central problem in health psychology is the very substantial overlap between concepts; in particular, the real possibility that much of what is measured reflects primarily the pervasive effects of negative affectivity. The application of appropriate statistical techniques should see this issue resolved and is likely to lead to a reduced set of health-related individual difference measures and a better focused series of specific measures.

ACKNOWLEDGMENT Some parts of this chapter have been influenced and informed by the work of John Weinman and Stephen Wright in co-authoring Measures in health psychology: A user's portfolio (Johnston, Wright, & Weinman, 1995).

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return to work and functioning after myocardial infarction. British Medical Journal, 312, 1191±1194. Power, M. J., Champion, L. A., & Aris, S. J. (1988). The development of a measure of social support: The significant others scale (SOS). British Journal of Clinical Psychology, 27, 349±358. Prochaska, T. R., Leventhal, E. A., Leventhal, H., & Keller, M. L. (1985). Health practices and illness cognition in young, middle aged, and elderly adults. Journal of Gerontology, 40, 569±578. Putnam, S. M., Stiles, W. B., Jacob, M. C., & James, S. A. (1985). Patient exposition and physician explanation in initial medical interviews and outcomes of clinic visits. Medical Care, 23, 74±83. Radloff, L. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385±401. Ragland, D. R., & Brand, R. J. (1988). Coronary heart disease mortality in the Western Collaborative Group study: Follow-up experience of 22 years. American Journal of Epidemiology, 127, 462±475. Richards, J. S., Nepomuceno, C., Riles, M., & Suer, Z. (1982). Assessing pain behaviour: The UAB pain behaviour scale. Pain, 14, 393±398. Rosenberg, M. (1989). Society and the adolescent self-image (reprint ed.). Middletown, CT: Wesleyan University Press. Rosenman, R. H., Brand, R. J., Jenkins, C. D., Friedman, M., Straus, R., & Wurm, M. (1975). Coronary heart disease in the Western Collaborative Group study: Final follow-up experience of 81¤2 years. Journal of American Medical Association, 233, 872±877. Rosser, R., & Kind, P. (1978). A scale of valuations of states of illness: Is there a social consensus? International Journal of Epidemiology, 7, 347±358. Roter, D. L., & Hall, J. A. (1989). Studies of doctor± patient interaction. Annual Review of Public Health, 10, 163±200. Rotter, J. B. (1966). Generalised expectancies for internal versus external control of reinforcement. Psychological Monographs, 80(1), 609. Ruta, D. A., Garratt, A. M., Leng, M., Russell, I. T., & MacDonald, L. M. (1994). A new approach to the measurement of quality of life ±± The patient-generated index. Medical Care, 32, 1109±1126. Salmon, P., & Quine, J. (1989). ªPatientsº intentions in primary care: Measurement and preliminary investigation. Psychology and Health, 3, 103±110. Sarason, I. G., Levine, H. M., Basham, R. B., & Sarason, B. R. (1983). Assessing social support: The social Support Questionnaire. Journal of Personality and Social Psychology, 44, 127±139. Sarason, I. G., Sarason, B. R., Shearin, E. N., & Pierce, G. R. (1987). A brief measure of social support: Practical and theoretical implications. Journal of Social and Personal Relationships, 4, 497±510. Scheier, M. F., & Carver, C. S. (1985). Optimism, coping, and health: Assessment and implications of generalized outcome expectancies. Health Psychology, 4, 219±47. Scheier, M. F., & Carver, C. S. (1987). Dispositional optimism and physical well-being: The influence of generalized outcome expectancies on health. Journal of Personality, 55, 169±210. Schoenborn, C. A. (1993). The Alameda studyÐ25 years later. In S. Maes, H. Leventhal, & M. Johnston (Eds.), International Review of Health Psychology (Vol. 2). Chichester, UK: Wiley. Schucker, B., Wittes, J., Cutler, J. A., Bailey, K., Mackintosh, D. R., Gordon, D. J., Haines, C. M., Mattson, M. E., Goor, R. S., & Rifkind, B. M. (1987). Change in physician perspective on cholesterol and heart disease. Journal of the American Medical Association, 258, 3521±3526.

Shaper, A. G., Pocock, S. J., Phillips, A. N., & Walker, M. (1987). A scoring system to identify men at high risk of heart attack. Health Trends, 19, 37±39. Shaper, A. G., Pocock, S. J., Walker, M., Cohen, N. M., Wale, C. J., & Thomson, A. G. (1982). British regional heart study: Cardiovascular risk factors in middle-aged men in 24 towns. British Medical Journal, 283, 179±186. Siegman, A. W., Dembroski, T. M., & Ringel, N. (1987). Components of hostility and the severity of coronary artery disease. Psychosomatic Medicine, 49, 127±135. Smith, M. S., Wallston, K. A., & Smith, C. S. (1995). The development and validation of the perceived health competence scale. Health Education Research, 10, 51±64. Spielberger, C. D. (1983). Manual for the State±Trait Personality Inventory. Palo Alto, CA: Consulting Psychologists Press. St Lawrence, J. S., Kelly, J. A., Owen, A. D., Hogan, I. G., & Wilson, R. A. (1990). Psychologists' attitudes towards AIDS. Psychology and Health, 4, 357±365. Stein, N., Folkman, S., Trabasso, T., & Richards, T. A. (1997). Appraisal and goal processes as predictors of psychological well-being in bereaved caregivers. Journal of Personality and Social Psychology, 72, 872±884. Steptoe, A., & Johnston, D. (1991). Clinical applications of cardiovascular assessment. Psychological Assessment: Journal of Consulting and Clinical Psychology, 3, 337±349. Stiles, W. B. (1989). Evaluating medical interview process components: Null correlations with outcomes may be misleading. Medical Care, 27, 212±220. Turk, D. C., Rudy, T. E., & Salovey, P. (1986). Implicit models of illness. Journal of Behavioral Medicine, 9, 453±474. Vincent, C., Ennis, M., & Audley, R. (1993). Medical accidents. Oxford, UK: Oxford University Press. Volicer, B. J., & Bohannon, M. W. (1975). A hospital stress rating scale. Nursing Research, 24, 352±359. Wallston, K. A. (1992). Hocus-pocus, the focus isn't strictly locus: Rotter's social learning theory modified for health. Cognitive Therapy and Research, 16, 183±199. Wallston, K. A., Stein, M. J., & Smith, C. A. (1994). Form C of MHLC Scales, a condition-specific measure of locus of control. Journal of Personality and Social Assessment, 63, 534±553. Wallston, K. A., Wallston, B. S., & DeVellis, R. (1978). Development of the multidimensional health locus of control (MHLC) scales. Health Education Monographs, 6, 161±170. Ware, J. E., & Hays, R. D. (1988). Methods for measuring patient satisfaction with specific medical encounters. Medical Care, 26, 393±402. Watson, D., Clark, L. A., & Tellegen, A. (1988). Development and validation of brief measures of positive and negative affects: the PANAS scales. Journal of Personality and Social Psychology, 54, 1063±1070. Watson, D., & Pennebaker, J. W. (1989). Health complaints, stress and distress: Exploring the central role of negative affectivity. Psychological Review, 96, 234±254. Watson, M., Greer, S., Young, J., Inayat, G., Burgess, C., & Robertson, B. (1988). Development of a questionnaire measurement of adjustment: The MAC scale. Psychological Medicine, 18, 203±209. Weinberger, D. A., Schwartz, G. E., & Davidson, R. J. (1979). Low-anxious, high-anxious, and repressive coping styles: Psychometric patterns and behavioral and physiological responses to stress. Journal of Abnormal Psychology, 88, 369±380. Weiner, B. (1986). An attributional theory of motivation and emotion. New York: Springer. Weinman, J. A., Petrie, K. J., Moss-Morris, C., & Horne, R. (1996). The illness perception questionnaire: A new method for assessing the cognitive representation of illness. Psychology and Health, 11, 431±445.

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.05 Design Issues for Clinical Research in Health Psychology CAROLYN E. SCHWARTZ Frontier Science & Technology Research Foundation Inc., Chestnut Hill and Harvard Medical School, Boston, MA, USA 8.05.1 INTRODUCTION

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8.05.2 IMPLEMENTING RESEARCH IN A CLINICAL SETTING

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8.05.2.1 Key Considerations for Meaningful Research 138 8.05.2.1.1 Ask a meaningful research question 138 8.05.2.1.2 Have a strong theoretical foundation 138 8.05.2.1.3 Measure appropriate outcomes 138 8.05.2.1.4 Use an appropriate study design 139 8.05.2.1.5 Maintain a high response rate 139 8.05.2.1.6 Maintain complete data 139 8.05.2.1.7 Plan and implement appropriate statistical analysis 140 8.05.2.1.8 Plan study with adequate statistical power 140 8.05.2.1.9 Disseminate findings to appropriate audiences 140 8.05.2.2 Study Designs to Evaluate Clinical Interventions 140 8.05.2.2.1 Needs assessment followed by randomized consent 141 8.05.2.2.2 Three-arm crossover design 145 8.05.2.2.3 Case±control 146 8.05.2.2.4 Solomon four-group pre±post design 146 8.05.2.2.5 Pre±post one-group design 146 8.05.2.3 Selecting the Appropriate Study Design for Evaluating Treatment Intervention Effects: Balancing Research Questions and Assumptions 146 8.05.2.4 Practical Challenges to Implementing Research in a Clinical Setting 147 8.05.2.4.1 Who pays for treatments being evaluated? 147 8.05.2.4.2 Incentives of capitated care 148 8.05.2.4.3 Legal considerations 148 8.05.2.4.4 Unavoidable costs of doing research 149 8.05.2.4.5 Ethical considerations 149 8.05.2.5 An Emerging Theoretical Challenge for Outcomes Research 149 8.05.3 SUMMARY

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8.05.4 REFERENCES

150

This documentation requires relying not only on empirical data to demonstrate the impact of treatment, but also on research designs which are rigorous yet feasible in active clinical settings where funding may not be available to support resource-intensive efforts. Given the

8.05.1 INTRODUCTION With the increasing focus on cost-containment and cost-effectiveness, clinical health psychologists are finding it increasingly necessary to document the value of their services. 137

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emphasis of health psychology on the individual's well-being, it would seem incumbent on such research to link the patient's perspective with objective clinical outcomes as well as cost. Such linkage would also be consistent with the biopsychosocial model which drives much of health psychology theory and practice. The purpose of this chapter will be to discuss key designs, considerations, and challenges of doing outcomes studies of interventions in a clinical health psychology and/or medical setting. Although similar issues will be relevant for health psychology research which is correlative/ predictive in nature, it is beyond the scope of the present chapter. Further information on some of the various concepts and designs discussed can be found in Volume 3. 8.05.2 IMPLEMENTING RESEARCH IN A CLINICAL SETTING 8.05.2.1 Key Considerations for Meaningful Research Active clinical settings present an inviting paradox to the health psychologist. On the one hand, they have the ultimate resource for relevant outcomes research: an ample source of patients. Further, there is an obvious potential to link patient outcome data to clinical and cost data. The challenge of such settings is implementing data collection efforts from patients which are both externally and internally valid, often without financial and personnel resources dedicated to research endeavors. Thus, key considerations in study implementation need to be planned and integrated into the daily clinical routine so that the resulting data yield meaningful and useful glimpses into the patient's experience of illness and its management. The considerations which are crucial to successful study implementation (Table 1) will be discussed briefly. 8.05.2.1.1 Ask a meaningful research question Since any well-done research endeavor is likely to require substantial effort and organization, it would be important that the research be motivated by research questions which are meaningful to patients, providers, payers, and other parties. A clinical setting provides the health psychology researcher with ample opportunities to hear about potentially interesting research issues and to develop hypotheses about what social and behavioral factors would be worthy of exploration in a formal study. By listening to patients, their caregivers, healthcare providers, payers, and others, researchers can develop questions which are responsive to

current forces in healthcare delivery and health enhancement in general. Meaningful research questions can be developed in response to maintaining an open ear when interacting with patients and others in the clinical setting. Other more formal approaches might include focus groups (Morgan, 1988) and semistructured individual interviews with people with various relevant perspectives. 8.05.2.1.2 Have a strong theoretical foundation A reasonable background of both knowledge and theory would be necessary conditions for a research study to be worth the effort and resources it will cost. Such a background can be gleaned by consulting with health psychologists who have a current and broad foundational understanding of models of change or growth from fields such as health education, public health, clinical and health psychology, and psychiatry. These models would provide a necessary foundation for hypothesizing what psychosocial and medical factors would be relevant and thus should be measured (Slife & Williams, 1997). This understanding might be supplemented with recent literature reviews as well as searches of computer databases of medical and psychological publications. 8.05.2.1.3 Measure appropriate outcomes In beginning to plan a study with a strong theoretical foundation, one must select relevant outcomes. This selection process should also be informed by clinical acumen and patient experience. Focus groups (Morgan, 1988) with providers and patients can be helpful in identifying germane outcomes. This method usually identifies relevant groups whose perspective should be considered and begins with a series of open-ended questions. The underlying theme of focus groups is to expand the realm of possibilities rather than to contract them. One continues focus groups and various provider and patient subgroups until the information gleaned becomes redundant (Morgan, 1988). Focus groups can also be useful for pretesting questionnaire packets and for selecting one questionnaire among many which ostensibly measure the same thing. For example, there are numerous measures of functional status which might be used in an outcomes study. In the pilottesting phase of a study evaluating the impact of two psychosocial interventions (Schwartz, 1994; Schwartz & Rogers, 1994; Schwartz & Sprangers, under review), Schwartz pretested a set of functional status measures, and asked chronically ill patients to track their mood and energy level before and after completing each measure.

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Table 1 Key considerations for successful study implementation. Consideration

Method for achieving

a. Meaningful research question

Listening to patients and clinicians, literature review, attenting to regulatory forces in health care delivery Literature review; expert consultation Focus groups Match with research question and assumptions (see Table 2) Total Design Method Telephone follow-up Involvement of statistician when planning study Involvement of statistician when planning study Peer-review journals; patient education; managed care journals

b. Theory-based c. Appropriate outcomes d. Appropriate study design e. Response rate f. Complete data g. Appropriate analysis h. Statistical power i. Dissemination to appropriate audiences

The measure which was selected finally was the one which was the least depressing and was rated by patients as asking questions they deemed pertinent to their physical well-being. 8.05.2.1.4 Use an appropriate study design Although collecting data from consecutive patients who come into a clinic might be considered research by some people, most professionals would agree that studies must be designed before they are implemented if they are to result in data worth analyzing. It is believed that study design is a crucial stumbling block for many aspiring researchers, and an entire section of this chapter has been devoted to describing five study design options which can be implemented feasibly in busy clinical settings (see below).

and invite them to participate in a given research study. He outlines the information which should be included in each paragraph, the letterhead parameters which have been documented to enhance response rate, the color ink which should be used to sign the letter, whose names should grace the letter, and the way in which the letter should be folded. Dillman (1978) provides a similar level of detail regarding preparation of the questionnaire booklets. Although this level of detail might seem unnecessary, he documents the increased percentage of response rate which results from their consideration. If one follows Dillman's protocol, one can be assured of a 90% response rate. Indeed, following these steps very carefully has allowed our group to maintain a high response rate in a number of studies by mail.

8.05.2.1.6 Maintain complete data 8.05.2.1.5 Maintain a high response rate Ascertaining the generalizability of the study results will be an important consideration in assessing the impact that it may have. Studies which lose a large proportion of eligible participants are necessarily suspect of suffering from selection bias which may hamper the investigators' ability to make any valid conclusions about the treatments being evaluated. Further, substantial drop-out rates can result in more time required for accrual and more costly resources required to implement studies. Thus, planning carefully to maximize response rate would be a necessary condition to successful research. In his Total Design Method, Dillman (1978) provides an accessible and feasible method which integrates the large literature on survey research to specific steps for assuring a high response rate. These steps can be easily implemented by the clinical researcher. For example, Dillman provides details regarding the letter which is sent to patients to inform them

Missing data can pose significant problems to data analysis and interpretation. Most selfreport questionnaires require data on at least 75% of the items within a subscale to allow imputation of a subscale score. Similarly, most statistical methods require complete data to include a participant's data in the analysis. Although some statistical methods can accommodate missing data (e.g., growth curve; Francis, Fletcher, Stuebing, Davidson, & Thompson, 1991), the meaning of the missingness can be an important consideration. For example, if data are ªinformedº missing, then their absence is indicative of some notable cause, such as dying during the course of the study. If they drop out due to health problems or access to care, then their missing data would also be informative. Thus, it is incumbent on the health psychology investigator to maintain complete data as much as possible, and to document reasons for drop-outs and missing data. Developing a good rapport with study participants can be crucial for attaining complete

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data. This rapport may be developed initially in an intake interview, and maintained via telephone follow-up. For example, if a participant has not returned a questionnaire packet within two weeks of mailing it out, the investigator would be well-advised to inquire via telephone and to negotiate a date by which the participant is able to return the completed packet. Similarly, if the packet is returned but there are items which have not been answered, a respectful phone call can be beneficial. In general, it has been found that such calls are perceived by patients to be indicative of the seriousness and meaningfulness of the research endeavor, and they are cooperative in answering the missing items. If the patient purposefully left the item blank, then the investigator should respect the confidentiality of the patient, code the item as ªrefused,º and not press the participant for an answer.

8.05.2.1.7 Plan and implement appropriate statistical analysis A well-planned investigation would include planning the statistical analysis before the study is implemented. Such intention would ensure that the appropriate data (e.g., covariates, predictors, and outcomes) are collected, and that the research questions will be addressed adequately by the statistical analysis. It is recommended to include on the research team a professional who has expertise in statistical analysis. This person's expertise should be included at the planning stage of any study.

8.05.2.1.8 Plan study with adequate statistical power By planning the statistical analysis when the study's research questions are being defined, the thoughtful investigator paves the way for adequate statistical power. Simply stated, an investigator's power to detect meaningful differences depends on three parameters: the sample size, the magnitude of the effect which is deemed clinically significant, and the inherent variability of the outcome measure. The power curve is exponential, requiring few subjects per group for large effects, and large numbers of subjects per group for moderate and small effects (Figure 1) (Cohen, 1988; Pocock, 1983). It is recommended that power calculation be used during the planning phases of a study by a professional who has expertise in statistical analysis, or with the aid of software designed for behavioral science studies (e.g., Bornstein & Cohen, 1988).

8.05.2.1.9 Disseminate findings to appropriate audiences One of the most important products of a research study is developing vehicles for disseminating study results. Such dissemination should take place through peer-reviewed professional journals, a mechanism which can enhance the state of knowledge in the broader arena. Other mechanisms exist which can influence other highly relevant audiences. For example, there are private foundations which focus on a specific disease and which would provide conduits by which investigators might implement patient educational programs based on the results of their research. There might also be access to other healthcare providers and payers by publishing jargon-free articles in managed care journals and health management organizational newsletters. The more mechanisms by which access to study results can be provided, the more influential such results can be. Even negative (i.e., nonsignificant) findings can be informative, so investigators are to be encouraged to disseminate study results in all cases. 8.05.2.2 Study Designs to Evaluate Clinical Interventions Thus far, important considerations in successful study implementation to enhance the external and internal validity of the research endeavor have been reviewed. Although the clinical setting does not necessarily pose challenges to assessing needs or concerns of patient populations, many important research questions may be more focused on how efficacious and cost-effective an intervention may be. Despite the above suggestions, the clinical setting may pose challenges to implementing the standard randomized controlled trial. In this design, eligible patients are approached and asked to participate in a trial in which they will be randomized to one of two treatment arms. Study designs which maximize statistical power are placebo-controlled randomized trials with longitudinal follow-up (Kraemer & Thiemann, 1989). Given the ethical, theoretical, and practical problems with placebo-controlled studies (Schwartz, Chesney, Irvine, & Keefe, 1997), the modern investigator often may be forced to consider statistical power issues in the context of intervention studies of two active treatments, such as standard care as compared to an experimental treatment or psychological adjunct (Figure 2(a)). The more one controls for nonspecific effects, the smaller the anticipated effect size and hence the larger the sample size requirements (Kazdin & Bass,

141

Number of Patients per Treatment Arm

Implementing Research in a Clinical Setting

400

300 Parallel design 200 Cross over design 100

0.8

0.7

0.6

0.5

0.4

0.3 Moderate

Large

0.2

0.1 Small

Effect Size Figure 1 Statistical power curves for parallel design and crossover trial. This plot shows how the sample size requirements for a study increase with the decreasing magnitude of the anticipated effect size. Using a crossover design can reduce the required sample to approximately one-quarter the number of subjects as a parallel-arm study for the same power (Fleiss, 1986). This estimation assumes that the within-subject variability is equal to the between-subject variability.

1989). Similarly, the more the intervention is tailored to the individual patient, the more heterogeneous the resulting comparison groups. This heterogeneity also reduces the statistical power due to the increased variability in the outcomes. The increased cost and challenge of implementing such a large study might lead to considering the several design alternatives outlined below. 8.05.2.2.1 Needs assessment followed by randomized consent An alternative to the standard randomized controlled trial is the randomized consent design (Zelen, 1979, 1990). In this design, eligible patients are randomized prior to obtaining consent, and consent is obtained for participation in that arm to which the patient has been randomized (Figure 2(b)). This design might be beneficial in a clinical setting where the efficacy or cost-effectiveness of an adjunctive treatment which is a reimbursable clinical service is evaluated. In this case, ªreimbursableº refers to the idea that a third party (i.e., insurance company) would deem the service worthy of coverage by the individual's healthcare insurance. Such a concern is particularly relevant in countries which do not have

universal healthcare coverage (e.g., the USA). By using a randomized design, the statistical comparability of the two treatment arms is ensured, thereby reducing the systematic error encountered in more quasi-experimental designs. The primary caveat of the randomized consent design is that it is feasible only if participants will be highly likely to accept the treatment to which they have been randomized. This caveat is due to the intention-to-treat principle of randomized trials: that is, that patient data are analyzed according to the intervention to which they were assigned, regardless of how much of the treatment they actually received. This principle ensures that the more consistent the efficacy (i.e., effectiveness and feasibility) of an intervention, the more ecologically valid the representation of the realworld impact it is likely to have. To ensure that the participants will be highly likely to accept the treatment to which they have been randomized, implementing a needs assessment survey of clinic patients is suggested. This survey can be used to help determine the psychosocial needs and meaningful interventions for a given target population (Edwards & White, 1987). Data from such surveys can also be used to evaluate the sociodemographic and medical correlates of expressed needs (Kraft,

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Design Issues for Clinical Research in Health Psychology

a. Standard Randomized Controlled Trial Data Collection (post)

Data Collection (pre) R A N D O M I Z E

Yes

PATIENT ELIGIBLE

Informed Consent

b. Randomized Consent Design

PATIENT ELIGIBLE

Treatment B

Dropped

No

NEEDS ASSESSMENT SURVEY

Treatment A

Data Collection (pre)

R A N D O M I Z E

Seek consent for observational study

Seek consent: Will you accept treatment A?

Data Collection (post)

Observation (control)

No

Dropped

Yes

Treatment A

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Implementing Research in a Clinical Setting

c. Three-arm Crossover Design

Informed Consent

R A N D O M I Z E

}

PATIENT ELIGIBLE

Data Data Data Data Collection Collection Collection Collection (pre) (post) (post) (post)

a arm

arm b arm

Optional Washout Period

}

c

Time

Wait-list or standard therapy control Active intervention tailored to individual patient’s need

d. Case-control Design

Data Collection (post)

Yes PATIENT ELIGIBLE

Informed Consent

Patients matched by relevant sociodemographic and medical characteristics

Exposure to Intervention? No

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Design Issues for Clinical Research in Health Psychology

e. Four-arm Pre-Post Design

PATIENT ELIGIBLE

Informed Consent

Data Data Collection Collection (post) (post)

R A N D O M I Z E

f. Pre-post One Group Design

PATIENT ELIGIBLE

Intervention

X

X

No Intervention

X

X

Intervention

X

No Intervention

X

Data Collection (post)

Data Collection (post)

Yes

Treatment A

No

Dropped

Informed Consent

Figure 2 Research designs which would be feasible to implement in an active clinical setting. (a) Schema for a standard randomized controlled trial for the sake of comparison with the subsequent designs. (b) Schema for a needs assessment survey followed by a randomized consent design. (c) Schema for the three-arm crossover design, which allows one to evaluate the impact of duration of treatment on outcomes. (d) Case±control design which would require matching patients on relevant sociodemographic and medical characteristics. (e) The Solomon four-arm pre±post design controls for maturation effects and investigates the impact of salience cuing on treatment outcomes. (f) Schema for a pre±post one-group design which is the simplest and least expensive study to implement. This study allows one to evaluate patient factors associated with better treatment outcomes.

Implementing Research in a Clinical Setting Freal, & Coryell, 1986). By beginning with a needs assessment survey, a needy target population can be identified for a specific trial who would be likely to want the intervention(s) being evaluated (Figure 2(b)). 8.05.2.2.2 Three-arm crossover design Given the difficulty in randomizing patients to a placebo±control condition, Schwartz et al. (1996) have proposed a randomized three-arm variation of a standard crossover trial. This design allows evaluation of treatment, order, and dose±response effects. In the first two arms, patients would receive active treatment followed by a control condition (arm ªaº in Figure 2c), or vice versa (arm ªbº in Figure 2(c)). The patients randomized to the third arm (arm ªcº in Figure 2(c)) would receive the active treatment for the entire duration of the other treatment arms (i.e., treatment and control). This arm would allow the investigator to address the longer-term effect of the intervention, without dramatically increasing the sample size. The control condition in the first two arms (i.e., arms ªaº and ªbº in Figure 2(c)) would be a wait-list which could involve standard care or no treatment. The decision about whether to use a standard care or no-treatment wait-list control would depend on the usual treatment approach for the study population and symptom complex. If there were a standard treatment for the symptom complex (e.g., pharmaceuticals, support groups, antidepressants, etc.), then the wait-list patients would have normal access to them. If the syndrome is one that does not interfere significantly with daily life and is not threatening to health then a no-treatment control would be appropriate. If the trial population is in crisis, then the control group would get standard care. Since crossover trials compare the impact of an active treatment to standard care and/or wait list control, the designs avoid the need to create a placebo±control. Thus, the three-arm crossover similarly minimizes the ethical dilemma by providing treatment to all patients. The enhanced statistical efficiency of the crossover design would allow the use of individuallytailored interventions, and thus increase the clinical validity of the trial results. Such treatment protocol heterogeneity would normally reduce the statistical power of the trial and lead to an expensive increase in the number of patients required to detect a difference between treatments. However, crossover designs use patients as their own controls and are thereby statistically efficient: they require approximately one quarter the number of

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patients per study arm as those required for a standard parallel design (Figure 1, Fleiss, 1986). This estimation assumes that the within-subject is equal to the between-subject variability. This increased power would offset the reduced statistical power of the protocol heterogeneity. The proposed three-arm crossover design allows for an examination of dose±response relationships, whereas the standard crossover trial limits the investigator's ability to learn about the effects of longer-term intervention. The three arms provide information about the effects of shorter-term interventions (i.e., arm ªaº or ªbº) and about longer-term interventions (i.e., arm ªcº). The investigator might seek to evaluate the maintenance of effects over time (i.e., carryover effects) by shorter-term interventions using data from arm ªaº or design the study to include a washout period between treatment and follow-up so that the follow-up could be a clear no-treatment comparison condition. Consequently, treatment outcomes should be measured pre- and postintervention as well as before and after the washout and notreatment periods. Thus, the proposed design responds to the standard problem of crossover designs, that of not allowing the investigator to examine whether continued adherence to an intervention produces benefits over a long period of time or follow-up. This use of the three-arm crossover trial data is similar to an approach used by Thoresen (1991) to evaluate the long-term impact of a behavioral intervention for postinfarction patients who had participated in a crossover trial. They were able to show that the larger the ªdoseº received of the behavioral intervention, the greater behavior change and health benefit. Finally, the three-arm crossover design can allow the investigator to evaluate order effects, which may prove illuminating for hypothesis generation. For example, assume that condition ªaº is nonspecific support (e.g., social support), condition ªbº is coping effectiveness training (i.e., the experimental intervention), and condition ªcº is two cycles of the coping effectiveness training. The design is: AB, BA, and BB. Suppose that analysis of the results revealed that AB was better than BA and BB. The interpretation, framed as hypothesis generation, might be that social support prepared patients for the coping skills training, whereas coping skills training given first inadvertently increased resistance in some patients. Therefore, this three-arm crossover design could identify possible timing or staging effects of the different therapies. The appropriateness of the three-arm crossover trial will depend on the objectives of the research. If the intervention is not expected to

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have extended carryover effects (e.g., acupuncture, massage), then no washout period will be required. If the intervention is expected to have brief carryover effects (e.g., pharmacotherapy), then a brief washout period may be necessary. If the intervention is a cognitive-behavioral treatment for stress management, then a washout period may not be feasible because it may not be possible to remove the effects of the exposure. If the objective is to study carryover effects, then a standard parallel-arm design would be appropriate (i.e., treatment vs. control with no crossover). For example, the experimental treatment, best standard care, and a wait-list control or usual care (if the latter is not the same as the comparison condition) could be compared. The latter design will be expensive to implement due to the sample size requirements in parallel-arm trials comparing active treatments (i.e., small effects sizes, see Figure 1). Further, it may not be feasible among proactive patients who refuse to participate if randomized to a wait-list control. The three-arm crossover design is a feasible and appropriate design if carryover effects are not the primary endpoints. It represents one of several possible approaches to design. 8.05.2.2.3 Case±control Borrowed from the field of epidemiology, the case±control design can be useful for health psychology research on interventions where some naturalistic assignment has occurred. In this design, patients are naturalistically ªexposedº to one of the interventions under study and followed over time to determine the effect of the intervention (Figure 2(d)). This design might be used in cases where similar patient groups at difference sites receive distinct interventions. For example, if two sites of a managed care organization had similar patient populations in a diabetes clinic, and only one of the clinics implemented a patient education self-management program. Patients from both sites could be followed over time to evaluate the patient education program. 8.05.2.2.4 Solomon four-group pre±post design This design allows the explicit consideration of external validity factors (Campbell, 1963). By paralleling a standard pretest±post-test control group design with experimental and control groups lacking the pretest (Figure 2(e)), the main effects of both the intervention and testing can be evaluated, as well as the interaction of the intervention and testing. This design consequently allows for an investigation of the impact of salience cuing on treatment outcomes. For

example, measuring an outcome requires asking patients to self-report about that outcome. Thus the outcome's salience may be increased as a function of study participation, thereby leading to a shift in internal standards (i.e., response shift as described subsequently) on behalf of study participants. The Solomon four-group design would provide a vehicle for examining this aspect of response shift in clinical health psychology research. 8.05.2.2.5 Pre±post one-group design Many investigators may not feel that they have the expertise to implement studies with more complex designs. Consequently, they rely on recruiting consecutive patients for treatment evaluation studies and asking patients to selfreport on various quality-of-life outcomes before and after the intervention (Figure 2(f)). Because there is no comparison group, such data are not appropriate for testing the effectiveness of an intervention. However, this design can facilitate correlative or predictive studies in health psychology which seek to understand which factors are associated with better outcomes. One example of this use of the pre±post one-group design was a study done by Mohr et al. (1996) in which they examined how patient expectations were related to treatment compliance among a cohort of multiple sclerosis patients. They found that adverse events and unrealistic expectations were important predictors of treatment compliance in 86% of patients initiating an immunomodulating therapy. This use of the pre±post one-group design exemplifies how clinically relevant information can be gleaned with this simple and feasible research design. 8.05.2.3 Selecting the Appropriate Study Design for Evaluating Treatment Intervention Effects: Balancing Research Questions and Assumptions The above five study designs are reasonable alternatives to randomized controlled trials for health psychology research. However, selecting the appropriate design will require balancing the research question being asked as well as the assumptions on which each design relies (Table 2). Although the first five study designs address the relative effectiveness of treatment A vs. treatment B, they differ in their assumptions about patient characteristics. For example, the standard randomized controlled trial assumes that patients will accept randomization to the control group, and will not seek alternative and similar treatments to the experimental group

Implementing Research in a Clinical Setting due to resentful demoralization (Cook & Campbell, 1978). In contrast, the randomized consent design only asks that patients accept the singular treatment option to which they have already been randomized. Thus, the former may take longer to accrue participants if the control group is obvious. On the other hand, the randomized consent design is only feasible if the researcher is fairly certain that patients will be likely to accept the treatment option to which they have been assigned. A common assumption of randomized designs is that the random allocation method results in groups which are similar on sociodemographic and medical characteristics. As this is not always the case, stratification may be necessary for the crucial characteristics. Covariate adjustment can be done in the analysis phase for other pretreatment differences which occurred despite randomization. Although covariate adjustment can be done in both case±control and pre±post one-group designs, the former would benefit from matching study participants on relevant sociodemographic and medical factors to enhance the comparability of the two groups. This matching will prevent confounding due to differential representation of various prognoses by study arms, a design problem which cannot be resolved with covariate adjustment. One example of such a problem would be comparing the impact of a behavioral intervention on people with epilepsy, and not matching for location and focality of brain lesions. It is well-known that patients with focal temporal lesions are more likely to be considered as candidates for neurosurgery (Lechtenberg, 1990), and hence have a better psychosocial prognosis than those with diffuse lesions in other parts of the brain. Not matching on such important prognostic factors can lead to unnecessary confounding and perhaps even selection bias. Given the similarities in research questions and assumptions across the several designs suggested, clinical investigators may need to base their research design selection on characteristics of the context in which they would like to initiate the research study. For example, randomized trials may not be feasible in settings in which there is no support staff to oversee the blind allocation of treatment or vigilant followup. In these contexts, the case±control or pre±post one-group designs may be optimal as they would allow one to dovetail data collection efforts to standard clinic visits and can address relevant, albeit limited, questions about treatment outcomes. The clinical investigator therefore has several design options which can facilitate outcomes research despite limited resources. Selecting an appropriate

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design will require the careful balance of the research question one seeks to ask, the assumptions one is comfortable making, and the constraints imposed by the clinical context.

8.05.2.4 Practical Challenges to Implementing Research in a Clinical Setting Once an appropriate design has been selected, clinical investigators may wish to begin collecting data immediately. However, there are other practical challenges which they may confront. These challenges reflect the emerging financial and legal considerations which are playing an increasing role in healthcare. Highlighting a few of these considerations should make it easier for potential investigators to prepare for them.

8.05.2.4.1 Who pays for treatments being evaluated? The appeal of implementing research in a clinical setting is partially founded on the assumption that the cost of such research can be reduced by having it dovetail with standard clinical work. Indeed the goal of outcomes research is to integrate an evaluation process into standard clinical practice and to provide relevant and timely feedback to clinicians so that they might improve the quality of care provided. However, many healthcare payers (e.g., insurance companies) may consider that such attempts to evaluate clinical practice indicate that the practice is ªexperimentalº and therefore not reimbursable. Consequently, the investigator is faced with the following dilemma: if the payers think it is research, they may not cover it. Indeed studies of treatments which are already standard clinical practice might be more analogous to Phase IV (i.e., postmarketing) clinical trials than to Phase III (i.e., effectiveness) clinical trials. This tautological problem within outcomes research may be solved in various ways, depending on the resources available to the institution. For example, some institutions may opt for internal funding of clinical work being investigated, thereby not seeking reimbursement for clinical services. Others may opt for the pre±post onegroup design which may only require collecting data from patients during standard clinic visits. Others may hire independent private organizations to manage the data collection effort so that the apparent investigators are not obviously linked to the clinical facility. Whatever the solution, it will be advantageous for the clinical investigator to consider this tautological problem before initiating any research study.

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Table 2 Feasible clinical health psychology research study designs: research questions and assumptions. Study design

Research question

Assumption

a. Standard randomized controlled trial

Is treatment A better than treatment B on x outcome(s)?

b. Randomized consent

Is treatment A better than treatment B on x outcome(s)?

c. Three-arm crossover

i. Is treatment A better than treatment B on x outcome(s)? ii. Does duration of treatment influence outcome(s)? Is treatment A better than treatment B on x outcome(s)?

Patients will accept randomization to a control group; randomization takes care of pretreatment group differences Patients will be likely to accept the treatment to which they have been randomized Washout period duration is known

d. Case±control e. Solomon four-group pre±post

f. Pre±post one-group

Is treatment A better than treatment B on x outcome(s)? Does measurement cue patients about salience and thereby influence treatment outcomes? What factors are associated with better outcome(s) of treatment A?

Groups are matched on relevant sociodemographic and medical variables All groups are similar at baseline on outcome variables

Relevant factors are measured

8.05.2.4.2 Incentives of capitated care

8.05.2.4.3 Legal considerations

Since health care becomes increasingly controlled by managed care, the incentives of this system must be considered by clinical investigators. The idea behind capitated care is that the provider is paid in advance for all medical care on a per patient (i.e., capitated) basis. Unlike the fee-for-service arrangement where the incentive is to provide more medical services, capitated care presents an incentive to minimize the medical services provided so that the cost per patient is reduced. Given this incentive structure, research which seeks to evaluate adjunctive treatments such as behavioral medicine interventions may face additional barriers. Such programs may reduce unnecessary medical care use in the future by attending to current psychological morbidities. These morbidities can lead to increased healthcare utilization (Browne, Aprin, Corey, Fitch, & Gafini, 1990), but treating them with adjunctive behavioral interventions might lead to a cost offset in the longer term (Friedman, Sobel, Myers, Candill, & Benson, 1995). However, managed care providers may be focused on short-term savings, while psychological interventions may appear to increase rather than reduce healthcare costs. Investigators may need to consider that short-term increases in utilization may appear to work against the incentives of the system. Consequently short- and longterm costs and outcomes should be addressed in clinical research studies.

Although informed consent has become an assumed step in any research process, there are still legal issues which may arise due to an increasingly fearful and litigious culture. Legal issues may play a larger role as clinical investigators are required to seek consultations from medical attorneys rather than focusing on the best research design to ask the research question. A real-life example of such a situation was one where researchers sought to evaluate the predictive value of inability to answer a standard quality-of-life questionnaire, the SF36 (Ware, Snow, Kosinski, & Gandek, 1993). Their original design was a standard case± control design which followed elderly patients in a primary care setting. Eligible participants were to be those patients who were unable to complete the questionnaire without missing data. Half of the patients were to be observed without additional intervention, and half were to be telephoned monthly by a clinical nurse to ensure that they adhered to treatment regimens and/or saw a physician if needed. After consulting with lawyers, however, the investigators were informed that such a design put the clinic at risk of malpractice: if one of the control patients died and a relative learned that the patient had participated in this study, the relative might sue the clinic for withholding treatment even though the efficacy of the treatment was exactly the focus of the investigation. The researchers were advised to change

Implementing Research in a Clinical Setting

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their design so that half the patients got a preand post-test along with the telephone intervention. The other half provided data only at the post-test. Clearly such a design limited the investigatorsº ability to adjust statistically for baseline health status. However, the fear of possible litigation over an unproven treatment dominated the design selection. Future clinical investigators might be wise to consider the legal perspective, and to ensure informed consent so that scientific rigor does not lose priority to litigious concerns.

study ends, it is incumbent upon the investigator to make the implications of treatment termination explicit. Further, the investigator may need to provide access to social service providers who can direct outreach after study termination and identify resources which would be otherwise unavailable to patients. Such considerations may not be apparent in the initial review by the committee for the protection of human subjects and may arise in the course of co-investigator meetings to clarify study procedures.

8.05.2.4.4 Unavoidable costs of doing research

8.05.2.5 An Emerging Theoretical Challenge for Outcomes Research

No matter how much a clinical research study attempts to dovetail with standard clinical care, there are some costs which cannot be ignored. For a study to be rigorous and to maintain a reasonable response rate, some staff time will need to be devoted to the initial training as well as for implementing the Total Design Method (Dillman, 1978). Further, it may be necessary to pay for some of the clinicians' time for aspects of the research which do not strictly involve delivering clinical care. For example, some time will be needed for occasional meetings to confirm that the study procedures are clear and implemented correctly, for interpreting results of the data analysis, and for completing manuscript preparation for peer review. Finally, for studies implemented by mail or by telephone there will be costs associated with pretesting instruments, printing, postage, and telephone follow-up. Although these costs are minimal, there are necessary components of the research endeavor and should be considered before beginning the study. 8.05.2.4.5 Ethical considerations The integration into any research endeavor of review by the appropriate committee for the protection of human subjects and informed consent have become crucial steps for maintaining ethically sound research. Nonetheless, some ethical concerns may be raised which are beyond the scope of such processes, especially as research efforts seek to extend clinical service evaluations to lower income patient populations. One example would be research which seeks to evaluate differences in clinical effectiveness of a behavioral medicine intervention on higher vs. lower income patients. Although standard informed consent procedures might list the risks and benefits of such benign interventions, they would be unlikely to highlight the impact of treatment termination. When the referent patient population is unlikely to be able to afford continuing the treatment after the

An emerging area of interest and work by researchers from a broad range of disciplines is focused on understanding ªresponse shift phenomenon.º This term refers to the idea that individuals facing a significant health challenge may experience a change in internal standards, values and the meaning of quality of life (Breetvelt and VanDam, 1991; Schwartz & Sprangers, under review; Sprangers 1988, 1996; Sprangers et al., 1995; Sprangers, Rogemuller, VanDen Berk, Bowen, & VanDam, 1994). As both Heraclitus and Alphonse Karr noted long ago, change is a constant in life; yet there is an underlying and undeniable structure to personality (Funder & Colvin, 1991). Quality-of-life investigators have documented a type of inconsistency in self-reported health outcomes which is likely to have important implications for evaluating the impact of cognitively-based interventions. Acute health-state changes may have an impact on psychological morbidity, followed by accommodation and adaptation to the functional limitations imposed by the illness. This shift explains how an individual's life satisfaction may not be directly related to their functional status. Bach and Tilton (1994) found, for example, that individuals with tetraplegia who were dependent on a ventilator reported higher life satisfaction than tetraplegics who were able to breathe independently. Individuals facing a significant health challenge may scale down their expectations of health, may be more appreciative of the social resources which support their daily living activities, and may be making significant adjustments in the importance of life domains (Bach & Tilton, 1994). These individual values may also play an important role in determining the complex inter-relationships underlying quality of life. For example, satisfaction with one's functional status has been found to be related to psychological well-being only among those

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individuals who viewed the abilities being evaluated as very important (Blalock, B. M. DeVellis, R. F. DeVellis, & Santer 1993). Interventions which improve social support may affect patient values, priorities, and appreciation of the resources they have (Norman & Parker, 1996). These social support interventions may allow them to maximize their quality of life despite important physical setbacks. Thus, it may be hard to differentiate change due to active interventions and truly improved functional status from change due to patient accommodation to level of function. Response shift represents a challenge to health researchers. It lies under the surface of measurement, camouflaged by an apparent lack of change in treatment outcomes. Intra-individual shifts in referents and priorities may mediate both well-being and functional status (Sprangers & Schwartz, under review). Understanding the predictive significance of this intra-individual variability is at the heart of meaningful outcomes measurement, and has the potential to lead to a paradigm shift in the many fields of investigation that rely on patient self-report. 8.05.3 SUMMARY This chapter reviewed various design issues which might facilitate implementing health psychology intervention research in an active clinical setting. Key considerations were described to improve the ability to detect treatment effects, and several research design options were presented to highlight how one's assumptions and research questions determine the optimal research design. Finally, response shift phenomenon was discussed to emphasize how internal standards, values, and an individual's concept of quality of life can be a dynamic process which is under the surface of current measurement techniques. This emerging construct should be considered in future clinical health psychology research, so that the full impact of interventions is more likely to be revealed in clinical research. ACKNOWLEDGMENTS The author would like to thank Elissa Laitin for her assistance in manuscript preparation. The project was supported by grant number R01 HS08582-01A1 from the agency for Health Care Policy and Research to Dr. Schwartz. 8.05.4 REFERENCES Bach, J. R., & Tilton, M. C. (1994). Life satisfaction and well-being measures in ventilator assisted individuals with traumatic tetraplegia. Archives of Physical Medicine

& Rehabilitation, 75, 626±632. Blalock, S. J., DeVellis, B. M., DeVellis, R. F., & Santer, S. C. (1997). Self-evaluation processes and adjustment to rheumatoid arthritis. Arthritis & Rheumatism, 31, 1245±1251. Bornstein, M., & Cohen, J. (1988). Statistical Power Analysis: A Computer Program. Hillsdale, NJ: LEA Software and Alternative Media. Breetvelt, I. S., & VanDam, F. S. (1991) Underreporting by cancer patients: The case of response-shift. Social Science and Medicine, 32, 981±987. Browne, G. B., Arpin, K., Corey. P., Fitch, M., & Gafni, A. (1990) Individual correlates of health service utilization and the cost of poor adjustment to chronic illness. Medical Care, 28, 43±58. Campbell, D. T. (1963) Experimental and quasi-experimental designs for research. Chicago: Rand McNally. Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.). Hillsdale, NJ: Lawrence Erlbaum. Cook, T. D., & Campbell, D. T. (1979). Quasi-experimentation: Design and analysis issues for field settings. Boston: Houghton Mifflin. Dillman, D. A. (1978). Mail and telephone surveys: The total design method. New York: Wiley. Edwards, M., & White, N. (1987). A cancer patient survey to help determine psychosocial needs, design, and implement meaningful interventions. Advances in Cancer ControlÐ15 Years of Progress, 248, 153±180. Francis, D. J., Fletcher, J. M., Stuebing, K. K., Davidson, K. C., & Thompson, N. M. (1991). Analysis of change: Modeling individual growth. Journal of Consulting and Clinical Psychology, 59, 27±37. Fleiss, J. L. (1986). The design and analysis of clinical experiments. New York: Wiley. Friedman, R., Sobel, D., Myers, P., Caudill, M., & Benson, H. (1995). Behavioral medicine, clinical health psychology, and cost offset. Health Psychology, 14, 509±518. Funder, D. C., & Colvin, C. R. (1991). Explorations in behavioral consistency: Properties of persons, situations, and behaviors. Journal of Personality and Social Psychology, 60(5), 773±794. Kazdin, A. E., & Bass, D. (1989). Power to detect differences between alternative treatments in comparative psychotherapy outcome research. Journal of Consulting and Clinical Psychology, 57, 138±147. Kraemer, H. C., & Thiemann, S. (1989) A strategy to use soft data effectively in randomized controlled clinical trials. Journal of Consulting and Clinical Psychology, 57, 148±154. Kraft, G. H., Freal, J. E., & Coryell, J. K. (1986). Disability, disease duration, and rehabilitation service needs in multiple sclerosis: Patient perspectives. Archives of Physical Medicine & Rehabilitation, 67, 164±168. Lechtenberg, R. (1990). Seizure recognition and treatment. New York: Churchill Livingstone. Mohr, D. C., Goodkin, D. E., Gatto, N., Neilley, L. K., Griffen, C., Likosky, W., & Stiebling, B. (1996). Therapeutic expectations of patients with multiple sclerosis upon initiating interferon beta 1-b: Relationship to adherence to treatment. Multiple Sclerosis, 2, 222±226. Morgan, D. L. (1988). Focus groups as qualitative research. Newbury Park, CA: Sage. Norman, P., & Parker, S. (1996). The interpretation of change in verbal reports: Implications for health psychology. Psychology and Health, 11, 301±314. Pocock, S. J. (1983). Clinical trials: A practical approach (p. 182). New York: Wiley. Schwartz, C. E. (1994, July). How do psychosocial interventions influence functional status in multiple sclerosis? Results of a randomized trial [Abstract]. Proceedings of the Third International Congress of Behavioral Medicine, Amsterdam.

References Schwartz, C. E. (under review). The psychosocial impact of two social support interventions: Results of a randomized trial. Schwartz, C. E., Chesney, M. A., Irvine, M. J., & Keefe, F. J. (1997). The control group dilemma in clinical research: Applications for psychosocial and behavioral medicine trials. Psychosomatic Medicine, 59, 362±371. Schwartz, C. E., & Rogers, M. (1994). Designing a psychosocial intervention to teach coping flexibility. Rehabilitation Psychology, 39(1), 57±72. Schwartz, C. E., & Sprangers, M. (under review). Methodological approaches for assessing response shift in longitudinal quality of life research. Slife, B. D., & Williams, R. N. (1997). Toward a theoretical psychology: Should a subdiscipline be formally recognized? American Psychologist, 52, 117±129. Sprangers M. (1988). Response shift and the retrospective pretest: On the usefulness of retrospective pretest±posttest designs in detecting training related response shifts. Amsterdam: SVO. Sprangers, M. (1996). Response-shift bias: A challenge to the assessment of patientsº quality of life in cancer clinical trials. Cancer Treatment Reviews, 22, 55±62.

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Sprangers, M., Broersen, J., Lodder, L., Wever, L., Smets, E., & VanDam, F. S. (1995). The need to control for response shift bias in longitudinal quality of life research [Abstract]. Quality of Life Research, 4, 488. Sprangers, M., Rozemuller, N., Vanden Berk, M. B. P., Boven, S. V., & VanDam, F. S. (1994). Response shift bias in longitudinal quality of life research [Abstract]. Quality of Life Research, 3, 49. Sprangers, M., & Schwartz, C. E., (under review). Integrating response shift into health-related quality-oflife research: A theoretical model. Thoresen, C. E. (1991). Long-term results of recurrent coronary prevention project at eight years. Invited paper presentation at the First International Congress of Behavioral Medicine, Uppsala, Sweden. Ware, J. E., Snow, K. K., Kosinski, M., & Gandek, B. (1993). SF-36 Health survey: Manual and interpretation guide. Boston: The Health Institute. Zelen, M. (1979). A new design for randomized clinical trials. New England Journal of Medicine, 300, 1242±1245. Zelen, M. (1990). Randomized consent designs for clinical trials: An update. Statistics in Medicine, 9, 645±656

Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.06 Consultancy SUSAN MICHIE United Medical and Dental Schools of Guy's and St. Thomas's Hospitals, London, UK 8.06.1 INTRODUCTION 8.06.1.1 8.06.1.2 8.06.1.3 8.06.1.4 8.06.1.5

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Clinical Health Psychology What is Consultancy? Issues for Consultancy A Systemic Approach Who are the Consultees?

8.06.2 WHAT DOES CONSULTANCY INVOLVE

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8.06.3 EVIDENCE-BASED CONSULTANCY

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8.06.4 OPPORTUNITIES FOR PSYCHOLOGY CONSULTANCY

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8.06.5 PROMOTING THE CONSULTANCY ROLE

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8.06.6 EXAMPLES OF CONSULTANCY WORK

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8.06.6.1 Developing and Evaluating Written Material for Patients 8.06.6.1.1 The breast clinic 8.06.6.1.2 The colposcopy clinic 8.06.6.1.3 The rehabilitation department 8.06.6.2 The Health and Well-being of Health Professionals 8.06.6.2.1 Stress management 8.06.6.2.2 Health checks and feedback 8.06.6.2.3 Stress in medical school 8.06.6.2.4 Twelve-hour nursing shifts 8.06.6.3 Health Promotion in Primary Care 8.06.6.3.1 Individual lifestyle interventions in primary care 8.06.6.3.2 Group-based health promotion interventions in primary care 8.06.6.3.3 A consultancy framework for developing health promotion intervention programs

161 162 162 162 162 162 163 163 164 164 165 165 166

8.06.7 THE FUTURE: AVOIDING GAPS AND TRAPS

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8.06.8 REFERENCES

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interdisciplinary, collaborative model with other health care professionals in which psychologists will have shared responsibility and decision-making for patient care. (Siegel, 1995, p. 342)

8.06.1 INTRODUCTION In the future, In the health care arena, psychologists will function less within an independent (autonomous) practice model and more within organised health care settings (Pion, 1991). The emphasis within these organisational frameworks will be on an

The development of new health technologies and health care providers in the developed countries is leading to an enlarging ªhealth industry.º The way in which health services are 153

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organized is changing rapidly and profoundly on both sides of the Atlantic. These developments provide increased opportunities for professionals concerned with health issues, and also create a need for health professionals to examine their role and contribution. Several innovations demand expertise in both measuring and improving behavioral and psychological processes (Johnston & Weinman, 1995). For example, the growing emphasis in health care on the prevention of disease has led to a need for professional skills relevant to understanding and altering health-related cognitions and behaviors. The increased prevalence of chronic rather than acute disease has created a need for the understanding of emotional responses and problem-solving coping skills, in addition to existing biomedical knowledge. Changes in the structure of the health services in the 1990s has increased the need to evaluate the impact of these services on the users. In the UK, the control and direction of health care services have moved from practitioner to purchaser, and from clinicians to general managers and accountants. This poses the challenge of whether health care professionals can adapt to these changes and whether they can influence the changes to achieve their objective of improving the health and well-being of the population or of sections of the population. This chapter describes the emergence and skills of clinical health psychologists, the consultancy role and the stages it involves, its possibilities and constraints and the responsibilities of psychologists in promoting themselves and their disciplines to existing and potential consultees. Whilst many of the examples are from the UK, the issues raised are of more general relevance. 8.06.1.1 Clinical Health Psychology Health psychologists have much to contribute to the prevention and management of problems within organizations, and have the skills to function in a variety of settings (Altman & Cahn, 1983). The essence of training in psychology is learning about the factors that affect the causes, maintenance, and changes of human functioning at the individual, group, and organizational levels. Human functioning is considered in its component parts (behavior, thinking, and emotion) and an analysis is made of the relationships between these components, and of the relationships between these components and situational factors. Health psychology is a broad discipline: for convenience, content areas have been summarized into five broad areas (Johnston & Weinman, 1995). (i) Health risk behaviours. The nature, causes, and health effects of such behaviors as

smoking, substance abuse, unsafe sexual behavior, and harmful dietary choice; the role of stress and dispositional factors in the etiology and exacerbation of disease; psychological theories and interventions for primary prevention and health-related behavior change in community and workplace settings. (ii) Health protective or enhancing behaviors. The uptake and maintenance of such behaviors as exercise, healthy dietary choice, teethbrushing, health checks/self-examination, and attendance for preventive medical screening; psychological approaches to health promotion. (iii) Health-related cognitions. Cognitive processes that mediate and determine health and illness behaviors. These include general health beliefs/attitudes; attributions, control, and selfefficacy beliefs; symptom perception; and illness representations in children and adults. There are a range of theoretical models and frameworks that can be used, not only for explanation and prediction, but also for developing interventions (e.g. to modify health beliefs, increase internal control, or self-efficacy beliefs). (iv) Processes influencing health care delivery. The nature and effects of communication between health care practitioners and patients; patient satisfaction and adherence to treatment and advice; the uptake and response to preventive services such as screening; stressful medical investigations and treatment; hospitalization; health care staff attitudes; decision-making, work stress; quality assurance; measurement issues in audit and outcome evaluation; psychological interventions to improve communication, facilitate adherence, and prepare for stressful medical procedures. (v) Psychological aspects of illness. The psychological impact of acute and chronic illness on individuals and their families and carers across the lifespan; pain behavior and rehabilitation and health-related behavior change; dying, death, and bereavement. Psychological intervention to promote self-management, facilitate coping with pain or illness, to improve quality of life, and to reduce disability and handicap. In all these areas, a wide range of skills is used, including assessment, evaluation, communication, teaching, and intervention. The work of a health psychologist is targeted at the problems of public health, the provision of health care and the response to illness. The problems may be identified by health care agencies, health professions, and organizations and employers outside the health care system. Psychologists can bring a systems approach to problems and locate them and the health care system within their wider contexts. By putting these skills together, psychologists are able to

Introduction address ªwhat ifº questions by developing theoretical and quantitative causal models of behavioral predictors. Health psychology is a new discipline. The first book including the term ªhealth psychologyº in its name was published in 1979 (Stone, Cohen, & Adler, 1979). Health psychology is defined as the study of psychological and behavioral processes in health, illness and health care (Johnston, 1994). Clinical health psychology has been used to refer to clinical, organizational, or health psychology in a health-service setting. There are two primary reasons for interest in the contribution of clinical health psychology to other health professionals and to health service managers (Jansen, Methorst, & Kerkhof, 1991). The first is the increasing recognition that solutions to health problems may be found by seeking behavioral solutions (e.g., risk-factor management in the case of heart disease). The second is the escalating cost of health care, which fosters a welcoming of prevention and of interventions that reduce reliance on the medical system (e.g., psychological interventions for chronic pain management). Clinical health psychology aims to translate research into practical applications that can help people lead healthier lives. This may take several routes: teaching and training health professionals and patients; working with patients to adopt healthier lifestyles or to manage problems such as pain or stress; and consulting with professionals about patient, staff, or organizational issues. Many research findings are not applied and do not influence clinical practice or policy, a situation that is itself the subject of analysis and study by health psychologists (Marteau, Sowden, & Armstrong, submitted). The knowledge bases required for a successful health psychology consultancy role are theoretical models, (see Chapter 8.01, this volume) measurement techniques (see Chapter 8.04, this volume) successful interventions, factors that influence behavior and behavior change (a portfolio of examples that is currently being collected by the British Psychology Society Special Group is cited here), and specific health psychology knowledge (e.g., psychophysiological processes, health behavior, stress, communication and decision-making in health care, consequences of and coping with illness) (see Chapters 8.02 and 8.07, this volume).

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shapes them, proposes a methodology, implements it, and reports back. Health psychology consultancy is the use of these psychological skills and knowledge to facilitate, develop, or enhance the effectiveness of others in the maintenance and improvement of human health. Consultancy has the potential to influence large groups of people and to change processes that depend on many and varied people and organizational policies, procedures and practices. As with other health services, consultancy must be evidence based, and not just taken on trust. In this age of squeezed resources for health care, consultancy must be shown to be effective and cost-effective. This requires making the consultancy component of health psychology explicit and embedding it within a research framework. In order to expand their role to include consultancy, psychologists need to apply the skills and knowledge acquired in working with individual problems to working with organizational and service problems (Michie, 1993). Areas in which psychologists have expertize relevant to consultancy work include: (i) understanding the contextual nature of health problems; (ii) the systematic analysis of problems and potential solutions; (iii) the understanding of change processes that enable recommendations about the best ways of achieving the task or goal identified by the consultee; and (iv) research skills that enable the evaluation of services, interventions, and changes. 8.06.1.3 Issues for Consultancy The main issues for clinical health psychology consultancy are: (i) Patients: improving care and decreasing patient anxiety. (ii) Staff: risk assessment, reducing stress, reducing ill-health, and increasing job satisfaction. (iii) Improving communication: between staff and between staff and patients. (iv) Assessing need for services. (v) Service evaluation, quality assurance, and audit. 8.06.1.4 A Systemic Approach

8.06.1.2 What is Consultancy? The term ªconsultationº refers to one party (individual, committee, or organization) formally seeking the advice of another. The consultee poses the initial questions and the consultant

A systems framework for health is described well by Stone (1979, 1982). A system is a set of elements related to each other in such a way that the actions of one element affect the states of, and initiate or modify activity in, other elements

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of the system. A goal of health psychology is described as discerning the relationships between health activities and the entities that appear in the activities. The health system is seen as being much broader than the health care system, including entities such as environmental health hazards and health resources, public health measures and planning agencies, health education, and political behavior. The health care system is composed of people, organizations, and machines that protect, enhance, or restore health. The people may be users, providers, family members, policy-makers, educators, or researchers. The organizations are any collections of individuals who act together to promote good health (e.g. community organizations, hospitals, or government departments). The machines are usually computers. The broader world of health hazards includes toxins, pathogens, stressors, and safety hazards such as defects in tools or materials. Health resources include knowledge and technical skills, leisure, recreation and health care facilities, material commodities such as housing and money, tools and machines, and regulations, laws, and procedures. Health psychologists seek to understand the system in which, or with which, they are working, in order to develop ideas about how it could be improved and to intervene to change it, if necessary. Their contribution lies both in communication skills to gain the agreement of relevant people that change is desirable and in developing strategies to achieve the desired changes. Other skills that psychologists have are the ability to make predictions about the effects of change in particular areas, to test those predictions, and to interpret the results within a theoretical framework. These are all skills that are required in organizational consultancy. The work of health psychologists has been described as lying on a dimension, extending from basic research to the design and development of new interventions, to the implementation of interventions in controlled trials, to the evaluation of programs of service delivery (Stone, 1982). Organizations have certain tasks to perform, and patterns of behavior and beliefs about the organization develop around the performance of these tasks. Consultants describe and examine patterns of beliefs and behavior around specific tasks and the effect of these patterns on relationships and communication throughout the organization (Campbell, Draper, & Huffington, 1989). Observing, understanding, and developing hypotheses about the way in which these patterns or routines protect certain relationships are key to enabling organizations to change. Organizations change when people's

perceptions, beliefs, and behavior change. This can be achieved by systemic interviewing, feedback within the organization, and targeted interventions. Systemic interviewing involves asking about the way in which people think, the way in which their beliefs affect their actions and relationships in such a way that challenges discrepancies between beliefs and actions.

8.06.1.5 Who are the Consultees? Consultees are individuals, groups, or organizations that enter into a negotiated contract with the consultant, agreeing the objectives, process, and conditions of the organizational consultancy work. They may be those directly providing services, both medical and nonmedical, they may be those planning and managing these services, or they may be those purchasing services (see Figure 1). Most would not think of psychologists as the appropriate professionals to help them. However, the problems that they face are often ones of behavior and of behavior change. Management problems in audit and evaluation, in implementing policies and guidelines, and in developing and maintaining teams are examples of this. In the UK, about 40% of health psychologists are employed by health services, either to help develop and evaluate services to patients or to deal with general problems of quality assurance, preventive health care, intervention at an organizational level, or to assist in setting and evaluating targets for health care. Examples of psychologists providing consultancy in the UK health service can be found in The change directory: Key issues in organisational development and the management of change (Brunning, Cole, & Huffington, 1990) and Internal consultation in health care settings (Bor & Miller, 1991). Similar work in other areas of the educational and social services is described in Internal consultancy in the public sector: Case studies (Huffington & Brunning, 1994). In the USA, business and industry pay for more than 25% of the nation's health care costs, giving employers a direct financial interest in developing health promotion programs. In response to this, occupational health psychology has developed a ªsystems consultationº model (as described above) to help managers identify employees' needs, to meet these needs with appropriate forms of intervention, to communicate effectively these needs and expectations to the individuals responsible for the development of health promotion programs, and to ensure that managers' expectations of success are reasonable and in line with current capabilities and resources (Everly, 1986).

Resources

Environment Stresses and Hazards Nourishing and Protective Elements

Public Health Measures

Information Regulation Direct Impact

Health Education Health Behavior

Political Behavior

Outreach

Illness Behavior

Health Care Provider System System

Health Care Sick Role Behavior

Individual whose Health is at Issue

SocioCultural Support Systems

Third Party Organizations Planning Agencies Figure 1 The health system (source: Stone 1982).

Political Systems

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8.06.2 WHAT DOES CONSULTANCY INVOLVE There are five stages to consultancy: the approach from the consultee, refining the question, developing the methodology, implementing the methods, and reporting back. Although these stages are sequential in principle, there is a flexibility in practice, with overlapping activities and revisiting of earlier stages as the work develops. Practical examples of these stages are given in Section 8.06.6. The approach from the consultee involves the following: (i) being clear about who is the consultee (e.g., manager, clinician), what the initial questions are, why the questions are being asked, what the problem is that needs solving, (e.g., lack of resources, interpersonal conflict, the consultee's anxiety); (ii) discovering what answers the consultee is seeking (e.g. literature review, descriptive research, an intervention); and (iii) establishing the nature of the approach (e.g. an informal contact, a formal research initiative, a direct approach for consultancy). Refining the question requires: (i) an analysis of the situation presented by the consultee and the formulation of problems such that they are specific and testable, with clear operationalized objectives; (ii) acquiring relevant background information (e.g., understanding formal and informal systems of communication within the organization, knowing who are the key individuals and committees with power and influence, and anticipating potential barriers to consultancy work within the organization). (iii) defining the proposed product of the consultation (e.g., a literature review, a psychological opinion, a new procedure, a descriptive study, a study of factors associated with, antecedent to or consequences of an event or phenomenon, an evaluation of the consultee's intervention, an evaluated psychological intervention, which may be new or an adaptation of an intervention from elsewhere or from research literature); and (iv) the ability to win consent for evaluation at an early stage of the consultation, including developing a baseline. Developing the methodology requires: (i) A methodology that allows the generation of specific answers to specific questions. This may involve a systematic literature review (Chalmers & Altman, 1995), qualitative methodology (Smith, Harre, & Langenhove, 1995), or research designs for descriptive studies (see Chapter 5, this volume). (ii) The use of valid and reliable measures to determine whether objectives have been

achieved and to test any research questions within the consultation (see Chapter 8.04, this volume). This will require knowledge of the relevant research literature, and an ability to use databases and to design and pilot measures where appropriate ones do not already exist. A comprehensive range of current psychometric measures are given in Measures in health psychology: A user's portfolio (Johnston, Weinman, & Wright, 1995). (iii) The ability to include a simple economic evaluation. (iv) Strategic thinking (e.g., anticipating hurdles and barriers and developing plans for overcoming these, planning for any anticipated adverse consequences). (v) Negotiating access to resources and winning agreement from all necessary individuals, groups, and departments. (vi) Identifying the blocking and facilitating forces within the organization. (vii) Negotiating access to all information sources, and identifying relevant gatekeepers and those who must give approval. (viii) Setting agreed boundaries (e.g., confidentiality issues, time constraints, starting and finishing dates, review dates, location, report writing and publications). Implementing the methods requires: (i) Achieving the understanding and consent of the consultee and other relevant individuals, groups, and departments. This involves a sensitivity to the consultee's agenda, both explicit and hidden, and to potential threats posed by the consultancy process. (ii) Involving the appropriate individuals and groups in the relevant aspects of the process (e.g., student health professionals in data collection). (iii) Assigning clear roles and responsibilities to those involved, including the consultant and the consultee, and a clear statement of these to the relevant people. (iv) Appropriate and accurate data collection, analysis, and interpretation. (v) The maintenance of a professional role. (vi) Drawing up a written contract of the objectives, process, and conditions of the consultancy work, and defining the resources required for all stages of the consultancy process. (vii) Clear communication and effective meetings. Reporting back requires: (i) The ability to give feedback to the consultee and other relevant audiences in appropriate ways such that maximum effect is achieved. (ii) Clear and realistic recommendations. (iii) Negotiating where to publish and present the results and who the authors should be.

Opportunities for Psychology Consultancy Outlets may include those relevant to the consultee's discipline, to health psychology, or to multidisciplinary audiences. (iv) Dissemination of results, including both informal and formal written reports, and verbal presentations. 8.06.3 EVIDENCE-BASED CONSULTANCY If the consultancy process is to be evaluated, its objectives must be defined and measurable. This is impossible in situations in which the consultancy role adopted by health psychologists is not made explicit. The outcome criteria used in evaluations may be very varied (e.g., staff or patient satisfaction, financial savings, and adherence to guidelines). Many consultees do not appreciate the importance of a scientific approach to service evaluation, including the evaluation of consultancy work. Psychologists need to introduce the importance of welldesigned and conducted evaluation at every opportunity in their contact with other health professionals. Psychologists have an important role in defining the outcomes used in evaluation. Instead of using a biomedical disease model, in which signs and symptoms are reflections of tissue pathology and patient reports are often discounted, psychologists use a behavioral model. The important indicators of health and well-being are seen as behavioral-overt behavior, cognitions, and emotions. Outcome measures in health and medicine should therefore be anchored in their relationships with behavior (Kaplan, 1994), and psychologists are the obvious professionals with expertise in this area. 8.06.4 OPPORTUNITIES FOR PSYCHOLOGY CONSULTANCY There has been a fear among UK psychologists that they could become marginalized by health service changes (Ovretveit, Brunning, & Huffington, 1992). This situation has been mirrored in Australia: Lack of knowledge about the consequences of organisational change resulting from restructuring, and exclusion from a strategic influence in the process of change, makes allied health professions vulnerable to a substantial reversal of both power and prospects. (Boyce, 1991)

Alongside the possible intended benefits of health service re-organization are possible problems for staff and for health care organizations. Staff may become anxious or demoralized by uncertainty and by change, with the con-

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sequence that they work less effectively, with more absenteeism and less job satisfaction. Services may suffer if staff have less motivation, time, and energy to develop services and to improve their quality. The organization may become less effective and efficient if apathy, poor communication, and conflicts between individuals, teams, and departments develop. However, organizational changes are a potential opportunity, as well as a threat. The very problems that may be produced by the changes and the tasks faced by those trying to manage the changes give the potential for a new role for psychologists, that of organizational consultant. Psychologists are the group of health professionals seen as having skills and knowledge relevant to the process of change. The importance of understanding the role of broader forces within society has been emphasized in a volume considering the international development of health psychology (Jansen & Weinman, 1991). The future shape of health psychology will be influenced both by the needs of society and developments within medicine, and by pressures within the discipline. In order for psychologists to understand the ways in which social conditions affect health and healthrelated behavior, they need to understand and collaborate with a variety of other disciplines (e.g., epidemiology and researchers of consumer behavior). As health psychology is a relatively new discipline, jobs and consultancy contracts will often have to be created. It is not enough for health psychologists to have skills relevant to situations in which they have no widely recognized track record. They will have to define the job tasks, clarify the skills needed, and demonstrate to potential employers that their skills and orientation will make a contribution (Altman & Cahn, 1987). To a large extent, health psychologists will have to create their own job market. This will require an understanding of, and an ability to engage with, what potential employers want. A survey of potential employers of applied psychologists in the USA in 1979 found that the most important skills sought were the ability to communicate, interview, conduct impact evaluations, plan human resources, use statistics, and have knowledge of the particular area (Edwards & Holmgren, 1979). In a qualitative study of the future organization of six therapy services in the UK, Ovretveit (1992) summarized some of the elements needed for their consultancy role: to know how the health service market works, to attend to what purchasers want, and to judge how they may be persuaded to finance the service. He advised the development of strategic plans, which should include an analysis of the ªbusiness

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environment,º a rationale for developing activities, the resources needed (people, capital, and revenue), and the end points to be reached (strategic objectives and a business plan). Psychologists have a well-established role of providing psychological services directly to patients. They are also known for the research they conduct. The consultancy role is less associated with psychologists. In the UK, health psychologists are becoming increasingly aware that this is a role that is already being played, and one that could be developed with good effect for the quality of services, for multidisciplinary work and for the spread of psychological knowledge and skills. The potential for consultancy work by psychologists is much greater than is currently demonstrated and recognized. The realization of this potential will partly depend on the willingness of psychologists and the profession to develop their consulting role (Ovretveit et al., 1992). A broader perspective for translating research findings into effective practical programs has been taken by Mary Jansen and colleagues in the USA (Jansen, Methorst, & Kerkhof, 1991). As well as having a knowledge of health care systems, psychologists should be familiar with media techniques to promote their messages and their work and thereby play a greater role in the political process. Cynthia Belar (1995) makes the point that health psychology is not just clinical psychology in a medical setting, citing examples of health psychologists being consulted by a government on noise abatement, designing advertising campaigns to increase the use of safety belts, and being consulted by schools about smoking prevention. National and local governments are seen as ideal employers of health psychologists since they regulate health service delivery and costs, formulate laws to regulate health behavior (e.g., drink driving), and regulate public health activities affecting the environment (e.g., the Clean Air Act). Potential positions for health psychologists have been identified as: working with legislative committees specialising in health issues (e.g., House and Senate subcommittees), executive agencies and administrative departments (e.g., Health Care Financing Administration, National Institutes of Health, National Institute of Mental Health, and Environmental Protection Agency), government research organizations (e.g., Congressional Research Service, General Accounting Office, and Office of Technology Assessment), special bodies empowered to help control health costs and quality (e.g., health systems review bodies, professional review organizations), trade associations, and lobbyists who provide government officials with information. (Altman & Cahn, 1987, p. 238)

Psychology has the potential to be an influential partner in the development and management of health care resources and systems, but only if it widens its role. Elliott and Shewchuk (1995) state that: For this change to occur, psychologists must assume a more visible profile in lobbying at local, state and national tiers to ensure that behavioural health issues are included in policy formation, research agenda and the allocation of services. If professional psychology fails to assume this responsibility and meet this challenge, the profession risks being marginalised as a stake holder in the health care system. (p. 346)

In some cases, targeted outcomes and intervention may be more appropriate and effective at the level of society and community rather than at the clinic and organization level. There needs, however, to be clarity about the role being played by psychologists in different situations. Lobbying, campaigning, advocating, and influencing those with political power are political activities and may be very appropriate for the objectives of health psychologists. On the other hand, consultees need to be confident that consultancy work will be carried out within a neutral, rather than a political, perspective. Having said this, it is doubtful that neutrality can ever be achieved, and a better approach may be to be explicit about one's beliefs about issues relevant to the consultancy work. 8.06.5 PROMOTING THE CONSULTANCY ROLE Much consultancy by applied psychologists goes on outside a formally contracted arrangement, which means that it may not be recognized, either by the consultee or the consultant. In order to help develop this area of work, psychologists should be encouraged to formalize and evaluate the consultancy work they carry out and to publish the results. Psychologists need first to establish what potential employers want, which can often be done by obtaining their annual reports, strategic plans, and other relevant documents. The next step is to convince them that they have the expertise to meet their needs, to achieve agreed tasks within the time and cost constraints, and that their track records are reasons for the employer to choose them. What hinders many psychologists is not their lack of skill but their lack of focus on what they can deliver, and their diffidence in persuading others that they have something to offer of a quality that cannot be obtained from others. The point is well made if the term ªhealth psychologyº is substituted for ªyour companyº

Examples of Consultancy Work in the following statement, cited in Altman and Cahn (1987): I don't know who you are. I don't know your company. I don't know your company's product. I don't know what your company stands for. I don't know your company's customers. I don't know your company's record. I don't know your company's reputation. NowÐwhat is it you wanted to sell me?

One way to promote psychologists as consultants to potential purchasers would be for psychological professional associations to collect case studies of successful consultancy work. Producing an informative and attractive summary of the consultancy services on offer, in leaflet, video, or internet homepage form, is essential. Purchasers should be encouraged to write consultancy into the service contracts and job descriptions of psychologists. The training of consultancy skills should be included in postgraduate courses of applied psychology and as part of continuing professional development 8.06.6 EXAMPLES OF CONSULTANCY WORK Examples of specific questions raised with a clinical health psychologist providing a consultancy service to UK health care organizations are listed below (taken from Michie, 1993, and Earl L., 1997, personal communication). (i) Questions from managers: (a) Hospital What will the effects be on staff and patients of decentralizing our outpatient service into clinic-based teams? How can we develop an integrated oncology service from the present divided service? What are the reasons for the very high absenteeism on a particular ward and what recommendations would you make to improve the situation? How can we best assess patient satisfaction with our services? Is a new receptionist skills training program effective in changing staff behavior and in improving patient satisfaction with their reception within the hospital? (b) Community What are the problems for the various staff groups in introducing parent-held health records and how could they be overcome? What are the effects of changing health visitors' work from individual to ªcorporateº caseloads? What can be done to improve the communication and integration of work between

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community-based nurses and nurses working in doctor-led primary care teams? (ii) Questions from clinicians: Is the way in which we advise patients with diabetes about its management contributing to the worryingly high rate of eating disorders we are finding? Can we do something to reduce the very high anxiety in women referred with suspected breast cancer at their first hospital appointment? Is the arthroscopy patient information booklet and video helpful and, if so, how? Is the oncology counseling service effective? (iii) Questions from purchasers: (a) Health authority What are the dimensions of quality of health care valued by the local population and are they sufficiently represented in our contracts with provider units? What are the priorities of maternity service users and how far do current services meet changing childbirth national guidelines? (b) Multiagency: What is the current service provision for children who have been sexually abused, the perpetrators, and nonabusing carers? What are the gaps in service and recommendations for resource allocation? Although there are many examples of work such as this, there is a paucity of consultancy work published in peer-reviewed journals. This limits the possibility of others learning from and building on the work and limits the promotion of psychologists as competent and experienced in carrying out this type of work. One example of published consultancy work comes from a health psychology unit based in the medical school of a London teaching hospital. This unit was set up in the late 1980s by Professor Marie Johnston to integrate clinical, organizational, and health services research work. In carrying out consultancy work, the team sought to include psychological questions within the projects undertaken and to ensure that the work was designed in such a way that it would be of publishable standard. Consultancy projects were primarily in two areas: developing and evaluating written material for patients, and the health and well-being of health professionals. Some examples are described below. This is followed by a description of consultancy work carried out within a Health Promotion Unit by a UK psychologist, Barbara Wren. 8.06.6.1 Developing and Evaluating Written Material for Patients One of the interests of this group was the effect of written information on patient out-

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come. Clinicians in several specialities were aware of the problem of high anxiety in patients referred for investigation and approached the health psychology unit for help. Several studies were carried out and the results were reported both to the appropriate parts of the commissioning organization and to the wider research community, the latter being in the form of publications and conference presentations.

controlled study (Marteau, Kidd, Cuddeford, & Walker, 1996). Although both booklets led to increased knowledge, only the simpler one reduced anxiety. In addition to using simpler language, the shorter booklet also contained information about coping strategies and was associated with the clinic that the women were attending. It was recommended to the clinic that they use this booklet.

8.06.6.1.1 The breast clinic

8.06.6.1.3 The rehabilitation department

The consultant breast surgeon was concerned by his clinical experience of very high levels of anxiety shown by women attending a breast outpatient clinic for the first time, and approached the health psychology unit for advice as to how this might be prevented or reduced. The first contribution of the health psychologists was their knowledge of previous relevant research. This had suggested that written information may improve patients' feeling of well-being and make them feel better informed and less worried (Eardly, 1988; Hutchcroft, Snodgrass, Troyan, & Wares, 1984; Wallace, 1984). On the basis of this, a booklet aimed at addressing procedural worries by giving information and coping advice was designed and given to women within a randomized controlled trial (Madden, Johnston, & Parbhoo, 1994). This study confirmed the clinical observation that this group of patients was highly anxious, and also found that their most dominant worry was more often about the outcome of their appointment rather than about the procedure. Although the booklet increased women's knowledge, it did not reduce their anxiety. These results led to a subsequent study comparing three kinds of preparatory information: that dealing with clinic procedures, that dealing with the outcome of breast problems, and that designed to increase perceived control (Michie, Rosebert, Heaversedge, Madden, & Parbhoo, 1996). Women receiving information were found to be less anxious than the control group and perceived their problem as less serious. There was one difference between the types of information booklet: those receiving coping or outcome information were less worried about what the doctor might find than those receiving procedural or no information.

A different use of written information was used in response to a request by the hospital's physiotherapy department to help recovery during rehabilitation. A previous study had found that patients with a higher level of perceived control over recovery made more progress with recovery from disability than did those with a lower level of perceived control (Partridge & Johnston, 1989). A simple intervention was designed with the aim of increasing patients' sense of control over their recovery (Johnston, Gilbert, Partridge, & Collins, 1992). Using a randomized controlled design, patients were sent an appointment letter with additional paragraphs under the heading ªInformation sheet for patients receiving physiotherapy.º Patients receiving this letter were found to have higher levels of perceived control and tended to be more satisfied with information than did those who received the standard letter. The extended letter was therefore used routinely by the physiotherapy department.

8.06.6.1.2 The colposcopy clinic Another group of patients reported by clinicians at this hospital to be highly anxious was women referred for colposcopy following an abnormal cervical smear result. The effectiveness of two booklets, one produced nationally and the other designed locally to be simpler and shorter, was evaluated in a randomized

8.06.6.2 The Health and Well-being of Health Professionals The same health psychology unit was also approached to carry out various projects concerning staff health, since this was recognized as being important both in its own right and as a factor in delivering high-quality patient care. 8.06.6.2.1 Stress management We were asked by the Director of Nursing and the General Manager of the hospital to assess stress levels amongst nurses, and found they reported greater problems in dealing with stress than the norm (Michie, Ridout, & Johnston, 1996). This was tackled in three ways: introducing stress management training courses, offering a counseling service based at the hospital's Occupational Health Unit, and running a health screening and advice program for staff. Although the first two initiatives were not evaluated within a randomized controlled trial, comparison of scores before and after the interventions showed that there was lower anxiety and increased job satisfaction after the

Examples of Consultancy Work stress management training (Michie & Ridout, 1990). Six months after counseling, staff were less anxious and depressed, more satisfied with their work and life outside work, and perceived themselves to be functioning better at work compared to before counseling (Michie, 1992a, 1992b). There were fewer days and episodes of sickness absence in the six months following counseling compared with the equivalent period before counseling (Michie, 1996). 8.06.6.2.2 Health checks and feedback The Occupational Health Unit of the hospital was interested in the possibility of staff health screening as a way of detecting and reducing potential health risk factors, including stress, and of promoting healthier behaviors. They approached the Health Psychology Unit, who suggested an evaluation that included the impact of two methods of giving screening results on health behavior and beliefs (Michie, Johnston, Cockcroft, Ellinghouse, & Gooch, 1995). A free health screening program was promoted throughout the hospital for 10 days before under the slogan ªGood Health Campaignº by posters, letters to departmental heads, and advertisements in the local press. Screening sessions were held in the Staff Recreation Club twice a day for one week. Questionnaires were completed before the physical measurements and staff were given written results of these. Those found to have raised blood pressure or very high scores on the General Health Questionnaire were given a standard letter to take to their general practitioner. All the 297 staff attenders were contacted by post six months later and invited for a repeat assessment. Staff attending the program were compared with a stratified sample of non-attenders. Attenders were allocated randomly to getting simple informational feedback of their results or to receiving feedback plus verbal and written advice, personal target setting, and a written contract. Those receiving this more extensive feedback were found to have lost more weight and increased their exercise more than those receiving simple feedback. This project is an example of including a psychological research question within a piece of consultancy work. 8.06.6.2.3 Stress in medical school This research group was also consulted about concern expressed by the medical school about stress in their students. The importance of medical schools recognizing the problem of stress and taking steps to reduce it was emphasized by the British Medical Association (BMA, 1992). This report concluded that

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medical students should be taught stress management techniques. A stress management course was designed and evaluated by a health psychologist for students in their first clinical year, which is known to be particularly stressful (Michie & Sandhu, 1994). Questionnaires assessing mood, attitudes, and the causes of stress were given to all students at the beginning of the year and one year later. The course was offered four times a year, and students were allocated to a waiting list of about three months. This allowed students to act as their own controls in order to assess whether the courses had an impact. The courses ran for three weekly sessions and students were asked to complete questionnaires before and after the course. Whilst on the waiting list, the students had completed the same questionnaire at two time points with a similar intervening interval. The uptake of this optional course (which coincided with sports afternoon) was 17%. Compared to nonattenders, attenders were more anxious, less satisfied with themselves and their life, and perceived both their work and outside functioning to be poorer. Over the year, nonattenders became significantly more dissatisfied at work and increasingly perceived their functioning at work and outside to be poorer, whilst attenders showed no such deterioration over the year. Those who attended the course showed more improvement in reported work functioning after the course than when on the waiting list. These results showed that stress management was providing long-term protective effects as well as short-term benefits. The results were reported to the medical school, and the school subsequently agreed to fund an extra half day per week to continue this work. Without data to demonstrate that the intervention had a positive impact, it is unlikely that this piece of consultancy work would have led to long-term funding for the consultant. The BMA is concerned about the problems of stress and long hours of work at all stages of the medical career. After a junior doctor died in the UK following excessively long hours of work, a health psychologist and a medical consultant known for their work in occupational health were approached to write an editorial in the British Medical Journal on the question of whether overwork can kill (Michie & Cockcroft, 1996). This required a structured literature search and the resulting article attracted worldwide attention, with many invitations to participate in conferences and media events. If those being consulted do not have the necessary data to answer the consultee's question, or the means to acquire such data, a literature review (preferably systematic) may be the best method of response. An example of this is a review commissioned by a local health

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authority of interventions to promote contraceptive use and sexual health among young people (McAlpine, Abraham, & Davies, 1995). 8.06.6.2.4 Twelve-hour nursing shifts As cost pressures on the health service have increased, various ways of reorganizing work have been attempted. One such change was the change in the length of working day among nurses from 8-hour shifts to 12-hour shifts. The health psychology unit was approached to evaluate this change, as described below (Johnston & Pollard, 1991). (i) The approach from the consultee The issue of introducing and evaluating 12hour nursing shifts arose in the context of increasing efficiency in health services and was under discussion by national nursing bodies in the UK. It was raised in a multidisciplinary hospital management meeting. After some discussion, the meeting agreed that the director of nursing should obtain the assistance of the psychology department in evaluating the new shift system.

end of each shift. There might be an effect with duration of the shift, so that the nurses on 12hour shifts would, after eight hours, be comparable to eight hour shift nurses, or there might be cumulative effects of working 12-hour shifts so that nurses would show effects earlier in the shift. (iv) Implementing the methods The proposed methods were discussed and agreed with the implementation group and they helped to introduce the study to the relevant ward staff. With the assistance of other departments in the hospital, a computer was installed in the nursing office in each of the participating wards. A medical student doing his project work in psychology played a major part in collecting data, but additional assistance was obtained from other members of the health psychology unit. Initially, a member of the psychology unit was present to ask the nurses on each ward to complete questionnaires and computer tasks at the start and end of each shift and every four hours (throughout the 24 hours). This was gradually reduced to telephone-call prompts and beginning/end of shift attendance. Data were analyzed by the medical student and a member of the health psychology unit.

(ii) Refining the question The question was refined to be a comparison of the 12-hour shifts with the more usual 8-hour shifts. As the new shifts were only being introduced on a limited set of wards, a comparison was possible. Attendance at meetings of the nursing group implementing the shifts made it clear that the nurses were concerned about stress and the possibility of poorer performance. Therefore the question was reformulated to: Do 12-hour shifts result in greater stress and poorer performance than 8-hour shifts? (iii) Developing the methodology Wards that were comparable in function and structure to the 12-hour shift wards were identified; for example, surgical admission wards were matched with surgical admission wards. Stress was conceptualized as perceived stress to be measured by self-report measures of stress, tiredness, and mood. Performance was assessed in terms of speed and error rates using computer-presented cognitive tasks that were already available in the hospital. Computer assessment was used to minimize a possible confounding bias of nurses' responses reflecting what they wanted management to believe, as may be more likely in self-report measures. The design was a matched comparison of assessments every four hours and at the beginning and

(v) Reporting back The results of the study were reported directly to the nursing implementation group. Of particular interest was the finding that selfreport stress measures showed no differences between the two shift patterns and that the differences observed occurred at the beginning of shifts on the computer performance tasks. Nursing management decided not to implement 12-hour shifts, largely due to the retirement of the nurse leading this change. The results of the work were presented at conferences and published (e.g., Johnston & Pollard, 1991). 8.06.6.3 Health Promotion in Primary Care A recent coronary heart disease (CHD) prevention project involved establishing a health psychology post within a health promotion unit to support primary care teams in their CHD prevention activities. Consultancy requests were often made as a result of the consultee attending a skill-based training course run by the consultant, seeking further support for skills development. The development of a health psychology consultancy role within a health promotion setting enabled the sharing of skills and knowledge about health psychology, and also began the process of establishing a culture in which the importance of self and peer

Examples of Consultancy Work review became acknowledged. The model of health psychology that was developed linked a training and a consultancy role, as described below. 8.06.6.3.1 Individual lifestyle interventions in primary care (i) The approach from the consultee The consultee was a general practice nurse who, following attendance at a training course, requested help with planning the health promotion consultations that she was offering. (ii) Refining the question The meeting with the consultee was used to explore the reason for her request and to help her consider the specific areas on which she would like to focus. From this discussion it became clear that her concern was about the need for a framework and skills to plan and carry out health promotion interventions in primary care. The consultee felt that a counseling approach was not always appropriate, but was unclear about how else to structure consultations. Discussion indicated the need to clarify the approach the consultee was using at present and to offer support in developing new strategies if appropriate. The initial request for help was reformulated into the question: What framework is being used at present in individual health promotion consultations? (iii) Developing the methodology The consultant and consultee decided to audit 30 consecutive health promotion interventions. An audit form was developed that recorded the following information: demographic information, health information, and a record of the consultation and of any health promotion materials that were used. Health information was recorded in terms of CHD risk factors (i.e., body mass index, smoking status, units of alcohol, physical activity levels, blood pressure) to provide a profile of the health status of clients who were being offered health promotion. The health promotion intervention was recorded in an open-ended way to allow for as full a description as possible of the interaction between the patient and the practice nurse. The practice nurse was simply asked to write a description of the intervention with the client. Finally, a record of the health promotion materials used allowed us to look at the appropriateness of the information being provided and to consider alternatives if necessary.

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(iv) Implementing the methods The form was discussed and agreed with the consultee. During the period of collecting the data the health psychologist met twice with the consultee to review the use of the form and discuss any issues that it raised. This process helped to clarify the approaches that the consultee was using in health promotion consultations. It allowed for a focus on individual consultations and practical examples of the difficulties that the consultee was experiencing. Once data on 30 consultations had been collected the psychologist collated the information, drawing out the main themes and issues identified in the descriptions of the consultations. (v) Reporting back The results were fed back to the consultee. The data helped to identify the range of skills that she already had and was using with this group. It also gave a profile of the patients with whom she was working and allowed her to explore the difference between primary and secondary prevention in health promotion work. It provided an opportunity to discuss the different types of interventions being used (e.g. counseling and advice giving), to consider others (e.g., motivational interviewing techniques) and to discuss when each approach might be appropriate or inappropriate. It also allowed for a focus on the importance of assessing the client's health beliefs in order to develop responsive health promotion interventions. Finally, the consultee was able to identify further training and development needs, which she later pursued through the health promotion unit. 8.06.6.3.2 Group-based health promotion interventions in primary care (i) The approach from the consultee Two health visitors contacted the health promotion unit to ask for help with setting up a smoking cessation group. The health visitors worked with the CHD health promotion officer to set up a display and develop materials and leaflets to advertise and plan the course, which was targeted at new mothers. However, they were unable to recruit enough numbers for a viable group. It was decided to use the time that had been set aside for the group to meet with the health visitors and discuss how the identified client group could be worked within one-to-one consultations, as the client group did not seem to be accessible through group work. An initial consultancy session was offered, and four health visitors said they would like to attend.

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(ii) Refining the questions The session was facilitated by the health psychologist and the health promotion officer and focused on considering why it had been so difficult to recruit to the group. It emerged from this discussion that one of the difficulties had been the health visitors' own anxieties about raising the issue of smoking with clients with whom they were already involved. Fears about jeopardizing their working relationship and not knowing how best to proceed had meant that, while much energy had been put into planning and advertising the group, the health visitors had not mentioned it to any of their clients. The question that the consultation needed to focus on was refined as: What skills can I use to raise the issue of smoking with my clients? (iii) Developing the methodology After this initial consultation the consultees and consultants agreed to meet for four further consultation sessions, which would focus on frameworks and skills for working with smokers. The health psychologist and health promotion officer planned these sessions to include using the Stages of Change model (Prochaska & DiClemente, 1982) in order to provide a framework with which to structure health promotion interventions, explore and practise some communication skills (e.g., open and closed questions), and choose and use health promotion materials appropriately. (iv) Implementing the methods The four sessions went ahead as planned. The health visitors were asked to do work between each session. This included using a case study from their own work to apply the framework presented, and reviewing a health promotion resource for its usefulness and appropriateness for their client group. The feedback from the health visitors on the sessions was very positive, and the sessions were slightly refocused to concentrate on basic communication skills and assessing clients' health beliefs. (v) Reporting back The final session was used to review what had been covered and discuss the training and development needs identified. Preliminary evaluation of this consultation indicated that this was a useful and valued way of working. In particular, consultees identified the benefits of being able to focus on skills in a small-group setting and of sharing their experiences of smoking cessation work in a structured way.

The importance of offering this approach in a systematic way to other groups of health visitors was identified. 8.06.6.3.3 A consultancy framework for developing health promotion intervention programs The examples given above demonstrate the similarities in requests for consultation. The three main issues focused on in health psychology consultancy were: (i) offering support for, and an opportunity to review, skills development; (ii) using health psychology models to provide frameworks to help consultees review their approaches to, and planning of, health promotion work; and (iii) developing intervention programs. It was decided to use this framework to develop a consultancy service that would allow the health promotion unit to develop health promotion programs in conjunction with primary care teams. An example of this work that led to the development of a weight management program is described below. (i) The Approach from the consultee The health promotion officer for exercise and nutrition was approached by two practice nurses who wanted to set up a group program in their practice for patients with weight problems. This officer was interested to work with the CHD health promotion officer to develop a program. The health promotion officer asked the health psychologist for support and help with this work and for advice on including a psychological perspective. (ii) Refining the question Initial meetings were held with the two health promotion officers to agree on the focus of the work. Their aim was to develop a joint working relationship with the practice nurses to allow for skill sharing in the development of a group program. The health promotion officers could offer health promotion skills, knowledge of the topic and its health implications, and knowledge of health promotion materials for running group interventions. The practice nurses had experience of working with this client group and facilitating groups. After discussions it was agreed that consultancy sessions would be used to review the development of this working relationship. The question was refined to become: How can we establish a working framework with primary care to develop an intervention program? A number of features of

References this relationship were identified that were to be reviewed in each consultancy session: the timing and setting of meetings between both groups; the issues raised, including any difficulties and how, or if, they were resolved; opportunities to discuss skills and approaches and to share concerns with regard to the group itself; and the use of health promotion materials. The final issue that was considered in consultancy sessions was how to capture the learning from this method of joint working.

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In considering the future role of psychology in health care settings, Siegel (1995) wrote: An emphasis on cost containment, quality assurance, accountability, and documentation of health care programs' effectiveness will necessitate the use of psychologists' research and program evaluation skills. These developments will provide psychologists with the opportunity to have a significant role in shaping health-related programs for prevention and in the delivery of services. (p. 342)

and, as was confidently stated in 1987, (iii) Developing and implementing the methodology A series of joint sessions with the health promotion officers was planned in which the above topics would be reviewed. These sessions took place on a weekly basis subsequent to the health promotion officers' meetings with the practice nurses. The sessions included feedback from the health promotion officers on the progress of the group. The health psychologist facilitated a review, using an acceptant consultancy style, of the issues that were raised, and the above points were considered each time. (iv) Reporting back The health psychologist kept a record of the consultancy sessions, and the final sessions were used to summarize the issues that had been raised, in order to identify further training and development needs and to consider how to capture the learning from this process. It was decided to write up the work in a way that would capture both the content and the process of learning for both the practice nurses and the health promotion officers. This led to the development of a weight management program pack, which was later piloted in another practice. 8.06.7 THE FUTURE: AVOIDING GAPS AND TRAPS One general problem of consultancy is that health professionals may feel threatened by asking for psychological consultation (Belar, 1991). The request for help may reflect a breakdown in communication or relations between people, and may be a challenge to self-esteem, especially in health care settings where people are expected to have expertise in these areas. Empathy for the perspective of the individuals and the staff groups involved and tact to handle these situations are essential. Whilst these subjective factors may put limits on the consultancy role, the objective potential for the future is favorable.

there are few limits to the issues a health psychologist with vision, dedication, and persistence can address [but] the responsibility for forging new pathways lies on the shoulders of the entire health psychology community. (Altman & Cahn, 1987, pp. 240±241)

However, as psychologists know only too well, there is often a large gap between intention and behavior. We need to use the strategies identified by psychologists to bridge this gap, in the development of our own future, and we need to avoid the trap of the individualism that has sometimes been associated with psychologists. Instead, we should plan, organize, and act as a collective. ACKNOWLEDGMENTS Susan Michie is supported by the Wellcome Trust. The author thanks Louise Earll and Barbara Wren for comments on an earlier draft of this, and Barbara Wren for contributing the section on her consultancy work in primary care. 8.06.8 REFERENCES Altman, D. G., & Cahn, J. (1983). The rest of the challenge: Position statement on employment opportunities. Health Psychology, 2(5 suppl): 119±122. Altman, D. G., & Cahn, J. (1987). Employment options for health psychologists. In G. C. Stone, S. M. Weiss, J. D. Matarazzo, N. E. Miller, J. Rodin, C. D. Belar, M. J. Follick & J. E. Singer (Eds.), Health psychology: A discipline and a profession (pp. 231±244). Chicago: University of Chicago Press. Belar, C. (1991). Professionalism in medical settings. In J. J. Sweet, R. H. Rozensky, & S. M. Tovian (Eds.), Handbook of clinical psychology in medical settings (pp. 81-92). New York: Plenum. Belar, C. (1995). In B. Johnston, R. G. Frank, C. Belar, S. Berk, L. A. Bielianskas, E. D. Bigler, B. Caplan, T. R. Elliot, R. L. Glueckanf, R. M. Kaplan, J. S. Kreutzer, C. A. Mateer, D. Patterson, A. E. Puerle, J. S. Richards, M. Rosenthal, M. Sherer, R. Shewchuk, L. J. Siegel, & J. J. Sweet (Eds.), Psychology in health care: Future directions. Professional Psychology: Research and Practice, 26(4), 341±365. Bor, R., & Miller, R. (1991). Internal consultation in health care settings. London: Karnac.

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Boyce, R. (1991). Hospital restructuringÐthe implications for allied health professions. Australian Health Review, 14, 147±153. British Medical Association (1992). Stress and the medical profession. London: Author. Brunning, H., Cole, C., & Huffington, C. (1990). The change directory: Key issues in organisational development and the management of change. Leicester, UK: British Psychological Society. Campbell, D., Draper, R., & Huffington, C. (1989). A systemic approach to consultation. London: DC Publishing. Chalmers, I., & Altman, D. G. (1995). Systematic reviews. London: BMJ Publishing Group. Eardly, A. (1988). Patient worries about radiotherapy. Evaluation of a preparatory booklet. Psychology and Health, 2, 79±89. Edwards, J. D., & Holmgren, R. L. (1979). Some prerequisites for becoming a ªreallyº applied, nonacademic, social psychologist. Personality and Social Psychology Bulletin, 5, 516±523. Elliott, T. R., & Shewchuk, R. (1995). In B. Johnston, R. G. Frank, C. Belar, S. Berk, L. A. Bielianskas, E. D. Bigler, B. Caplan, T. R. Elliot, R. L. Glueckanf, R. M. Kaplan, J. S. Kreutzer, C. A. Mateer, D. Patterson, A. E. Puerle, J. S. Richards, M. Rosenthal, M. Sherer, R. Shewchuk, L. J. Siegel, & J. J. Sweet (Eds.), Psychology in health care: Future directions. Professional Psychology: Research and Practice, 26(4), 341±365. Everly, G. S. (1986). An introduction to occupational health psychology. In P. A. Keller & L. G. Ritt, (Eds.), Innovations in clinical practice: A source book (Vol. 5). Sarasota, FL: Professional Resource Exchange Inc. Huffington, C., & Brunning, H. (1994). Internal consultancy in the public sector: Case studies. London: Karnak. Hutchcroft, S., Snodgrass, T., Troyan, S., & Wares, C. (1984). Testing the effectiveness of an information booklet for cancer patients. Journal of Psychology and Oncology, 2(2), 73±83. Jansen, M. A., Methorst, G. J., & Kerkhof, A. J. F. M. (1991). Health psychology in international perspective: Summary and thought for the future. In M. A. Jansen & J. Weinman (Eds.), The international development of health psychology (pp. 165±171). Reading, UK: Harwood. Jansen, M. A., & Weinman, J. (Eds.) (1991). Introduction. The international development of health psychology (pp. vii±viii). Readiing, UK: Harwood. Johnston, M. (1994). Current trends. The Psychologist, 7(3), 114±118. Johnston, M., Gilbert, P., Partridge, C., & Collins, J. (1992). Changed perceived control in patients with physical disabilities: An intervention study with patients receiving rehabilitation. British Journal of Clinical Psychology, 31(1), 89±94. Johnston, M., & Pollard, B. (1991). Length of nurses' working shift: Stress and information processing. In G. Biondi (Ed.), Psychology in hospital: Models of intervention (pp. 101±105). Rome: NES. Johnston, M., & Weinman, J. (1995). Health psychology. In Professional psychology handbook (pp. 61±68). Leicester, UK: BPS Books. Johnston, M., Weinman, J., & Wright, S. (1995). Measures in health psychology: A user's portfolio. Windsor, UK: NFER±Nelson. Kaplan, R. M. (1994). The Ziggy theorem: toward an outcomes-focused health psychology. Health Psychology, 13(6), 451±460. Madden, S., Johnston, M., & Parbhoo, S. (1994). Evaluation of women's worries and the effects of a preparatory booklet for patients attending a breast clinic. The Breast, 3, 169±172. Marteau, T. M., Kidd, J., Cuddeford, L., & Walker, P.

(1996). Reducing anxiety in women referred for colposcopy using an information booklet. British Journal of Health Psychology, 1, 181±189. Marteau, T. M., Sowden, A. J., & Armstrong, D. (submitted). Implementing research findings into practice: Beyond the information deficit model. McAlpine, S., Abraham, C., & Davies, H. (1995). I. Promoting contraceptive use amonst young people: a brief review. II. Promoting sexual health interventions for young people: a brief revew. Reports for Tayside Health Board, Dundee, UK. Michie, S. (1992a). Evaluation of a staff stress management service. Health Manpower Management, 18, 15±17. Michie, S. (1992b). Reducing stress in NHS staff. Employee Counselling Today, 4, 4±7. Michie, S. (1993). The work of psychologists in the changing organisation of the NHS. Clinical Psychology Forum, 52, 27±29. Michie, S. (1996). Reducing absenteeism by stress management: Valuation of a stress counselling service. Work and Stress, 10(4), 367±372. Michie, S., & Cockcroft, A. (1996). Overwork can kill. British Medical Journal, 312, 921±922. Michie, S., Johnston, M., Cockcroft, A., Ellinghouse, C., & Gooch, C. (1995). Methods and impact of health screening for hospital staff. Journal of Organisational Behaviour, 16, 85±92. Michie, S., & Ridout, K. (1990). Stress management for nurses. Clinical Psychology Forum, 26, 16±19. Michie, S., Ridout, K., & Johnston, M. (1996). Stress in nursing and patients' satisfaction with health care. British Journal of Nursing, 5(16), 1002±1006. Michie, S., Rosebert, C., Heaversedge, J., Madden, S., & Parbhoo, S. (1996). The effects of different kinds of information on women attending an out-patient breast clinic. Psychology, Health and Medicine, 1, 285±296. Michie, S., & Sandhu, S. (1994). Evaluating stress management in medical students. Medical Education, 28, 528±533. Ovretveit, J. (1992). Therapy services: Organisation, management and autonomy. Reading, UK: Harwood. Ovretveit, J., Brunning, H., & Huffington, C. (1992). Adapt or decay: Why clinical psychologists must develop the consulting role. Clinical Psychology Forum, 46, 27±29. Partridge, C. J., & Johnston, M. (1989). Perceived control of recovery from physical disability: Measurement and prediction. British Journal of Clinical Psychology, 28(1), 53±59. Pion, G. M. (1991). A rational human resources agenda for psychology: The need for a broader perspective. Professional Psychology: Research and Practice, 22, 449±455. Prochaska, J. O., & DiClemente, C. C. D. (1982). Transtheoretical therapy: Toward a more integrative model of change. Psychotherapy: Theory, Research and Practice, 19(3), 276±88. Siegel, L. J. (1995). In: B. Johnston, R. G. Frank, C. Belar, S. Berk, L. A. Bielianskas, E. D. Bigler, B. Caplan, T. R. Elliot, R. L. Glueckanf, R. M. Kaplan, J. S. Kreutzer, C. A. Mateer, D. Patterson, A. E. Puerle, J. S. Richards, M. Rosenthal, M. Sherer, R. Shewchuk, L. J. Siegel, & J. J. Sweet (Eds.). Psychology in health care: Future directions. Professional Psychology: Research and Practice, 26(4), 341±365. Smith, J. A., Harre, R., & Langenhove, L. V. (1995). Rethinking methods in psychology. London: Sage. Stone, G. C. (1979). Health and the health system: a historical overview and conceptual framework. In G. C. Stone, F. Cohen, & N. E. Adler (Eds.), Health psychology: A handbook: theories, applications, and challenges of a psychological approach to the health care system. San Francisco: Jossey-Bass. Stone, G. C. (1982). Health Psychology, a new journal for a

References new field. Health Psychology, 1, 1±6. Stone, G. C., Cohen, F., & Adler, N. E. (1979). Health psychology: A handbook: theories, applications, and challenges of a psychological approach to the health care system. San Francisco: Jossey-Bass. Wallace, L. M. (1984). Psychological preparation as a

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method of reducing the stress of surgery. Journal of Human Stress, 10(2), 62±77. Weinman, J. (1991). Determinants of health psychology's development. In M. A. Jansen & J. Weinman (Eds.), The international development of health psychology (pp. 159±164). Reading, UK: Harwood.

Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.07 Teaching and Training Other Health Disciplines HELEN R. WINEFIELD University of Adelaide, SA, Australia 8.07.1 INTRODUCTION

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8.07.2 KEY HEALTH PROFESSIONS

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8.07.2.1 8.07.2.2 8.07.2.3 8.07.2.4 8.07.2.5 8.07.2.6 8.07.2.7 8.07.2.8 8.07.2.9

173 174 174 174 174 174 175 175 175

Nursing Medicine Medical Social Work Physiotherapy/Physical Therapy Occupational Therapy Pharmacy Dentistry Speech Pathology/Therapy Other Health-related Occupations

8.07.3 MAJOR GOALS OF HEALTH PSYCHOLOGY TEACHING

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8.07.3.1 Improved Healthcare 8.07.3.1.1 Measurement of quality of care 8.07.3.2 Health and Well-being of the Health Workers 8.07.3.3 Knowledge and Skills from Health Psychology Input 8.07.3.3.1 Communication skills 8.07.3.3.2 Understanding of and respect for scientific enquiry 8.07.3.3.3 Appropriate patterns of practice

175 175 176 177 177 178 179

8.07.4 FORMAT AND METHODS OF TEACHING

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8.07.4.1 Lectures or Practice? 8.07.4.1.1 Lectures 8.07.4.1.2 Structured observations of practice 8.07.4.1.3 Small (tutorial) group learning 8.07.4.1.4 Learning via the Internet 8.07.4.2 Integrated, Problem-based Learning 8.07.4.3 Assessment 8.07.4.4 Interdisciplinary Teaching 8.07.4.5 Applying the Principles of Permanent Behavior Change 8.07.5 CONTENT

179 180 180 180 180 180 181 181 181 182

8.07.5.1 Topics About Health and Illness 8.07.5.2 Topics About the Interaction Between Health Professional and Patient 8.07.6 IMPLICATIONS AND CONCLUSIONS

183 183 183

8.07.6.1 Needed Attributes of Health Psychologists who Teach Other Professions 8.07.6.2 Needs of Health Psychologists who Teach Other Professions 8.07.6.3 Consequences for Health Psychology of Teaching Other Professions 8.07.7 REFERENCES

183 184 184 185

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8.07.1 INTRODUCTION In addition to the assessment, treatment, and prevention of health problems as described in other chapters of this volume, health psychologists have a valuable role to play in teaching and training members of other health-related disciplines. This chapter will outline the possibilities, some of which, such as communication skills teaching, are being applied widely in health education internationally, while others such as encouraging surveillance of the occupational health of health workers, remain underdeveloped. This chapter begins by introducing the key health professions other than psychology, and briefly reviewing the psychological content of their curricula (Section 8.07.2). Section 8.07.3 then describes the desirable outcomes of health psychology within training for health professionals, in terms of three broad goals: improving the health of the community, improving the health and well-being of health workers, and imparting relevant knowledge and skills to health workers. The chapter then reviews the format and methods which seem to be most effective in such teaching (Section 8.07.4). Traditional lecture and tutorial methods need extension for professional training, and health psychology teaching is characterized by multidisciplinary collaborations. Section 8.07.5 lists the health psychology topics likely to be widely useful to health professionals, and therefore recommended for inclusion in their educational preparation. Finally, Section 8.07.6 raises some wider issues about what qualities are needed in the health psychologists who do such teaching, what their own needs are, and what the consequences of sharing our knowledge may be for health psychology.

8.07.2 KEY HEALTH PROFESSIONS This chapter will concentrate on the health disciplines which receive preregistration training in universities, including institutions of higher education which were formerly known as colleges of advanced education, polytechnics, or institutes of technology. Other disciplines which promise health care but for which training generally occurs outside universities include chiropractice, naturopathy, hypnotherapy, aromatherapy, and so on. While these ªalternativeº treatments sometimes win acceptance from doctors and nurses who recommend them to their patients, little information is publicly available about their training curricula or

assessment methods. However, at least some of the material in this chapter seems likely to be applicable to them too. Many health professions provide continuing education for their members after entry to the workforce, in the form of workshops, seminars, conferences, and journals, either on a voluntary basis or in a formal way overseen by registration or professional bodies. With recognition of the ever-faster expansion of knowledge, and acknowledgement that undergraduate instruction cannot suffice for a life-long practicing career, we may expect that some form of regulated continuing professional education will become more rather than less common. Thus postregistration health psychology teaching and training seems likely to increase in extent in the relatively near future. Everything said below about mutual collaboration between health psychologists and members of the profession concerned, applies with even greater force to postregistration teaching. A great deal of variability exists in the methods and content of teaching health psychology to different sets of students. When we multiply the variations within different professions, undergraduate vs. postgraduate courses, teaching institutions, cities and countries, it is clearly unrealistic for a chapter such as this to give a detailed account of hours spent, methods used and course content in every case. Rather the goal here will be to convey a flavor of what aspect of health psychology are taught in the nonpsychology disciplines, largely based on a review of published textbooks. Learning via the Internet, which has been predicted to change academic methods radically, will be discussed later (see Section 8.07.4.1.4). Published teaching materials are probably only a small proportion of those in use. The existence of a textbook indicates that somebody, perhaps an individual, probably a curriculum committee but certainly a publisher, perceived a need for that educational resource. However every teacher is well aware that published materials may not accurately represent the examinable content of the course, and even less do they reflect the methods used to teach it. Another major problem for the comprehensiveness of a review such as this is the fact that we have limited understanding of the relationship between the teaching provided, and what students learn. Doubtless the teachers' credibility, skills, knowledge, enthusiasm, and similar factors mediate how the teaching is received and therefore what impact it may have on the later professional practice of graduates. Apart from some comments on when and by whom teaching should occur (in Section 8.07.4 ), such issues are beyond the scope of this chapter,

Key Health Professions but do need systematic attention and research by educators. The main health professions described below are not in order of status within the health care industry, nor in order of the competition for places and thus the prior academic qualifications of the students. Current numbers of Australian students have been chosen as an ordering principle. The health education system in Australia is very similar to the British, and Australian health professionals are found all over the world. While the number of students may not be proportional to the number of practitioners, it is reasonable to use student numbers in a chapter on training because the great bulk of formal training occurs before professional registration and practice. Table 1 shows the numbers of health and social work students who were enrolled in higher education in Australia in 1995. An average of 6.5% of students across health disciplines came from overseas and were paying full fees, with the highest proportions being in pharmacy (14%), medicine (12%), and dentistry (11%). Overseas students mostly speak English as a second language, and language-rich subjects such as psychology need to provide extra support and language tuition to help them succeed. The most effective support includes discussion of cultural assumptions as well as language help (Ballard & Clanchy, 1991; ChurHansen & Barrett, 1996). Asian and European cultures have different norms and expectations about health-relevant behavior, challenging what has sometimes been an unself-conscious Anglocentrism in health psychology. In health and health care, cultural differences in beliefs and practices need to be understood by teachers and trainers as well as by practitioners. To a less marked extent the same point applies to students of different social class backgrounds within the same language group. 8.07.2.1 Nursing In terms of student and practitioner numbers, the discipline of nursing is the dominant healthcare profession: there were three times as many nursing students as medical students (see Table 1). Nursing education has established itself in Australian universities since the early 1980s in contrast with the previous apprentice-style, bedside teaching methods (McCue & White, 1983). A recent review of nurse education concluded: The need now is to move beyond the era of the transfer [of nursing to higher education] . . . [to] the development of professional practice, the growth

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Table 1 Student enrollments in health by field of study, higher education, Australia, 1995. Field of study Basic nursing Postbasic nursing Medicine Medical science Medical radiography Medical technology Dentistry Dental therapy Nutrition and dietetics Optometry Pharmacy Podiatry Rehabilitation Other rehabilitation Occupational therapy Physiotherapy Speech pathology/audiology Health support Health administration Health counseling Health surveying Health science and technology Health sciences Ð other Health support Ð other Health Ð general Total health Social work

1995 enrollments 23 228 10 209 10 471 1973 1549 1153 1408 37 671 786 2078 352 584 512 2378 3037 1235 1841 2276 759 760 1060 1280 660 1840 72 137 6050

Source: Department of Employment, Education, Training & Youth Affairs, Canberra.

of nursing as an academic discipline, and the future contribution of education and research to the quality of nursing care. (Reid, 1994, p. 341)

This review identified as core curriculum: basic strands in the areas of medical/surgical nursing, community health nursing, and mental health nursing, for individuals across the lifespan in institutional and noninstitutional settings [including] communication, primary health, behavioral sciences, biological sciences and broadbased, general health care subjects. (Reid, 1994, pp. 170±172)

Doctor±nurse relationships have been described by sociologists and anthropologists (e.g., Campbell-Heider & Pollock, 1987) but there is now an interest among nurses themselves in understanding the political dimensions of health care and in improving community health through active advocacy (Gray & Pratt, 1992). The establishment of doctoral training programs in nursing which include coursework and fieldwork in addition to research training is

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intended to assist nurses who seek careers in consultancy, management, and policy making (Pearson, 1996). In the USA there is a very wide choice of masters and doctoral programs for nurses. At the undergraduate level there is longstanding and continuing interest in the psychological aspects of nursing (Byrne & Byrne, 1992; Hall, 1982; McGhie, 1973, Paton & Brown, 1991; Payne & Walker, 1996). One of the few texts to identify itself specifically as health psychology for nurses (Niven, 1994) includes in its preface an explicit articulation of a crucial issue in health psychology training for all nonpsychologistsÐnamely what is the most desirable framework to adopt? Whereas early texts in nursing as in other health disciplines tended to adopt the framework of what aspects of psychology might be relevant to health care, Niven adopted instead the framework of a psychology of health. Taking health rather than psychology as the primary focus need not in fact result in vastly different contents from those of the more traditional approach (although they will be differently arranged and presented), but seems likely to have the important pedagogic advantage of being more attractive and credible to students (see Section 8.07.4).

medicine with its interests in cardiovascular disease, oncology, and chronic pain (Wise, 1986). Some clinical health psychologists spend their time in the delivery of services to individual patients, but others such as occupational health psychologists work in ways more congruent with public health (Quick, 1996). 8.07.2.3 Medical Social Work The 1991 Australian census indicated that 35% of social workers will work in health settings (Martin, 1996), thus justifying the inclusion of this profession here. This profession shows large national differences in its organization; in the USA, for example, social workers much more often practice autonomously than in Britain and Australia. Teaching materials tend to have a strong practice orientation (Danbury, 1994; James & Vinson, 1989; Shulman, 1993), although Thompson (1995) has argued in favor of integrated theory and practice. Developmental and social psychology seem to have been most valued, but social workers in medical settings may learn to welcome health psychology input. 8.07.2.4 Physiotherapy/Physical Therapy

8.07.2.2 Medicine Medical courses have included psychological content, often under titles such as ªbehavioral science,º ªmedical psychology,º and ªbehavioral medicine,º for many years now (DiMatteo, Friedman, & Robin 1982; Hetherington, Miller, & Neville, 1964; Pomerleau & Brady, 1979; Rachman, 1977; Stoudemire, 1994; Wedding, 1995; Weinman, 1987; Winefield & Peay, 1991). Health psychologists have seized the opportunity to teach medical students and thereby develop relationships with medical practitioners and engage in collaborative research (Winefield, 1991). While the technological advances of the post-World War II period have fostered a strong emphasis and high prestige within medicine for pharmaceutical, surgical, and diagnostic techniquesÐin general the ªbioº element within the ªbiopsychosocialº model of health care (Engel, 1977)Ðhealth psychology with its focus on behaviors, beliefs, and feelings in relation to health and illness, adds the balance of a multivariate and holistic perspective on health care and health promotion. Just as clinical psychology has experienced border disputes with the medical specialty psychiatry, health psychology seems most likely to compete with consultation±liaison psychiatry, the clinical derivative of psychosomatic

This discipline, like others traditionally seen as ªadjunct,º ªallied,º or even ªparaº in relation to medical services, was once taught using an apprenticeship model within the work (usually hospital) setting. Physiotherapists use exercise, manipulation, and physical interventions such as heat and ultrasound to treat problems of pain, restricted movement, and the consequences of injury or aging. An early textbook by Dunkin (1981) focused on learning, individual differences, and interpersonal relations, and encouraged students to search the literature to follow up their interests. 8.07.2.5 Occupational Therapy The practice of this discipline seeks to foster the health benefits of occupation, in the sense of purposeful activity, especially for persons with psychiatric, intellectual or physical disabilities. While virtually theory free in the past, the profession recognizes a need to identify and evaluate its skills and to prepare practitioners for work in a variety of settings (Fransella, 1982; Kielhofner, 1992). 8.07.2.6 Pharmacy The Report of the Study Commission on Pharmacy (1975) found an imbalance in the

Major Goals of Health Psychology Teaching curriculum of the day, with too much attention being given to drug products and their effects and too little to ªhuman behavior, cultural determinants, health service systems and their economics. . . . Needed and optimally effective drug therapy results only when both drugs and those who consume them are fully understoodº (pp. 126±127). Wertheimer and Smith (1989) aimed to redress this imbalance, including readings on topics such as the patient's view of the illness, compliance, choices of prescribed and nonprescribed drugs, tranquillizers and social control, and ethics and informed consent. Public attitudes to medicines, which seem to be increasingly ambivalent (Vuckovic & Nichter, 1997), need to be understood by many health professionals in addition to pharmacists.

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health psychology courses need to be geared sensitively to the practice modes, traditions, and expectations of practitioners of each discipline. For example other professions vary in whether they see their discipline as a science or a craft, how independently they expect to practice, and where practice usually occurs, as well as in the academic achievement levels and backgrounds of incoming students. In this section of the chapter, however we will canvass some broad goals which could apply to all health psychology input. Section 8.07.6 will address the controversial issue of what the consequences for health psychology might be, of ªgiving psychology awayº to other disciplines. 8.07.3.1 Improved Healthcare

8.07.2.7 Dentistry Textbooks on the psychological aspects of dental practice have been available for some time (e.g., Ayer & Hirschman, 1972; Cinotti, Grieder, & Springob, 1972). Obvious topics of interest include dental anxieties and phobias, bruxism, oro-facial pain and compliance with self-care or orthodontic instructions. 8.07.2.8 Speech Pathology/Therapy Disorders of oral communication whether due to childhood lack of skill development or to loss of skills after stroke or head injury occupy speech pathologists, who treat them using graded exercises. Purser (1982) was an early contributor to their understanding of developmental and social psychology and behavior change. 8.07.2.9 Other Health-related Occupations Various forms of medical scientist, and support professions such as radiography, dietetics, podiatry (chiropody), and health administration are also taught in universities. It appears that their curricula are task-focused and in some cases their direct service roles limited; where health psychological input is required it may well be taught using materials originally prepared for other disciplines, or specific to the course and not commercially available.

Most teachers, trainers, and curriculum committees would probably agree that the main purpose of including health psychology is to improve the quality of healthcare which students are later able to deliver. In Section 8.07.3.3, I shall try to distinguish some superordinate skills of the well-taught and welltrained health professional, to which health psychology has contributed. A secondary goal of course organizers might be for health psychology itself to gain recognition and respect amongst other health professions, and for health psychologists to develop useful professional networks and access to research opportunities by being visible and successful within the training institutions. A large practical and conceptual obstacle to devising a successful health psychology course, in terms of knowing that it is contributing to improved healthcare, has been the lack of markers or indicators for quality of health care practice. When no data are available about how successful various practice interventions are, either in improving patients' quality of life or in reducing their symptoms and death rate, the role of health psychology knowledge and skills (as with every other component of the students' learning experiences) becomes difficult to judge. Presently there is increasing awareness of the need for health professions to develop appropriate outcome measures, to validate them, and to begin the process of exploring their antecedents (Kaplan, 1994a). 8.07.3.1.1 Measurement of quality of care

8.07.3 MAJOR GOALS OF HEALTH PSYCHOLOGY TEACHING The health psychology input for health profession students does not need to be uniform in format or content across courses. Indeed

Life expectancy has improved in developed countries following the great public health reforms of clean water, sanitation, public education about hygiene, nutrition, and prevention; and accessibility of antenatal care,

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child health screening, and emergency services. However, mortality rates are insufficiently sensitive as outcome measures of many health care interventions, particularly given the chronic nature of much illness in developed countries. Ongoing measures of health are needed which will reflect changes over time in both physical and psychological dimensions. Health-related quality of life (QOL), a concept which embraces affective and social well-being, functional capacities, and lack of symptoms, is an outcome measure well-suited to the evaluation of the effectiveness and cost-effectiveness of health care (Kaplan, 1994a, 1994b; Ware, 1995). An example of the latter analysis is that some preventive and educational interventions have much greater payoff in terms of ªcost per well year,º than more specialized surgical treatments. Specifically, costs per well year in 1991 US dollars of seat belt laws = 0, of smoking cessation counseling = 6463, and of coronary artery bypass graft for heart disease = 662 835 (Kaplan, 1994a). The development and standardization of QOL measures is widely agreed to be a top priority project for health psychology (Sarafino, 1994; Weinman, 1990). Patients are often forced to rely at least in the short term, on interpersonal features of the caredelivery interaction to assess its value. Some of these ªprocessº features have been shown to correlate with beneficial health outcomes although the relationship is not straightforward (Kaplan, Greenfield, & Ware, 1989; Stewart, 1995). ªThe patient is now . . . to some degree an adjudicator of service quality . . . [which] means that the doctor's perspective on what is valuable in this interaction . . . is marginalizedº (Fairhurst & May, 1995, pp. 389±390). Patient satisfaction with care is a proximal measure of quality of care but cannot be accepted as adequate by itself. Apart from the likely response-biases when seeking feedback from people who may need help again soon, there are problems in accepting patients' definitions of what they need. Some patients may have unrealistic expectations of what can be achieved, or of how much time the health worker can devote to their case. Others may feel most secure only after numbers of extra diagnostic tests, investigations, and treatments which are regarded as unnecessary and excessive by their health carers, and/or by the insurers and administrators who oversee health care costs (Aharony & Strasser, 1993; Pickering, 1993; Williams, 1994). Another difficulty is that patients' satisfaction with an episode of healthcare may change over time, and not be validly captured by a questionnaire after a single consultation (Avis, Bond, & Arthur, 1997).

Nonetheless, there are compelling arguments for seeking evaluative information from users of health care services. In industrialized countries the individual consultation between a patient and a general practitioner, for example, only rarely results in dramatic improvements in the health of the person concerned (Winefield, Murrell, & Clifford, 1995). Often, patient satisfaction with the experience of being cared for may be the only measurable outcome of a health care interaction, but this sense of being cared for and valued by credible experts can have powerful nonspecific benefits (Shepherd & Sartorius, 1989). An example is the finding by Fitzpatrick, Hopkins, and Harvard-Watts (1983) that headache sufferers were more likely to report fewer and less severe headaches one year after referral to a neurology clinic, regardless of what, if any, medication was prescribed, if they had felt satisfied immediately after the consultation. The popularity of alternative healthcare practitioners with the public has been attributed to their willingness to spend time, show interest, and develop a caring personal relationship with the ªclientº; these factors plus the shared rationale for illness and the confident prescription of healing activities are also common to nonmedical healers in other cultures (Frank, 1989). 8.07.3.2 Health and Well-being of the Health Workers A secondary goal of including health psychology in courses for other professions might be seen as preparing them not only to deliver health care to patients/clients, but to maintain their own health and well-being while doing so. The high turnover in some health professions, particulary nursing where there are many back injuries, and the reports of high job stress, career dissatisfaction, burnout, and associated problems of alcoholism, drug abuse, and marital strains (Allen, 1994; Howell & Schroeder, 1984), provoke consideration of the need for some preventive educational preparation. Students often enter health courses when quite young (many are teenagers direct from secondary school, in Australia and Britain), and with relatively little life experience. The higher the academic qualifications for entry, it seems the less opportunity students have had to mix with people outside their own peer group, people of different ages, social class and cultural background, and to explore their own talents and interests beyond study. It is not surprising therefore that the demands of tertiary studyÐ often combined with financial pressures and personal development issues around independence, sexuality, and vocationÐin combination

Major Goals of Health Psychology Teaching with the exposure to illness, suffering, and death, can be stressful for students (Ashton & Kamali, 1995; Firth-Cozens, 1987; Simpson & Budd, 1996). The role models available to students in clinical settings may or may not be positive examples of healthy coping. There is a delicate balance between maintaining a degree of professional detachment which facilitates action but still expresses care and respect for the patient, and an emotional distance which patients and professionals alike find unsatisfying and depersonalizing. Getting this balance right is possibly the hardest task in professional training, or certainly the most psychologically challenging aspect, and clinical health psychologists may have valuable roles as both teachers and therapists. After graduation, other work-related pressures are added. Autonomy, a traditional reason for job satisfaction in medicine for example, is perceived as being eroded through the intrusion of third parties such as insurers, administrators, and managers (Allen, 1994; Burke, 1996; Siegler, 1993). An awareness of the psychological hazards of healthcare is the first requirement for prevention, so that affected individuals do not castigate themselves as weak and inadequate. This awareness can be raised during undergraduate years and may subsequently need reinforcement with stress management interventions (Bunce & West, 1996; Midence, Gregory, & Stanley, 1996; Quick Murphy, & Hurrell, 1992). 8.07.3.3 Knowledge and Skills from Health Psychology Input In this section I shall review some general categories of health psychology knowledge and skills which, in the context of the restrictions described above on how to recognize quality care, could be expected to equip students for their future work in health professions. First it is relevant to draw the distinction between ªknowledgeº which is acquired through teaching, and ªskillsº which are acquired through training. While the distinction cannot be rigidly applied, it usefully indicates different types of learning and the activities meant to promote them. Traditionally, health students have acquired knowledge in an abstract way through lectures and readings, assessed through exams, then proceeded to acquire clinical skills though supervised ªhands onº practice, assessed to competency standards by experienced practitioners. The knowledge acts as a foundation for the skills but also goes further to give students a general appreciation of the theoretical and conceptual roots of their

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discipline and its methods of accumulating further knowledge. It is also meant to equip students to read critically, to continue their education life-long, and possibly to contribute to the knowledge base of the discipline themselves by engaging in research. Skills have the more immediate practical value of equipping students to deal effectively with their work tasks. As well as being capable of giving injections, bandaging, and a host of other physical procedures, health professionals have to develop cognitive skills of clinical decision-making and time management. They must learn to respond calmly and automatically in distressing or life-threatening situations and to cope with behaviors, injuries, or disfigurements which untrained members of the public would find overwhelming. Skills can also become obsolete, and re-training or revision of them is then needed. While each health profession has a more or less specific knowledge base and distinctive skills, health psychology can contribute important general elements which are identified below. Each of them could usefully become a strand of instruction, taking different forms with progression through the course (see Section 8.07.4), but with continuity throughout it. More specific topics are listed in Section 8.07.5. 8.07.3.3.1 Communication skills Every health practitioner needs to develop effective communication skills. These include being able to access information from the patient which is relevant to diagnosis and treatment, to explain matters using comprehensible terms (including written materials) and to check patient understanding, to encourage patient questions, to listen attentively, to communicate respect and care, and to persuade service-recipients to follow recommended patterns of self-care after the consultation ends (whether taking medications, changing health habits, making a follow-up appointment, etc.). These skills were identified largely through research into the outcomes of psychotherapy (Greenberg & Pinsof, 1986; Stiles, Shapiro, & Elliott, 1986; Strong & Claiborn, 1982) and acquiring them is a clear case of behavioral training via graded steps. A great deal is now known about teaching such skills (Cushing, 1996; Byrne & Byrne, 1996; Dickson, 1989; Egan, 1994; Evans, Stanley, Mestrovic, & Rose, 1991; Froelich, Bishop, & Dworkin, 1976; Kimberlin, 1989; Winefield, 1992). To be most effective, the communication process will often need to take into account how patients' responses and needs are affected by

.

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their psychosocial development, age, education, level of anxiety and cultural background. Thus flexible communication skills need sound psychological foundations. Skilled communication increases patient satisfaction and compliance, reduces the rates of malpractice litigation, and achieves nonspecific (placebo) benefits, all of which may additionally contribute to the health worker's job satisfaction. Public health benefits can follow from targeted communications or information campaigns with health-promoting or educational messages. These require rather different sets of skills from the one-to-one interactions which are the present focus. Health workers also need skills in communicating with their colleagues, superiors (clinicians, managers, and administrators), members of related disciplines, and often with the relatives or friends of the designated patient. Less commonly but just as critically, health professionals may need to communicate effectively with politicians, accountants, and other decision-makers. So far none of these skills has received as much attention as the skills for communicating with patients, yet they may prove vital in securing community support and resources for effective health care to proceed. 8.07.3.3.2 Understanding of and respect for scientific enquiry It does not need a high-flying mathematical background (though some health students have that) to comprehend the basic concepts of experimental design such as matched control groups, random allocation to treatment or control groups, standardized outcome measures, and credible lengths of follow-up. Also practitioners of every discipline need to be aware of the nonspecific or placebo influences on healing which are independent of disciplinespecific treatment techniques, whether pharmacotherapy, spinal manipulation, or craft activities. The psychological and therefore physical benefits of trust, hope, a sense of control and a sense of self-worth are relevant both to ªfeeling betterº after contact with health professionals and also to the whole range of self-care (compliance) and preventive activities by the patient. If students do not learn about the need for untreated and placebo control groups and about how to evaluate claims of treatment efficacy, there is a risk of inflated beliefs about the impact of their own discipline's specific effectiveness (an example perhaps being claims for the rehabilitation of torture victims by physiotherapy (Bloch & Moller, 1990). Evidence-based healthcare, which means using

the best techniques available according to pooled high-quality information, will increasingly be demanded by health-management organizations as well as by health professionals concerned to offer the best care (Friedman, Sobel, Myers, Caudill, & Benson, 1995; Sackett, Rosenberg, Gray, Haynes, & Richardson, 1996). The access to information offered by the electronic revolution in information technology will help, but the attitude of curiosity and willingness to learn remain vital. Confidence in one's own capacity to evaluate claims and remain an active self-educator, as well as to work with collaborators from a variety of disciplinary backgrounds, depends on this basic ability to assess the evidence±±an ability which is not specific to health psychology but which psychologists have great experience and expertise in imparting (MacLeod & McCullough, 1994). The psychologist's skills in research design and methodology, standardized measurement, and statistical analysis are increasingly valued by other health disciplines, as the sophistication of their research rises. Even where health students cannot become expert in these matters themselves, they can acquire a respect for the scientific approach to understanding human behavior, and the cognitive tools to ask critical questions of their own research literature and other sources of claims about new treatments. There is a permanent gain from having learned how to appraise the flood of information to which students are likely to be exposed during their working lives, and to develop tools for assessing its value and meaning. Once data have been collected and analyzed, and even after a scientific paper has appeared in a prestigious journal, much remains to be done to translate the findings to improve community health and to ensure the sustainability of interventions after the researchers leave (Altman, 1995). Action research principles (Greene, 1988; Hart & Bond, 1995; Whyte, 1991) take seriously the obligation of researchers to ensure visibility of their work to decision-makers. Often this involves collaborating actively with key stakeholders from the community in order to gain access to subjects and measurements, as well as help in publicizing the results and ensuring their conversion to policy (Altman, 1995). Another development within health psychology research which owes some impetus to health professions other than psychology, is the relatively recent interest in qualitative research methods (Patton, 1990; Waitzkin, 1990). Triangulation, the combination of quantitative and qualitative approaches in the same investigation can be extremely fruitful, as shown for example

Format and Methods of Teaching in recent studies of occupational stress and health in a factory by Baker, Israel, and Schurman (1996), and of the complex determinants and consequences of patient participation in consultations by O'Brien and Petrie (1996). 8.07.3.3.3 Appropriate patterns of practice The ability to monitor one's own professional performance increases recognition of the limits of one's own disciplinary expertise, while failure to know one's limits is probably responsible for some of the worst cases of mismanaged health care efforts. With the typically crowded curriculum of health disciplines, the health psychologist teacher will be able to give practical training in communication skills but not in performing psychological diagnosis or managing behavior change. Gaining an understanding of the principles of the latter two areas will allow nonpsychologist professionals to make effective referrals to specialist services including from clinical health psychologists (Belar, Deardorff & Kelly, 1987; Winefield, 1996). The psychological awareness and the rejection of a narrow biomedical perspective which are the desirable outcomes of health psychology teaching, can be usefully applied by other professions not only to their interactions with patients but also to reflections on their own work practices. Health professionals need a sensitivity to the causes and effects of job stress in themselves and their colleagues, as the unproductiveness and danger inherent in dissatisfied, stressed, and impaired professionals is considerable (Jones et al., 1988; Keltner & Leung, 1995; Nuffield Provincial Hospitals Trust, 1996). All health workers should receive some educational preparation about the psychological as well as physical hazards to their safety and well-being, be capable of detecting signs of emotional exhaustion and other signs of strain in themselves and colleagues, and know how to proceed next. Occupational health psychologists may be valuable to develop job stress management interventions for health workers and more broadly, to help health professions to select, train and monitor their members to prevent occupational stress and its damaging consequences for both practitioners and patients (Landy, Quick, & Kasl, 1994). Governments may not welcome such initiatives if they lead to calls for shorter working hours (e.g., for junior, salaried doctors in training), better working conditions (e.g., not being forcibly sent to rural locations), more support from psychologists, and policies to reduce environmental and social causes of illness such as air and water pollution,

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unsafe workplaces, poverty, racism, unemployment, and unequal access to education and health care. 8.07.4 FORMAT AND METHODS OF TEACHING The following comments, about how health psychology should be included in courses for other professionals, need to be seen within the context described above of (i) different practice traditions and expectations in each profession, and (ii) difficulties in comparing the effectiveness of different teaching methods due to lack of definition of the desired outcome: high-quality health care. Beginning teachers may find they have little autonomy to decide course content or teaching methods, and that crowded student timetables allow little flexibility. The health psychologist will then need to gain the trust of other faculty members as in any relationship between a service provider and a client. There are no agreed formulae for ensuring student interest in and usage of health psychology material, as with other parts of their curriculum. In fact some students who enter their training with unrealistic ideas of the biological nature of health care, or who have limited tolerance for ambiguity, may be expected to find health psychology quite aversive. On the other hand some may find this holistic perspective a very welcome change from more molecular approaches. Evaluative feedback from students through anonymous ratings has many of the same problems as a measure of teaching quality as does patient satisfaction as a measure of health care quality. However, the very fact of staff showing concern about the students' response can raise their morale. 8.07.4.1 Lectures or Practice? Swerissen and Foreman (1991) advocate utilizing different teaching methods for the ªknowledgeº and the skills or ªapplicationº strands of health professional courses. One strand uses lectures to teach health-focused psychological knowledge including psychological factors in illness and recovery, behavioral risk factors, stress and pain, and reactions to illness, hospitalization, disability, and death. The other strand consists of training vocationally-relevant skills such as communication, research and program evaluation, case management, and compliance strategies, and is taught to competency standards with supervised practice in applied settings. This was the procedure explicitly accepted by Niven (1994).

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The second strand especially, is time- and laborintensive and demands a cadre of trained health psychologists to act as tutors and supervisors. Yet this is likely to be the component of the course which ensures student respect for and retention of the more theoretical knowledge. 8.07.4.1.1 Lectures Although listeners retain only a fraction of a lecture's content afterwards, the efficiency of one person presenting carefully selected material to a large class ensures the survival of this teaching technique in most establishments. On the whole, anything which increases the active participation of students, such as questions, short sessions of discussion (ªbuzz groupsº), or segments of audiovisual material, is likely to improve student attentiveness (Newble & Cannon, 1994). Guest lecturers who use clinical examples to illuminate the connections between their daily work and the course material, can also stimulate student interest. 8.07.4.1.2 Structured observations of practice Clinical settings can bewilder novice students, who often feel confused, superfluous, and embarrassed by their own lack of knowledge. Observing what a hospital is like, and how difficult it is to get information into and out of the system, can be valuable, but specific efforts to link observations to course material (for example, to report back on communication interchanges or behavior influence attempts) oblige students to process what they observe in the terms of psychological concepts. Debriefing may sometimes be required after the observation of negative models: entry-level students in particular have a capacity to identify with the patient and this furnishes powerful teaching opportunities. 8.07.4.1.3 Small (tutorial) group learning A group of up to a dozen or so students which meets regularly with a tutor who adopts an egalitarian role and who facilitates active problem-solving, can provide both social and educational benefits. Again, adding structure to the meetings rather than always relying on spontaneous discussion, can increase motivation by making participation in group meetings assessable. Assignments to be carried out between meetings can include small fieldwork projects (ask new parents about early attachment experiences, find examples of different types of human conditioning, monitor own heart rate and emotional state, etc.) or involve critically reviewing a pertinent journal article.

Demonstrations of diagnostic methods (including psychological ones), experiences of muscle relaxation training, and whole sessions devoted to independent group research on a topic for subsequent presentation are other useful activities. In early stages of skill acquisition, group demonstrations and rehearsals in a nonthreatening environment are a good way to begin. One very natural application of this is in communication skills training, where feedback from standardized patients and group support can help to overcome self-consciousness. Assessable practice tasks and cumulative learning across course-years (ªvertical integrationº) then build skills to the point of clinical competence. The peer supportiveness which can emerge from a group such as this, and the experience of cooperative mutually helpful work, can be valuable learning experiences in themselves (Lucero, Jackson, & Galey, 1985; Newble & Cannon, 1994). Although work in the health professions is often collaborative and interdisciplinary, too often competition rather than cooperation is the norm between students, and skills in building constructive team dynamics are frequently neglected (Rowe, 1996). 8.07.4.1.4 Learning via the Internet Computer Aided Learning (CAL) modules have been available for health students for some time, but the focus was initially on biological rather than psychosocial content. However, a consortium of British universities is now working to produce a set of CAL programs on behavioral science topics including pain, child development, clinical decision-making, changing health beliefs, managing stress, and quality of life measures. The Internet, an exponentially expanding source of information, opinion, and marketing efforts, promises to revolutionize access to knowledge for both students and teachers. Methods not only of instruction but of assessment will consequently be modified. It will be all the more important for students to learn how to evaluate claims and develop critical thinking skills, in order for them to exploit this medium effectively and with discernment. 8.07.4.2 Integrated, Problem-based Learning Just as education in nursing, physiotherapy, and some other disciplines is moving from the hospital to the classroom and increasing its scope and formality, medical education which has always been carried out in universities is in a sense moving in the reverse direction, with increased emphasis on ªproblem-based

Format and Methods of Teaching learningº (PBL) which blurs the old preclinical± clinical boundaries (Engel, 1992; Kaufman, 1985). In this approach a small group of students is presented by videotape, audiotape, or in writing with a carefully-constructed clinical case, and over the course of a series of meetings with their tutor, decide what information they need to solve the problems presented. Learning is thus thematically organized rather than discipline based, and is cumulative and learner directed. The goal is the development and enhancement of active reasoning and problem-solving skills rather than passive and superficial rote learning. Norman and Schmidt (1992), although finding no evidence that PBL improves content-free problem-solving, reported that it enhances transfer of concepts to new problems and of basic science to clinical problems, and that it enhances intrinsic interest and self-directed learning skills; a gain which is maintained. Dolmans, Gijselaers, Schmidt, and van der Meer (1993) investigated whether students miss out on crucial curriculum material when staff are not in control of what they learn, which is one frequent concern with PBL for students and teaching staff. They reported a 64% overlap between faculty objectives and the learning issues generated by students, and that students also generated relevant learning issues not expected by the faculty. Low overlap of student- and staff-determined content could be used to screen out or reformulate unsuitable problems. Part of the difficulty in evaluating the effect of a PBL curriculum in comparison to a more traditional format lies in the fact that students who are drawn to PBL may be different from the others. For example Cariaga-Lo, Richards, Hollingsworth, and Camp (1996) found that PBL entrants had higher admission test scores and were more self-reliant. Where the whole curriculum has become problem-based, Kaufman and Holmes (1996) found a favorable response to the change in students, tutors, and faculty staff, and identified four strategies which they believed had facilitated this acceptance, namely in-service training, resource support, feedback mechanisms, and participation in decision-making.

8.07.4.3 Assessment To be congruent with the goals of PBL, reasoned decision-making rather than recall should be built into the assessment procedure (Engel, 1992). Taking this to its logical conclusion implies some reliance on self-assessment of progress towards self-selected goals (Kaufman,

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1985; Lofgren & Lundahl, 1996; Ryan, Little, Smith, McMillan, & Hengstberger-Sims, 1992). However in practice a place for external assessments is likely to be maintained, due to the demands for credentials, public accountability and rank-ordered access to the most desirable training posts. Written examinations in health psychology lend themselves to essay-type answers rather than to multiple choice questions. Although the marking is relatively more labor intensive, the teacher has the satisfaction of knowing that students are practicing a valuable and relevant skill (written communication), and that such methods are supposed to foster deep as opposed to superficial learning. Assignments in fieldwork or independent research can also be presented for assessment in written form, thus reducing the proportion of the assessment which is derived from examination papers, and providing students with a souvenir of the course which they may find instructive to retain. A real acceptance of responsibility for their own learning by students, will hopefully reduce the temptations of plagiarism which becomes more and more difficult for teachers to detect. The assessment of practical skills needs other approaches. Segments of audio- or videotape can illustrate the student's level of competence in the early stages, for example, of communication skills acquisition, to be followed later by observed performance in standardized situations such as an objective structured clinical examination (Hodges, Turnbull, Cohen, Bienenstock, & Norman, 1996; Morrison, McNally, Wylie, McFaul, & Thompson, 1996). In general, feedback is the key to turning assessment experiences into learning experiences (Ende, 1983; Pendleton, Schofield, Tate, & Havelock, 1984; Prideaux, 1992). 8.07.4.4 Interdisciplinary Teaching Much of the input of health psychologists to teaching in other health disciplines occurs in cooperation with multidisciplinary teams. Therefore flexibility about other perspectives and a capacity for constructive teamwork can be presented to students as part of showing what psychology understands and can offer to teach. Material on roles, group dynamics, and the social psychology of power and influence is all relevant. 8.07.4.5 Applying the Principles of Permanent Behavior Change The psychosocial aspects of health and health care can seem irritatingly vague and complex

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to students who are more familiar with the clarities of the early stages of physical sciences. Health psychologists therefore need to make concrete for them how the psychosocial and physical are interdependent and how patient response to treatments is a subtle combination of both (as summarized for example by Cohen & Rodriguez, 1995). Because of its long association with education and its particular skills in understanding and producing behavior change, psychology should be well-placed to facilitate the permanent learning which is required. The aim is to achieve long-term learning which will last students not just to the end-ofyear exam but for the duration of their professional working lives. Hopefully they never develop undesirable habits such as adopting an exclusively biomedical focus or inattentive, unresponsive communication styles. However as with children beginning to smoke cigarettes, bad influences may emanate from peers and from prestigious models. To maintain learned changes over long periods of time, the natural agents of reinforcement must replace the psychologist; in other words other faculties than health psychology must encourage the application of health psychology knowledge and skills, and eventually the application of these in practice must become self-rewarding. Continuing on-the-job training or retraining (ªbooster sessionsº) are likely to be valuable, especially once gaps in knowledge and skills have become apparent to workers or their supervisors. The ªstages of changeº model (Prochaska, DiClemente, & Norcross, 1992) from the behavior change literature shows that it is not worthwhile to attempt behavior change with people who have not committed themselves to make the change. Analogously perhaps, there is no point in advocating health psychology learning until students see its relevance. Thus the ground needs to be prepared by showing its usefulness to their future work. In early stages of education careful planning is needed to do this within a largely nonpracticing environment for the students. A long-term perspective is needed when health psychologists begin to try to influence other professions; fortunately other health professions have shown receptivity to psychological perspectives for some time now. One way to facilitate the integration of health psychology knowledge and professional applications as early in the course as possible, is to engage in co-teaching with high-status practitioners of the discipline in question. Health psychologists working in clinical settings also present valuable teaching opportunities. Another way to encourage retention of under-

graduate learning is to make explicit its role as a foundation for health psychology components of postgraduate masters and doctoral courses and entrance exams for specialist colleges.

8.07.5 CONTENT Health psychology ranges in the size of its unit of analysis from the culture and norms of large community groups and institutions to individual neuroendocrines, and obviously different aspects of the subject will be of greatest interest to different disciplines. Also, the relevance of parts of health psychology knowledge may depend on the setting in which students of other disciplines will mostly practice, such as the large institution (e.g., hospital or corporation), in the community, or in a solo or small-group practice/business. Nonetheless certain common themes occur in the work of all health professionals, and these are centered on the whole person level of analysis. Some such common topics across disciplines, where health psychology has a large teaching contribution to offer, are listed below. For reasons of space and duplication, this chapter cannot offer exhaustive references. Readers are referred to excellent reviews in other chapters in this volume, where experts provide comprehensive surveys of health psychology knowledge about 22 kinds of health problems. Resource books in health psychology include those by Jospe, Nieberding, and Cohen (1980), King and Remenyi (1986), Harvey (1988), Johnston and Marteau (1989), Bennett, Weinman, and Spurgeon (1990), Taylor (1995), Pitts and Phillips (1991), Brannon and Feist (1992), Sarafino (1994), Steptoe and Wardle (1994), and Broome and Llewelyn (1995). Key periodical sources of timely research reports and reviews include Health Psychology, Psychology and Health, Psychology, Health and Medicine, the Journal of Health Psychology, the British Journal of Health Psychology, the Journal of Occupational Health Psychology, Social Science & Medicine, behavioral medicine journals, and clinical, social, and organizational psychology journals. Papers with health psychologist authors also appear regularly in the psychiatric, general practice/primary care, public health, and health services administration journals. Obtaining mastery of the Medline and other computerized data retrieval systems, and of the Internet, are highly desirable skills for educators. As libraries are forced to reduce their journal subscriptions, many seem to be more willing to obtain photocopied articles from sister institutions, sometimes by facsimile. Information technology improvements are of

Implications and Conclusions critical value for health psychologists as for other academics, since nobody can expect that their own colleagues or contacts will be able to provide a comprehensive picture of the state of current knowledge in this rapidly expanding field. National and international conferences abound, and there are numerous newsletters, seminars, and workshops sponsored by scientific and professional societies (some with multidisciplinary membership) with interests in health psychology. The broad goals of introducing health psychology to the curricula of other health professions were outlined in Section 8.07.3, with a selection of references. The following checklist therefore summarizes the specific topics which health psychologist teachers and trainers in other disciplines may find useful to include in their courses.

8.07.5.1 Topics About Health and Illness Health. The definition and measurement of health; how people assess their own state of health and decide how to proceed; comorbidity of psychological and physical distress; how health beliefs and practices can be changed by educational campaigns in order to promote health and prevent illness; genetic screening and counseling and their ethical implications. Stress. How physical well-being is affected by chronic stress or anxiety, and how such effects can be prevented or reduced; the role of coping strategies and social supports; acute stress arising from invasive or painful procedures and how to reduce patients' suffering and hasten their recovery; psychological responses to chronic illnesses and disabilities, including in family caregivers. Pain. This includes chronic pain and headaches; its determinants and management by psychological methods. Aging. The stages of human cognitive and psychosocial development through life, including the challenges and vulnerabilities typical of each age group, and the influences of sex, social class, and cultural background; how people respond to loss and bereavement, including how they can be helped to face their own death or that of loved ones. Risk factors. Sociocultural and behavioral risk factors for various illnesses; special needs of women, children, the elderly, handicapped, ethnic minorities, homosexuals, and the unemployed. Referral. When and how to make referrals to local clinical health psychologists for problems outside the other discipline's own area of expertise.

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8.07.5.2 Topics About the Interaction Between Health Professional and Patient Roles. The roles of professional help-provider and help-seeker, and the dynamics of power and influence between the two parties; roles within health care teams and institutions; decision-making about health care services and resources. Communication. The mechanisms of effective communication between the professional and patient with their differing amounts and kinds of knowledge and differing expectations; techniques for the specially demanding communication tasks such as giving bad news or dealing with ªdifficultº patients; informed consent and ethical relations with clients. Adherence. The nature and reasons for patient nonadherence to professional recommendations, and how nonadherence can be reduced or at the least, explored and taken into account. Behavior change. Attitude and behavior change and how to influence health-relevant behaviors such as smoking, alcohol and drug use, unsafe sex, weight, diet, and exercise; other behavioral interventions such as biofeedback, relaxation training, and postaddiction relapse immunization; worksite stress management. Other psychological treatments including counseling for psychosocial problems and preparation for surgery and hospitalization. Placebo effects. The powerful nonspecific healing effects of hope and trust, and how these can be both maximized in practice and taken into account in evaluating treatments. Burnout. The psychological hazards of work in human service professions, and how helping professionals may notice and deal flexibly with the particular stressors which arise (for them and for colleagues) from their work. 8.07.6 IMPLICATIONS AND CONCLUSIONS This final section gives consideration to the implications for health psychology and health psychologists, of their participation in the teaching and training of other disciplines. 8.07.6.1 Needed Attributes of Health Psychologists who Teach Other Professions The credible teacher of health psychology to students in other health disciplines should have a sound training in psychological research, ideally some experience in health care settings as researcher or clinician, and in a perfect world, pedagogic skills too. There may however be some delays until many such people are

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available. In the current economic climate of higher education there is likely to be a cyclic relationship between the availability of employment positions for health psychologists, and the diversion of resources to develop training programs in health psychology. Specific professional training in health psychology is becoming available, and opportunities for practice will increase with recognition of the health psychologist's contribution and corresponding financial support from hospitals and insurers (Diekstra, 1991; Friedman, Sobel, Myers, Caudill, & Benson, 1995). Psychologists who accepted pioneering positions in health faculties from the 1960s were rewarded for venturing outside the mainstream of academic psychology, by opportunities for collaborative research with other health professionals and correspondingly, chances to advance the discipline of health psychology. A bootstrapping process then meant that opportunities also arose for clinical work with cardiologists, oncologists, pediatricians, community nurses, general practitioners, and many other health professionals, again with advantages for the development of the discipline. However questions are now being raised about the long-term consequences of health psychologists sharing their expertise with others, which will be discussed below.

8.07.6.2 Needs of Health Psychologists who Teach Other Professions Information about the other professions' traditions, expectations, practice patterns, and needs should be readily available from teaching colleagues and associated practitioners. This will give a vital flavor of reality to the teaching examples and assignments used. Health psychologists who teach nonpsychology students may also need peer support. Recognition and feedback from nonpsychologist teaching colleagues would be very welcome, but it may be valuable to use professional societies and their journals or newsletters and conferences to develop networks of people with similar jobs, in order to share information, practical advice, and understanding. Groups with a focus on health psychology within the professional societies include Division 38 in the American Psychological Association, a special group within the British Psychological Society, a section in the Canadian Psychological Association, a college within the Australian Psychological Society, and a division in the International Association of Applied Psychology. In addition there is an Association of Medical School Professors of Psychology, a

European Health Psychology Society, an International Society for Health Psychology, and doubtless other national and international organizations. As noted above, the Internet, and the national societies for health informatics (information technologies applied to healthrelated knowledge) with their conferences, newsletters, and e-mail discussion groups, greatly increase the opportunities for connection with health psychology teachers around the world.

8.07.6.3 Consequences for Health Psychology of Teaching Other Professions Some of the advantages to individual health psychologists of involvement in teaching other disciplines have been outlined above. Opportunities for joint research with a wider subject pool help with physiological measures such as blood assays, immune function tests, and cardiovascular health and access to funds for health and medical research can all advance individual careers as well as the discipline itself. The experience gained in other disciplines and settings could also very valuably supplement teaching to psychology students. However some doubts have been expressed about psychologists being prepared to share their knowledge and especially their skills, with other disciplines (Frank & Ross, 1995; James, 1994; Richards, 1994). Often psychological content is not explicitly recognized as such, in teaching materials for other disciplines. For example in one healthoriented nursing text (Clark, 1986), there is considerable information about how to change behavior by collecting baseline data, deciding what reinforcers are relevant, goal-setting and behavioral contracts. Yet the only reference to psychology in the index is to an explanation of the field of psychoneuroimmunology (immediately after the section explaining reflexology). Similarly a popular textbook in occupational therapy (Kielhofner, 1992) refers to the theory of behavior modification as being a contribution from the related field of psychology which is sometimes useful in occupational therapy practice; yet does not mention the contribution of psychological research to our understanding of group dynamics and group therapy, a field where occupational therapists feel themselves to have a major role (Gibson, 1990; Howe & Schwartzberg, 1986). A similar lack of recognition for the role of health psychology has been notable in health insurers and health management organizations. Unless health psychology can establish its unique role in providing cost-effective health

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.08 Cardiovascular Disorders DAVID S. KRANTZ and NICOLE R. LUNDGREN Uniformed Services University of the Health Sciences, Bethesda, MD, USA 8.08.1 INTRODUCTION

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8.08.2.1 Overview of Pathophysiology 8.08.2.1.1 Standard risk factors for CHD 8.08.2.2 Psychosocial Risk Factors for CHD 8.08.2.2.1 Stress and CHD 8.08.2.2.2 Animal studies of stress and atherosclerosis 8.08.2.2.3 Occupational stress 8.08.2.2.4 Low levels of social support and lack of economic resources as CHD risk factors 8.08.2.2.5 Acute stress and anger as cardiac disease triggers 8.08.2.2.6 Stress and cardiac ischemia 8.08.2.2.7 Summary 8.08.2.3 Individual Characteristics as CHD Risk Factors 8.08.2.3.1 Type A behavior: current status 8.08.2.3.2 Anger and hostility 8.08.2.3.3 Clinical depression as a CHD risk factor 8.08.2.3.4 Stress reactivity 8.08.2.4 Treatment of CHD 8.08.2.4.1 Medical and surgical treatment options 8.08.2.4.2 Exercise and behavioral components of cardiac rehabilitation 8.08.2.5 Psychosocial Treatment Approaches for the Cardiac Patient 8.08.2.5.1 Modifying hostility and type A behavior 8.08.2.5.2 Interventions to increase social support and reduce life stress 8.08.2.5.3 The lifestyle heart trial 8.08.2.5.4 Summary 8.08.3 ESSENTIAL HYPERTENSION

190 190 191 191 191 192 193 193 195 196 196 196 198 198 200 200 200 201 201 202 202 203 204 204

8.08.3.1 Genetic±Environment Interactions 8.08.3.2 Stress, Behavioral Factors, and Essential Hypertension 8.08.3.2.1 Personality and essential hypertension 8.08.3.2.2 Salt intake 8.08.3.2.3 Obesity 8.08.3.3 Treatment of Essential Hypertension 8.08.3.3.1 Weight loss and dietary salt restriction in hypertension management 8.08.3.3.2 Effects of exercise training in hypertension 8.08.3.3.3 Effects of reducing alcohol intake 8.08.3.3.4 Effects of stress management, biofeedback, and other cognitive interventions in hypertension 8.08.3.4 Adherence to Antihypertensive Treatments 8.08.3.5 Summary

206 206 207 208 208 208 209 209 209 209 210 211

8.08.4 CONCLUSION

211

8.08.5 REFERENCES

211

189

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8.08.1 INTRODUCTION

8.08.2 CORONARY HEART DISEASE

Chronic diseases of the cardiovascular system, which include coronary heart disease (CHD) (also known as ischemic heart disease or atherosclerotic heart disease), high blood pressure, and stroke, constitute a major public health problem and the leading cause of death in Western countries (Higgins & Luepker, 1988; National Heart, Lung, and Blood Institute [NHLBI], 1994). Many physiological, environmental, and behavioral variables interact in the development of these disorders. For example, many of the causal agents for CHD can be modified, relate to habits of living, and are under the control of the individual. It can therefore be said that CHD is a disorder that is a result of the individual's lifestyle, and it is not surprising that cardiovascular diseases have been among the most widely studied topics in health psychology (e.g., Baum, Gatchel, & Krantz, 1997; Krantz, Grunberg, & Baum, 1985). Over the past 30 years in the USA, there has been encouraging news that death rates from heart disease have been decreasing (NHLBI, 1994). Through the use of epidemiologic and statistical analyses these changes have been attributed partly to dramatic medical developments such as drugs and improvements in medical technology, but also to awareness by the public of behaviors that are risk factors, and attempts by individuals to modify components of lifestyle that constitute risk factors for heart disease (Higgins & Luepker, 1988). Goldman and Cook (1988), for example, used the epidemiologic literature to estimate that about 40% of the reduction in cardiovascular mortality was due to improvements in medical care, such as drug treatments for high blood pressure and improvements in cardiac care. However, more than half of the decline in death rates from CHD (54%) could be attributed to lifestyle changes, such as changes in fat consumption and reductions in cholesterol levels (30%) and cigarette smoking (24%). These data reinforce the important link between individual lifestyle and risk of coronary disease. Because of space limitations and the vastness of the available literature, this chapter gives a selective overview of behavioral science contributions to understanding the etiology and treatment of two of the major cardiovascular disorders: CHD and essential hypertension. For comprehensive reviews of various aspects of this vast literature, the reader is referred to Allan and Scheidt (1996), Dubbert (1995), Julius and Bassett (1987), Ockene and Ockene (1992), Shumaker and Czajkowski (1994), and Siegman and Smith (1994).

8.08.2.1 Overview of Pathophysiology Coronary atherosclerosis is a condition that results when the coronary arteries, which deliver blood to the heart, become narrowed by fatty deposits called plaques. Ischemic heart disease refers to a set of conditions thought to result from coronary atherosclerosis. Myocardial ischemiaÐthe inadequate flow of blood to cardiac tissueÐresults when arterial narrowing can cause insufficient blood supply to the heart. Ischemia, in turn, can sometimes be accompanied by chest painÐa condition called angina pectoris. Severe or repeated myocardial ischemia also predisposes the heart to life-threatening disturbances of cardiac rhythm, which can result in sudden cardiac death. A heart attack, or myocardial infarction (MI), results when cardiac tissue dies because arterial plaque becomes unstable and a complete blockage occurs, or when ischemia becomes prolonged or severe. 8.08.2.1.1 Standard risk factors for CHD Based on a set of so-called ªstandardº risk factors, individuals who are likely to develop CHD can be identified with a moderate degree of accuracy. When multiple risk factors are present in the same individual, the CHD risk increases multiplicatively with the addition of each risk factor (Higgins & Luepker, 1988). Several of the coronary risk factors cannot be modified directly. These include chronological age, sex, race, and a strong family history of coronary disease. With aging, there is a greater likelihood of developing heart disease, and nearly half of all coronary victims are aged over 65 years. Especially at younger ages, males are at greater risk of CHD than are females. The lower risk in women at younger ages is in large part attributable to a protective effect of estrogens (Lerner & Kannel, 1986). Thus, gender differences in coronary disease become much less pronounced as women reach menopause, and exogenously administered estrogens lower the risk of CHD in postmenopausal women. Also, in the USA, blacks are more prone to CHD than whites. This may be related to the fact that blacks are much more susceptible to high blood pressure, with high blood pressure being a major CHD risk factor. Another nonmodifiable risk factor is family history. Susceptibility to CHD at an early age appears to be transmitted genetically, and certain families are at higher risk than others (Glueck et al., 1985; Nicolosi & Schaefer, 1992). However, even if individuals

Coronary Heart Disease fall into the higher risk groups because they possess the nonmodifiable risk factors, they can still minimize their risk by modifying other coronary risk factors that are amenable to change. Modifiable risk factors for coronary disease include essential hypertension, cigarette smoking, high blood levels of low density lipoprotein (LDL) cholesterol and low levels of high density lipoprotein (HDL), diabetes, obesity, and sedentary lifestyle (Ockene & Ockene, 1992). (We discuss the so-called ªpsychosocial risk factorsº in Section 8.08.2.2). For example, cigarette smoking is a preventable behavior, and the death rate from MI is markedly higher among smoers compared to nonsmokers. However, for those who give up the habit, the death rate begins to decrease almost to the level of those who have never smoked (Higgins & Luepker, 1988). Essential hypertension, or chronic high blood pressure, is also an important risk factor for the development of CHD that can be modified via pharmacological or behavioral means (see Section 8.08.3). It should be noted that there is still some controversy as to the relative importance of such factors as diet and exercise in the development of coronary disease. For example, although large reductions in dietary intake of saturated fats and cholesterol have been shown to slow the progression of CHD (e.g., Ornish et al., 1990), several studies have not found that dietary patterns within the population are predictive of later development of heart disease (Mann, 1977). Generally, the least controversial and most widely accepted risk factors are considered to be smoking, high LDL and low HDL serum cholesterol levels, and high blood pressure (Kannel, 1979). 8.08.2.2 Psychosocial Risk Factors for CHD Despite extensive research into the standard physiological risk factors, the best combinations of these factors still do not account for the occurrence of heart disease in many individuals (Jenkins, 1983). Thus, the search has been broadened to examine potential new risk factors, including social and psychological characteristics, and characteristics of the environment. In this chapter we discuss four areas of research on cardiovascular disorders: (i) chronic and acute stress and factors such as social support that can moderate the effects of stress on cardiovascular pathology; (ii) personality traits, such as hostility, anger, and type A behavior, which may be risk factors for CHD; (iii) depression, which can lead to poor prognosis in cardiac patients; and

191

(iv) individual differences in physiologic reactivity (responsiveness) to behavioral stressors. 8.08.2.2.1 Stress and CHD Among the lay public, it is widely believed that acute and chronic stress play a role in the onset of CHD manifestations such as MI and sudden cardiac death. Until recently, this view was corroborated primarily by anecdotal and case reports, some epidemiological research (Engel, 1971; Myers & Dewar, 1975), and human and animal studies demonstrating physiologic and pathophysiologic effects of mental stress on the cardiovascular system (Kamarck & Jennings, 1991; Manuck, Marsland, Kaplan, & Williams, 1995). An increased interest in the role of stress as a trigger of clinical cardiovascular events has been fostered by evidence suggesting that, in susceptible patients, acute cardiovascular events (e.g., MI, cardiac ischemia) are frequently triggered by activities such as physical or mental stress, rather than occurring spontaneously (Muller, Tofler, & Stone, 1989). In addition, studies making use of a variety of current techniques for assessing cardiac function in the laboratory and in the field provide convincing evidence for the pathophysiological mechanisms and effects of behavioral factors as triggers of myocardial ischemia (Deanfield et al., 1984; Gottdiener et al., 1994; Krantz et al., 1996; Rozanski et al., 1988). The effects of chronic stress on coronary disease have been studied by assessing psychological and social conditions at work and in other life domains (e.g., home and family). In addition, useful animal behavioral models of coronary disease have been developed and utilized. Research on the role of behavior in the development of coronary artery disease has revealed that the effects of stressful situations on physiology and behavior depend on psychological and contextual factors. If situations (e.g., the workplace) are not viewed or interpreted as harmful, threatening, or challenging, they can produce smaller and even an absence of adverse physiologic responses (Lazarus & Folkman, 1984). Therefore, the relationship of various psychological and social stresses (e.g. occupational conditions) to CHD seems to depend on the meaning of the situation to the individual, and the way in which individuals perceive their life situations (Cohen, Evans, Stokols, & Krantz, 1986). 8.08.2.2.2 Animal studies of stress and atherosclerosis In recent years, a particularly important series of studies in this area have been conducted

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at the Bowman±Gray School of Medicine (Kaplan & Bush, 1982). They used cynomolgus monkeys, whose coronary disease pathology closely resembles that of the human condition in these animals. In addition, many of the prominent aspects of their behavior, such as forming a social hierarchy, competition, and aggression, are salient aspects of human behavior analogous to those which have been implicated as potential contributors to coronary disease in humans. The introduction of unfamiliar monkeys into an established social group is a powerful social stressor, leading to increased aggressive behavior as group members attempt to re-establish a social dominance hierarchy (Manuck, Kaplan, & Matthew, 1986). These stressful conditions were created by periodically reorganizing social groups (the ªunstableº condition). Unstressed animals in ªstableº social conditions were assigned to similarly sized groups having fixed memberships over the duration of the study (Kaplan & Bush, 1982). Based on the patterns of their behaviors in the groups, monkeys were categorized as either dominant or subordinate. In one study of male monkeys, the dominant animals in the unstable social condition developed more extensive coronary atherosclerosis than their subordinate counterparts. However, differences were less evident between dominants and subordinates in the stable social conditionÐunder stable social conditions, dominants were slightly less affected than subordinates. Providing a clue as to the possible behavioral reasons for the development of disease, dominant animals in the unstable condition showed the most aggression toward other animals and a disruption of positive social interactions. In another study conducted with female monkeys, subordinate animals developed greater coronary artery disease than dominants (Kaplan, Adams, Clarkson, & Koritnick, 1984), and as in the other studies with male animals, these effects could not be attributed to the physical risk factors. Reproductive function in many of the subordinate animals was also disrupted, and these behaviorally induced reproductive problems may have lessened these animals' ªprotectionº against coronary disease. In summary, experiments with nonhuman primates have demonstrated a causal effect of psychosocial stress in the development of coronary artery disease. Interestingly, the specific effects of stress depend on individual characteristics (e.g., level of dominance) that determine how objective conditions will affect each animal's behavior. Interestingly, the particular traits in animals (e.g., dominance and

aggression) that relate to risk of atherosclerosis foreshadow similar findings obtained in human populations. 8.08.2.2.3 Occupational stress Research on occupational stress and health has sought to determine which occupations are most stressful and the particular characteristics of occupations that lead to elevated risk of coronary disease (Karasek & Theorell, 1990). In this regard, several characteristics of settings and of individuals have been identified that potentially can be modified to reduce stress. Working conditions that have been associated with CHD risk include the psychological demands of the job, autonomy on the job (how much input a worker has in making decisions), and satisfaction on the job. Job demands refer to job conditions that tax or interfere with the worker's performance abilities, such as workload and work responsibilities. Level of job autonomy or control refers to the ability of the worker to control the speed, nature, and conditions of work. Job satisfaction includes gratification of the worker's needs and aspirations derived from employment (Wells, 1985). Low levels of control over one's job and excessive workload seem to be a particularly important combination in heightening jobrelated stress. Karasek and colleagues (e.g., Karasek & Theorell, 1990) proposed that conditions of high work demands combined with few opportunities to control the job situation (low decisional latitude) are associated with increased coronary disease risk. Conditions of high demand and low control are called ªhigh strainº situations. The Karasek ªjob demand/controlº hypothesis has been tested in several populations by applying a ªjob characteristics scoring systemº based on responses to several national surveys of workers. These job characteristic scores can distinguish between occupations along the dimensions comprising job strain. The job strain model has shown the ability to predict cardiovascular disease and mortality in studies of male Swedish workers, and in studies of men and women in the USA (Karasek & Theorell, 1990; Karasek et al., 1988; Schnall, Devereux, Pickering, & Schwartz, 1990). However, a recent longitudinal study of patients who underwent diagnostic testing for coronary disease did not find that occupational stress was related to extent of disease in this population or to subsequent cardiac morbidity or mortality (Hlatky et al., 1995). These negative findings may be attributable to the fact that the study group consisted of a selected group of largely symptomatic patients, and the

Coronary Heart Disease effects of job strain may be obscured in such a population. A study of occupational stress and CHD among women also suggests that the relationship of job conditions to coronary disease depends on the individual's work and family demands, and their control over these situations. Haynes and Feinleib (1980) analyzed data from the Framingham Heart Study, a major epidemiologic study of heart disease conducted by the National Institutes of Health. They asked the question of whether the increasing employment of women outside the home has adversely affected their cardiovascular health. In the mid-1960s, middle-aged women were examined for the development of CHD for the ensuing eight years. Working women, that is women who had been employed outside the home for more than half their adult years, were compared with housewives and with men. The results indicated that working women in general were not at significantly higher risk of subsequent coronary disease than housewives. However, clerical workers (who perhaps have low job control), and working women with children (who have high family demands) were more likely to develop CHD, as were women whose bosses were nonsupportive. Interestingly, the likelihood of CHD increased linearly with the number of children for working women, but not for housewives (Lacroix & Haynes, 1987). 8.08.2.2.4 Low levels of social support and lack of economic resources as CHD risk factors Certain aspects of the social environment, particularly social isolation, low social support, and lack of social and economic resources can also increase an individual's risk of cardiovascular disease (Shumaker & Czajkowski, 1994). Social support refers to the instrumental, emotional, and informational aid obtained from an individual's social ties and community resources (Cohen & Wills, 1985). It has been hypothesized that social support may serve as a buffer or moderator between life stressors and cardiovascular disease outcomes. On the other hand, the absence of tangible aid from a supportive social network may also have direct adverse effects on health, for example, by impeding access to needed help or interfering with medical compliance. In studies in the USA and other countries, people with strong social networks are at a relatively lower risk of developing CHD (Shumaker & Czajkowski, 1994). In industrialized societies, rates of cardiac morbidity and mortality are inversely related to

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socioeconomic status, with disease rates higher among poorer individuals. The inverse association of CHD mortality with socioeconomic level cannot be explained by different use of medical care services by individuals in lower socioeconomic groups (Marmot, 1983). Although it is known that the prevalence of standard CHD risk factors (e.g., high blood pressure and smoking) decreases with increasing socioeconomic status, this is not sufficient by itself to explain all the increase in coronary mortality attributable to low socioeconomic status. Low social support and lack of economic resources appear to increase interactively the risk of adverse prognosis in CHD patients. Ruberman, Weinblatt, Goldberg, and Chaudhary (1984) (Figure 1) demonstrated that level of education and social support resources (elements associated with socioeconomic level) are significant factors affecting the survival of men after a first MI. In this study, men with low educational levels were likely to experience more isolation and life stress than were men with higher levels of education. Low education men had mortality rates twice as high as men with more education and social support. More recently, two studies demonstrated that living alone led to a near doubling of the risk of recurrent heart attack and death in post-MI patients, and that, independent of other prognostic medical factors, unmarried male and female coronary artery disease patients without a confidant and patients with low household incomes were at increased risk of cardiovascular death over a five-year period (Case, Moss, Case, McDermott, & Eberly, 1992; Williams et al., 1992). Social factors presumably influence prognosis by influencing patientsº psychological reactions to MI. For example, the poorly educated may be at increased risk of job loss following an infarction, and for those who live alone the future may be even more bleak. 8.08.2.2.5 Acute stress and anger as cardiac disease triggers As opposed to focusing on chronic social and environmental conditions, a relatively new research area has focused on the role of acute stress and of emotions as triggers of the onset of coronary artery disease manifestations in individuals with pre-existing disease (see Krantz et al., 1996; Muller et al., 1989). Earlier studies observed that stressful life events, such as death of a spouse, occurred in the 24 hours preceding death among patients who died suddenly from coronary disease (e.g., Cottington, Matthews, Talbott, & Kuller, 1980; Myers & Dewar, 1975) and that loss events (e.g., death of a loved one) occurred to sudden death victims more

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Education

Life stress and social isolation

15

Both high level (465) One is high level (1105)

Cumulative probability of death (%)

< 10 yrs (486) 10

10–12 yrs (881) Both low level (745)

5 > 12 yrs (947) 0 Life circumstances

Social isolation High (725)

15 High stress (1312) 10

Low (1591)

Low stress (1007)

5

0 6

12

18

24

30

36

0

6

12

18

24

30

36

Follow-up (months) Figure 1 The effect of social factors on the survival of men after a first MI.

frequently than to controls. These studies corroborated earlier findings (e.g., Parkes et al., 1969) that observed a 40% increase in cardiovascular mortality among widowers. However, these and related studies are subject to the criticism of biased recall of stressful events by relatives or friends of sudden death victims, who served as informants in these studies. The occurrence of disasters and personal traumas has also been related to an increase in cardiac deaths and increased rates of MI. For example, during the Iraqi missile attacks on Israel during the initial days of the 1991 Gulf War, there was a significant increase in fatal and nonfatal cardiac events among the population living close to Tel Aviv (Meisel et al., 1991). Cases of acute MI treated in the intensive care unit of a Tel Aviv medical center were elevated during the week following the missile attacks (January 17±25, 1991), compared to the week prior to the attacks and to an index period

consisting of the same week a year earlier (Figure 2). In addition, there was an increase in the sudden death rate during January 1991 compared with the same period a year earlier. Mortality statistics among the entire Israeli population during period showed that on the day of the first missile strike, excess mortality observed was greater among women than among men (Kark, Goldman, & Epstein, 1995). This increase in cardiovascular mortality occurred largely in the Tel Aviv area where the missile attacks occurred. Mittleman et al. (1995) used a novel epidemiologic methodology that compares each patient's activities before MI with his or her usual levels of activities, in order to assess the immediate physical and mental triggers of onset of heart attack. In a study of patients interviewed a median of four days after MI, 2.4% reported episodes of anger within the two hours prior to onset of MI. Following these

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6

No. of patients with acute MI

5

4

3

2

1

0 8

9

10

11

12

13

14

15

16

17

18

19

20

21

22

23

24

25

January Figure 2 Daily incidence of acute myocardial infarction (MI) observed in Tel Aviv-area coronary care units during the period of the Iraqi missile attacks (January 8±25, 1991) (filled colomns) compared with the same time period in 1990 (unfilled columns) (large arrow = beginning of the Gulf War; small arrows = missile attacks on Israel).

episodes of anger, the risk of MI following episodes of anger was more than twice as high (Figure 3). 8.08.2.2.6 Stress and cardiac ischemia It is possible to monitor continuously the electrocardiogram (ECG) during daily life in patients with coronary disease in order to detect the occurrence of cardiac ischemiaÐthe inadequate supply of blood to the heart that is a clinical manifestation of coronary heart disease activity. In several studies, mental and physical activities of cardiac patients undergoing ambulatory monitoring of the ECG have been assessed using structured diaries. During daily life, ischemia in these patients is accompanied by strenuous physical exercise relatively infrequently, the majority of such episodes occurring

during normal daily activities (e.g., Schang & Pepine, 1977). Mental stress and emotion also appear to be potent triggers of daily life ischemia in coronary patients (Barry et al., 1988; Gabbay et al., 1996). For example, Gabbay et al. (1996) assessed the effects of specific emotions on ischemia by using a more sophisticated diary in patients undergoing ambulatory monitoring. Ischemia occurred most frequently during moderate intensity physical and mental activities. Patients spent the largest proportion of time engaged in low intensity physical and mental activities, but the likelihood of ischemia was greatest during intense physical activities and during stressful mental activities. The percentage of time in ischemia (5% of the time) was approximately equivalent for high-intensity physical (Figure 4(a)) and high-intensity mental activities (Figure 4(b)), compared with 0.2% of

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Relative risk of onset of MI

4.0

2.0

1.0

0.5

0.0

1

2

3

4

5

Time of anger (hours before onset) Figure 3 Episodes of anger and the relative risk of MI.

the time when patients were engaged in low intensity activities (see Figure 5). Strenuous physical activity (e.g., walking) and the experience of intense anger were potent ischemic triggers. Studies have also utilized a variety of sensitive means to evaluate the effects of mental stress on myocardial ischemia in the laboratory, enabling investigators to infer causal relationships between stress and ischemia and to assess physiologic and psychological mechanisms responsible for these effects. These studies have revealed that laboratory mental stressors can provoke ischemia in a substantial subset of patients with coronary artery disease (e.g., Blumenthal et al., 1995; Deanfield et al., 1984; Goldberg et al., 1996; Gottdiener et al., 1994; Rozanski et al., 1988). Ironson et al. (1992) further reported that an anger-inducing stressor was a particularly potent psychological stressor in its ability to trigger ischemia. 8.08.2.2.7 Summary In summary, there is evidence that both acute and chronic stress may either promote the development of or trigger CHD events. Key aspects of chronic stress that are potential risk factors for cardiac events and that can potentially be modified include job strain and, particularly among cardiac patients, low social support and lack of economic resources.

Converging evidence also suggests that anger is an emotion that is a potent trigger of cardiac events such as ischemia or infarction. In addition to these environmental and social factors, several individual behavioral traits are reviewed below that have been suggested as CHD risk factors. 8.08.2.3 Individual Characteristics as CHD Risk Factors 8.08.2.3.1 Type A behavior: current status The concept of a coronary-prone personalityÐa set of emotions, behaviors, and personality attributes that characterize people who are likely to develop CHDÐhas origins as far back as a century or more ago. During the 1950s, cardiologists Friedman and Rosenman (1959) described the type A behavior pattern (TABP), characterized by excessive competitive drive, impatience, hostility, and vigorous speech characteristics. A contrasting behavior pattern, called type B, consists of the relative lack of these characteristics and a more easygoing style of coping. Friedman and Rosenman (1974) developed a structured interview to measure type A behavior based on the presence of observable behaviors such as speech characteristics and the manner in which subjects respond to questions, rather than relying on whether subjects describe themselves as impatient,

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Proportion of time ischemic

0.06 0.05

(a)

0.04 0.03 0.02 0.01 0.00 1

2

3

4

5

4

5

Physical activity level

Proportion of time ischemic

0.06 0.05

(b)

0.04 0.03 0.02 0.01 0.00 1

2

3 Mental activity level

Figure 4 The percentage of time in ischemia at different physical and mental activity levels (adjusted for the time spent in the activity level).

competitive, etc. In contrast to the structured interview, several questionnaire measures developed to assess type A behavior, such as the Jenkins Activity Survey (JAS; Jenkins, Zyzanski, & Rosenman, 1971), relied solely on subjectsº self-reports of their own behavior (Matthews & Haynes, 1986), and have generally shown a weaker relationship to CHD than interview-derived type A measures. Most studies conducted in the 1960s and 1970s to examine the relationship of type A behavior to heart disease revealed a positive correlation between TABP and risk of CHD in men and women, which was both comparable to and independent of the effects of risk factors

such as smoking and hypertension. For example, evidence supportive of type A as a risk factor included two major studies of initially healthy individuals. The Western Collaborative Group Study (WCGS) examined over 3000 men for 8.5 years. Those men assessed as type A by interview and questionnaire at study intake were more likely to have developed heart disease over the course of the study compared to type B men (Jenkins, Rosenman, & Zyzanski, 1974; Rosenman et al., 1975). In the Framingham Heart Study, type A behavior was a predictor of CHD among men in white collar occupations and in women working outside the home (Haynes, Feinleib, & Kannel, 1980).

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However, since the 1980s, most studies have failed to find a relationship between type A behavior and coronary disease (see Matthews & Haynes, 1986). For example, the Multiple Risk Factor Intervention Trial (MRFIT) was a study conducted to determine whether interventions to modify coronary risk factors such as smoking, high cholesterol levels, and high blood pressure in high-risk men would lessen the likelihood of coronary disease in these individuals. Measures of type A behavior were obtained for over 3000 MRFIT subjects, who were followed for seven years. Type A behavior, as assessed by the structured interview and by the JAS in this high-risk group was unrelated to incidence of a first heart attack (Shekelle, Holley, & Neaton, 1985). This study, then, failed to support a link between type A behavior and heart disease. In addition, there were research reports indicating that, after a heart attack, type B patients (and not type A patients) were more likely to die (Ragland & Brand, 1988). Although this finding could be explained in terms of the healthier type A patients being the ones who initially survived their first heart attack, this result clearly presented problems for the notion of type A behavior as coronaryprone behavior. The reasons for these inconsistent findings for type A behavior are not entirely clear, and some (e.g., Matthews & Haynes, 1986) have suggested that type A behavior might not be a risk factor for certain high-risk groups (as were tested in the MRFIT study). Others have suggested that type A behavior is more likely to be a risk factor in younger, as opposed to older, subgroups (Williams et al., 1988). Nevertheless, it appears that certain components of type A behaviorÐ particularly anger, hostility, and vigorous speech characteristicsÐhave remained correlated with coronary disease even in studies where overall, or ªglobal,º type A behavior has not been related to CHD. 8.08.2.3.2 Anger and hostility As noted above, type A behavior consists of several behaviors, including competitiveness, time urgency, and hostility, yet it is possible that not all these behaviors contribute equally to coronary risk. What have consistently emerged as correlates of CHD in these studies are characteristics relating to hostility, anger, and certain speech characteristics derived from the structured interview, as well as the characteristic of not expressing anger or irritation or ªangerin.º For example, a reanalysis of data from the WCGS described above showed that ªpotentialfor-hostility,º vigorous speech, and reports of frequent anger and irritation were the strongest

predictors of CHD (Matthews, Glass, Rosenman, & Bortner, 1977). Even in the MRFIT study, which was not able to relate type A behavior to CHD, hostility characteristics in MRFIT subjects were associated with increased CHD risk (Dembroski, MacDougall, Costa, & Grandits, 1989). The Cook and Medley Hostility Inventory (Cook & Medley, 1954), a scale derived from the Minnesota Multiphasic Personality Inventory (MMPI), has been shown in two studies to be related to occurrence of coronary disease. This scale appears to measure attitudes such as cynicism and mistrust of others (Barefoot & Lipkus, 1994). In one study involving a 25-year follow-up of physicians who completed the MMPI while in medical school, high Cook± Medley scores measured in college students predicted incidence of CHD as well as mortality from all causes, and the relationship was independent of the individual effects of smoking, age, and presence of high blood pressure (Barefoot, Dahlstrom, & Williams, 1983) (Figure 5). There is also evidence that low hostility scores are associated with decreased death rates during a subsequent 20-year follow-up of nearly 1900 participants in the Western Electric Study (Shekelle, Gale, Ostfeld, & Paul, 1983). In other studies it was shown that traits of hostility (e.g. assessed in terms of behaviors and attitudes indicative of hostility derived from the type A behavior structured interview) were related to the development of CHD in initially healthy men and in high-risk participants in the MRFIT study (for a review see Helmers, Posluszny, & Krantz, 1994). Subsequent research has further suggested that hostility scores on the Cook± Medley (1954) scale are higher in low socioeconomic status groups, higher in men and nonwhites in the USA, and also positively related to the prevalence of smoking (Siegler, 1994). Thus, it is possible to hypothesize that hostility may account for some of the socioeconomic and gender differences in death rates from cardiovascular diseases (Stoney & Engbretson, 1994). 8.08.2.3.3 Clinical depression as a CHD risk factor In addition to hostility, the presence of other psychological traits can confer increased risk of poor health outcomes among CHD patients, and hence are important to consider as elements of effective cardiac patient treatment and rehabilitation. Signs and symptoms of clinical depression, including fatigue, exhaustion and dysphoric mood, are prevalent among patients with CHD. Moreover, studies have reported that nearly 1 in 5 cardiac patients can be diagnosed as having the signs and symptoms of

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100

135/ 136

135/ 136

134/ 136

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133/ 136

133/ 136 Hostility score 14 103/ 119

85 1960

1965

1970

1975

1980

Year Figure 5 The relationship between hostility score and death rate in the Western Electric Study.

clinical depression (Carney et al., 1987; FrasureSmith, Lesperance, & Talajic, 1993). However, despite its high prevalence, depression among post-MI patients is often untreated. The presence of a major depressive episode in CHD patients is associated with poor psychosocial rehabilitation and increased medical morbidity (Carney, Freedland, Rich, & Jaffe, 1995). At least four studies have compared the clinical course of depressed versus nondepressed cardiac patients and noted an increase of events and lower mortality rates associated with depression. Diagnosis of major depressive disorder at the time of coronary angiography was the best predictor of a significant cardiac event (death, reinfarction, bypass, angioplasty) during a one-year follow-up period (Carney et al., 1987). Schleifer, Keller, Bond, Cohen, and Stein (1989) reported a trend toward a higher rate of rehospitalization and reinfarction in depressed patients. Kennedy, Hofer, Cohen, Schindledecker, and Fisher (1987) reported a significant correlation of cardiac arrhythmias, depression, and mortality. Frasure-Smith et al. (1993) prospectively followed 222 post-MI patients and observed that a diagnosis of major depression was a strong predictor of mortality in the 6 months following hospital discharge. In addition, two more recent studies of initially

healthy populations have suggested that the presence of a major depressive episode (Pratt et al., 1996) or worsening of depressive symptoms (Wassertheil-Smoller et al., 1996) are prospectively predictive of the subequent development of cardiac events. A parallel set of studies conducted by Appels and colleagues (e.g., Appels, 1990; Kop, Appels, de Leon, de Swart, & Var, 1994) suggest that symptoms of fatigue or exhaustionÐeven in the apparent absence of clinical symptoms of dysphoria or depressive affectÐare predictive of the subsequent development or worsening of cardiovascular symptoms and events. This syndrome of fatigue symptoms has been termed ªvital exhaustionº (Appels, 1990). Moreover, evidence suggests that the predictive value of symptoms of fatigue or exhaustion cannot be explained by the effects of illness on mood or energy level (Kop et al., 1994). To explain the link between depression and/ or vital exhaustion, low social support, and mortality in coronary patients, studies have observed reduced compliance with medical therapeutic and exercise regimens in depressed cardiac patients (Carney et al., 1995), and a supportive social network is thought to be necessary to facilitate adequate compliance with medical regimens and reduction of cardiac risk

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factors (Amick & Ockene, 1994). It has also been suggested that increased susceptibility to cardiac arrhythmias and sudden cardiac death is a mechanism linking major depression to sudden cardiac death in coronary patients (Carney et al., 1995). In addition, recent studies have suggested that the presence of clinical depression can be associated with neural and neuroendocrine responses that predispose to sudden death, and changes in blood-clotting processes that may predispose to coronary thrombosis and to MI (Frasure-Smith, 1991). Research on mechanisms linking depression, social support, and/or lack of economic resources to increased cardiac morbidity and mortality is in its early stages, and this area promises to be a fruitful area for exploration.

8.08.2.3.4 Stress reactivity The adverse effects of stress on cardiac pathology have been attributed to the neural, endocrine, and cardiovascular effects of stress (Krantz et al., 1996). It has long been known that there are wide individual differences that exist in physiologic reactions to stress, and research suggests that physiological responses (reactivity) to emotional stress may be involved in the development of CHD and/or high blood pressure (see Krantz & Manuck, 1984; Manuck, 1994). The measurement of ªreactivityº involves the assessment of cardiovascular and/or hormonal changes in response to stressÐnot just resting levels of physiologic variables. There are wide individual differences in the magnitude of physiological responses shown during such a task, with some people (so-called ªhot reactorsº) showing sizable increases to the challenging task, and others showing little or no increases. For example, there is some evidence that behaviors evidenced by hostile type A persons are accompanied by the same kinds of cardiovascular and neuroendocrine responses thought to link psychosocial stress to CHD (Contrada & Krantz, 1988; Krantz & Durel, 1983; Matthews, 1982). Research has examined the possibility that excessive reactivity to stress may itself be a risk factor for coronary disease. In one study of initially healthy men followed for 23 years (Keys et al., 1971), the magnitude of their diastolic blood pressure reactions to a cold pressor test (which involves immersing the hand in cold water) predicted later heart disease. In fact, this physiologic response was a stronger predictor than many of the standard risk factors assessed in the study. However, a later study (Coresh, Klag, Mead, Liang, & Whelton, 1992) failed to replicate these findings.

Additional evidence of a relationship between cardiovascular reactions to stress and coronary disease was obtained in the Bowman±Gray monkeys described earlier. In studies of male and female cynomolgus monkeys fed on cholesterol-rich diet, animals were exposed to a standard laboratory stress (threat of capture) that produced large heart-rate elevations (Manuck, Kaplan, & Clarkson, 1983; Manuck et al., 1986). Animals were categorized as either high or low heart-rate reactive monkeys. At the end of the study, high heart-rate reactors had nearly twice the amount of coronary atherosclerosis as did low heart-rate reactors. Because of these animal and human studies, several behavioral methods for reducing reactivity have been studied. Among the behavioral techniques used for this purpose are cognitive techniques, relaxation training, biofeedback, and aerobic exercise (Jacob & Chesney, 1986; Matthews et al., 1986). 8.08.2.4 Treatment of CHD Although the field of cardiac rehabilitation is comparatively young, it has made considerable inroads in the clinical management of coronary patients. Standard rehabilitation programs involve a combination of drug treatment, exercise, and dietary interventions (Blumenthal & Emery, 1988). The current status of interventions in this field focusing on medical and/or exercise interventions, has been documented in several reviews (Blumenthal & Emery, 1988; Lau et al., 1992; Oldridge, Guyatt, Fischer, & Rimm, 1988). Recently, more treatment plans for CHD have included psychological interventions, such as group and individual cognitive therapy, relaxation therapy, and meditation techniques. Because behavioral treatments for CHD must be implemented in the context of current medical practice, a brief overview of the medical and surgical treatment options for coronary disease is presented before describing psychosocial interventions in this area.

8.08.2.4.1 Medical and surgical treatment options Medical and surgical treatment options for cardiac patients range from minimally invasive medical and drug treatments to coronary bypass surgery. Among the many pharmacological agents that have been proven useful for the treatment of CHD patients are: anti-ischemic agents, such as beta-blockers and calcium channel drugs, which reduce the heart's demand for blood and help the heart function more efficiently with a limited supply; nitrates, which

Coronary Heart Disease are useful in the treatment of ischemia and anginal pain; various lipid-lowering drugs that reduce harmful cholesterol levels; aspirin and other drugs that reduce the clotting tendency of blood platelets; and agents that lower blood pressure. Other procedures, such as percutaneous transluminal angiography (PTCA) and coronary artery bypass grafting (CABG) are also commonly used in treatment. (PTCA and CABG are together referred to as revascularization procedures, as they aim to restore blood flow in areas where flow was previously restricted.) During PTCA, atherosclerotic points in selected arteries are widened by means of a balloon-inflation procedure. CABG involves the surgical bypassing of blocked sections of coronary arteries with sections of a saphenous vein, usually from the leg, or with portions of an artery from another part of the body. Studies indicate that CABG is effective in reducing anginal pain and improving functional status, but has only been shown to lengthen survival in specific subsets of CHD patients (Coronary Artery Surgery Study [CASS] Principal Investigators, 1984).

8.08.2.4.2 Exercise and behavioral components of cardiac rehabilitation There are numerous behavioral components of successful comprehensive cardiac rehabilitation programs (e.g., Blumenthal & Emery, 1988; Krantz & Blumenthal, 1987). These include an aerobic exercise conditioning program, smoking cessation, weight loss, and maintenance of optimal weight, and modification of diet to emphasize foods low in saturated fat and cholesterol. Each of these interventions often involve significant and demanding behavioral changes, and issues of promoting behavioral change, ensuring compliance, and long-term maintenance of behavioral modifications are important in ensuring therapeutic effectiveness. Exercise training is a core element of contemporary cardiac rehabilitation programs (for reviews see Blumenthal & Emery, 1988; Blumenthal & Wei, 1993). Physical inactivity is a significant and independent risk factor for CHD, and regular physical activity in the form of aerobic-type exercises increases functional capacity and plays an important role in both primary and secondary prevention. Active individuals have better cardiovascular risk factor profiles relative to their sedentary counterparts, including lower blood pressure, higher HDL cholesterol, lower LDL cholesterol, lower triglycerides, and very low density lipoprotein cholesterol levels. Physically fit individuals, in comparison to unfit persons,

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also have attenuated hemodynamic and neuroendocrine responses to behavioral stressors (Blumenthal & Wei, 1993). Exercise improves functional capacity in most cardiac patients, including patients with limited exercise tolerance, and those who engage in regular physical activity may be better able to perform activities of daily living and enjoy many aspects of life. However, despite these positive effects, the precise effects of exercise training in prolonging life or reducing recurrence rates in post-MI patients is still the subject of some debate. Recent metaanalyses of controlled studies in rehabilitation have demonstrated significant reductions in mortality for patients assigned to rehabilitation in comparison with those assigned to control groups (Fletcher, 1996; Pate et al., 1995). However, these results have been difficult to demonstrate in individual studies, perhaps because large sample sizes are needed to reveal these effects. Interventions to increase participation in physical activity generally indicate that, as with many lifestyle interventions, incentives and social support can increase exercise patterns in the short term, but that people have difficulty maintaining their exercise programs over the course of time (Blumenthal & Emery, 1988; Dubbert, 1995). Exercise maintenance is improved by integrating physical activity and exercise into everyday lifestyle. Because recent evidence suggests that stress management and psychosocial treatments have important beneficial effects on morbidity and on quality of life when implemented in conjunction with standard medical interventions, these interventions are reviewed in some detail in the following section.

8.08.2.5 Psychosocial Treatment Approaches for the Cardiac Patient As noted previously, evidence suggests that psychosocial interventions may reduce morbidity and mortality, psychological distress, and some biological risk factors when used in addition to standard treatment regimens among cardiac patients. More specifically, Linden, Stossel and Maurice (1996) recently performed a meta-analysis of 23 controlled trials that evaluated the impact of psychosocial treatments directed specifically at reducing distress-related factors among cardiac patients. Results of this analysis indicated that patients receiving psychosocial treatments (e.g., stress management, individual or group cognitive therapy, and meditation) showed greater reductions, compared with control conditions, not only in

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psychological distress but also in blood pressure, heart rate, and serum cholesterol levels. Morbidity and mortality data, available in about half of these studies, indicated that patients not receiving psychosocial treatments showed greater mortality and cardiac recurrence rates during the first two years of followup (Table 1). 8.08.2.5.1 Modifying hostility and type A behavior A variety of clinical intervention studies have attempted to decrease type A behavior either in persons with elevated levels of other CHD risk factors or in samples of coronary patients. Most of these early studies have demonstrated that elements of type A behavior can be decreased to some extent in subjects who are motivated to change (Allan & Scheidt, 1996; Suinn, 1982). Accompanying changes in type A behavior, some studies also measured changes in traditional CHD risk factors such as serum cholesterol levels or blood pressure. The findings from these studies are inconsistent (Allan & Scheidt, 1996; Suinn, 1982). These results are not surprising considering that the therapeutic regimens are not typically directed at decreasing risk factor levels other than type A behavior. The most important and ambitious type A behavior intervention study done to date is the Recurrent Coronary Prevention Project (RCPP; Friedman et al., 1986). The major purpose of this project was to determine whether the constellation of type A behaviorsÐfocusing on anger, impatience, aggressiveness, and irritabilityÐcould be modified in a large group of heart attack patients, and whether such behavior changes would lower the recurrence of heart attacks and deaths from CHD. Beginning in 1979, over 1000 patients were recruited for a five-year intervention study.

Patients were assigned to one of three groups: a cardiology counseling treatment group, a combined cardiology counseling and type A behavior modification group, or a no-treatment control group. The cardiology counseling included encouragement to comply with dietary, exercise, and drug regimens prescribed by the participants' personal physicians, education about CHD and its treatment, and counseling about psychological problems (other than type A behaviors) associated with the postcoronary experience. Type A behavior counseling included drills to change specific type A behaviors, focused discussions on beliefs and values underlying type A behavior, rearrangements of home and work demands, and relaxation training to decrease physiologic arousal. In the final results of the study after 4.5 years, the rate of heart attack recurrence for the type A behavioral counseling group was significantly lower than for the cardiology counseling and control groups (Friedman et al., 1986). These results demonstrated, within a controlled experimental design, that an intervention directed at altering type A behavior reduces coronary disease recurrence in post-heart-attack patients. However, in light of the recent negative evidence regarding associations of type A behavior with CHD, it is possible that the beneficial effects of the RCPP study resulted from more general salutary effects of the interventions in reducing distress and increasing social support among patients. 8.08.2.5.2 Interventions to increase social support and reduce life stress Another, perhaps more cost-effective, approach to preventing stress-related morbidity and mortality in cardiac patients was utilized by the Ischemic Heart Disease Life Stress Monitoring Program (Frasure-Smith & Prince, 1987,

Table 1 Benefit of psychosocial interventions for reductions in mortality and morbidity.

No. of studies

No. of patients (control/experimental group)

Weighted log OR*

w2

P

95% CI*

Morbidity, y: 42 42

8 3

390/462 298/297

1.84 1.64

5.80 5.06

0.02 0.02

1.12±2.99 1.06±2.54

Mortality, y: 42 42

10 3

530/620 298/297

1.70 1.35

5.46 2.24

0.02 0.13

1.09±2.64 0.83±1.53

End-point

OR, odds ratio; CI, confidence interval. * Fully randomized, controlled trials only

Coronary Heart Disease 1989), conducted in Montreal, Canada. This study made clinical use of the evidence that periods of increased life stress may precede recurrences of heart attack. Patients who had experienced a heart attack (or MI) were assigned to either a treatment group (n = 229) or to a control group (n = 224). Patients assigned to the control group did not receive life stress monitoring and intervention, but instead received routine medical follow-up care. In the treatment group, patients were contacted by phone on a monthly basis and asked about 20 symptoms of distress, such as insomnia, feelings of depression, and inability to concentrate. When stress levels exceeded a critical level (more than 4 of 20 possible symptoms), a project nurse made a home visit to assess the causes of increased distress, and attempted to help the patient with whatever life problems seemed to be producing the distress. Over the year of the program, about half of patients in the treatment group had high stress levels requiring intervention. On average, study nurses provided each high-stress patient with 5±6 hours of home nursing contact, including teaching patients about coronary disease, counseling, providing social and emotional support, and referring patients to cardiologists or other health professionals as needed. The study hypothesized that by reducing stress the program would result in a reduction in cardiac mortality and in cardiac recurrences. Results showed that for the year of the project cardiac deaths were reduced by 50%, and that the reduced death rate persisted for six months beyond the end of the program (Figure 6). In addition, although there were similar rates of MI recurrences in the two groups, during the seven years following the program there were fewer MI recurrences among patients in the treatment group. The most obvious explanation for the outcomes obtained in the Ischemic Heart Disease Life Stress Monitoring Program is that the program provided patients with a sense of social and emotional support that helped ameliorate depression and feelings of helplessness and distress, thereby reducing physiological arousal and its adverse effects on the cardiovascular system. The special clinical features of the program, including selection for treatment based on stress scores and individualized tailoring of interventions to patientsº needs, may have been responsible for the program's success. 8.08.2.5.3 The lifestyle heart trial One of the most important intervention studies conducted to date is the one carried

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out by Ornish and colleagues (Ornish et al., 1990). These researchers conducted a controlled study of 28 patients with significant coronary artery disease documented by coronary angiography (a procedure used to assess the severity of blockages in coronary arteries). Patients were randomly assigned to either an experimental group or to a usual care control group. Experimental group patients were given a lifestylemodification program consisting of several components: (i) a very low fat vegetarian diet; (ii) stress management training and group support consisting of twice weekly yoga and meditation conducted in group sessions together with individual practice for one hour a day; (iii) a smoking cessation program; and (iv) a program of moderate levels of aerobic exercise. Patients assigned to the control group were not asked to make lifestyle changes other than those recommended in traditional cardiologic care. The intervention lasted for one year, and the extent of progression of coronary disease was assessed in all patients by comparing coronary angiograms obtained at the study onset and at one year. The study results (Ornish et al., 1990) demonstrated that, for the experimental group, on average there was a slight reduction (regression) in the extent of stenosis (or blockage) in coronary arteries, whereas the controls showed a progression in severity of stenosis. Overall, 82% of patients in the experimental group had an average change toward regression of disease. Interestingly, the degree of measured regression of disease was related to the overall extent of adherence to the intervention recommendations among the study subjects, with the most compliant subjects showing the most improvement in disease status and the least compliant patients showing the least change (Figure 7). Blumenthal et al. (1997) recently assessed the independent effects of stress management and exercise training on the prognosis of 107 cardiac patients with CHD and evidence of myocardial ischemia. In the Myocardial Ischemia Intervention Trial, patients were randomly assigned to a four-month program of stress management or exercise training. An additional control group of patients (those patients who lived too far from the intervention center to participate in the intensive and frequent treatment sessions) constituted a nonrandom usual-care group. To assess possible mechanisms associated with the effects of interventions, patients underwent mental stress and exercise testing for ischemia prior to and after the interventions. The results of the study indicated that, compared to controls, patients in the stress management group showed a lower risk of cardiac events over a

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30

40

30 MI recurrences (%)

Mortality (%)

20

Control Program end

10 Treatment

20

Control

Program end Treatment

10

0

0 1

2

3

4

5

6

7

Years since program intake

1

2

3

4

5

6

7

Years since program intake

Figure 6 Long-term outcomes in the Ischemic Heart Disease Stress Monitoring Program.

mean follow-up period of 38 months. The risk of cardiac events in the exercise training group was lower than that of controls, but the effect did not reach statistically significant levels. Other beneficial effects of the stress management intervention included reduced occurrence of myocardial ischemia, lowered serum cholesterol levels, and reduced self-reported distress. One shortcoming of this study, however, was the failure to randomize patients to the usual-care control group. However, analyses failed to uncover any medical, demographic, or socioeconomic differences between control and treatment groups that could have accounted for the results obtained. 8.08.2.5.4 Summary In summary, the identification of psychosocial risk factors for coronary disease has led to several promising behavioral and psychosocial interventions to aid in the treatment and prevention of coronary disease in high-risk individuals. Four such behavioral and psychosocial interventions with coronary patients were described: cognitive-behavioral interventions directed at lessening hostility and type A behavior (RCPP); a tailored social support

and counseling intervention delivered by a nurse directed at reducing life stress (Ischemic Heart Disease Life Stress Monitoring Program); a lifestyle-modification program consisting of a very low fat vegetarian diet, a stress management training with group support and practiced individually, stopping smoking, and moderate levels of aerobic exercise (Lifestyle Heart Trial); and a controlled study of the effects of stress management interventions on cardiac ischemia and cardiac morbidity (Myocardial Ischemia Intervention Trial). As noted by Linden et al. (1996), the aggregate data provide a basis for the inclusion of psychosocial treatment components in cardiac rehabilitation. However, given the diversity of treatment approaches employed, these findings also suggest an important need to identify the most specific, most effective types of psychosocial interventions for particular patients. 8.08.3 ESSENTIAL HYPERTENSION The term ªessential hypertensionº refers to an asymptomatic condition in which the blood pressure is chronically elevated, and for which no single cause can be identified. According to current diagnostic standards (Joint National

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–5

Change in percentage diameter stenosis (after–before intervention)

(a)

–4

–3

–2

–1

0 Most adherence

Medium adherence

Least adherence

Most adherence

Medium adherence

Least adherence

–6

Change in percentage diameter stenosis (after–before intervention)

(b) –4

–2

0

2

4

6

8 Figure 7

Disease regression measured in the study by Ornish et al. (1990): (a) experimental study group; (b) whole study group.

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Committee on Detection, Evaluation, and Treatment of High Blood Pressure [JNC], 1993), hypertension is defined as a diastolic blood pressure consistently at or above 90 mmHg and/or a systolic blood pressure at or above 140 mmHg. Recent data further identify the optimal blood pressure as at or below 120/85 mmHg. The prevalence of essential hypertension in Western societies is high; for example, this condition is estimated to be present in 15% of the US population. Hypertension is a serious and potentially lethal disease, and untreated hypertension increases the risk of stroke, heart attack, kidney, and vascular disease. Progress in the control of hypertension over the past 30 years has been enormous, and although it is a chronic disease its control is now possible through a variety of pharmacologic as well as nonpharmacologic behavioral means. Factors associated with risk of hypertension, include age, family history of hypertension, ªborderlineº high blood pressure, dietary intake of salt, and obesity. Like CHD, there are numerous social, environmental, and cultural factors that interact with genetic background in predisposing individuals to hypertension, and considerable attention has been paid to studying the role of stress and personality factors in the development of this disorder. In addition, there has been considerable attention devoted to cognitive and behavioral treatment approaches for essential hypertension, and these approaches have met with mixed results at best. It is likely that many findings in the area of the role of behavior in the development and treatment of hypertension are contradictory because of the complex interactions between behavioral, physiological, and genetic factors, and also because essential hypertension is probably not a single homogeneous disease. Rather, blood pressure is thought to progress over a period of years from moderately elevated or ªborderlineº levels to more appreciably elevated levels, the latter being called ªestablished hypertension.º The phenomenon of ªwhite coat hypertensionº has also been identified, in which individuals display elevated blood pressure when clinically examined in the doctorsº office, but may display normal blood pressure when assessed in the patient's usual environment outside of the clinic (Pickering, James & Boddie, 1988; Siegel, Blomenthal, & Divine, 1990). It it likely that white coat hypertension results in an increase in ªfalse-positiveº diagnosis and treatment of high blood pressure, and the clinical significance of white coat hypertension remains a topic of current study (Dubbert, 1995). Several different pathogenic mechanisms can bring about blood pressure elevations, and

different physiologic and/or behavioral mechanisms are implicated at different stages of the disorder. For example, individuals with borderline and earlier stages of hypertension are commonly observed to have an elevated output of blood from the heart but little evidence of increased resistance to the flow of blood in the body's vasculature (Julius & Esler, 1975). This physiological pattern is consistent with an increased activation of the sympathetic nervous system, which is the body's initial reaction to psychological stress. Indeed, high levels of blood and tissue catecholamines (such as those produced by stress) have been found in some hypertensive humans and animals (Julius & Bassett, 1987; Julius & Esler, 1975). However, in older individuals with more established hypertension, the heart's output of blood is normal or even decreased and resistance to flow of blood is elevated. 8.08.3.1 Genetic±Environment Interactions Evidence from animal research and from studies of human twins indicates that genetic factors are important in the development of hypertension (Pickering & Sleight, 1977). In humans, however, it is likely that sustained hypertension is produced by an interaction of environmental and genetic factors. Population studies reveal a difference in the prevalence of hypertension among various social and cultural groups, a difference that cannot be accounted for by genetic factors alone (Henry & Cassel, 1969). For example, even though AfricanAmericans in the USA experience more hypertension than other groups, the prevalence of this disease is higher among poor than middle class black Americans (Harburg et al., 1973). Animal research similarly reveals examples where environmental factors, such as dietary salt intake or stress, can lead to sustained blood pressure elevations, but only in certain genetic strains (Dahl, Heine, & Tassinari, 1962). 8.08.3.2 Stress, Behavioral Factors, and Essential Hypertension Sociocultural and psychological studies of humans, in conjunction with research on animals, have identified some factors related to behavior that might play a role in the development of hypertension. The increased risk for hypertension among blacks compared to whites in the USA and among persons of lower socioeconomic compared to higher socioeconomic status has been attributed to a variety of factors, including differences in dietary patterns, exercise habits, or the social and

Essential Hypertension physical characteristics of the environments (including racism) (Krieger & Sidney, 1996) in which these individuals live and work (Julius & Bassett, 1987). Some studies have suggested that exposure to environments (e.g., urban high crime settings) that require sustained vigilance as well as recurrent mobilization of coping resources to ward off harm may raise blood pressure (Guttman & Benson, 1971; Henry & Cassel, 1969), and it is well documented that poorer people are overrepresented in such environments. For example, the role of stress in hypertension is suggested by a study of residents of Detroit (Harburg et al., 1973). Four areas were categorized as ªhigh stressº or ªlow stressº based on socioeconomic status, crime rate, population density, residential mobility, and marital breakup rates. Blood pressure levels were highest among black high stress males, while white areas and black low stress areas did not differ in blood pressure levels. A recent report suggesting that racism may be linked to higher blood pressure in blacks (Krieger and Sidney, 1996) also supports this hypothesis. However, the simple notion that cultural change and social stress are causally linked to hypertension has been criticized as not being consistent with the aggregate data available (Syme & Torfs, 1978). Research has also shown that people engaged in highly stressful occupations, such as workers in busy airport control towers, have more than four times the prevalence of hypertension when stress is high than individuals of similar age in other professions (Cobb & Rose, 1973). Current studies of urban bus drivers in several places in the world suggest that they also have higher rates of hypertension than demographically comparable groups of employed persons. The high rates of hypertension observed in these occupational groups is consistent with the job demand/control hypothesis advanced to explain the relationship between occupational stress and CHD (Karasek et al., 1982). Specifically, as with CHD, hypertension may occur more frequently in jobs that are demanding but in which there is little opportunity or flexibility to deal with these demands. Experimental studies with animals further demonstrate that social or behavioral stress can produce hypertension in predisposed individuals. Classic studies by J. P. Henry and associates (Henry & Stephens, 1977) have shown that psychosocial stimuli can cause hypertension in mice. Other studies demonstrate that hypertension can be induced in animals exposed to environmental stressors such as fear or shock and experimentally produced conflict (Campbell & Henry, 1983). However, unlike the human condition, blood

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pressure tends to normalize when the stress is removed unless the animals are genetically predisposed to hypertension. Consistent with the notion that genetic±environment interactions are important in the development of hypertension, studies have demonstrated that strains of animals that are susceptible to hypertension are also likely to show stressinduced blood pressure elevations (Friedman & Iwai, 1976). In humans, excessive stress and salt consumption might also interact in producing blood pressure elevations. Haythornthwaite, Pratley, and Anderson (1992) studied medical students during examination periods (high stress) and during vacation periods (low stress). Half the students were randomly assigned to consume salt tablets (sodium chloride) tablets or placebo tablets (a usual salt intake condition) during a two-week period of high or low stress. Results of the study indicated that high sodium intake during the high stress period was associated with greater elevations in resting systolic and mean arterial pressure than either the usual salt intake during the high stress period or the high salt intake during the low stress period. These results suggest that some forms of hypertension or blood pressure elevations may result from the interaction of psychosocial stress with periods of high salt intake. 8.08.3.2.1 Personality and essential hypertension Beginning with the observation of early clinicians that patients with chronic hypertension showed certain personality features (e.g., Aymann, 1933), there has been a long-standing interest in personality correlates of essential hypertension (for reviews see Cottier, Perini, & Rauchfleisch, 1987; Johnson, Gentry, & Julius, 1992). Over time, several diverse personality characteristics have been identified or studied as being prevalent in hypertensives, with psychodynamic formulations driving early research in this area. Traits associated with hypertension in empirical studies have included, but are not limited to, suppressed hostility or anger (Dunbar, 1943; Harburg et al., 1973; Johnson et al., 1992), neuroticism and anxiety (Markovitz, Matthews, Kannel, Cobb, & D'Agonstino, 1993), and submissiveness (Elser et al., 1977). Although associations between these traits and hypertension have been widely reported, many existing studies suffer from methodological shortcomings, such as the use of selected or convenience samples, or the failure to distinguish in hypertensive patients characteristics (e.g., neuroticism) that may be prevalent in

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other diagnosed medical groups with chronic diseases. In addition, inconsistencies reported across studies in associations of certain traits with hypertension may have resulted not only from the aforementioned patient selection factors, but also from the fact that essential hypertension may not be a heterogeneous disease, progressing over a period of years from moderately elevated or ªborderlineº levels to more appreciably elevated levels (Weiner & Sapira, 1987). Given the existence of a core of traits associated with blood pressure elevation, various investigators differ in their assumptions regarding the significance of personality trait differences in hypertension. Early psychosomatic investigators (e.g., Alexander, 1939; Dunbar, 1943) and more recent researchers (e.g., Jern, 1987) have postulated a causal role for personality traits in the development of hypertension. Other investigators (e.g., Esler et al., 1977; Weder & Julius, 1987) have suggested that personality traits associated with hypertension reflect excessive central and sympathetic nervous system arousal that may predispose to hypertension. Another perspective on personality traits in hypertensives has suggested that behavioral differences between hypertensive and normotensive populations that are reflected on personality tests result from the medical attention and labeling associated with the diagnosis of disease. For example, Irvine, Garner, Olmsted, and Logan (1989) noted that hypertensives who were aware of their diagnosis scored significantly higher than normotensives and than hypertensives unaware of their blood pressure elevation on neuroticism, trait and state anxiety, and self-reported type A behavior. However, an explanation in terms of labeling cannot account for the prospective association recently reported between anxiety in apparently normal individuals and the subsequent development of hypertension (Markovitz et al., 1993). 8.08.3.2.2 Salt intake Salt intake is implicated as a factor causing or worsening essential hypertension, largely because excessive intake of sodium causes the kidneys to increase the volume of blood. However, studies indicate that high salt intake may only be related to high blood pressure levels in some cultures and population groups. For example, among people who live in underdeveloped tribal societies, sodium intake is often low, as is the prevalence of hypertension (Page, Danion, & Moellering, 1970). As individuals move or become acculturated to modern societies the prevalence of hypertension

increases. This phenomenon has been discussed in terms of increasing stress with acculturation, but it has also been argued that acculturation is associated with increased salt intake and plays an equally important role in the development of hypertension (Page et al., 1970). Clearly, both the salt and stress explanations for the increased prevalence of hypertension in modern societies have some merit, and the research mentioned here suggests that salt consumption and exposure to stress might interact together to produce blood pressure elevations (Friedman & Iwai, 1976; Haythornthwaite et al., 1992). 8.08.3.2.3 Obesity Obesity is another behavioral phenomenon that plays an important role in hypertension. There is an increased prevalence of hypertension in obese persons, although the precise reasons for this remain to be determined (Shapiro, 1983). Some have thought that it is merely that obese patients consume more sodium, but recent studies have demonstrated that weight loss without salt restriction can result in significant decreases in blood pressure (Reisen et al., 1978). For this reason, weight loss is an important behavioral method for managing high blood pressure. 8.08.3.3 Treatment of Essential Hypertension Pharmacologic treatment by an increasingly broad variety of agents has revolutionized the treatment and control of hypertension. A landmark study in this area was the Hypertension Detection and Follow-up Program (HDFP, 1979). The HDFP, which is considered to have been a major breakthrough of modern medical care, studied a sample of 10 000 hypertensives. Half the patients were assigned to a special care group, involving a strict medication protocol, with the goal of normalizing blood pressure delivered via special community based clinics. A usual care group was returned to their usual sources of care available in the mid-1970s (the time of the study). Results indicated a significant decrease in overall mortality in the special care group. The beneficial effects of pharmacologic treatment were most evident in older patients and in black patients in the sample. This study convincingly demonstrated the benefits and efficacy of pharmacologic treatment of hypertension. Because hypertension is a chronic, asymptomatic disease, to mitigate the life-long need to take medication, which often has side effects, a variety of nonpharmacologic behavioral

Essential Hypertension interventions, including lifestyle interventions such as dietary modification, weight loss, exercise, and stress management, have been assessed as possible treatment approaches for essential hypertension. In this regard, a comprehensive set of behavioral changes, including weight loss, reduced salt intake, and exercise, are initial recommendations in the treatment of hypertension. If these approaches are not effective in normalizing blood pressure, medication is prescribed (JNC, 1993), and the aforementioned behavioral changes can lessen the amount of medication needed. In the following sections, we review the behavioral and lifestyle interventions used in the treatment of hypertension. 8.08.3.3.1 Weight loss and dietary salt restriction in hypertension management Reduction of salt intake and weight loss have become important components of the nonpharmacological treatment of hypertension. Clinical trials completed in the last 10±15 years have shown that even relatively modest weight loss can have clinically significant effects on blood pressure over long periods, of up to 3±5 years in some studies (for a comprehensive recent review of the effects of dietary modification and weight loss interventions in hypertension see Dubbert, 1995). Dietary studies also indicate that decreasing sodium intake in the diet of hypertensives appears to have the salutary effect of lowering blood pressure, although these effects tend to be smaller than those obtained via weight loss (Dubbert, 1995). In accordance with the above discussion of genetic±environment interactions, we should note that high salt intake is correlated with increased prevalence of hypertension only in certain populations or groups, and that animal studies reveal that excessive salt intake results in sustained hypertension only in certain genetic strains (Dahl et al., 1962). Thus, we might expect salt restriction to be effective in lowering blood pressure only in certain susceptible individuals. 8.08.3.3.2 Effects of exercise training in hypertension Dubbert (1995) has also reviewed the effects of exercise in the management of hypertension. Although several intervention studies have noted a beneficial effect of aerobic exercise training in hypertensives, the beneficial effects of exercise per se appear to be equivocal. Both positive and negative clinical trials of exercise have been reported in the literature (Kelley

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& McClellan, 1994; Martin, Dubbert, & Cushman, 1990) and, although meta-analyses (Kelley & McClellan, 1994) suggest significant beneficial effects of exercise training in hypertension, it is not clear to what extent these effects are due to the effects of weight loss. Thus, the role of exercise in the management of hypertension, independent of the effects of weight loss, remains an area of active research. 8.08.3.3.3 Effects of reducing alcohol intake Evidence also suggests that a reduction in alcohol consumption is a behavioral change that can also have beneficial effects in the management of essential hypertension (Dubbert, 1995; MacMahon, 1987). In fact, because heavy drinking can both raise blood pressure and interfere with the efficacy of drug treatments for hypertension, the taking of a detailed drinking history and limiting daily alcohol intake to no more than two drinks per day has become standard recommended practice in hypertension treatment (JNC, 1993). The potentially beneficial long-term effects of reducing alcohol consumption among hypertensives who are heavy drinkers is currently being studied in a multicenter study in the USA (Cushman et al., 1994). 8.08.3.3.4 Effects of stress management, biofeedback, and other cognitive interventions in hypertension Fostered by enthusiasm for exploring applications of biofeedback and stress management in medical conditions that occurred with the formation of the field of behavioral medicine, early studies suggested that techniques such as biofeedback and relaxation training could be used to modify the stress-induced components of high blood pressure, and thereby reduce blood pressure in hypertensive patients. Several studies have demonstrated that small but significant decreases in blood pressure (e.g., 15 mmHg systolic and 10 mmHg diastolic blood pressure) can be achieved in hypertensives after a series of training sessions with biofeedback or relaxation methods such as meditation, progressive relaxation, or yoga (for reviews see Dubbert, 1995; Eisenberg et al., 1993; Johnston et al., 1993). For example, one study that yielded positive effects was conducted by Patel and colleagues (Patel, Marmot, & Terry, 1981; Patel et al., 1985), who assessed the effects of eight weekly group sessions of training in breathing exercises, deep muscle relaxation, meditation, and a stress management program. Subjects were also instructed to practice relaxation, and meditation for 15±20 minutes at home daily and

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to try to relax during stressful daily activities. Compared with a control group, patients who received relaxation training showed decreases in both systolic and diastolic blood pressure over a follow-up period of up to four years after treatment. The magnitude of these changes were in the range of 7 mmHg in systolic and diastolic blood pressure. Early comparative studies of these various behavioral techniques indicated that no one of them is clearly superior to the others, with each producing modest declines in blood pressure (Shapiro et al., 1977). These reductions in blood pressure are achieved without any side effects or medical contraindications, thus enhancing the attractiveness and appeal of stress-reducing techniques as nonpharmacologic adjuncts to the treatment of hypertension. Unfortunately, the results of more recent research and meta-analyses of an extensive body of controlled studies tend to reveal that most of the effects of stress management on hypertension appear to be relatively small and may be attributable to a mixture of nonspecific (i.e., placebo) effects and to habituation to repeated blood pressure measurements over the course of clinical trials (Dubbert, 1995; Eisenberg et al., 1993; Jacob, Chesney, Williams, & Ding 1991; Johnston et al., 1993). For example, Johnston et al. (1993) conducted a meticulously wellcontrolled study of the effects of stress management on resting and ambulatory blood pressure and on left ventricular mass (a measure of cardiac size that is a clinically important consequence of hypertension). Ninety-six mild hypertensives were studied, and underwent an extensive baseline evaluation to habituate them to the effects of blood pressure measurement. Subsequently, they were assigned to either 10 clinical sessions and practice at home of either stress management and relaxation training, or to a nonaerobic stretching condition control. Results indicated that patients' blood pressure fell during the habituation period, but neither resting nor ambulatory blood pressures were changed during the treatments. However, the magnitude of blood pressure increases produced by a stressful interview was reduced by stress managment. Thus, stress management appears not to be effective in lowering resting blood pressure among patients who are habituated to the measurement procedures. An interesting aspect of the study is that responses to acute stressors might be diminished by stress management. These general findings are corroborated by other recent studies of stress management conducted by Chesney, Black, Swan, & Ward (1987) at patients' worksites. The only strong recent counterevidence for the efficacy of stress-management-like interven-

tions comes from a recent set of studies by Schneider et al. (1995) and Alexander et al. (1996). These investigators report benefits of transcendental meditation on blood pressure in elderly African-American hypertensives. The discrepancies between these results and those of other recent trials may be due to the fact that blood pressure elevations among inner city blacks is stress related and therefore susceptible to stress reduction procedures. Alternatively, transcendental meditation may have unique effects not evident in other interventions, although prior analyses (e.g., Eisenberg et al., 1993; Jacob et al., 1991) appear not to corroborate this latter notion.

8.08.3.4 Adherence to Antihypertensive Treatments As hypertension is a chronic, asymptomatic disorder, and because patients need to take medication that often has significant side effects (e.g., impotence, depression, and fatigue), nonadherence with antihypertensive medication regimens is a serious and prevalent problem. Descriptive studies indicate that fewer than 33±66% of patients comply with antihypertensive treatment regimens (Dunbar-Jacob, Wyer, & Dunning, 1991). Thus, the failure of patients to adhere to antihypertensive regimens is an important behavioral issue that has been investigated and clinically addressed by health psychologists. A comprehensive consideration of the problem of patient nonadherence to medical regimens used in the treatment of hypertension and other chronic diseases is beyond the scope of this chapter, and this issue will only be touched upon briefly here. For thorough considerations of this issue the reader is referred to Dunbar-Jacob et al. (1991) and Haynes, McKibbon, & Kanai (1996). Research suggests that there are important differences between treatment settings in reported antihypertensive compliance rates, with family practice settings observing higher compliance and hospital clinics reporting poorer rates (Dunbar-Jacob et al., 1991). Interventions to increase adherence to regimens have demonstrated that factors such as increasing provider and family support, simplifying and making the regimen less complex, and introducing several behavioral self-management strategies may be effective in some situations. Nevertheless, the problem of antihypertensive compliance remains widespread. Unfortunately, our inability to measure noncompliance precisely hinders interpretation of these data. The various ways in which compliance and noncompliance are assessed

References (e.g., patient self-report, physician report, and pill count) are not always accurate, and each one provides a separate set of problems. One of the more exciting developments in the area of compliance is the development of electronic pill monitors, which permit the unobtrusive and accurate assessment of medication compliance during daily life (Dunbar-Jacob, Sereika, Rohay, & Burke, in press). 8.08.3.5 Summary In summary, behavioral influences on essential hypertension include excessive salt intake, obesity, and stress. There is evidence that inner city African Americans and those subject to racism are more prone to hypertension, and animal studies suggest that stress can result in hypertension in genetically susceptible strains. However, the effectiveness of behavioral intervention techniques, such as relaxation training, biofeedback, and meditation, in lowering blood pressure have been rather small and are generally of questionnable clinical significance. However, behavioral interventions such as weight loss, physical conditioning, and reduction of dietary salt intake have proven effective as adjuncts to pharmacologic interventions for hypertension. In addition, patient nonadherence to antihypertensive medication regimens is an important and prevalent problem that remains a topic of current study. 8.08.4 CONCLUSION There are many environmental, behavioral, and physiological variables that interact in the development of cardiovascular disorders. Many of the standard CHD risk factors have important behavioral components, and increasing evidence suggests important psychosocial risk factors for CHD, including occupational stress, hostility, and physiologic reactivity to stress. In cardiac patients, the presence of acute stress, low social support, lack of economic resources, and psychological depression also appear to be important psychosocial risk factors. The identification of psychosocial risk factors for coronary disease have led to several promising behavioral and psychosocial interventions to aid in the treatment and prevention of coronary disease in high-risk individuals. There also appear to be important biobehavioral influences in the development and treatment of essential hypertension. These include excessive salt intake, obesity, and stress. Evidence also indicates that genetic and environmental factors interact in the development of hypertension. However, the modest effects of

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behavioral stress-reducing techniques such as relaxation training, biofeedback, and meditation in lowering blood pressure have proven disappointing. Nevertheless, the important necessity for the involvement of health psychologists in the treatment of essential hypertension is underscored by the potential efficacy of weight loss, dietary modification, and exercise conditioning, as well as the need to ensure that patients adhere to medication regimens in order for pharmacologic interventions that have been shown to reduce subsequent morbidity to be effective. ACKNOWLEDGMENTS The opinions and assertions contained herein are those of the authors and are not to be construed as those of the USUHS or the US Department of Defense. Preparation of this chapter was supported by grants from the NIH (HL47337) and the USUHS (RO7233). Portions of this chapter were adapted from ªCardiovascular disorders and behaviorº in A. Baum, R. Gatchel, & D. S. Krantz, An introduction to health psychology (3rd ed.). New York: McGraw-Hill, 1997. 8.08.5 REFERENCES Alexander, C. N., Schneider, R. H., Staggers, F., Sheppard, W., Clayborne, B. M., Rainforth, M., Salerno, J., Kondwani, K., Smith, S., Walton, K. G., & Egan, B. (1996). Trial of stress reduction for hypertension in older African Americans. Hypertension, 28, 228±237. Alexander F. (1939) Emotional factors in essential hypertension. Psychosomatic Medicine, 1, 173±179. Allan, R., & Scheidt, S. (1996). Empirical basis for cardiac psychology. In R. Allan & S. Scheidt (Eds.), Heart and mind: The practice of cardiac psychology (pp. 63±124). Washington, DC: American Psychological Association. Amick, T. L. & Ockene, J. K. (1994). The role of social support in the modification of risk factors for cardiovascular disease. In S. A. Shumaker & S. M. Czajkowski (Eds.), Social support and cardiovascular disease (pp. 259±280). (Plenum Series in Behavioral Psychophysiology and Medicine). New York: Plenum. Appels, A. (1990). Mental precursors of myocardial infarction. British Journal of Psychiatry, 156, 465±471. Aymann, D. (1933). The personality type of patients with arteriolar essential hypertension. American Journal of Medical Science, 186, 213. Barefoot, J. C., Dahlstrom, W. G., & Williams, R. B. (1983). Hostility, CHD incidence and total mortality: A 25 year follow-up study of 255 physicians. Psychosomatic Medicine, 45, 59±63. Barefoot, J. C., & Lipkus, I. M. (1994). The assessment of anger and hostility. In A. W. Siegman & T. W. Smith (Eds.), Anger, hostility, and the heart (pp. 43±66). Hillsdale, NJ: Erlbaum. Barry, J., Selwyn, A. P., Nabel, E. G., Rocco, M. B., Mead, K., Campbell, S., & Rebecca, G. (1988). Frequency of ST segment depression produced by mental stress in stable angina pectoris from coronary artery disease. American Journal of Cardiology, 61, 989±93. Baum, A., Gatchel, R., & Krantz, D. S. (1997). An

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factorial problem (insights from the Framingham study). In M. L. Pollack & D. H. Schmidt (Eds.), Heart disease and rehabilitation (pp. 15±31). Boston: Houghton Mifflin. Kaplan, J. R., Adams, M. R., Clarkson, T. B., & Koritnick, D. R. (1984). Psychosocial influences on female ªprotectionº among cynomolgus macaques. Atherosclerosis, 53, 283±295. Kaplan, R. M., & Bush, J. W. (1982). Health related quality of life measurement for evaluation research and policy analysis. Health Psychology, 1, 61±80. Karasek, R. A., Russell, R. S., & Theorell, T. (1982). Physiology of stress and regeneration in job related cardiovascular illness. Journal of Human Stress, 8, 29±42. Karasek, R. A., & Theorell, T. G. (1990). Healthy work, stress, productivity, and the reconstruction of working life. New York: Basic Books. Karasek, R. A., Theorell, T. G., Schwarz, J., Pieper, C., & Alfredsson, L. (1982). Job, psychological factors and coronary heart disease: Swedish prospective findings and US prevalence findings using a new occupational inference method. Advances in Cardiology, 29, 62±67. Karasek, R. A., Theorell, T. G., Schwartz, J., Schnall, P., Pieper, C., & Michela, J. (1988). Job characteristics in relation to the prevalence of myocardial infarction in the US Health Examination Survey (HES) and the Health and Nutrition Examination Survey (HANES). American Journal of Public Health, 78, 910±918. Kark, J. D., Goldman, S., & Epstein, L. (1995). Iraqi missile attacks on Israel. Journal of the American Medical Association, 273, 1208±1210. Kelley, G., & McClellan, P. (1994). Antihypertensive effects of aerobic exercise. A brief meta-analytic review of randomized controlled trials. American Journal of Hypertension, 7, 115±119. Kennedy, G. H., Hofer, M. A., Cohen, D., Shindledecker, R., & Fisher, J. D. (1987). Significance of depression and cognitive impairment in patients undergoing programmed stimulation of cardiac arrhythmias. Psychosomatic Medicine, 49, 410±421. Keys, A., Taylor, H. L., Blackburn, H., Brozek, J., Anderson, J., & Simonson, E. (1971). Mortality and coronary heart disease among men studied for 23 years. Archives of Internal Medicine, 128, 201±214. Kop, W. J., Appels, A. P. W. M., de Leon C. M., de Swart H. B., & Bar F. W. (1994). Vital exhaustion predicts new cardiac events after successful coronary angioplasty. Psychosomatic Medicine, 56, 281±287. Krantz, D. S., & Blumenthal, J. (1987). Behavioral assessment and management of cardiovascular disorders. Sarasota, FL: Professional Resource Exchange. Krantz, D. S., & Durel, L. A. (1983). Psychobiological substrates of the type A behavior pattern. Health Psychology, 2, 393±411. Krantz, D. S., Grunberg, N. E., & Baum, A. (1985). Health psychology. Annual Review of Psychology, 36, 349±383. Krantz, D. S., Kop, W. J., Gabbay, F. H., Rozanski, A., Barnard, M., Klein, J., Pardo, Y., & Gottdiener, J. S. (1996). Circadian variation of ambulatory myocardial ischemia: Triggering by daily activities and evidence for an endogenous circadian component. Circulation, 93, 1364±1371. Krantz, D. S., & Manuck, S. B. (1984). Acute psychophysiologic reactivity and ride of cardiovascular disease: a review and methodologic critique. Psychological Bulletin, 96, 435±464. Krieger, N., & Sidney, S. (1996). Racial discrimination and blood pressure: The CARDIA study of young black and white adults. American Journal of Public Health, 86, 1370±1378. LaCroix, A. Z., & Haynes, S. G. (1987). Gender differences in the health effect of workplace roles. In R. C. Barnett,

L. Biener & G. K. Baruch (Eds.), Gender and stress (pp. 96±121). New York: Free Press. Lau, J., Antman, E. M., Jimenez-Silva, J., Kupelnick, B., Mosteller, F., & Chalmers, T. C. (1992). Cumulative meta analysis of therapeutic trials for myocardial infarction. New England Journal of Medicine, 327, 248±254. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal and coping. New York: Springer. Lerner, D. J., & Kannel, W. B. (1986). Patterns of coronary heart disease morbidity and mortality in the sexes: A 26 year follow-up of the Framingham population. American Heart Journal, 111, 383±390. Linden, W., Stossel, C., & Maurice, J. (1996). Psychosocial interventions for patients with coronary artery disease: A meta-analysis. Archives of Internal Medicine, 156, 745±752. MacMahon, S. (1987). Alcohol consumption and hypertension. Hypertension, 9, 111±121. Mann, G. V. (1977). Diet-heart: End of an era. New England Journal of Medicine, 97, 644±650. Manuck, S. B. (1994). Cardiovascular reactivity in cardiovascular disease: ªOnce more unto the breach.º International Journal of Behavioral Medicine, 1, 4±31. Manuck, S. B., Kaplan, J. R., & Clarkson, T. B. (1983). Behaviorally induced heart rate reactivity and atherosclerosis in cynomolgus monkeys. Psychosomatic Medicine, 45, 95±108. Manuck, S. B., Kaplan, J. R., & Matthew, K. A. (1986). Behavioral antecedents of coronary heart disease and atherosclerosis. Atherosclerosis, 6(1), 2±14. Manuck, S. B., Marsland, A. L., Kaplan, J. R., & Williams, J. K. (1995). The pathogenicity of behavior and its neuroendocrine mediation. An example from coronary artery disease. Psychosomatic Medicine, 57, 275±283. Markovitz, J. H., Matthews, K. A., Kannel, W. B., Cobb, J. L., & D'Agonstino, R. B. (1993). Psychological predictors of hypertension in the Framingham Study: Is there tension in hypertension. Journal of the American Medical Association, 270, 2439±2443. Marmot, M. G. (1983). Stress, social and cultural variations in heart disease. Journal of Psychosomatic Research, 27, 377±384. Martin, J. E., Dubbert, P. M., & Cushman, W. C. (1990). Controlled trial of aerobic exercise in hypertension. Circulation, 81, 1560±1567. Matthews, K. A. (1982). Psychological perspectives on the type A behavior pattern. Psychological Bulletin, 91, 293±323. Matthews, K. A., Glass, D. C., Rosenman, R. H., & Bortner, R. W. (1977). Competitive drive pattern A and coronary heart disease: A further analysis of some data from the Western Collaborative Group Study. Journal of Chronic Diseases, 30, 489±498. Matthews, K. A., & Haynes, S. G. (1986). Type A behavior pattern and coronary disease risk: Update and critical evaluation, American Journal of Epidemiology, 123, 923±960. Matthews, K. A., Weiss, S. M., Detre, T., Dembroski, T. M., Falkner, B., Manuck, S. B., & Williams, R. B., Jr. (Eds.) (1986). Handbook of stress, reactivity, and cardiovascular disease. New York: Wiley. Meisel, S. R., Kutz, I., Dayan, K. I., Pauzner, H., Chetboun, I., Arbel, Y., & David, D. (1991). Effect of Iraqi missile war on incidence of acute myocardial infarction and sudden death in Israeli civilians. Lancet, 338, 660±661. Mittleman, M. A., Maclure, M., Sherwood, J. B., Mulry, R. P., Tofler, G., Jacobs, S. C., Friedman, R., Benson, H., & Muller, J. E. (1995). Triggering of acute myocardial infarction onset by episodes of anger. Circulation, 92, 1720±1725.

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.09 Cancer BARBARA L. ANDERSEN and DEANNA M. GOLDEN-KREUTZ Ohio State University, Columbus, OH, USA 8.09.1 INTRODUCTION

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8.09.2 MAGNITUDE OF THE PROBLEM INCIDENCE, DEATH RATES, AND GENDER DIFFERENCES

218

8.09.3 ETIOLOGY, RISK FACTORS, AND PREVENTION

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8.09.4 PSYCHOLOGICAL, SOCIAL, AND BEHAVIORAL IMPACT OF CANCER

220 220 221 222 223 223 223 224 225 226 227 229

8.09.4.1 Symptom Appearance 8.09.4.2 Diagnosis 8.09.4.3 Treatment 8.09.4.3.1 Surgery 8.09.4.3.2 Radiotherapy 8.09.4.3.3 Chemotherapy 8.09.4.3.4 Bone marrow transplantation 8.09.4.3.5 Treatment side effects 8.09.4.3.6 Choosing cancer treatments 8.09.4.4 Recovery and Long-term Survival 8.09.4.5 Recurrence and Death 8.09.5 CONCLUSION

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8.09.6 REFERENCES

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1990±1993 ranged from 394 in Hungary to 139 in Albania; the rate for the USA is 276 (average: Parker et al., 1997). In short, cancer is a significant medical problem that affects the health status of millions of people worldwide. Research on the psychological, social, and behavioral aspects of oncology began in the early 1950s; however, our knowledge base has significantly expanded since the 1970s. In particular, research has clarified relationships between psychological responses (e.g., personality, mood, coping style, relationships), social factors (e.g., presence/absence of partner, degree of social support), and behavioral variables (e.g., compliance with treatment, diet, exercise). More recent research has incorporated biologic systems (e.g., immune and endocrine), examining the interaction of psychological, social, and behavioral variables and their relationship to disease course (see

8.09.1 INTRODUCTION The cost of human lives to cancer (defined as any malignant tumor; Rothenberg, 1992), is overwhelming. In many countries cancer is the second leading cause of death, only outnumbered by heart disease. In the USA alone, over 3500 people are diagnosed with cancer and another 1500 people die from cancer-related deaths per day (Parker, Tong, Bolden, & Wingo, 1997). While much of the increase in cancer incidence and mortality over the years appears related to advances in early detection as well as the general aging of the population (age is a risk factor; Garfinkel, 1994), Cunningham (1997) has noted cancer death rates may now be showing a downward trend in the USA. There is, however, variability across countries. For example, age-adjusted death rates per 100 000 population across sites and gender for 217

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Fawzy et al., 1993, for an example; see Andersen, Kiecolt-Glaser, & Glaser, 1994, for a discussion). This chapter includes an overview of the central findings on the psychological, social, and behavioral impact of cancer. By way of introduction, we begin by addressing the magnitude of the cancer problem. Data on cancer incidence, death rates, and gender differences are highlighted. Where data from the USA are used, it is noted that they represent the same general trends found in other industrialized, Western countries. Second, we briefly discuss etiologic and risk factors and the role of prevention. The largest section of the chapter organizes research findings by disease relevant time points, from symptom discovery to recovery or death. Where appropriate, specific intervention studies will be detailed. Information about cancer's impact on a patient's social network (spouse, family, etc.) is also included. We conclude with a discussion of psychological interventions and techniques that appear to be effective in promoting improved quality of life and coping in cancer patients. 8.09.2 MAGNITUDE OF THE PROBLEM INCIDENCE, DEATH RATES, AND GENDER DIFFERENCES Cancers vary in their prevalence and mortality. Tables 1 and 2 display data from the USA on the incidence and death rates by specific sites and genders. These data indicate, for example, that the most common diagnosis for women is breast cancer and for men, prostate cancer, but that lung cancer is the number one killer for both (Parker et al., 1997). Similarly, Tables 3 and 4 provide death rate data from selected countries (Parker et al., 1997). These data illustrate the geographic, nationality, and sex differences that exist (e.g., lung cancer death rates of 81.6 per 100 000 for Hungarian men, but a rate of 5.2 for French women). In examining the death rates worldwide, the top killers of women include breast, colon and rectum, lung, and stomach cancers. For men, lung, stomach, colon and rectum, and prostate cancers are the common killers worldwide. 8.09.3 ETIOLOGY, RISK FACTORS, AND PREVENTION The specific events that turn a normal cell into a cancerous cell are still unknown (Rugo, 1993). However, we do know that it takes generations of mutations for cells to become cancerous. The development of cancer within an individual

appears to depend on genetic or environmental factors, with exposure to carcinogens often playing a significant role in many cancers (Rugo, 1993). In fact, cancer incidence and concomitant premature death have been linked to behavioral habits that increase exposure. In the United States, for example, the National Cancer Institute set a goal of a 50% reduction in cancer mortality by the year 2000 through prevention and control efforts focused, in large part, on lifestyle (Greenwald & Cullen, 1985). Primary prevention tactics have attempted to reduce the probability of cancer onset by decreasing exposure to risk factors. For women and men, unhealthy habits have been a behavioral research target, and smoking has been emphasized, as it is related to 30% of all cancer deaths (Rugo, 1993). Cigarette smoking is directly linked to lung cancer, one of the leading causes of death for men and women, and is implicated in cancers of the larynx, head and neck, esophagus, bladder, kidney, pancreas, and stomach. Other lifestyle behaviors that have been linked to greater risk are dietary patterns and sun exposure (e.g., ultraviolet light). Diet research has suggested that diets high in fat and low in fiber may contribute to increased risk for particular cancers (e.g., breast and colon, respectively). Recommendations for modificationÐreductions in fat intake and increases in complex carbohydrates and fiberÐ and weight reduction per se have been suggested (Ashley, 1993; Wynder & Cohen, 1993). In breast cancer prevention, for example, interventions have been developed for atrisk women to reduce weight and fat intake and to increase physical activity (Heber, Bagga, Ashley, & Elashloff, 1993). Parallel interventions focused on increasing fiber in the diet may be important for decreasing one's risk for gastrointestinal cancers. Concerning sun exposure, the number of people diagnosed with skin cancers has been steadily increasing over recent years. In fact, close to 1 million diagnoses of basal and squamous cell skin cancers are expected in 1997 and this figure does not include malignant melanoma (Parker et al., 1997). It has been recommended that time spent exposed to the sun, especially during the hottest part of the day, be decreased and the use of lotions that block exposure to harmful ultraviolet rays be used. Another risk factor involves exposure to certain viruses. The human papilloma virus has been linked to gynecologic cancers and the human immunodeficiency virus has been associated to nonHodgkin's lymphoma and Kaposi's sarcoma. Prevention efforts have focused on safer sexual practices with barrier methods (e.g., diaphram,

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Etiology, Risk Factors, and Prevention Table 1 1997 estimates of cancer incidence by site and gender for the five leading sites. Male (total estimated 785 800)

Female (total estimated 506 000)

Site

Site

Number (%)

Prostate Lung Colon/rectum Bladder Lymphoma

334 500 (43) 98 300 (13) 48 100 (8) 39 500 (5) 30 300 (4)

Number (%)

Breast Colon/rectum Lung Uterus Ovary

180 200 (30) 79 800 (13) 50 900 (11) 34 900 (6) 26 800 (4)

Adapted from Cancer Statistics Ð 1997, American Cancer Society.

Table 2 1997 estimates of cancer mortality by site and gender for the five leading sites. Male (total estimated 294 100)

Female (total estimated 265 900)

Site

Number (%)

Site

Lung Prostate Colon/rectum Pancreas Lymphoma

94 400 (32) 41 800 (14) 27 000 (9) 13 500 (5) 12 400 (4)

Number (%)

Lung Breast Colon/rectum Pancrease Ovary

66 000 (25) 43 900 (17) 27 900 (10) 14 600 (5) 14 200 (5)

Adapted from Cancer Statistics Ð 1997, American Cancer Society.

Table 3 Age-adjusted death rates in adult males per 100 000 for selected countries and disease sites for 1990±1993. Country USA Hungary Poland Italy New Zealand Finland Israel Mexico

All sites 165.3 258.7 204.2 189.2 170.6 149.9 116.9 81.6

(27) (1) (8) (15) (21) (31) (43) (48)

Colon/rectum

Lung

Prostate

Stomach

16.5 38.0 15.4 15.3 26.4 12.4 15.3 3.3

57.1 81.6 71.3 57.0 42.6 46.1 25.7 15.9

17.5 15.8 9.9 11.6 19.0 18.3 9.2 10.6

5.0 23.4 21.6 16.9 9.0 11.5 8.7 9.9

Figures in parentheses are order of rank based on data from 48 countries during the years 1990±1993. Adapted from Parker et al. (1997).

Table 4 Age-adjusted death rates in Adult females per 100 000 for selected countries and disease sites for 1990±1993. Country USA Denmark Austria Russian Fed. Argentina France Japan Albania

All sites

Colon/rectum

Lung

Prostate

Stomach

111.1 (8) 138.7 (1) 105.6 (16) 99.9 (21) 96.4 (27) 86.5 (36) 75.2 (43) 42.7 (48)

22.0 27.2 21.8 14.9 21.3 19.7 6.6 5.2

11.2 17.2 13.7 12.3 9.2 10.1 9.8 2.2

25.6 24.8 9.3 7.3 6.0 5.2 8.1 5.0

2.3 3.9 7.8 16.9 4.8 3.3 14.2 6.3

Figures in parentheses are order of rank based on data from 48 countries during the years 1990±1993. Adapted from Parker et al. (1997).

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use of condoms). Additionally, a family history of cancer may double a person's risk for that same cancer. For example, in breast cancer, the greater the number of affected relatives and the younger these relatives were at the time of diagnosis, the higher a woman's risk. Women with multiple first-degree relatives (e.g., mother, sisters) with premenopausal breast cancer are at highest risk. In such families, breast cancer appears to be transmitted as a gene, and the risk of breast cancer may approach 80%. New evidence is also emerging on a gene associated with the development of prostate cancer. Secondary prevention efforts have been defined as those that identify the disease at the earliest of stages (e.g., when it is preinvasive or localized and asymptomatic) so that effective treatment can be administered sooner and mortality reduced. The chances of successful early cancer detection and treatment depend upon the clinical characteristics of the disease and the screening strategy, and it is unlikely that secondary prevention can proceed effectively unless certain conditions for both are met. Behavioral scientists have focused mainly on the early detection of breast cancer, especially with mammography (the most reliable means of early detection). Investigators (e.g., Rimer, 1992) have considered the psychological, behavioral, sociodemographic, and healthcare factors that appear to be related to women's usage of mammography. Older women, poorer women, and those with weak linkages to the healthcare system, for example, are less frequent users of mammography. Factors such as these result in deadly consequences for women, as poorer or older women without a history of mammography are often diagnosed with more advanced disease. Thus, to the extent that behavioral scientists can affect women's acceptance and utilization of the technique, survival may be directly improved. Early detection efforts have also focused on prostate, skin, and colorectal cancers with behavioral scientists finally beginning to study prostate cancer. 8.09.4 PSYCHOLOGICAL, SOCIAL, AND BEHAVIORAL IMPACT OF CANCER 8.09.4.1 Symptom Appearance In the study of delay in seeking treatment for medical conditions, several definitions of delay have been used, but an oft-chosen operationalization is the number of days from the detection of the first symptom to an end point. This latter variable is less consistently chosen, but has included seeing a physician for symptoms (e.g.,

Coates et al., 1992; Waters, Nichols, Wheeler, Fraser, & Hayes, 1983), being diagnosed with a medical condition (Marshall, Gregorio, & Walsh, 1982), or beginning treatment for the condition (e.g., Howson, 1950). According to this view, all individuals, and even some physicians, would be ªdelayers.º Still another strategy has been to designate some delay as more ªreasonableº than others (e.g., one month from symptom appearance to appearance before a physician; see early work in cancer by Pack & Gallo, 1938). Andersen and Cacioppo (1995) have conceived of delay as comprising a series of stages (e.g., appraisal, illness, behavioral, scheduling) each governed by a conceptually distinct set of decisional and appraisal processes. Appraisal delay, delay surrounding symptom interpretation, has been found to account for most of the delay in seeking a cancer diagnosis (see Andersen & Cacioppo, 1995, for a model of delay). For example, the appraisal interval was approximately 80% of the total delay for women with gynecologic cancer, whereas for women with breast symptoms, a site that has a narrower range of symptom diversity, the interval accounted for 60% of the delay. It is likely that there are several reasons for the finding of appraisal processes accounting for the bulk of the delay time. First, the development of malignancy and the appearance of cancer symptoms are protracted, and a complex and changing symptom picture can be typical, unlike the presentation of many other medical problems (e.g., myocardial infarction; see Matthews, Siegel, Kuller, Thompson, & Varat, 1983). Symptoms can also vary with the site and extent of the disease. For example, ovarian cancer has varied presentationsÐpelvic cramping, low back pain, pain or bleeding with intercourse, urinary frequency irregularities. Moreover, as cancers progress, they can involve other bodily systems (e.g., gastrointestinal, lymphatic) and the symptom picture tends to change from specific or localized complaints (e.g., vaginal discharge/bleeding) to diffuse ones (e.g., loss of appetite, nausea, flu symptoms). Finally, cancer is a life-threatening disease but a low probability disease for many, and thus the appraisal process may lengthen. Briefly considering the other stages, illness delay is defined as the number of days elapsing from the time an individual concludes he or she is ill to the day he or she decides to seek medical help. At this time individuals must decide, for example, whether to seek assistance from others (e.g., physician, others with a similar condition) or to self-treat the illness. After this, the delay is spent in making two remaining decisions. One is the delay between the decision to seek medical

Psychological, Social, and Behavioral Impact of Cancer attention and the person acting on this decision by making an appointment (behavioral delay). The other is the time that elapses between the person making an appointment and his or her first receipt of medical attention (scheduling delay). Economic factors such as affordability, social factors such as family influence, and cognitive factors such as the extent to which the decision to seek medical help is based on issuerelevant thinking are more likely to modulate the delay time between a decision to seek and an action to receive medical care (behavioral delay). In contrast, both patient characteristics (such as the manner in which the person describes his or her concerns and symptoms) and medical environment characteristics (such as a physician's appointment backlog), which are not under an individual's control, may modulate the delay incurred when scheduling an appointment. Therefore, shortening delay to seeking a diagnosis once symptom/sign awareness has occurred (tertiary prevention) would improve survival, as early detection is linked to improved survival rates for many sites (e.g., cervix, breast, colon, prostate). 8.09.4.2 Diagnosis An early clinical study suggested that the diagnosis of cancer produces an ªexistential plight,º meaning that the news brings shock, disbelief, and emotional turmoil (Weisman & Worden, 1976). Today, we know that individuals even become alarmed at the time of medical screening, long before a cancer diagnosis is suggested (Wardle & Pope, 1992). Perhaps because of these natural, difficult reactions, over the years there has been some variability in whether or not patients were told that their diagnosis was cancer. In the USA as well as most Western countries, patients (including children) are now told that their diagnosis is cancer, since this is regarded as the moral, ethical, and legal procedure to follow (Woodard & Pamies, 1992). Support of this policy has documented the beneficial effects of coping successfully with an extreme stressor such as cancer (Taylor, 1983), and follow-up studies of childhood leukemia survivors, for example, have pointed toward more favorable long-term adjustment for children when they learn of their diagnosis early, whether directly, accidentally, or through their own efforts, in comparison with children who learn late (Slavin, O'Malley, Koocher, & Foster, 1982). Likewise, Mosconi, Meyerowitz, Liberati and Liberati (1991) found that of 1171 Italian breast cancer patients, those who were told their diagnosis was cancer were more satisfied with the information they had received from their

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physicians. Still other cross-cultural research has indicated that the majority of patients want to be told their diagnosis truthfully (e.g., Japan, Mizushima et al., 1990; UK, Sell et al., 1993). Further, the manner in which the information is disclosed is important. Physicians who communicate hope have patients who are more hopeful, more favorable towards their cancer diagnosis, and who report more favorable overall emotional adjustment (Sardell & Trierweiler, 1993). This points to the need of physicians and other health professionals to learn more effective and thorough means of communicating information (e.g., diagnosis, treatment, prognosis) to their patients (Sell et al., Woodard & Pamies, 1992). Empirical reports clarify the specific emotionsÐsadness (depression), fear (anxiety), and angerÐthat characterize this period. It is not surprising that depression is the most common affective problem. Survey estimates for major depression are of the order of 5±6% (Derogatis et al., 1983; Lansky et al., 1985), similar to that of the general population (Locke & Regier, 1985). However, when major depression and depressed mood are considered, prevalence rates are higher (e.g., 16% in Derogatis et al., 1983; 25% in a review by Massie & Holland, 1990). Lower rates have been found when specified diagnostic criteria are used and/or the patients assessed are ambulatory with good physical functioning (Levin, Jones, & Sack, 1993; Massie & Holland, 1990). In general, depression is more common for those patients in active treatment rather than those on follow-up, receiving palliative rather than curative treatment, with pain or other disturbing symptoms rather than not, and/or with a history of affective disorder or alcoholism. Study of the psychological responses that characterize the response to cancer diagnosis may shed light on the reactions of individuals to other life-threatening disease or treatment circumstances. In fact, when moods (Cassileth et al., 1985; Westbrook & Viney, 1982) or coping strategies (Felton, Revenson, & Hinrichsen, 1984) have been compared across disease groups (e.g., rheumatoid arthritis, diabetes, cancer, renal disease, hypertension), few differences have been found, suggesting that cancer patients may respond similarly to those with other life-threatening and/or chronic illnesses. On the other hand, patients in these early studies were heterogeneous on many disease variables (e.g., time since diagnosis, active treatment vs. follow-up status, and/or disability) that are important predictors of differential responses among cancer patients. Differences in the patterns of emotional distress may exist. For example, it has been

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suggested that breast and gynecological cancer patients are significantly less depressed, anxious, and hostile (angry) possibly due to perceptions of their illness as less serious than women with other forms of cancer (e.g., lung, gastrointestinal, head and neck; Sneed, Edlund, & Dias, 1992). Similarly, a comparison of patients with limited vs. extensive lung cancer and equivalent levels of physical impairment found that significantly greater mood disturbance was reported by the patients with extensive disease and poorer prognoses (Cella et al., 1987). Related findings have emerged for individuals who perceive their illness as severe (Marks, Richardson, Graham, & Levine, 1986) or who have a sense of pessimism about their life (Carver et al., 1994). In fact, Carver et al. found that general pessimism (vs. optimism) at diagnosis predicted poorer well-being (mood and life satisfaction) at one day before surgery as well as at 3, 6, and 12 month follow-ups. In addition, when patients are followed longitudinally, the emotional responses at recurrence are characterized by significantly higher levels of depression and anger than had been reported at the time of initial diagnosis (Andersen, Anderson, & deProsse, 1989b). It is encouraging that the clinical problem of diagnostic and treatment-related distress can be alleviated through psychological interventions (see Andersen, 1992, for a review). A comprehensive example of such an effort is the study of Fawzy, Cousins et al. (1990) and Fawzy, Kemeny et al. (1990). They attempted to reduce distress and enhance immune functioning in newly diagnosed melanoma patients via a structured group support intervention which included health education, illness-related problem solving, relaxation training, and group support. The format was weekly group treatment for six sessions. Eighty patients with early stage melanoma participated and were randomized to intervention or control conditions. The post-treatment analyses indicated that the intervention subjects reported significantly more vigor, but there were no other emotional distress differences. By six months, emotional distress had improved for the intervention subjects with significantly lower depression, confusion, and fatigue, and higher vigor. Coping data indicated that the intervention subjects reported significantly more use of activebehavioral strategies by the treatment's end, a pattern that continued with the addition of active-cognitive strategies by six months. Regarding the immunologic findings, at six months there was a significant difference in groups with better immunologic status for the intervention subjects. These data are impressive in that they suggest that improvements in psychological

status and coping are associated with changes (upregulation) in immune responses. Improvements such as these in mood and coping are all the more impressive because they are often achieved with brief, cost-effective interventions (e.g., 10 therapy hours with delivery in a group format; Andersen, 1992). Studies that have provided follow-up data also suggest some consolidation of intervention effects across time (upwards of six months post-treatment), with lowered emotional distress, enhanced coping, and/or improved sexual functioning (e.g., Capone, Good, Westie, & Jacobson, 1980; Christensen, 1983). 8.09.4.3 Treatment A certain component of the emotional distress occurring at diagnosis is due to the anticipation of treatment. Current therapies include surgery, radiotherapy and radioactive substances, chemotherapy, hormonal therapy, immunotherapy, and combination regimens and procedures (e.g., bone marrow transplantation, intraoperative radiotherapy). Some patients also undergo difficult diagnostic or treatment monitoring procedures (e.g., bone marrow aspirations), and all treatments are preceded or followed by physical examinations, tumor surveys, and/or laboratory studies. Thus, the diagnostic process of selecting the appropriate therapy and subsequent treatment events can represent multiple medical stressors. As will be discussed below, the data are consistent in their portrayal of more distress (particularly fear and anxiety), slower rates of emotional recovery, and, perhaps, higher rates of other behavioral difficulties (e.g., food aversions, continued fatigue and malaise) in cancer patients compared with healthy individuals undergoing noncancer-related medical treatment. The emotional crisis that characterizes the diagnostic period lessens as time passes, and longitudinal studies find that as treatments end and recovery begins there is an emotional rebound (e.g., Andersen et al., 1989b; Bloom, 1987; Devlen, Maguire, Phillips, Crowther, & Chambers, 1987; Edgar, Rosberger, & Nowlis, 1992). This lowering of emotional distress over time is found even for patients undergoing radical treatment requiring major adjustments (e.g., radical neck dissection with laryngectomy; Manuel, Roth, Keefe, & Brantley, 1987). As cancer treatments (surgery, radiation, etc.) vary considerably in their intent, morbidity, and mortality, we will review each of the major modalities separately and also discuss three clinical problemsÐcompliance, appetite and weight loss, and fatigueÐthat are common across therapies.

Psychological, Social, and Behavioral Impact of Cancer 8.09.4.3.1 Surgery There have been few investigations of cancer surgery, but there are numerous descriptive and intervention studies of the reactions of healthy individuals undergoing surgery for benign conditions. The latter studies are consistent in their portrayal of (i) high levels of self-reported preoperative anxiety predictive of higher postoperative anxiety, and (ii) higher postoperative anxiety predictive of longer recovery (e.g., decreased time out of bed, increased pain reports). What may distinguish cancer surgery patients are higher overall levels of distress and slower rates of emotional recovery. For example, Gottesman and Lewis (1982) found greater and more lasting feelings of crisis and helplessness among cancer patients in comparison to benign surgery patients for as long as two months following discharge. Considering these data, findings on the interaction patterns of physicians and cancer patients on morning surgical rounds is disturbing. Blanchard, Ruckdeschel, Labrecque, Frisch, and Blanchard (1987) found attending physicians on a cancer unit less likely to be supportive and to address patientsº needs than physicians treating general medical patients. The heavier volume and more seriously ill patients common to cancer units might be sources for this unfortunate relationship. Related findings indicate that oncology nurses might find their job significantly more stressful than other taxing assignments (e.g., cardiac, intensive care, or operating room; Stewart, Meyerowitz, Jackson, Yarkin, & Harvey, 1982), and may limit their communication with cancer patients, especially those experiencing a recurrence (Wilkinson, 1991). As noted above, there has been considerable research on the psychological and behavioral aspects of response to surgery, and many effective interventions have been tested. Components of these interventions include procedural information (e.g., how the surgery is to be performed as well as pre- and postoperative events from the perspective of the patient), sensory information on the actual physical sensations of the surgery or preparatory events, behavioral coping instructions, cognitive coping interventions, relaxation, hypnosis, and emotion-focused interventions. In a metaanalysis of this literature, Johnston and Vogele (1993) reported that procedural information and behavioral instructions show consistent and strong positive effects on postoperative recovery. Effects are significant for a broad band of measures, including ratings of negative affect and pain, amount of pain medication,

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length of stay, behavioral recovery, and physiological indices. 8.09.4.3.2 Radiotherapy At least 350 000 individuals in the USA receive radiation therapy each year. Clinical descriptions have noted patientsº fears (e.g., being burned, hair loss, sterility); while such outcomes do occur, they are site- and dosagedependent. To understand radiation fears, the surgical anxiety studies already described above have been used as a research paradigm. Here, again, anxiety (and sleeplessness) can often cause more overall distress than physical symptoms (Munro, Biruls, Griffin, Thomas, & Vallis, 1989), and are predictors of treatment response (Wallace, Priestman, Dunn, & Priestman, 1993). If interventions to reduce distress (especially anticipatory anxiety) are not conducted, heightened post-treatment anxiety is also found (Andersen, Karlsson, Anderson, & Tewfik, 1984; Andersen & Tewfik, 1985) and might be maintained for as long as three months post-therapy, particularly when treatment symptoms linger (e.g., diarrhea, fatigue; King, Nail, Kreamer, Strohl, & Johnson, 1985). When acute side effects resolve (usually by 12 months post-treatment), there appears to be no higher incidence of emotional difficulties for radiotherapy patients than for cancer surgery patients (Hughson, Cooper, McArdle, & Smith, 1987). 8.09.4.3.3 Chemotherapy Of all the treatment modalities, the greatest progress has been in the understanding of psychological reactions to chemotherapy and the related toxicities, particularly nausea and vomiting. Over a decade of research has revealed that approximately 60% of cancer patients will develop nausea and another 50% will develop vomiting in response to cytotoxic treatments (Morrow & Hickok, 1993). Psychological research has focused on eliminating or reducing these problems through hypnosis (e.g., Redd, Andersen, & Minagawa, 1982), progressive muscle relaxation with guided imagery (e.g., Burish & Jenkins, 1992; Carey & Burish, 1988), systematic desensitization (e.g., Morrow et al., 1992), cognitive distraction (e.g., Greene, Seime, & Smith, 1991; Vasterling, Jenkins, Tope, & Burish, 1993), and biofeedback (e.g., Burish & Jenkins). The routine use of antiemetic and antianxiety drugs and the development of newer chemotherapeutic agents has resulted in an overall lower incidence and clinical severity of nausea and vomiting. However, the above gains may be

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somewhat offset by the more current medical practice of using dose-intensive regimens as well as treating disease types or stages not previously given adjuvant chemotherapy (Andrykowski, 1993). It is clear that pretreatment with medications can control nausea and thus reduce vomiting, but pretreatment can also reduce the likelihood of anticipatory reactions. Anticipatory reactions are believed to be conditioned responses resulting from the learning process of classical conditioning in which side effects (e.g. nausea and vomiting) become associated with previously neutral stimuli (driving to the hospital, sitting in the waiting room, etc.). Once anticipatory nausea and vomiting develops, antiemetics are less effective, and it has been suggested that behavioral strategies should be used to aid patients (Andrykowski, 1993; Morrow & Hickok, 1993; Redd, 1993). Other research that may be helpful includes identifying the characteristics of individuals (e.g., high pretreatment anxiety or autonomic activity; severity of post-treatment vomiting in the early cycles; age; susceptibility to motion sickness or gastrointestinal distress), as well as characteristics of the agents (e.g., rated emetogenic potential of the regimen, dosages, rate of infusion) that place patients at risk of the development of nausea and vomiting (see Carey & Burish, 1988, or Morrow, 1986, for empirical tests of variables; see Morrow & Hickok, 1993, for a review of the potential variables). 8.09.4.3.4 Bone marrow transplantation Over the past two decades, bone marrow transplantation (BMT) has evolved from an experimental procedure performed only when conventional therapies have failed (e.g., recurrent breast cancer) to an effective therapy considered as an alternative worthy of study in clinical trials as a first-line therapy (Baker, Curbow, & Wingard, 1991). It was initially used only for those with lymphohematopoietic malignancies or disorders characterized by bone marrow failure (e.g., leukemia, Hodgkin's disease, and non-Hodgkin's lymphoma; Wingard, Curbow, Baker, & Piantadosi, 1991), but is now being used with a variety of solid tumors (e.g., neuroblastomas, germ cell tumors, and cancers of the breast and ovary). The rapid acceptance and expanded use of this toxic modality is no less than dramatic. For example, a Phase II study has begun in the USA for BMT as an adjuvant treatment for breast cancer patients with 10 or more positive lymph nodes (Winer & Sutton, 1994). If beneficial, it is possible that thousands of breast cancer patients may undergo BMT as a standard treatment for metastatic as well as regional

disease in the near future (Winer & Sutton, 1994). At present it is estimated that there are over 5000 transplants performed each year worldwide (Alby, 1991). BMT is a complex and potentially fatal treatment. The target of the treatment, the bone marrow, is destroyed with high dose chemotherapy, with or without whole body radiation afterwards. The bone marrow to be transplanted comes from a donor (allogenic BMT) or from the patient (autologous BMT) after it has been removed and treated. Although allogenic BMT has a role, its expansion is limited by the need for a suitable donor and the subsequent risk of graft vs. host disease for the patient. In the case of autologous BMT, a variety of ex vivo procedures are used to destroy the malignant cells in the patient's marrow prior to reinfusion, including treatment with cytotoxic drugs, exposure to monoclonal antibodies that will attack tumor-associated antigens, or harvesting and introducing stem cells (cells from peripheral blood). Patients (and their families) are faced with a number of stressors: a life-threatening illness, location of a suitable donor (for allogeneic transplants see Alby, 1991; Patenaude, 1990), a toxic treatment, and common and potentially fatal side effects (e.g., liver failure). There are many acute side effects as well (e.g., hair loss, mouth and gastrointestinal mucositis, infertility, skin breakdown, infection, pneumonia). Hospitalization is prolonged (often three to six weeks or longer) and it is generally spent in isolation (Alby, 1991; Baker et al., 1991; Winer & Sutton, 1994). Of course, in the end, the treatment can fail and the cancer persist or rapidly recur (Patenaude, 1990; Winer & Sutton, 1994). The many difficultiesÐtoxicity, uncertainty, illness and isolation, dependency, constant need for care, expenseÐall contribute to patients feeling out of control (helplessness), alone, anxious, and/or depressed (Alby, 1991; Altmaier, Gingrich, & Fyfe, 1991; Brown & Kelly, 1976). In attempting to cope, patients may be demanding, or the converse, withdrawn (Brown & Kelly, 1976; Patenaude, 1990). Psychological efforts have focused on providing support to patients, their families, and staff (Alby, 1991), and maximizing control for patients, such as making choices about the hospital environment whenever possible (Patenaude, 1990). For example, BMT rooms are often equipped with televisions/radios and weights and/or bicycles are provided for exercise as patients become stronger. Additionally, patients have been encouraged to bring personal items from home (e.g., pictures, photographs) to decorate their rooms. Increased medical complications, age,

Psychological, Social, and Behavioral Impact of Cancer distance from home, and poorer pretransplant psychosocial adjustment are associated with the need for more intensive psychological consultation (Futterman, Wellisch, Bond, & Carr, 1991). 8.09.4.3.5 Treatment side effects Important steps have also been made toward understanding the etiology and prevention of at least three common disease/treatment-related complications. First, appetite and weight loss are significant clinical problems for cancer patients susceptible to tumor-induced metabolism or taste changes, having tumor-related obstructions (often diagnosed as primary cachexia/anorexia), or receiving gastrointestinaltoxic chemotherapy or abdominal radiotherapy (secondary cachexia/anorexia). Malnutrition is associated with increased morbidity and mortality (Knox, 1991). Approximately 50% of the above patients will develop food aversions, and have two or three aversions to particular foods; common aversions involve protein sources such as meats, eggs, and dairy products (see Jacobson & Schwartz, 1993, for a review). In particular, learned food aversions due to chemotherapy appear to be robust, with rapid acquisition (usually after one to three treatments) and maintenance after long delays (e.g., 48 hours) between food intake and aversive reactions (nausea) from the drugs (Bernstein, 1986; Jacobson & Schwartz, 1993). Research in this area has pointed the way, for example, to interventions employing novel tastes or ªscapegoatº foods (e.g., lemon-lime Kool-Aid, unusually flavored hard candies such as coconut; Jacobson & Schwart, 1993) to ªblockº conditioning to familiar diet items, reducing food and beverage intake prior to drug administration, and ingesting carbohydrate rather than protein source meals. While food aversions may not involve appetite or weight loss, patients may unknowingly develop aversions to their favorite foods and this can affect their daily routine and perceived quality of life (Jacobson & Schwartz, 1993; Knox, 1991). Second, fatigue is a problem reported by the majority of patients receiving radio- or chemotherapy (Nail & King, 1987; Smets, Garssen, Schuster-Uitterhoeve, & deHaes, 1993). Fatigue, and related symptoms described by patients as tiredness, lack of energy, sleepiness, confusion, and poor concentration have been related to cancer morbidity and poor treatment compliance. Although a common experience, few studies have been conducted on the correlates of fatigue (see Irvine, Vincent, Bubela, Thompson, & Graydon, 1991, for a review; Pickard-Holley, 1991; see Smets et al.,

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1993, for a review). Irvine et al. (1991) note that research has not demonstrated consistent relationships between fatigue, anemia, sleeplessness, and/or psychological distress (e.g., negative mood/depression), but it appears that fatigue does reduce overall daily functioning. Psychological and behavioral interventions have focused on alleviating or increasing tolerance to fatigue through preparatory information on side effects and activity±rest cycle recommendations (e.g., naps in the afternoon; Nail & King, 1987; Smets et al., 1993), as well as other activity planning or coping efforts (e.g., planning/scheduling activities, decreasing nonessential activities, and relying on others for assistance as needed; Rhodes, Watson, & Hanson, 1988). The expectation and/or experience of unpleasant side effects can compromise a patient's quality of life such that the patient may miss treatment appointments and be unwilling or unable to continue treatment, regardless of whether it is curative or palliative (Morrow & Hickok 1993; Richardson, Marks, & Levine, 1988). With noncompliance, the dosage of treatment may be reduced, which can, in turn, lower the cure rate. In short, noncompliance is a behavioral problem that can have a direct impact on the effectiveness of cancer therapy. Noncompliance with treatment has been related to increased emotional distress (e.g., Gilbar & Kaplan De-Nour, 1989; Richardson et al., 1988), severity of treatment side effects (e.g., nausea and vomiting, Lewis, Linet, & Abeloff, 1983; Richardson et al., 1988), and lower income (Lebovits et al., 1990). Even when patients are responsible for self-administration of therapy, such as taking their chemotherapy at home in order to reduce the number of required, but inconvenient, hospital visits, their noncompliance may continue. One report of multidrug therapy with adults having hematologic malignancies indicated that self-reports (vs. sera reports) overestimated compliance by a factor of two (Richardson et al., 1987). Psychological interventions have focused on a variety of methods to improve patient compliance, including appointment reminders, clearly written and specific treatment communications (Anderson & Kirk, 1982), home visits, and medication-taking shaping interventions (Richardson et al., 1987), as well as hospital interventions such as offering a tour of the oncology clinic, videotape presentations about the therapy, discussion/question sessions, and take-home information (Burish, Snyder, & Jenkins, 1991). Burish et al. and others (e.g., Nail & King, 1987; Rainey, 1985) suggest that preparatory information can improve coping with treatment.

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Importantly, psychological interventions can reduce distress during and immediately following cancer treatments. We now present the findings from two illustrative studies. Cain, Kohorn, Quinlan, Latimer, and Schwartz (1986) compared individual and group therapy formats with 72 women with recently diagnosed gynecologic cancer or who were currently receiving therapy for such a cancer. The intervention had eight components including discussion of the causes of cancer at diagnosis, impact of the treatment(s) on body image and sexuality, relaxation training, emphasis on good dietary and exercise patterns, communication difficulties with medical staff and friends/family, and setting goals for the future to cope with uncertainty and fears of recurrence. The eight-session program was conducted during individual sessions conducted in the hospital or the woman's home or in weekly groups of four to six patients conducted at the hospital. Outcome measures were administered pre- and post-treatment and at a six month follow-up. Post-treatment analyses indicated all groups improved with time; however, anxiety was significantly lower for the individual therapy subjects only. Gains for the intervention subjects were more impressive with the six month follow-up data when there were no differences between the intervention formats, but both groups reported less depression and anxiety and better psychosocial adjustment (including health perspectives, sexual functioning, and use of leisure time) than the no treatment control group. Thus, the brief intervention, delivered either in individual or group format, appeared to be immediately effective, with gains enhanced during the early recovery months. Edgar et al. (1992) provided a psychosocial intervention to 205 patients who were randomized into two groups: one group received the intervention soon after entering the study and the other group after a wait of four months. The majority (n =159) of patients had been diagnosed with breast, colon, lung, uterine, or head and neck cancers. Both groups were assessed on depression, anxiety, illness worry, perceived personal control, and ego strength at entry into the study, and at 4, 8, and 12 month intervals. The intervention (comprising five one-hour sessions) focused on coping skills and included problem solving, goal setting, cognitive reappraisal, relaxation training, and, at four month intervals, workshops on healthcare information and available resources. While coping improved over the year for all patients, the later intervention group experienced lower levels of distress sooner than the group who had received the intervention earlier. Edgar et al.

(1992) suggest that the delay in intervention may have been beneficial because it afforded patients the time to reduce feelings of being overwhelmed and they were, therefore, more ready to participate in the intervention. Additionally, data indicated that patients with lower ego strength and cancer diagnoses other than breast cancer reported greater distress and, therefore, particularly benefited from the intervention, while patients with higher ego strength tended to cope well regardless of the intervention. These and related data (e.g. Forester, Kornfield, & Fleiss, 1985; see Andersen, 1992, for a review) attest to the significant distress that occurs when patients are in the midst of coping with diagnosis and treatment. Importantly, impressive gains can be achieved by the end of the intervention and often these positive gains are stronger with continued follow-up. Again, these effects have been achieved with brief interventions.

8.09.4.3.6 Choosing cancer treatments Psychological and behavioral data have been (and should continue to be) important to patients and physicians alike for making choices among comparable treatments. Treatments that result in less quality of life disruption often become standard treatment. The most obvious example of the importance of psychological data influencing cancer treatments was that documenting the more positive outcomes (e.g., feeling more attractive, fewer sexual difficulties) for women treated with breast-saving procedures (lumpectomy plus adjuvant radiation and/or chemotherapy) rather than modified radical mastectomy (e.g., Margolis, Goodman, & Rubin, 1990). Similarly, lower rates of erectile and ejaculation difficulties (e.g., 30% vs. 90%) are important reasons for some men to choose supervoltage irradiation rather than surgery for prostate cancer (radical prostatectomy; see Andersen & Lamb, 1995, for a review). Parallel treatment data are available for women with genital cancer including those with uterine disease (Andersen, Anderson, & deProsse, 1989a) or preinvasive vulvar disease (Andersen, Turnquist, LaPolla, & Turner, 1988). Additionally, Rathmell, Ash, Howes, and Nicholls (1991) suggest that unless a survival advantage is demonstrated, patients with advanced head and neck cancer may want radiotherapy alone vs. surgery plus radiotherapy, as the treatment combination is associated with poorer quality of life scores (e.g., psychological well-being, speech quality, ability to eat, levels of energy and activity).

Psychological, Social, and Behavioral Impact of Cancer 8.09.4.4 Recovery and Long-term Survival The most important cancer end points have been treatment response rates, length of diseasefree interval, and survival. Yet, as the prognosis for some sites has improved, there has been increased attention to the quality of life, particularly for long-term survivors of cancer. The term ªsurvivorº typically refers to individuals surviving at least five years, as the probability of late recurrence declines significantly after that time for most sites. As individuals recover and resume their life patterns, there may be residual emotional distress, with some difficulties which require continued coping, and even the appearance of still other problems (late sequelae). We will discuss each of these circumstances, and provide examples of both emotional and physical challenges which may confront the cancer survivor. An investigation by Dunkel-Schetter, Feinstein, Taylor, and Falke (1992) sheds light on the strategies cancer patients use as they recover and resume their life activities. They studied coping patterns of 603 cancer patients. Patient diagnoses included breast cancer, gastrointestinal, circulatory or lymph, gynecological, and respiratory cancers, as well as others. The timing of the assessment ranged from initial diagnosis to more than five years post-treatment. Five coping patterns were identified: seeking or using social support, focusing on positive aspects, distancing, cognitive escapeavoidance (e.g., fantasizing or wishful thinking with fatalistic thoughts of poor outcomes), and behavioral escape-avoidance (e.g., social withdrawal, drug use). All patients used multiple coping strategies, but distancing was the most common. Unique patterns were found for subgroups. For example, individuals who viewed cancer as more stressful tended to use cognitive and behavioral escape-avoidance strategies, whereas patients reporting less distress relied on seeking or using social support, focusing on the positive, and distancing. Data such as these may have many uses, such as being used to tailor psychological interventions to patient subgroups (e.g., identifying those patients who are likely to use drugs/alcohol to cope). Lingering emotional distress from the trauma of diagnosis, treatment, and, more generally, life threat, may occur for a small subset, 5±10%, of cancer patients. When pronounced, this long-term distress has been likened to posttraumatic stress disorder. In fact, having residual distress from the diagnosis and treatment of a life-threatening illness is included as one of the circumstances which may precipitate

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a Diagnostic and statistical manual of mental disorders (American Psychiatric Association, 1994) diagnosis of post-traumatic stress disorder. It is unlikely that such extreme distress occurs for the ªaverageº cancer patient, and instead may only be a possibility for those who have undergone the most difficult of treatment regimens (e.g., BMT), multiple agent and/or lengthy chemotherapy regimens, as might be given to Stage III ovary patients, or those who undergo life-altering and/or disfiguring cancer treatments (e.g., limb amputations, pelvic exenteration, laryngectomies). As is the case with anxiety disorders, individuals with a prior history of traumatic stress might also be at heightened risk. Secondly, some cancer survivors may need to cope with the expected, but nevertheless troubling, sequelae which may be consequences of the disease or treatment and be permanent. For example, coping with altered abilities (e.g., loss of natural speech following laryngectomy) or changes in organ functions (e.g., infertility) may require adjustment which demands new behaviors or emotions. Others may have to cope with losses (e.g., a sexual relationship that does not include intercourse). Thirdly, late side effects of cancer treatment, for example, a bowel dysfunction that is traced to pelvic radiotherapy, can occur and change health status as well as impact mood and coping. Despite these possibilities, longitudinal data indicate that if the disease is controlled, by one year post-treatment the severe distress of diagnosis will have dissipated and emotions will have stabilized. The first longitudinal studies conducted in the UK for breast cancer patients indicated that by 12 (Maguire et al., 1978) and 24 months (Morris, Greer, & White, 1977) that approximately 20% of the patients had problems with moderate to severe depression in comparison to 8% of benign disease comparison subjects. However, controlled longitudinal studies of breast (Bloom, 1987; Vinokur, Threatt, Caplan, & Zimmerman, 1989) and gynecologic (Andersen et al., 1989b) patients conducted in the USA and replicated with data from The Netherlands (deHaes, van Oostrom, & Welvaart, 1986) have indicated no differences between the levels of emotional distress of women with cancer and either benign disease or healthy comparison subjects. Similar declines and lowered levels of distress have been found in retrospective (Cella & Tross, 1986) and longitudinal (Devlen et al., 1987) studies of Hodgkin's disease and non-Hodgkin's lymphoma patients. The consistency of findings for the studies conducted during the 1980s is important because it represents replications across site, and, to some degree, treatment toxicity. In sum,

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we preface the remaining discussion by noting that global adjustment problems do not occur for the majority of cancer survivors; a more likely scenario is the occurrence of problem areas. Irvine, Brown, Crooks, Roberts, and Browne (1991) concluded in their review of survivorship following breast cancer that few patients experience long-term psychological distress, yet 20±30% will experience loss of roles (e.g., employment), decreased functional abilities, and problems with social relationships. Data on the adjustment of BMT survivors reveal a somewhat slower recovery (Syrajala, Chapko, Vitaliano, Cummings, & Sullivan, 1993). Comparison of BMT survivors and other cancer patients on maintenance chemotherapy indicated that psychological functioning was satisfactory for both groups when assessed three to four years postdiagnosis (Altmaier et al., 1991). However, when BMT patients were assessed sooner (two or four years post-treatment), they reported poorer physical functioning, greater impaired personal functioning (e.g., need for self-care assistance), and more relational problems (e.g., sexual difficulties) than individuals on maintainence chemotherapy (Altmaier et al., 1991). Also, there are data to suggest that there may be some risk of neuropsychological impairment from BMT procedures. Data from Andrykowski et al. (1992) suggest impairments in memory and higher cognitive processing, which may be a sequela of BMT, per se, or prior cancer treatments which precede BMT (e.g., cranial radiation, intrathecal chemotherapy). The many difficult aspects of BMT noted above (e.g., intensive chemotherapy, possible whole body irradiation, long recovery time, isolation) may account for this slowed and potentially more problematic recovery (see Andrykowski, 1994; or Winer & Sutton, 1994 for a review). Data suggest that sexuality may be one dimension that is more likely to undergo disruption than other major life areas. All cancer patients with solid tumors (approximately 85% of adult patients) are vulnerable to sexual dysfunction. Across sites, estimates range from 10% (e.g., breast cancer patients treated with lumpectomy), 70±90% (e.g., women with vulva cancer treated with modified radical vulvectomy), to 100% (e.g., men with prostate cancer treated with radical prostatectomy), with the distribution skewed toward greater levels of disruption (see Andersen & Lamb, 1995, for a review). Among the hematologic malignancies, such as Hodgkin's disease, estimates are in the range of 20% (Andersen & Lamb, 1995). The data within treatment sites indicate that disease and treatment factors are the primary etiologies for sexual problems (e.g., gynecologic

complications associated with long-term adjuvant tamoxifen therapy for breast cancer, Wolf & Jordan, 1992; female androgen deficiency syndrome resulting from cytotoxic agents and/ or bilateral salpingo-oophorectomies, Kaplan & Owett, 1993). Controlled longitudinal studies of breast cancer patients (Maguire et al., 1978; Morris et al., 1977) and gynecologic cancer patients (Andersen et al., 1989a) have indicated that if sexual problems develop, they do so as soon as intercourse resumes, and, if untreated, they are unlikely to resolve (see Andersen & Elliott, 1994, for a discussion). In addition to medical contributors, we have focused on identifying sexual relevant psychological factors in predicting risk for sexual morbidity. Specifically, sexual self-schema (selfconcept) is a cognitive view about sexual aspects of oneself; it is derived from past experience, manifest in current experience, and it guides the processing of domain-relevant social information (Andersen & Cyranowski, 1994). The concept includes two positive aspectsÐan inclination to experience romantic/passionate emotions and a behavioral openness to sexual experiences and/or relationships; and a negative aspectÐembarrassment and/or conservatismÐ which appears to be a deterrent to sexual expression. Using a measure developed for this purpose, the predictive power of sexual schema was examined in the context of risk for sexual morbidity following gynecologic cancer. Consistent with our definition of the construct, we anticipated that women with a negative sexual self-concept, in contrast to women with a positive sexual self-concept, would be at greatest risk for sexual difficulty. Negative sexual schema women would be expected to have more difficulties because they are, in general, less romantic/passionate in their emotions, less open to sexual experiences, and more likely to have negative feelings about their sexuality. In a field test of sexual schema in the prediction of gynecologic cancer outcomes (Andersen, Woods, & Copeland, 1997), we assessed 62 women who were currently disease free but who received treatment from six months to five years previously for Stage I±II disease. Comparison subjects included 68 women seeking routine gynecologic care. Analysis of the quality of life data replicated earlier prospective longitudinal findings (Andersen, Andersen, & de Prosse, 1989a)Ðspecifically, sexuality is the major life area of disruption for the survivor. For example, there were no differences between the groups in the areas of mental health (emotional distress, depression) or social functioning. In contrast, a comparison between the samples in terms of current sexual functioning found significant differences, with the cancer

Psychological, Social, and Behavioral Impact of Cancer sample reporting lower levels of sexual behavior, sexual responsiveness, and global evaluations. We tested the utility of the schema construct with the cancer sample in the prediction of sexual responsiveness (e.g., desire, excitement, orgasm, and resolution) and sexual behavior (frequency of intercourse) with regression analyses. Sexual self-schema accounted for a significant and large portion of the variance (26%) in the prediction of current sexual responsiveness. The high incidence of sexual and fertility disruption has, in part, been the reason for the concern over marital disruption among adult cancer patients. An early clinical study of women receiving radical mastectomy noted the realistic feelings of body disfigurement that both the women and spouses would feelÐ prompting sexual retreat, emotional estrangement, and, not surprisingly, marital disruption (Bard & Sutherland, 1952). Other concerns over the marriage originate from analyses of the interpersonal relationships, per se, (Wortman & Dunkel-Schetter, 1979). Despite the emotional distress and, for some, accompanying sexual disruption that couples experience, data from retrospective studies with comparison groups (Cella & Tross, 1986) and from the controlled longitudinal studies previously discussed indicate that the majority of marriages remain intact and satisfactory. These data are consistent with prospective studies showing that, when health problems arise for newly married couples, they are not among those problems precipitant to divorce (Bentler & Newcomb, 1978). However, multicenter studies have indicated that young survivors of childhood cancers are significantly less likely to marry, and once married they may be at greater risk for subfertility (Byrne et al., 1985, 1988; Teeter, Holmes, Holmes, & Baker, 1987). Yet, the cancer experience is stressful for those closest to the patient (see Baider, Cooper, & Kaplan De-Nour, 1996, for a review), and the kin's distress may approach that of the patient's (Baider & Kaplan De-Nour, 1988; Cassileth et al., 1985). Family strain appears to be affected by illness variables (e.g., prognosis, stage/ duration of illness, care-giving demands, patient's distress), family variables (e.g., age and gender of family members, socioeconomic status, other family stressors), and relational variables (e.g., quality of marriage, marital communication, family stage, and social support; see Sales, Schulz, & Biegel, 1992, for a review). Those couples in which the wife/mother has cancer and young children are still in the home may be at heightened risk for relationship difficulties (Vess, Moreland, & Schwebel, 1985). In addition, Ell, Nishimoto, Mantell, and

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Hamovitch (1988) found that those kin who were functioning poorly (e.g., lower perceived personal control, less adequate emotional support from close others, and greater stress unrelated to cancer) when the patient was diagnosed, or who lost personal and social resources during the patient's treatment and recovery, tended to function poorly at followup. In sum, a subset of partners and family members appear to be at psychosocial risk. For a review of strategies (focusing on information and support) that have been used to assist spouses of cancer patients cope with stress over the illness course, see Northouse and PetersGolden (1993). Finally, other, nonpsychological difficulties may occur following cancer, and these problems may have psychological concomitants (e.g., low self-esteem, perceived worthlessness). For example, it has been found that survivors of childhood or adolescent cancer are at risk of rejection from the armed services or college entrance and have difficulty obtaining health and life insurance (Teta et al., 1986). Job discrimination and insurance difficulties have also been reported by survivors of bone marrow transplantation (Wingard et al., 1991). There have been few interventions targeted for cancer survivors per se. One such study was that by Telch and Telch (1986). They compared the effectiveness of coping skills instruction vs. supportive therapy for a heterogeneous sample of cancer patients on follow-up. An important research design aspect was the screening of the subjects, and only those with ªclear evidence of psychological distressº were included in the trial. Both interventions were offered in a group format. Instruction in coping skills taught cognitive, behavioral, and affective strategies and included goal setting, self-monitoring, and role playing. Relaxation training and stress management skills were also included and patients provided ratings of their home practice. The group support intervention provided an environment for patients to discuss concerns but there was no specific agenda. Each group met for six weeks. Forty-one cancer patients completed the study. Analyses for the emotional distress data indicated that the coping skills group improved significantly across all measures, the support group improved on anxiety and depression only, but the no treatment control worsened and reported significantly more mood distress.

8.09.4.5 Recurrence and Death Cancer recurrence is devastating; the magnitude of distress is even greater than that found

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with the initial diagnosis (Mahon, Cella, & Donovan, 1990; Thompson, Andersen, & DePetrillo, 1992), and studies contrasting cancer patients showing no evidence of disease with those receiving palliative treatment (e.g., Cassileth et al., 1985) have reported the greatest distress for those with disseminated disease (Bloom, 1987). Patients recently told of their cancer recurrence reported being less hopeful, more discouraged, having increased thoughts of death and dying as well as feelings of guilt and regret about their previous treatment decisions. In one study (Mahon et al., 1990), 45% of the patients indicated that they perceived their recurrence as ªpunishment.º Therefore, difficult decisions (e.g., beginning a regimen that offers little chance for cure and has side effects vs. no treatment) are made in a context of extreme emotional distress and physical debilitation. However, the few studies of psychological interventions for adult patients have indicated that important emotional gains can be achieved during terminal stages (Linn, Linn, & Harris, 1982) and that children and adolescents, as well as adults, can make independent decisions about the continuation of therapy when death is imminent (Nitschke et al., 1982). At this time of significant emotional turmoil and physical difficulty, psychological interventions appear to enhance the quality of life. One example is an investigation of a group support intervention for women with breast cancer conducted by Spiegel and colleagues (Spiegel & Bloom, 1983; Spiegel, Bloom, & Yalom, 1981). Women were randomized to no treatment or a group treatment intervention that included discussion of death and dying, family problems, communication problems with physicians, and living fully in the context of a terminal illness. The intervention subjects were also randomized a second time to two conditions: no additional treatment or self-hypnosis for pain problems (Spiegel & Bloom, 1983), which was incorporated into the support group format. All intervention groups met for weekly meetings for one year, for a total of 75 therapy hours. At the end of the first year the groups formally ended, but members could continue to meet as they wished or were able; some groups lasted for an additional two years. Eighty-six women, 50 intervention and 36 no treatment control, with metastatic breast cancer and referred to the intervention by their oncologist, participated. Following random assignment, there was subject loss (e.g., refusal, too weak, death) with the study beginning with 34 intervention and 24 control participants; however, the survival data are reported for the original sample of 86. Analyses indicated that the intervention group reported significantly

fewer phobic responses and lower anxiety, fatigue, and confusion and higher vigor than the controls. These differences were evident at all assessments but the magnitude increased from 4 to 12 months. There was also a significant decrease in the use of maladaptive coping responses by the intervention group. Regarding the findings from the hypnosis substudy, women receiving hypnosis within the group support intervention reported no change in their pain sensations during the year, while pain sensations significantly increased for the other women in group support who did not receive hypnosis. Similar findings were reported for pain sufferingÐa slight decrease for the women who also received hypnosis and a significant increase in suffering for the remaining intervention women. It is important to note that pain sensation scores for both groups were, however, significantly lower than those for the no intervention controls, suggesting that the hypnosis component provided an additive analgesic effect to other group treatment components. The most startling data from this project were reported in a survival analysis described at the beginning of the chapter. A variety of follow-up analyses, controlling for initial disease stage, days of radiotherapy, or use of androgen or steroid treatments were conducted and all indicated the same survival differences favoring the intervention participants. Unlike other studies, interventions for terminal patients tend to be intensive and lengthy, such as ªseveral sessionsº or ªuntil death.º Finally, a frequent complication of disseminated disease is pain. Although it might be one of the first symptoms of cancer or be present when disease is localized, pain is more common and less controllable for those with metastatic disease (Ahles, Ruckdeschel, & Blanchard, 1984). Some 80% of patients with recurrent cancer report moderate to severe pain compared with 40% of earlier stage patients (see Ashburn & Lipman, 1993, for a review). The major cause of cancer pain, accounting for roughly 70% of the cases is due to direct tumor involvement (e.g., metastatic bone disease, nerve compression). Another 20±30% of cases are due to medical therapy (e.g., postoperative pain, radiation-induced pain). The remaining cases are individuals with pain problems unrelated to their cancer (e.g., osteoarthritis; Foley, 1985). Thus, the pain experienced by cancer patients can be any combination of acute malignant pain, chronic malignant pain, and/or chronic nonmalignant pain (Ashburn & Lipman, 1993). As the pain experienced by each patient is variable (e.g., type, duration, resting vs. active, diagnosis/treatment factors), it is important

Conclusion that a pain assessment be completed before and during implementation of treatment for pain control (Ashburn & Lipman, 1993; Coyle, Adlehardt, Foley, & Portenoy, 1990). Besides pain-specific qualities and diagnostic/treatment considerations, other factors are also important in assessing the patient's experience of pain. For instance, pain is associated with depression, anxiety, and delirium (Massie & Holland, 1992), and may increase suicidal ideation (Coyle et al., 1990). If pain worsens or is difficult to control, quality of life deteriorates and emotional distress increases (Massie & Holland, 1992), physical mobility may lower (Ashburn & Lipman, 1993), and social interactions may decline (Strang & Qvarner, 1990). The most difficult circumstance of pain control is when chronic pain accompanies disease progression. Treatment combinations of antitumor therapy, anesthetic blocks, and behavioral approaches are considered. Behavioral research has focused on assessment strategies (Daut, Cleeland, & Flanery, 1983; Keefe, Brantley, Manuel, & Crisson, 1985) and on pain reduction interventions, particularly hypnosis, to reduce pain (Spiegel & Bloom, 1983). When palliative therapy is of little use and/or brings further debilitation, psychological interventions may provide support and pain control and, secondarily, treat pain sequelae (e.g., sleep disturbances, reduced appetite, irritability).

8.09.5 CONCLUSION Significant progress has been made in understanding the psychological, social, and behavioral aspects of cancer. There has been progress in prevention and control. Research on smoking prevention and cessation addresses the factor responsible for 30% of all cancer deaths. Similar efforts to encourage participation in screening and early detection programs for breast, cervix, skin, prostate, and colon and rectum cancers may also improve mortality rates. More is known about the psychological processes and reactions to the diagnosis and treatment of cancer than is known about any other chronic illness. Breast cancer patients (see Glanz & Lerman, 1992, for a review) have been well studied, but other disease sites, men, and children, are becoming more commonly studied. Future research will probably test the generalizability of these descriptive data and formulate general principles of adjustment to illness. While providing estimates of the magnitude of quality of life problems, these data can be used for models that predict which

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patients might be at greatest risk for adjustment difficulties (see Andersen, 1996, for a discussion). The latter is an important step toward designing interventions tailored to the difficulties and circumstances of cancer patients. The mental health community emphasizes the need to reduce stress and prevent deteriorations in quality of life for those with cancer. The importance of such efforts is underscored by three contextual factors. One, the stability of many cancer mortality rates, particularly those with the highest incidence such as lung and breast, makes it imperative that new, innovative treatments be developed to improve survival rates. Two, research has demonstrated that psychological interventions result in significant improvements in quality of life (see Andersen, 1992, for a review). Three, both qualitative (Maier, Watkins, & Fleshner, 1994) and quantitative (Herbert & Cohen, 1993a, 1993b) summaries of the psychoneuroimmunology literature conclude that psychological distress and stressors (e.g., negative life events, both acute and chronic) are reliably associated with changesÐdownregulationÐin immunity. Thus, addressing the mental health needs of those with cancer will have important quality of life benefits and the possibility is raised of positive biologic (or health) consequences as well. Figure 1 provides a conceptual model of the psychological and behavioral factors and biologic mechanisms by which disease or health outcomes might be influenced. The majority of the paths move in one causal direction. We have discussed the importance of conceptual models in guiding future intervention research and in testing for any health benefits of psychological interventions (see Andersen et al., 1994). A growing literature on the use of psychological interventions to improve the cancer patient's quality of life also exists (Andersen, 1992). The effectiveness of these interventions is robust, as they have reduced distress and enhanced the quality of life of many cancer patients differing on disease stage as well as disease site. Despite the challenges of studying these patients, well-controlled investigations have been conducted. Improvements in emotional distress are found at the end of the interventions with continued gains at follow-up. In addition, change in other areasÐself-esteem/ concept, death perceptions, life satisfaction, and/or locus of controlÐhave been found. Important for quality of life, psychological interventions could also lower or stabilize pain reports. The positive outcomes for terminal patients are notable considering their worsening pain and/or increasing debilitation. While there appear to be unique intervention components for different phases of the disease,

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Cancer diagnosis and treatment

Compliance

Disease: Local

CNS innervation Stress

Reduced QoL

Neuroendocrine

Health behaviours

Immunity

Disease course

Disease: metastatic

Figure 1 Theoretical model. A biobehavioral model of the psychological, behavioral, and biologic pathways from cancer stressors to disease course. CNS = central nervous system. From Andersen et al. (1994).

there are some commonalities. Therapy components have included: an emotionally supportive context to address fears and anxieties about the disease, information about the disease and treatment, behavioral coping strategies, cognitive coping strategies, and relaxation training to lower ªarousalº and/or enhance one's sense of control. The descriptive data also highlight the need for focused interventions for sexual functioning, particularly those treated for gynecologic, breast, and prostate cancer, and the intervention studies attest to the effectiveness of these specific components. These various components appear more important to outcome than procedural variations. For example, therapy format, such as individual or group, appears to have little impact. Also, there were null findings for (group) interventions that included no structured content, suggesting that group support alone is insufficient to produce any measurable benefit (see Helgeson & Cohen, 1996, for a review). How do psychological interventions achieve these effects? In large measure, the psychologic mechanisms may not be different from those operative in interventions designed for coping with other stressors. That is, confronting a traumatic stressor with positive cognitive states, active behavioral strategies and, eventually, lowered emotional distress may enhance one's sense of self-efficacy, feelings of control, and provide realistic stress appraisals of the disease or treatment process. Similarly for sexual interventions, information provides realistic expectations for sexuality and specific strategies to manage sexual activity when it is difficult or impossible. That the interventions produce

more than situational improvement and may alter an individual's longer-term adjustment processes is suggested by data indicating that adjustment gains continue (and often increase) during the first post-treatment year. Immediate and longer-term psychologic changes may, in turn, increase the likelihood of changes in behavioral mechanisms, such as increasing the likelihood of adaptive health behaviors (complying with medical therapy; improving diet, exercise, etc.), to improving mental health directly, ªadjustmentº and, possibly, medical outcomes (e.g., disease-free interval). These data indicate that, increasingly, issues of quality of life are being raised, and positive results have been achieved by the behavioral scieces. But as with most issues, further commitment and action are needed. 8.09.6 REFERENCES Ahles, T. A., Ruckdeschel, J. C., & Blanchard, E. B. (1984). Cancer related pain. I. Prevalence in an outpatient setting as a function of stage of disease and type of cancer. Journal of Psychosomatic Research, 28, 115±119. Alby, N. (1991). Leukaemia: Bone marrow transplantation. In M. Watson (Ed.), Cancer patient care: Psychosocial treatment methods (pp. 281±297). Cambridge, UK: BPS Books. Altmaier, E. M., Gingrich, R. D., & Fyfe, M. A. (1991). Two-year adjustment of bone marrow transplant survivors. Bone Marrow Transplantation, 7, 311±316. American Cancer Society (1994). Cancer facts and figuresÐ1994. Atlanta, CA: Author. American Psychiatric Association (1994). Diagnostic and statistical manual of mental disorders (4th ed.) Washington, DC: Author. Andersen, B. L. (1992). Psychological interventions for cancer patients to enhance the quality of life. Journal of Consulting and Clinical Psychology, 60, 552±568.

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8.10 HIV and AIDS MICHAEL H. ANTONI and NEIL SCHNEIDERMAN University of Miami, Coral Gables, FL, USA 8.10.1 INTRODUCTION

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8.10.1.1 Pathogenesis of HIV Infection 8.10.1.2 Health Psychology and HIV Infection 8.10.1.2.1 Psychoneuroimmunology research and HIV infection 8.10.2 PREDICTING ADJUSTMENT TO HIV INFECTION 8.10.2.1 Psychological Challenges in HIV Infection 8.10.2.2 HIV-associated Psychosocial and Behavioral Sequelae 8.10.2.2.1 Distress and depression 8.10.2.2.2 Risk behavior and substance use 8.10.2.3 Psychosocial Factors Predictive of Depression and Risk Behaviors in HIV Infection 8.10.2.3.1 Uncontrollable stressors 8.10.2.3.2 Stressor appraisals 8.10.2.3.3 Coping with HIV-related symptoms 8.10.2.3.4 Social support 8.10.3 PREDICTING THE HEALTH COURSE OF HIV INFECTION 8.10.3.1 Biological Factors and Disease Progression 8.10.3.1.1 Constitutional factors 8.10.3.1.2 Other viral infections 8.10.3.2 Behavioral and Psychosocial Factors and Disease Progression 8.10.3.2.1 Behavioral factors 8.10.3.2.2 Depressive symptoms 8.10.3.2.3 Stressful life events 8.10.3.2.4 Stressor appraisals 8.10.3.2.5 Coping strategies 8.10.3.2.6 Social support 8.10.3.3 Psychosocial Factors in Long-term Survivors of AIDS 8.10.4 INTERVENTIONS, ADJUSTMENT, AND HEALTH COURSE IN HIV INFECTION 8.10.4.1 Health Psychosocial Interventions with HIV-infected People 8.10.4.2 Stress Management Intervention Effects at Different Critical Points in HIV Infection 8.10.4.2.1 The initial HIV seropositive diagnosis 8.10.4.2.2 The asymptomatic stage of HIV infection 8.10.4.2.3 The pre-AIDS symptomatic stage of HIV infection 8.10.4.2.4 Full-blown AIDS 8.10.4.3 Common Features of Psychosocial Interventions in HIV Infection 8.10.4.3.1 Relaxation aspects 8.10.4.3.2 Delivery format 8.10.4.3.3 Treatment orientation 8.10.4.4 Summary of Completed Studies of Psychosocial Interventions with HIV-infected Persons

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8.10.5 CONCLUSION

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8.10.6 REFERENCES

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8.10.1 INTRODUCTION 8.10.1.1 Pathogenesis of HIV Infection The human immunodeficiency virus (HIV) is a retrovirus of the human T-cell leukemia/ lymphoma line and is the causative agent of the acquired immunodeficiency syndrome (AIDS). (Although AIDS is believed to be caused by the human immunodeficiency virus-type 1 (HIV-1), we have for simplicity used the term HIV throughout this chapter.) A unique feature of HIV infection is that it can have a long asymptomatic phase lasting up to 10±15 years (Munoz et al., 1988) followed by the appearance of constitutional signs and symptoms of disease progression. In most people full-blown AIDS develops next (Kaplan, Wofsy, & Volberding, 1987), and even with aggressive and timely treatment, death often occurs a few years later (Lemp, Payne, Neal, Temelson, & Rutherford, 1990). A diagnosis of AIDS is made when a person shows laboratory-based signs of severe decline in the number of T-helper±inducer (CD4) cells (5 200 cell mm73), or clinical signs consistent with the emergence of opportunistic infections and neoplasias. Some of these include: candidiasis of the esophagus, trachea, bronchi, or lungs; cryptoccosis; cryptosporidiosis with diarrhea persisting longer than one month; cytomegalovirus disease of an organ other than the liver, spleen, or lymph nodes; herpes simplex virus infection causing a mucocutaneous ulcer for longer than one month; Kaposi's sarcoma; primary lymphoma of the brain; pneumocystis carinii pneumonia; progressive multifocal leukoencephelopathy; toxoplasmosis of the brain; and a variety of other opportunistic infections and neoplasias. Since some infected people can remain free of clinical symptoms for a prolonged period of time and given that appropriate patient management can delay the onset of AIDS, it may be useful to view HIV as a chronic disease. Many staging systems for HIV infection have been developed over the past decade (Walter Reed system, World Health Organization, and Centers for Disease Control), though the most widely accepted system used today is that developed by the Centers for Disease Control (CDC) in 1993. People with primary HIV infection often develop an acute mononucleosislike syndrome about a month after initial infection (Tindall & Cooper, 1991). This period is associated with a high level of viral load or free virus released throughout the circulation (i.e., viremia) (Daar, Moudgil, Meyer, & Ho, 1991) which usually occurs 4±12 weeks after the onset of acute infection (Clerici, Berzofsky, Shearel, & Tacket, 1991). The virus becomes widely

disseminated during this early stage of infection, suggesting that the course of infection may be influenced by the ªseedingº of the virus throughout the lymph nodes and other immune system components (Tindall & Cooper, 1991). Even after this acute stage of the infection it appears that viral replication is not completely curtailed since it remains detectable in lymph nodes during the quiescent stages of the infection (Pantaleo, Poli, & Fauci, 1993). A period of clinical, but not microbiological, latency lasting for a number of years follows the initial sequence of primary infection, viral dissemination, development of HIV specific immunity, and curtailment of extensive viral replication. Importantly, during the clinically latent period the disease is still progressing. This is observable in an increasing viral load, the depletion of CD4 cells in peripheral blood, and in the increasing proportion of HIV infected lymphoid cells (Pantaleo et al., 1993). It is generally accepted that the decline in CD4 cells leaves the infected person susceptible to a number of opportunistic infections and cancers characteristic of AIDS, though there is evidence that malfunctions in other aspects of immune functioning may also be associated with disease progression. Some of the more commonly observed infections include pneumocystic carinii pneumonia (PCP) cryptococcal meningitis, toxoplasmosis, and candida esophagitis (Kaplan et al., 1987). Many other diseases manifest in HIV-infected persons are caused by ubiquitous herpes viruses (e.g., cytomegalovirus (CMV) associated retinitis is a major cause of blindness in HIV-infected persons). HIV infected persons are also vulnerable to relatively rare cancers including Kaposi's sarcoma and Burkitt's lymphoma and, in women, cervical carcinoma. Interestingly these cancers are believed to be promoted by fairly common viruses as well (e.g., human papillomavirus types are associated with cervical neoplasia and squamous cell cervical carcinoma (Maiman & Fruchter, 1996). In contrast, it is rare that these viruses are successful in eluding the immune system for long enough to establish a clinical neoplastic process in healthy people, unless these people are undergoing pharmacologic treatments that suppress the immune system (Antoni, Esterling, Lutgendorf, Fletcher, & Schneiderman, 1995). HIV-infected persons are then extremely vulnerable to a wide range of pathogens normally controlled by the immune system and, with time, these individuals may contract a number of life-threatening diseases over the course of the infection. Because a person's awareness of their diagnosis and, more importantly, their symptom status may play an important role in determining their

Introduction perceived psychosocial and physical burdens as well as their chosen coping strategies, this chapter shall later refer to different phenomenological stages of HIV infection tied to critical events as follows: the initial HIV seropositive diagnosis; the (post diagnosis) asymptomatic stage; the pre-AIDS symptomatic stage (formerly referred to as AIDS related Complex (ARC); and AIDS (often referred to as fullblown or frank AIDS). Because there is no cure for AIDS, prevention is the major tool for limiting the spread of the disease. Primary prevention efforts use many behavioral change techniques, aimed at increasing availability and promoting use of condoms, and substance abuse management and treatment (Schneiderman, Antoni, Ironson, LaPierriere, & Fletcher, 1992). Many of these techniques are those that are commonly employed by health psychologists working in the area of risk management. Secondary prevention programs have also been undertaken to slow HIV spectrum disease progression. Because only a relatively small proportion of the one million people in the United States infected with HIV have AIDS (CDC, 1995) and because of the relatively prolonged period of time between the onset of infection and the development of AIDS (Munoz et al., 1989), there is a clear need to develop treatments to manage HIV spectrum disease and slow down disease progression. Much of this chapter will focus on such secondary prevention activities. Many pharmacologic agents have been developed to manage symptoms and to slow HIV progression. These include such agents as pentamidine (to combat acute PCP and as a prophylaxic) and a large number of antiretrovirals, the most well-known being azidothymidine (AZT), to block the replication of HIV. To at least some extent advances in patient management have been successful in ameliorating symptoms and dealing with intercurrent illnesses (Longini, Clark, & Karon, 1993). In contrast, the benefits of antiviral therapies such as AZT, dideoxyinosine (ddI), and dideoxycytidine (ddC) appear to be only marginally effective and more controversial. In fact, in a letter to the Lancet, the Concorde Coordinating Committee (Aboulker & Swart, 1993) reported that although AZT modestly boosted the number of CD4 cells in the blood of asymptomatic patients, it did not delay progression to AIDS. Previous research had already shown that AZT only prolonged the life of HIV infected people for a few months (Fischl et al., 1987). The antiviral drugs also have undesirable physiological (e.g., bone marrow suppression, anemia, neutropenia; Richman, et al., 1987) and psychological (e.g., depression) side effects. We now

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know that using a single antiretroviral agent may lead to the development of AZT-resistant strains of HIV which are ultimately harder to treat; thus contemporary treatment approaches often focus on combination therapies (e.g., AZT and ddC). Newly emerging treatments such as triple combination therapy and protease inhibitors offer some hope that viral replication can be slowed more efficiently and with a lower likelihood of resistance or undue side effects (Lewin, 1996). However, we are now learning that the effectiveness of these newer regimens is critically dependent on the ability of patients to adhere to a rigid and demanding medication schedule. Failure to do so can substantially increase the risk of developing drug-resistant strains of the virus (Lewin, 1996; Schneiderman, Antoni, & Ironson, 1997).

8.10.1.2 Health Psychology and HIV Infection Behavioral scientists focusing on HIV infection are usually involved in either primary prevention efforts (e.g., examining factors underlying risk behaviors that lead to infection in order to inform community-wide interventions and health policies) or secondary prevention efforts (e.g., examining factors contributing to the mental and physical health course of HIV-infected persons in order to develop clinical interventions). This chapter will focus on the role of health psychology in such secondary prevention efforts, though findings relevant to primary prevention efforts (e.g., predictors of sexual behavior and substance use) will also be addressed. Managing HIV disease involves addressing psychosocial as well as biomedical issues (Antoni, Schneiderman et al., 1990; Schneiderman et al., 1994). The anticipation and the impact of HIV antibody test notification, for instance, is highly stressful (Ironson et al., 1990). Here, feelings of life-threat, doom, and anger are usually encountered as is the need to contemplate making major lifestyle changes (Christ & Wiener, 1985; Kaisch & AntonCulver, 1989; Viney, Henry, Walker, & Crooks, 1989). Because of the large and accelerating number of people who are infected with HIV, there is a clear need to develop behavioral interventions to help them cope with the psychosocial aspects of their situation. There is also some evidence that improving psychological adaptation to HIV may have implications for physical health among infected individuals. Two areas that have been the focus of much health psychology research in HIV infection and AIDS examine how psychosocial factors such as distress states and depressive

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symptoms as well as certain risk behaviors might contribute to (i) the ways in which people adjust to the having HIV infection; and (ii) the actual health course of the infection. Health psychological studies focusing on HIV and AIDS began in about 1987, coincident with the identification of HIV as the putative cause of many AIDS-related conditions that were emerging in clinics and hospitals around the world. At that time, behavioral scientists began studying the effects of psychosocial factors such as stressors and stress management interventions in people infected with HIV. The first major reason for this health psychological research concerned the issue of psychological adjustment. HIV infection presents multiple burdens at the psychological and physical levels, thereby creating a state of chronic stress that may overwhelm an individual's coping resources, thus greatly impairing their ability to emotionally adjust to what will likely be a long journey. Accordingly, it was reasoned that HIV infected individuals are among the groups who might benefit substantially from interventions that teach them to cope with the chronic demands that many people will never have to face. By learning how stress-reducing psychosocial interventions help such people adapt, adjust, and adhere to various lifestyle changes health psychologists gain insight into ways to facilitate the coping process in people facing this life-threatening condition as well as other chronic diseases (for reviews see Antoni, 1991; Ironson, Antoni, & Lutgendorf, 1995; Lutgendorf, Antoni, Schneiderman, Ironson et al. 1994; Schneiderman et al., 1994). A second major reason for examining the effects of psychosocial factors in this population follows from a conceptualization of HIV infection as a chronic disease whose clinical course may be affected by multiple behavioral and biological factors (Antoni, Schneiderman et al., 1990). As in the case of other chronic diseases, HIV infection is characterized by a disorder in one or more bodily systems wherein signs and symptoms of the disorder are clinically manifest across long periods of time as a function of the degree of disorder in the bodily system(s) affected (e.g., immune system impairment). People with HIV infection become ill or die from the complications of their chronic disease not the disease itself. Just as diabetics who are unable to maintain their blood glucose levels within a certain range may develop kidney disease or suffer heart attacks, HIV-infected people who are unable to retain adequate immune system functioning necessary for surveillance of pathogens go on to develop the life-threatening infections or cancers that characterize full-blown AIDS.

8.10.1.2.1 Psychoneuroimmunology research and HIV infection To the extent that HIV infection increases distress levels (Antoni, Schneiderman et al., 1990; Kaisch & Anton-Culver, 1989; Viney et al., 1989), which in turn have been shown to influence the immune system (Calabrese, Kling, & Gold, 1987; Ironson et al., 1990; Irwin, Daniels, Bloom et al., 1987; Kiecolt-Glaser et al., 1987), it is plausible that behavioral interventions that decrease distress may beneficially impact immune status and possibly health status in HIV-infected people. Because the degree to which the immune system becomes disordered seems to be the strongest predictor of the progression to HIV-related symptoms and death, much biomedical research has been focused upon ways to either slow the growth of the virus or slow the decline of the immune system by modulating the function of its cells. Psychoneuroimmunologic (PNI) research examines ways in which psychosocial influences such as stressful life events, distress states, and stress reducing techniques±±all of which may contribute to successful adjustment to HIV infection±±modulate immune system functioning and, ultimately, disease course. Applying these ideas from the point of view of a chronic disease model, to the extent that health psychology interventions modify psychosocial factors such as risk behaviors (unprotected sex, alcohol and drug abuse), emotional distress, maladaptive coping strategies, and social isolation, it might also modulate biological factors such as certain endocrine and immune system components. By diminishing the impact of psychosocial and behavioral factors on the immune system, the individual might retard the onset of disease complications by maintaining immunologic status (e.g., by preserving an adequate number of T-helper cells and/or maintaining the functioning of surviving immune cells) within a range necessary to defend against certain infections and cancers. There are many studies relating psychosocial and behavioral factors to the immune system in a wide collection of species using an even wider number of different experimental paradigms. This area is marked by significant agreement and disagreement about the ways in which a wide range of factors impact the immune system in healthy animal and human populations. Clinical researchers have attempted to translate many of these findings into the clinical arena in order to classify how psychological phenomena such as self-efficacy and sense of control, coping strategies, social support, and emotional states such as depressionÐall reasonable targets of psychological interventions±±contribute to

Introduction impairments in the immune systems of HIV infected individuals (e.g., Antoni, 1990; Solomon, Kemeny, & Temoshok, 1991). Given existing evidence that experimentally induced and naturally occurring stressors, perceived loss of control, social isolation, and depression are related to decrements in the numbers and functions of immune cells known to be altered by HIV infection, it can be reasoned that these psychosocial and behavioral factors might influence immunologic status and, possibly, disease course in HIV-infected individuals. Similarly, stress management interventions that target these factors might provide both psychological and physical benefits for infected people, especially for those in the early stages of this chronic disease before the virus has established a stranglehold on the immune system and other physiological regulatory processes. This line of reasoning can be operationalized in the context of HIV infection as follows: because CD4 cells are depleted in the advancing stages of HIV infection (Klimas et al., 1991), increases in qualitative aspects of HIV itself (e.g., mutation and replication rate) (Panteleo et al., 1993) and of lymphocytes (e.g., proliferation [growth and reproductive abilities], and cytotoxicity [recognition and killing abilities]) might be important in predicting those HIV seropositive individuals who do and do not develop opportunistic infections quickly. The ability of lymphocytes to multiply when challenged by antigens, often evaluated using tests of lymphocyte proliferative responses to plant mitogens such as phytohemaglutinin (PHA), concanavalin-A (conA), or pokeweed mitogen (PWM), may compensate to some degree for the smaller number of CD4 lymphocytes available as the disease progresses. Innate immune functions such as natural killer cell cytotoxicity (NKCC), a largely CD4-cell independent function, may also compensate in conferring protection against extant viral infections. For instance, herpes viruses such as Epstein Barr virus (EBV) or herpes simplex virus (HSV) are often poorly controlled in the context of HIV-induced defects in CD4 celldirected cytotoxic function (Biron, Byron & Sullivan, 1989; Habu, Akamatsu, Tamaoki & Okumura, 1984, Bancroft, Shellam, & Chalmer, 1981; Bukowski, Warner, Denner & Welsh, 1985). It is plausible that NKCC, which may be partially preserved in HIV infection, may help to survey and control these and other infections in the HIV-infected host. Conversely, stressinduced impairments in NKCC may permit herpes virus reactivation to go unchecked in HIV-infected individuals (Glaser & KiecoltGlaser, 1987) with subsequent effects of HIV

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replication and progression to AIDS (Carbonari, Fiorilli, Mezzoroma, Cherchi, & Aiuti, 1989; Rosenberg & Fauci, 1991). Because several herpes viruses are known to have immunosuppressive effects, in and of themselves, reactivation of these viruses could have implications for compounding HIV-induced immune system decrements and, possibly, disease progression (Griffiths & Grundy, 1987). Implicit in much PNI research is the notion that psychosocial factors relate to immune system changes by way of stress- or distressinduced changes in hormonal regulatory systems resulting in neuroendocrine elevations and imbalances (Maier, Watkins, & Fleshner, 1994). There are several neuroendocrine substances known to be altered as an function of an individual's appraisal (i.e., controllable vs. uncontrollable) of and coping response (i.e., active vs. passive) to stressful stimuli that have also been shown to impair certain components of the immune system. Some of these hormones, including those produced by the adrenal gland, are also known to be dysregulated in depressed individuals (Calabrese et al., 1987) and those reporting significant degrees of loneliness (Kiecolt-Glaser et al., 1984). Given that uncontrollable stressors, perceived loss of control (similar to low self-efficacy), and social losses such as divorce and bereavement have been related to alterations in some of these immunomodulatory hormones, it has been reasoned that some PNI relationships might be mediated, in part, by neurohormonal changes that are linked to an individual's appraisals of and coping responses to environmental burdens (for reviews see Antoni, Schneiderman et al., 1990 and Schneiderman et al., 1994). Although many different neurotransmitters, neurohormones, and other peptides have been studied as potentially important mediators of stressorinduced immunomodulation, two well-delineated ªstress response pathways,º the hypothalamic±pituitary±adrenal (HPA) axis and the sympathetic adrenomedullary (SAM) system, have received the most focus. The HPA axis is a complex system that is regulated by several integrated central nervous system and peripheral mechanisms, a regulation that may be disrupted at several levels in depressive illness and other affective distress states (Amsterdam, Maislin, Gold, & Winokur, 1989). Several of these HPA axis abnormalities gradually normalize with clinical improvement in depression (Greden et al., 1983; Amsterdam, Lucki, & Winokur, 1985). Because immunologic function is impaired by cortisol (Plaut, 1987) in humans, immunologic correlates (especially blastogenesis and NKCC) of depressed states have been studied extensively. Despite the

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conclusive evidence for immunologic effects and neuroendocrine changes in depression, the exact mechanisms involved are lacking (Stein, Miller, & Trestman, 1991). However, it has been shown that glucocorticoids enhance HIV replication (Markham, Salahuddin, Veren, Orndorf, & Gallo, 1986), are immunosuppressive (Cupps & Fauci, 1982), and accompany affective disorder (Gold et al., 1986) and stressful experiences (Borysenko & Borysenko, 1982; Jacobs et al., 1986). On the other hand, one study found that 24 hour urinary-free cortisol levels were not related to CD4 (or CD8) cell counts in HIV positive individuals (Gorman et al., 1991). However, this does not preclude the possibility that distress or depression-associated cortisol elevations impact immune function (e.g., NKCC) in HIV-infected individuals and that such functional changes might relate directly to HIV disease progression by way of impaired surveillance of latent viruses and other pathogens. A separate, but related neuroendocrine response system, the SAM system, is also activated during stressful circumstances (e.g., bereavement) and releases norepinephrine (NE) and epinephrine (E). Lymphocytes have betaadrenergic receptors (Plaut, 1987), and behavioral stressors (Manuck, 1991; Antoni, Rodriguez, Starr et al., 1991; Naliboff et al., 1991) increase CD8 counts and may induce cyclic AMP-mediated suppression of lymphocyte and natural killer (NK) function (Plaut, 1987). Activation of both the HPA axis and the SAM system, which may interact (Axelrod & Reisine, 1984), during exposure to chronic uncontrollable stressors, could adversely affect immunologic status (Cupps & Fauci, 1982; Maier et al., 1994; Roszman et al., 1985). These neuroendocrine patterns may also be displayed when an individual is exposed to uncontrollable chronic stressors, has inadequate social support, and uses denial/avoidance coping strategies (Antoni et al., 1990; Schneiderman et al., 1992). If depression and uncontrollable stressors are associated with impaired immunologic function mediated by neuroendocrine changes in HIV-infected individuals, and if interventionassociated decreases in depressed mood help to normalize neuroendocrine functioning in this population, then such interventions may concurrently act to attenuate neuroendocrineassociated immunosuppression. Putting all of this information together it can be hypothesized that stressful events or burdens that are interpreted by HIV-infected individuals as beyond their control might lead to social isolation, loneliness, anxiety, and depressed affect which might accompany alterations in some neurohormones (e.g., peripheral catecho-

lamine and cortisol elevations) due to sympathetic nervous system (SNS) activation and dysregulation of the HPA axis. These neuroendocrine changes may also be accompanied by changes in the immune system (redistribution of lymphocytes and decrements in functions concerning lymphocyte proliferation and NKCC) via interactions among neural and neuroendocrine signals at the immune cell membrane, intracellular cyclic nucleotide activation, and the production of cytokines such as interleukin (IL)-I and II, and g-interferon (g-IFN). Since these structural (cell counts) and functional (proliferation and cytotoxicity) aspects of the immune system are known to decline progressively across the course of HIV infection (Panteleo et al., 1993), it can be further hypothesized that superimposed stressor-induced changes in the functioning of the immune system may increase the rate at which infected people develop clinical symptoms such as opportunistic infections and neoplasias. This model prescribes at least two sets of related targets for intervention: psychosocial experiences and pathophysiological processes (see Figure 1) (for details see Schneiderman et al., 1994). 8.10.2 PREDICTING ADJUSTMENT TO HIV INFECTION 8.10.2.1 Psychological Challenges in HIV Infection A diagnosis of HIV seropositivity is the beginning of a long road of challenging life events and extraordinary personal changes that can overwhelm even the most psychologically well-adjusted individuals. One unique aspect of HIV infection is that it is a chronic physical disease embedded in an atmosphere of multiple chronic psychosocial and physical demands and burdens. From a health psychology perspective, it is plausible to hypothesize that disease-related and external ªlife stressorsº operate interactively and that success at managing one can influence the course of the other. To test these types of hypotheses behavioral researchers have for years been examining associations between the occurrence of stressful life events and alterations in people's resiliency or susceptibility to a wide variety of pathogenic processes underlying chronic diseases such as coronary heart disease, diabetes mellitus, rheumatoid arthritis, and several types of cancer. In addition to studying the impact of stressful events, health psychology researchers, since the mid-1970s, have also focused on the role of stress ªmoderatingº psychosocial variables (e.g., personality characteristics and social support) and

Predicting Adjustment to HIV Infection

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STRESS MANAGEMENT • • • •

Relaxation training Cognitive restructuring Coping skills training Social support

• Problem Solving • Assertion training • Anger management

(+) (+) (+) (+)

sense of control self-efficacy self-esteem adaptive-coping

(–) anxiety, depression,social isolation (+) quality of life

(+) parasympathetic activation (–) sympathetic activation

(–) peripheral catecholamines and/or cortisol

IMMUNE OPTIMIZATION

(+) CD4 cell function (+) Herpes virus surveillance

(+) NK cytotoxicity

DECREASED RATE OF HIV DISEASE PROGRESSION Figure 1 Theoretical model for effects of stress management on disease progression in human immunodefiency virus (HIV) infection (CD4, T-helper-inducer cells; NK, natural killer cells).

psychosocial interventions (e.g., stress management) that might reduce the negative health influences of stressors in medically vulnerable populations such as those recovering from myocardial infarction or taxing treatments for some types of cancer. Because more effective medical treatment for HIV infection is becoming available, there is now a fast-growing population of infected

individuals who are coping with the complex and multiple psychosocial demands of a chronic life-threatening illness (Antoni, 1991). Homosexual men comprise a large majority of HIVinfected individuals in the United States. Today, however, an increasingly large percentage of HIV-infected people are heterosexual male drug users and women (Centers for Disease Control, 1995). Many of the people who are infected face

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lifestyle-associated social stigmas in addition to the direct burdens of the HIV infection. They endure many of the psychosocial phenomena previously associated with impairments in the immune system. Some of these changes include overt signs of progressive physical deterioration (Redfield & Burke, 1988), chronic legal problems (Blendon & Donelan, 1988; Ginzburg & Gostin, 1986; Walkey, Taylor, & Green, 1990), astronomical health-care costs (Bloom & Carliner, 1988), and multiple losses due to AIDS deaths (Martin, 1988)Ðall of which can be characterized as severe, chronic, uncontrollable, and unpredictable stressors. At the initial onset of HIV-related signs and symptoms these individuals may be overwhelmed and socially isolated, and may employ maladaptive coping strategies such as denial/avoidance possibly resulting in an increased likelihood of depression and distress, and perhaps sexual risk behaviors and substance useÐall of these are potentially associated with changes in immunologic status (Antoni, 1991). Since HIV infection is a chronic, progressive disease with an uncertain clinical course lasting up to 10±15 years, affected individuals must develop lifestyle changes, effective coping strategies, and, often, new social networks to meet their daily needs for hope, strength, and growth. Adjusting to a long-term progressive lethal illness entails addressing issues such as changes in self-expectations and preparation for death. These are, indeed, some of the central tasks in this stage of HIV infection (Hoffman, 1991; Lutgendorf, Antoni, Schneiderman, & Fletcher, 1994). A very tangible issue is that employment status often changes dramatically at this point in the disease (Chuang, Devins, Hunsley, & Gill, 1989; Dilley, Ochitil, Pert, & Volberding, 1985). One study reported that the average monthly income of patients with AIDS or ARC had fallen by an average of $1000 per month since their diagnosis (Ellerman, 1989). Intermittent episodes of PCP are highly associated with diminished abilities to maintain employment (Wachtel et al., 1992). Change in employment status can pervade many areas of lifeÐloss of sources of social support, identity, income, and medical insuranceÐthat, in turn, can deplete one's resources for dealing with the demands of the illness (Lutgendorf, Antoni, Schneiderman, Ironson et al., 1994). Even for those who are successful at mustering the energy and resources for taking this journey, there still remain critical stressor eventsÐemergence of new symptoms, development of resistance to a successful drug regime, loss of health insurance benefits, deaths of friends, rejection from family members, etc.Ð which can trigger lapses into depression,

anxiety, and other distress reactions on the one hand and negative health behaviors on the other. Such lapses, if severe and unremitting, may contribute to a negative health course by way of increased mental health problems (Cleary et al., 1988; Jacobsen, Perry, & Hirsch, 1990) and acceleration of disease progression through PNI processes. If so, then psychosocial interventions may be capable of reducing the frequency and severity of these lapses with the accompanying effect of improving quality of life, reducing immunologic perturbations, and slowing the progression of the infection. Some of the mechanisms that could mediate the effects of stress management intervention on the course of HIV infection have been proposed (Antoni, Schneiderman et al., 1990). According to this model, cognitive behavioral stress management (CBSM) interventions such as relaxation training and cognitive restructuring may reduce anxiety, depression, and social isolation by way of their ability to increase a sense of control, self-efficacy, and self-esteem. These psychological changes may also be accompanied by decreases in peripheral catecholamines and cortisol via decreases in sympathetic activation and improved regulation of the HPA axis, respectively. These neuroendocrine changes may, in turn, be associated with a partial normalization of immune system functions such as lymphocyte proliferation and NKCC that facilitate efficient surveillance of pathogens. To the degree that such a normalization of stress-associated immune system decrements can be achieved by stress management techniques, then any contribution of stressor and stress responses processes to acceleration of disease and expression of clinical symptoms might be forestalled or minimized. It is arguable that such interventions can be targeted first to some of the more prevalent psychosocial and behavioral sequelae that HIVinfected people may face at various points in the disease process and some of the potentially changeable cognitive, affective, behavioral, and social factors that may aggravate or forestall these phenomena. Some of the most wellestablished sequelae include distress states, depressive symptoms, and negative health behaviors. 8.10.2.2 HIV-associated Psychosocial and Behavioral Sequelae 8.10.2.2.1 Distress and depression HIV-infected persons appear to be at somewhat increased risk from DSM-IV-Axis I affective and adjustment disorders, and many suffer significant subclinical distress reactions

Predicting Adjustment to HIV Infection following the initial news of an HIV seropositive diagnosis (Cleary et al., 1988; Jacobsen et al., 1990; Rabkin, Wagner, & Rabkin, 1996). Among diagnosable reactions, adjustment disorder with depressed mood may be the most common presenting complaint with major depressive disorder being far lower in prevalence (Perkins, Stern, Golden et al., 1994; Rabkin et al., 1996; Williams, Rabkin, Remien et al., 1991). One study found that the suicide rate among HIV-infected men may be up to 36 times that of age-matched uninfected men (Marzuk et al., 1988; Rundell, Paolucci, & Beatty, 1988), supporting the view that depressive symptoms are a common sequel to an HIV diagnosis and especially in those with a prior history of depression (Rabkin, Rabkin, Harrison, & Wagner, 1994). Pharmacologic treatments for depression such as imipramine and serotonin reuptake inhibitors have been shown to be safe and effective with HIV-infected samples (Rabkin et al., 1996). Newer work suggests that other biological approaches such as testosterone replacement therapy may also offer antidepressant effects (Rabkin et al., 1996). The coexistence of feelings of life-threat, doom, anger, and responsibility for making immediate lifestyle changes following a seropositive diagnosis (Christ & Wiener, 1985; Kaisch & Anton-Culver, 1989; Viney et al., 1989) suggests that psychosocial interventions that provide support, teach coping strategies, and offer the opportunity for mastery experiences may also be beneficial. Such interventions may also help these individuals to ventilate feelings such as anger (Miller, 1988) and manage anticipatory grief over the expectation of loss and death (Cohen, 1990; Pickrel, 1989). To the extent that HIV infection constitutes a chronic long-term disease, it is arguable that psychosocial intervention plays a key role in the treatment of HIV-infected persons. We have reasoned that all of these putative intervention effects are likely to be facilitated within a supportive group environment (Antoni, Schneiderman, & Ironson, in press). Some of the evidence supporting the possible psychological benefits of a cognitive-behavioral treatment orientation for HIV-infected individuals comes from the patterns of results emerging from natural history studies conducted since the mid-1980s. For instance, there is growing evidence that the ways in which individuals cognitively and behaviorally cope with HIV-related stressors can influence their ability to establish psychological equilibrium at least within a given stage of the infection. In a community sample of 208 HIV-positive and HIV-negative, successful, and well-educated gay men, the coexistence of high levels of faith

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in the future and low levels of syndromal disorder or depressive symptoms (Rabkin, Williams, Neugebauer, & Goetz, 1990) suggested that interventions capable of instilling hope and self-efficacy may facilitate psychological adjustment. There is evidence that these ªmoderatorº variables are not unique to gay men. Psychosocial characteristics of HIV-positive hemophiliacs related to elevated depression and distress included (i) a previous history of premorbid psychiatric disturbance/distress, (ii) experiencing recent life events involving loss, (iii) low social support from spouse, family, and friends, and (iv) a poor sense of mastery over life (Dew, Ragni, & Nimorwicz, 1990). Although based on a small heterosexual sample and a cross-sectional design, this work suggests the importance of uncontrollable loss-oriented life stressors, social isolation, and a lack of selfefficacy as deterrents of psychological adjustment to HIV infection. While the psychosocial sequelae of HIV infection are reasonably well-documented for male samples, far less is known about what women experience during the course of this disease. Such information is imperative given the fact that the incidence of AIDS has increased at a faster rate for women than for any other subgroup in the population of the United States (Carpenter, Mayer, Fisher, Desai, & Durand, 1989; CDC, 1995a). AIDS incidence data through June 1996 indicates nearly 20% of all new AIDS cases are women (CDC, 1995b). AIDS cases and infected and at-risk women are disproportionately represented among minority populations, especially Blacks (Antoni, Schneiderman et al., 1992; CDC, 1995b). Young, Black American, low socioeconomic status (SES) women have been characterized as a group experiencing the triple stigmas of race, class, and gender, prior to the addition of the burden of HIV seropositivity (Quinn, 1993) as well as multiple chronic daily stressors (Freudenberg, Lee, & Silver, 1989; Mays & Cochran, 1988). These stressors include drug and alcohol dependency, poor social networks, medical problems, financial problems, overburdened public clinics, lack of transportation, and inaccessibility of child care, all potentially fueling a general feeling of helplessness and powerlessness (Quinn, 1993). These stressors may be compounded even more by pregnancy (Antoni, Schneiderman et al., 1992). Relevant stressors here include the decision to abort or continue pregnancy to term, fears of becoming too ill to provide for offspring, and preparing older children for life as orphans. Seropositive mothers with unprotected partners are also likely to face rejection by the father of their children, resulting in

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emotional and financial isolation at a time when these women are most in need of support. Conversely, HIV seropositive women may react to an infected partner with self-isolation, both of which are likely to leave her and her offspring alone. If both mother and child are seropositive, the lack of emotional and financial support could make the situation even worse. Thus, the risk for significant emotional problems in HIVinfected mothers is obvious. It is critical that future work focus on factors contributing to depressive symptoms and mental adjustment in these growing populations of HIV-infected persons so that effective interventions can be developed. 8.10.2.2.2 Risk behavior and substance use In addition to the influence of mood disturbances, psychosocial adjustment to HIV may be intimately related to negative health behaviors. In fact, certain negative health behaviors may show a bidirectional relationship with depression and distress levels. Two such negative health behaviors that are salient in the context of HIV infection are sexual risk behaviors and substance use. It is known for instance, that depressed people are often more likely to engage in risky (unprotected) sexual behaviors (Gold & Skinner, 1992; Kelly et al., 1993) and substance abuse (Rabkin et al., 1996). Beyond the fact that these two sets of behaviors are associated with transmission of the virus, it is also well known that they occur at very high rates in persons who are having difficulty dealing with being HIV-infected. Despite reductions in sexual risk behaviors among urban gay men since 1987, a significant number continue to engage in unprotected anal intercourse (Martin, 1989), the sexual activity that carries the highest risk for HIV infection in gay men (Kingsley et al., 1987). Importantly, as many as 15% of those gay men who modified their sexual behaviors in the early years of the AIDS crisis have relapsed to unsafe sexual activities (Coates, 1991). One important factor that may influence such risk-taking behavior is the use of alcohol and drugs during sex (Martin, 1990b). The prevalence of alcohol abuse in the gay community is significantly higher (30%) than for the general population (5±10%) (Fifield, 1975; Lohrenz, Connelly, Coyne, & Spare, 1978; Martin, 1990b). Importantly, alcohol and drug use is strongly asociated with sexual behaviors and may determine adherence to safer sex guidelines in gay men (Martin, 1990b) as well as other populations who are at risk from HIV infection (Lollis, Antoni, Johnson, Chitwood, & Griffin, 1995; Lollis, Johnson, Antoni, & Hinkle, 1996). Finally,

depressive symptoms may be more likely to occur in HIV-infected men and women who are substance abusers, especially those who are injection drug users (IDUs) (Rabkin et al., 1996). Thus, chronic depressive symptoms, substance abuse, and unprotected sexual behaviors may be highly interrelated and selfperpetuating. Psychological factors related to the adoption and maintenance of reduced sexual risk behaviors include self-efficacy for safe sex, having alternative coping strategies for dealing with high-risk sexual impulses, and possessing skills for negotiating with interpersonal contacts (Kelly & St. Lawrence, 1988; McCusick, Hortsman, & Coates, 1985), while similar constructs such as condom efficacy and perceived vulnerability have been shown to predict sexual risk behaviors in injection drug users (Lollis et al., 1995). Denial of virulence and denial of personal responsibility, and frequent drug and alcohol use preceding sex (which are likely to facilitate one another) are also associated with continued high-risk behavior (Martin, 1990b). Specifically, Martin (1990b) found consistent associations between drug use (marijuana, inhaled nitrates, cocaine, hallucinogens, barbituates, and amphetamine) and unprotected insertive and receptive anal intercourse among 604 urban, middle-class gay men in the year prior to their development of AIDS. Cessation of drug use with sex predicted subsequent lower rates of unprotected anal intercourse (Martin, 1990). Thus, one way to intervene to reduce high-risk sexual behaviors may be to modulate drug and alcohol use perhaps by improving the ways individuals manage HIV-related stressors. Among 624 gay men, two categories of life stressorsÐdeaths of loved ones due to AIDS and fear of illness and one's own death due to HIV infectionÐwere associated with high-risk sexual behaviors and drug and alcohol use as well as psychological distress (Martin, 1989). Perceived self-efficacy and social support have also been shown to be critical for maintaining adherence to safer sex guidelines (Stall, Coates, & Hoff, 1988). Thus, among HIV-infected individuals, in addition to being associated with depressive symptoms, low self-efficacy, social support losses, and denial coping strategies may relate to the onset and maintenance of substance use and sexual risk behaviors and these may all be interrelated. The role of ethnic, racial, cultural, and religious factors in influencing sexual behavior patterns is also an important consideration (Mays & Cochran, 1988); hence sociocultural influences on risk behavior reduction need to be understood. For poor ethnic minority women who are at risk of HIV infection or are already

Predicting Adjustment to HIV Infection infected, the risk of AIDS is only one risk in a long list of multiple risks that are prevalent in daily existence. The key to behavior change is where in this list the women place the relatively longer-term consequences of AIDS-related risk behavior in relation to the short-term consequences of the risks of daily life (e.g., safety, food, shelter, human contact). From this vantage point, behavior change specialists need to be aware of more immediate survival needs which, if met, can provide the opportunity for professionals to educate and intervene effectively. Within this deeper understanding of the sociocultural milieu is the knowledge that the pervasive powerlessness experienced by disadvantaged women at risk may lead them to disengage from attempts at coping when informed about risk behaviors.

8.10.2.3 Psychosocial Factors Predictive of Depression and Risk Behaviors in HIV Infection There is good evidence suggesting that the risk of depressive symptoms in HIV-infected persons is strongly tied to a prior history of depression (Rabkin et al., 1994). Other risk factors include a family history of depression, alcohol abuse, other substance abuse, and social isolation (Rabkin et al., 1996). There are also several psychosocial events that may follow the onset of initial HIV diagnosis and related symptoms (Antoni, Baggett et al., 1991; Schneiderman et al., 1992) and these may predict an increased likelihood of depression and distress, sexual risk behaviors, and substance use. These include: chronic, uncontrollable, and unpredictable stressors such as treatment nonresponsiveness and side effects, disease recurrence, stigmatizing behaviors, and medical costs (Blendon & Donelan, 1988; Bloom & Carliner, 1988; Ginzburg & Gostin, 1986; Redfield & Burke, 1988; Walkey, Taylor, & Green, 1990). Inability to cope with these mounting stressors may bring about a loss of self-esteem and self-efficacy, feelings of helplessness and hopelessness, depression, and an increase in maladaptive, potentially self-destructive negative health behaviors. The combination of uncontrollable life stressors and feelings of helplessness may increase cognitive and emotional burdens (Noh, Chandarana, Field, & Posthuma, 1990) that may overwhelm premorbid coping strategies such as active problem-solving and positive reframing resulting in the use of denial/avoidance coping strategies or giving up entirely. Loss of familiar sources of social support due to deaths of close friends (Martin, 1988), the infected person's

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own desire for social insularity and the avoidance by acquaintances and significant others following disclosure of homosexual orientation (Beckett & Rutan, 1990; Gambe & Getzel, 1989) may create a chronic lack of resources available to deal with stressors, thus compounding these adjustment problems. We now review some of these phenomena in greater detail to demonstrate how they interact. 8.10.2.3.1 Uncontrollable stressors There are numerous psychosocial challenges following a diagnosis of HIV seropositivity. Among 240 gay and bisexual men, specific stressorsÐreceiving an HIV-positive diagnosis, an AIDS diagnosis, an AIDS-related complex (ARC) diagnosis (the prior designation for having overt HIV-related symptoms but not yet developing AIDS), and learning of the death or AIDS diagnosis of a loverÐwere rated as the most emotionally distressing events that these people deal with (Rosser, Simon, & Michael, 1988). It is well-established that stressful life events shown to relate to depression and physical health consequences are those which are perceived as being beyond the individual's control (Justice, 1985). These events may also relate to increases in negative health behaviors. A variety of stressful events have been associated with alcohol consumption (Foy, Sipprelle, Rueger et al., 1984; Newcomb & Harlow, 1986) and low personal control is believed to be a mediator of this relationship (Beckman, 1980; Pearlin & Radabaugh, 1976). Similar findings are evident in gay men and may be more prevalent than in other populations given the reinforcement of heavy drinking in gay bars, a primary social gathering place (Nardi, 1982). Prevalence may similarly be enhanced in homosexual men as well as in ethnic minority group members due to the likelihood that alcohol (and drugs) are used to cope with burdens associated with being gay or otherwise disenfranchised in the society (e.g., guilt, anxiety, alienation, powerlessness) (Lohrenz et al., 1978). According to the identity disruption model (Lohrenz et al., 1978), negative life events that disturb one's self-concept or identity have the greatest deleterious effects. Self-conceptions determine the way personal information is appraised and processed, and the nature of social interactions. Identity disruptions, according to this model, may impair functioning by causing individuals to devote excess time and energy to the stressor, and undermine their sense of control and ability to predict other aspects of their lives. For those diagnosed with HIV infection, each HIV-associated stressor experienced may erode their previous self-concept

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giving way, possibly, to self-blame for their seropositivity (Hoffman, 1991). 8.10.2.3.2 Stressor appraisals In addition to providing an overt sign of disease progression, physical changes such as skin lesions, muscle wasting, and fungal infections may compromise self-image in HIVinfected persons (Hoffman, 1991; Ostrow, Monjan et al., 1989). Infected individuals who see the onset of these changes as uncontrollable may attempt to cope by way of denial and increased substance use (Kaisen & AntonCulver, 1989). These maladaptive strategies may affect psychological adjustment, future risk behaviors, and physical health (Burns et al., 1991; Ironson et al., 1992; Penkower et al., 1991). It is well known that a person's appraisal of stressful events may determine the individual's coping responses and emotional state (e.g., depression) (Lazarus & Folkman, 1984). Appraisals that are particularly relevant to the demands of an HIV diagnosis include those concerning harm/loss (e.g., loss of relationships, physical abilities, independence [Beckett & Rutan, 1990; Ferrara, 1984], threat (e.g., threat/anticipation of future symptoms [Hoffman, 1991]), and challenge (e.g., opportunities for personal growth)Ðthree domains that have been studied extensively by Lazarus and Folkman. Thus, one important goal of psychosocial intervention is to help individuals enhance their sense of self-efficacy for dealing with the losses, threats, and challenges characterizing the physical and psychosocial sequelae of their HIV infection. Efforts to build self-efficacy may be most effective early in the course of the psychosocial intervention and can be enhanced by constructing a supportive group environment and teaching participants tangible strategies for managing daily hassles as well as major environmental stressors and their cognitive, behavioral, emotional, and interpersonal responses to these events. 8.10.2.3.3 Coping with HIV-related symptoms Individuals previously diagnosed with HIV infection, who have not yet developed AIDSdefining symptoms, report an overwhelming sense of uncertainty (Dew et al., 1990). This uncertainty may actually contribute to the higher incidence of adjustment disorders reported for those with symptomatic pre-AIDS conditions vs. those with full-blown AIDS (Dilley et al., 1985). Uncertainty about one's immediate future creates critical demands for coping, the success of which may depend upon an individual's appraisals, attributions of

blame, opportunities for social comparison, repertoire of adaptive coping strategies, and the sense of self-efficacy necessary for using these strategies. Coping strategies classified as active-behavioral (planning, seeking social support) or active-cognitive (finding meaning in an illness, reframing) have been related to more positive affect and higher self-esteem in various chronic disease populations (Billings & Moos, 1981; Bloom, 1982; Fawzy et al., 1990; Felton, Revenson, & Hinrichsen, 1984). Conversely, denial and avoidance strategies are associated with greater depression and distress (Billings & Moos, 1981; Namir, Wolcott, Fawzy, & Alumbaugh, 1987). Individual differences in available coping strategies for dealing with stressors may be among the most significant predictors of depression and future adjustment to HIV seropositivity (Namir et al., 1987; Weimer, Nilsson-Schonnesson, & Clement, 1989) and may, possibly, play a role in future clinical disease progression (Ironson et al., 1992). One group prospectively related coping strategies and immunologic measures in HIV seropositive gay men over the one year period following notification of their antibody test results (Antoni et al., 1995a). Asymptomatic seropositive men's coping responses to antibody status notification were measured concurrently with phenotypic and functional immunologic markers, and these immunologic measures were taken again one year later. Seropositive men scoring above the median on postnotification disengagement coping strategies (denial, behavioral disengagement, mental disengagement) had significantly lower concurrently measured T-helper/suppressor (CD4/CD8) cell ratios, Thelper±inducer subset (CD4+CD45RA+) % values, and proliferative responses to PHA than men scoring below the median on these scales. Disengagement coping responses also predicted one-year follow-up immune status; greater disengagement predicted poorer lymphocyte responsivity to PHA. Together these preliminary findings suggested that strategies that distract seropositive individuals from the stress of infectivity are related to greater levels of depressed affect and distress, as well as more impairment on some immunologic measures, and these relationships appeared to persist over as long as a 12-month period. 8.10.2.3.4 Social support Social resources have been found to buffer the negative physical and psychological effects of major stressful events ranging from concentration camps to hurricanes (Lutgendorf et al., 1995; Sarason, Potter, Sarason, & Antoni,

Predicting Adjustment to HIV Infection 1985; Schneiderman et al., 1992). Buffering effects of social support have been attributed to increased opportunities for intimacy, integration through shared concerns, reassurance of worth, nurturance, reliable alliance, and guidanceÐall potentially facilitating task-oriented thinking and active coping while decreasing helplessness and depression (Sarason, 1979). On the other hand, socially isolated individuals may be more likely to maintain maladaptive stressor appraisals such as catastrophizing, selfblame, and helplessness, and may employ denial as a chief coping strategy. The many losses in interpersonal and institutional support resources (Hoffman, 1991) may be responsible for the sense of isolation reported by some HIVinfected individuals (Dilley et al., 1985). Issues regarding social support may be especially salient for HIV-infected women, many of whom are indigent minority group members who have been marginalized by their social groups leaving them with limited resources available to care for themselves or their children (Guinan, 1987; Nyamathi & Lewis, 1991). This threatens their roles as caregivers and mothers significantly (Buckingham & Rehm, 1987; Chung & Magraw, 1992). Trying to cope with being ill and the challenges of motherhood concurrently can be overwhelming. Having to disclose to children one's serostatus and medical condition are further challenges that these women face. Women with AIDS feel and experience stigma and shame by being presumed to be dangerous (Chung & Magraw, 1992). Community support efforts may appear to them to be primarily directed to gay men and they may respond to this with resentment and despair (Mackie, 1993). It is important to remember, however, that gay men may also be at increased risk of social isolation. Given the number of HIV-infected gay men experiencing multiple bereavements (Martin, 1988), coupled with their reported low average support network size (comprised mainly of friends) (Namir, Alumbaugh, Fawzy, & Wolcott, 1989), any loss in such social support may be especially devastating. Other, less stable, social resources such as employment circles (Chung et al., 1989; Dilley, et al., 1985) may also be lost as the HIV infection progresses, with job loss having negative effects on both financial status, self-esteem, and emotional functioning. In a recently published review, Zuckerman and Antoni (1995) suggest that certain social support criteria are related to optimal psychological adjustment in HIV-positive individuals. These include: (i) a general sense of feeling supported (Namir et al., 1989);

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(ii) satisfaction with received support (Hays, Turner, & Coates, 1992); (iii) perceived helpfulness of peers (Hays, Chauncey, & Tobey, 1990); (iv) total perceived availability of support as well as individual dimensions of support (O'Brien, Wortman, Kessler, & Joseph, 1990; Turner, Hays, & Coates, 1993; Zich & Temoshok, 1987); (v) absence of social conflict (Lesserman et al. 1995; O'Brien et al., 1993); (vi) greater involvement in AIDS-related community activities (Lesserman, Perkins, & Evans, 1992); and (vii) a greater number of close friends (Hays et al., 1990). Each of these aspects of support has been associated with lower levels of depression and, in some studies, with lower levels of hopelessness, anxiety, mood disturbance, risk behaviors, and greater overall sense of psychological well-being in a variety of populations (Christ & Wiener, 1985; Cutrona & Russell, 1987; Donlou, Wolcott, Gottlieb, & Landsverk, 1985; Friedman et al., 1991; Namir et al., 1989; Ostrow, Joseph et al., 1989; Zich & Temoshok, 1987). One study found that greater support satisfaction and greater involvement in AIDSrelated community activities were associated with a greater use of coping strategies such as cognitive reframing and fighting spirit which were in turn associated with less dysphoria and greater self-esteem (Lesserman et al., 1992). Prior studies of HIV-positive men suggest that social support may determine the choice between active behavioral coping and less adaptive strategies. For instance, greater social support availability and satisfaction associated with active coping and lower support availability is associated with a greater use of denial/ avoidance strategies (Martin, 1989). Also, lack of family support and other important support sources have been proposed as contribitors to alcohol abuse (Nardi, 1982), though little is known about the ways in which ethnicity and socioeconomic status may moderate this relationship. In a large cohort of gay men in San Francisco, men who reported always using condoms had higher levels of social support from informal sources of help (friends, sex partners) (Catania et al., 1991). Thus social support may be viewed as a coping resource to the extent that it channels, facilitates, or perpetuates the use of coping strategies with stressbuffering properties. Unfortunately, social support may actually decrease as the number of symptoms increases in HIV-infected individuals (Hays et. al., 1990). This may be due to caregivers and other support network members pulling back from persons

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with AIDS (PWA) to prevent burnout and emotional exhaustion (Turner et. al., 1993). Since family members may attempt to distance themselves emotionally from this traumatic situation, the importance of peers and fellow PWA's in the social support networks of HIVinfected individuals may increase. These people can be important sources of informational support and often provide the greatest opportunity for support (Hays et al., 1990). As such, peers often fill in the ªsupport gapsº left behind by family and professional caregivers (Zuckerman & Antoni, 1995). It is important to realize that some forms of social interaction may actually be associated with increased levels of psychological distress in HIV-infected persons. Among asymptomatic HIV-infected gay men, increases in social conflict, and dissatisfaction with social support in general predicted greater increases in distress and depression over a one-year period (Lesserman et al., 1995). These social conflicts can include rejection messages from family members, breaking up or declining quality of romantic relationships, and trouble with employers, among others. Another study revealed that the type of support deemed most useful depended largely on the situation confronting the individual and the context of the support provision: emotional support was generally seen as being helpful from all providers in almost any situation, while informational or problem-solving support was viewed as helpful only from medical experts and other PWA's (Zich & Temoshok, 1987). The relative effectiveness of problem-focused vs. emotionalfocused support may also depend on factors such as disease stage (asymptomatic vs. AIDS) and stressor qualities such as controllability. Folkman and colleagues have suggested that problem-focused coping strategies may be most useful when directed toward controllable aspects of stressors, while emotion-focused strategies may be most effective when targeted toward uncontrollable aspects of stressors (Folkman et al., 1991). Extending the coping theory of Folkman and her colleagues to the context of matching social support resources (e.g., emotional vs. informational) to situational demands (e.g., uncontrollable vs. controllable) has been proposed as a reasonable strategy for providing the most useful support to individuals who are dealing with the different burdens of HIV infection (Zuckerman & Antoni, 1995). In sum, inadequate social support or a sense of social isolation may exaggerate the deleterious effects of stressful events on depression and negative health behaviors in HIV-infected persons (Cutrona & Russell, 1987). A seropo-

sitive diagnosis may reduce both the availability and utilization of social support (Christ & Wiener, 1975; Donlou et al., 1985) which may increase the risk of depression, hopelessness, and less adaptive strategies such as substance use (Friedman et al., 1991; Nardi, 1982; Ostrow, Joseph et al., 1989). Similar phenomena may occur in those diagnosed with HIV symptoms or full-blown AIDS for the first time (Namir et al., 1989; Zich & Temoshok, 1987). Thus social support may be related to depression, substance use, and sexual risk behaviors at many stages HIV infection. Its influence may also vary as a function of ethnicity, among other factors such as SES and educational level. While available and adequate social supports might enhance HIV-infected people's ability to manage their infection and related stressors by functioning as a key coping resource, negative conflictual social interactions may actually act as a deterrent to successful adjustment. 8.10.3 PREDICTING THE HEALTH COURSE OF HIV INFECTION With the emergence of data in the 1990s from long-term cohort studies, it is now wellestablished that some patients who are HIV positive develop symptoms rapidly while others remain free of AIDS symptoms over a decade. From a secondary prevention standpoint this means that it is important to isolate factors that account for the wide variability in the transit time for the clinical manifestations of HIV infection. Since 1990, new terms have been developed to reflect those who somehow outlive or outpace their prognosis following HIV infection. One grouping consists of nonprogressors with HIVÐpersons who are HIVpositive yet maintain near normal levels of CD4 numbers. Another grouping consists of those who are asymptomatic low CD4Ðpeople with very low CD4 counts (5 50 cells mm73) who remain asymptomatic for extended periods of time. Finally, there are those termed long-term survivors of symptomatic AIDS. While the sources of individual variability in HIV progression remain largely unknown, a growing body of literature suggests that the key may lie in some combination of biological and psychological factors (Ironson et al., 1995). 8.10.3.1 Biological Factors and Disease Progression 8.10.3.1.1 Constitutional factors Some biological factors influencing length of survival (Friedland et al., 1991; Hardy et al., 1991) include age (e.g., younger persons live

Predicting the Health Course of HIV Infection more years once infected [Jacobson et al., 1991; Lemp et al., 1990]), gender (e.g., men live longer following diagnosis with AIDS [Brown, 1989]), ethnicity, and initial AIDS-related disease manifestation (having Kaposi's sarcoma vs. PCP as the presenting symptomatic criterion for AIDS (Friedland et al., 1991). Risk group membership (Detels et al., 1988; Shine et al., 1987) and presence of, or prior history of, other concomitant sexually transmitted diseases (STDs) also appear important. Disease progression markers, such as CD4 cell counts, may also be predictive of disease progression. For instance, prior rate of CD4 decline and body mass index predict the amount of time until the infected people's level of CD4 cells drops below 200 cells mm73, the point at which symptomatic AIDS often occurs (Hoover et al., 1995). 8.10.3.1.2 Other viral infections Another set of biological factors influencing the course of HIV infection may be the degree to which other latent viruses (e.g., several types of herpes viruses) become reactivated (Rosenberg & Fauci, 1991). This point, taken in view of the psychosocial phenomena reviewed previously, is a critically important consideration for PNI research with HIV-infected populations given that (i) several psychosocial stressors have been related to immune system decrements and to signs of reactivation of one or more latent herpes viruses, and (ii) increases in sexual risk behaviors, which may ensue following some of these psychosocial phenomena, may place infected individuals at greater risk of contracting a new herpes virus infection. It has been reasoned that if stressors (Glaser & KiecoltGlaser, 1987) and behavioral interventions (Antoni, Esterling, Lutgendorf et al., 1995) affect the immune system's ability to control latent herpes viruses in a wide variety of populations, then stressors and interventions might also influence herpes virus-mediated progression of clinical disease in HIV-infected individuals. Importantly, herpes viruses persist in the host indefinitely once they are infected (Rinaldo, 1990). Varicella and HSV establish latent infections in neurons, whereas CMV, Human Herpes Virus Type-6 (HHV-6), and EBV persist in lymphocytes. When an individual is infected with one of the herpes viruses, seroconversion and latency results, with or without the presence of clinical disease. In healthy individuals, herpes viruses can reactivate spontaneously and often in the absence of clinical symptoms. Under sustained states of cellular immunodeficiency, such as in persons infected with HIV or in those undergoing immunosuppressive therapy for

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renal transplant, reactivation of one or more of the latent herpes viruses results in severe morbidity (Ernberg, 1986; McVoy & Adler, 1989; Rinaldo, 1990; Yao, Rickinson, Gaston, & Epstein, 1985). Moreover, herpes viruses are known to suppress a wide number of immunologic functions including cytokine production and lymphocyte blastogenesis to mitogens (Rinaldo, 1990). These phenomena suggest that HIV and herpes viruses may interact to perpetuate disruptions in the biological control of each respective infection, possibly contributing to the severity and chronicity of related clinical signs and symptoms. Because several herpes viruses prevalent in HIV-infected individuals are known to have independent immunosuppressive effects, reactivation of these viruses could have implications for progression to AIDS (Griffiths & Grundy, 1987). Subclinically these surveillance effects may be observed as rising antibody (IgG) titers to EBV, HHV-6, CMV, and HSV-2. One could speculate that clinically, the inability to survey these latent viruses may be manifest in EBVassociated Burkitt's lymphoma (Doll & List, 1982) and oral hairy leukoplakia (Eversole, Stone, & Beckman 1988; Greenspan et al., 1985); CMV-associated retinitis, encephalitis hepatitis, adrenalitis, and gastrointestinal pathologies (Blumberg, 1984; Henderly et al., 1987; Schooley, 1990; Tapper et al., 1984); and HSV-associated proctitis (Goodell et al., 1983), esophagitis (Levine, Woldenberg, Herlinger, & Laufer, 1987), and aseptic meningitis (Dahan, Haettich, LeParc, & Paolaggi, 1987). There is also evidence that reactivation of several of these herpes viruses may act to further stimulate HIV replication and progression to AIDS (Carbonari et al., 1989; Hammarskjold & Heimer, 1988; Lusso et al., 1989; Rosenberg & Fauci, 1991; Sumaya, Boswell, & Ench, 1986). CMV, one of the herpes viruses, is an important opportunistic pathogen in HIV infection (Rinaldo, 1990) and has been shown to enhance susceptibility to secondary opportunistic pathogens in immunosuppressed populations (Perssan et al., 1987). It is among the most immunosuppressive of the herpes viruses impairing blastogenic responses and g-interferon production by T-lymphocytes (Rinaldo, 1990) and it has also been shown to alter the growth and expression of HIV in culture, possibly accelerating progression to AIDS among infected persons (Biegalke & Geballe, 1991; Paya, Virelizier, & Michelson, 1991). Webster (1991) found that among HIV-infected individuals, the age-adjusted relative risk of developing AIDS was 2.5 times higher in those who were coinfected with CMV compared to those who were CMV seronegative.

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In sum, although some mechanisms are still being explored, the fact that herpes viruses may be related to HIV associated sequelae is intriguing. For example, because HHV-6 may reactivate during EBV infections, and because both EBV and HHV-6 may reactivate following immunosuppression by HIV, these three viruses may potentiate one another in the progression of clinical disease. Through direct immunosuppression or transactivation of HIV (by CMV or HSV), latent herpes viruses may be considered as potential cofactors in the development of AIDS. It is quite plausible that HIV-associated effects on the cells of the immune system may perpetuate a downward spiral in the functional ability of the immune system to survey and control latent viruses which, when left unchecked, may act to increase replication of the primary virus. The implication of these findings is that the host's ability to control such viruses may be a ªdownstreamº immune system marker that has more meaning as a predictor of HIV clinical disease and possibly the acceleration of viral load than does the CD4 cell count alone. We know that changes in HIV viral load, viral character (appearance of syncytium-inducing variants), and CD8-directed cytotoxity against HIV are the key predictors of individual differences in clinical disease progression (Pantaleo et al., 1993). These ªpredictorsº all speak to the importance of the host maintaining vigorous surveillance and control over HIV (through well-coordinated cytotoxic responses), and stabilized HIV replication (reflected in stable viral load and predominantly nonsyncytium-producing types). Given this understanding of the importance of qualitative aspects of the immune system (surveillance functions and signs of poorly surveyed viruses) in HIV disease progression, it is surprising that so little research has been published on the effects of biomedical and psychosocial interventions on qualitative immune measures including those reflecting surveillance of specific pathogens such as latent herpes viruses. 8.10.3.2 Behavioral and Psychosocial Factors and Disease Progression 8.10.3.2.1 Behavioral factors Behavioral factors such as the use of alcohol, tobacco, caffeine, recreational drugs (cocaine, nitrites) during sex, unprotected anal intercourse, and poor nutrition have also been suggested as possible cofactors of accelerated HIV disease progression (Chiappelli, BenEliyahu, Hanson & Wylie 1992; Griensven et al., 1990; Haverkos, Pinsky, Drotman, &

Bregman, 1985). It is noteworthy that several of these behaviors have been associated with immunomodulation in other populations. Cigarette smoking has been associated with significant decreases in helper cells and increases in suppressor/cytotoxic cells (Miller, Goldstein, & Murphy, 1982). Alcohol use has been related to depressed cell-mediated immunity (Watson, Eskelson, & Hartman, 1984), decreased lymphocyte number and diminished lymphocyte blastogenesis (Glassman, Bennet, & Randal, 1985), bone marrow myelosuppression (Tisman et al., 1971), and abnormal granulocyte chemotaxis (Atkinson et al., 1977). Other work suggests that alcohol abuse may amplify the suppressive effects of mental depression on immunologic impairments (Irwin, Caldwell et al., 1990). Recreational drug usage (e.g., heroine) has been associated with depressed cellular immune functioning in one study (Lazzarin, Mella, & Trombini, 1984), and with suppressed NK cell killing in another (Katz, Zaytoun, & Faici, 1982). Some of this work has focused specifically on HIV-infected samples. For instance, there is growing evidence that injection drug use (Seage et al., 1993; Weber, Ledergerber, Opravil, Siegenthaler & Luthy, 1990) and even cigarette smoking (Burns et al., 1991; Nieman, Fleming, Coker, Harris, & Mitchell, 1993; Royce & Winkelstein, 1990) may be associated with faster disease progression in HIV-infected people. The specific mechanisms by which these substances affect immune functioning are still in the process of being elucidated. It is noteworthy that some of these substances are associated with alterations in those physiological stress response systems noted previously. For instance, nicotine in cigarette smoke is associated with catecholamine discharge (Blaney, 1985) and ethanol consumption is also linked with catecholamine elevations due to blockage of re-uptake (Davidson, 1985). Nutritional factors and vitamin deficiencies may contribute to immunologic decrements in HIV infection. Protein-caloric malnutrition is associated with a wide range of immune impairments and is believed to explain the increased susceptibility to disease in undernourished populations of many Third World countries (Stites, Stobo, Fudenberg, & Wells, 1982). Some work also suggests that alterations in certain vitamin levels, for instance, vitamin B6 deficiencies, may be associated with immune system decrements in HIV-infected persons (Baum et al., 1991). A series of studies has presented evidence for immunomodulatory effects of sleep deprivation including decreases in lymphoproliferative responses and diminished granulocyte functioning (Palmblad et al., 1976; Palmblad, Petrini, Wasserman, & Akerstedt, 1979). One study,

Predicting the Health Course of HIV Infection done in the mid-1990s, noted that the decrements in immune function (NKCC) evident in victims of a hurricane over the months following the storm were mediated, in part, by sleep disruptions (Ironson et al., 1997). Other work has indicated that human IL-1 levels peak at the onset of slow wave sleep (Krueger & Karnovsky, 1987), suggesting that cellular immunity may be affected by qualitative, as well as quantitative, aspects of sleep and accompanying cytokine changes. Important for HIV-infected populations is the fact that sleep disruptions are one of the hallmarks of clinical depression. Numerous other biological factors may alter stress hormone levels and immune functioning such as aging, steroid use, sex hormone fluctuations, radiation treatment, as well as a multitude of medication regimens (Stites et al., 1982). Generally these variables are not likely to be responsive to health psychology interventions and thus will not be reviewed here. However, it is essential that these phenomena and others be measured and carefully controlled in any investigations of the influence of biological, behavioral, and psychosocial factors in HIV disease progression. Another variable that may deserve further attention is heightened sympathetic nervous system responsiveness to stressful situations. The stress hormonal elevations known to accompany this hyper-responsiveness (Rose, 1980) may have immunomodulatory effects. Interestingly, a growing literature suggests that pharmacologic agents that attenuate cardiovascular hyper-responsiveness (Bonelli, 1982; Dimsdale, Hartley, Ruskin, Greenblatt, & Labrie, 1984) may also alter immune functioning (Benschop et al., 1994; Hatfield, Petersen, & DiMicco, 1986; Weisdorf & Jacob, 1987). There is also some evidence that HIV-infected persons may display altered cardiovascular, endocrine, and immunologic reactivity to laboratory stressors (Kumar, Morgan, Szapocznik, & Eisdorfer 1991; Starr et al., 1996), indicating that these individuals may not respond to and recover from stressful challenges in the same way that healthy, uninfected people do. Although there is little known about the direct immunomodulatory effects of different forms of sexual behaviors, it is plausible that repeated exposure to novel strains of HIV and other sexually transmitted pathogens by way of unprotected intercourse (e.g., HSV and human papilloma viruses [HPVs], may contribute directly to the development of opportunistic infections (e.g., systemic HSV-2 infections) and neoplasias (e.g., HPV-associated cervical and anal intraepithelial neoplasias [Antoni & Goodkin, 1996]). In addition, exposure to these pathogens may indirectly contribute to an

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accelerated disease course by promoting HIV replication (for review see Antoni, Esterling, Lutgendorf et al., 1995). Therefore, efforts to modify risky sexual behaviors in already infected individuals can be seen as a secondary prevention strategy. Finally, PCP treatment prophylaxis, antiretroviral combination therapy, and the new breed of protease inhibitors may influence survival after AIDS onset (Saah et al., 1994). From a behavioral standpoint, an HIV-infected individual's decision and actions taken to pursue these treatments, at the earliest point following the emergence of symptoms or after dropping below landmark values for CD4 cell counts (e.g., 5 200 cell mm73), may play a large role in health maintenance. We have reasoned that if psychological factors affect the immune systems of HIVinfected individuals, then even small immune changes might have clinical relevance since this population's immunologic functioning is already significantly impaired by the virus (Antoni, Schneiderman et al., 1990; Schneiderman et al., 1994). Healthy uninfected people in the normal population possess many checks, balances, and compensatory mechanisms built into their immune systems. Since HIV-infected individuals are just at, or above, the number of T-lymphocyte subsets necessary for responding to encountered pathogens (e.g., 200±500 CD4 cells mm73), then small changes, of unknown magnitude, could quite possibly have an impact on the incidence of a wide range of infections due to normally harmless bacterias, viruses, fungi, and other opportunistic pathogens. In addition to behavioral factors, there is some evidence that several psychosocial variables may also contribute to individual differences in disease progression among asymptomatic HIV-infected individuals as well as contributing to differences in survival time in those who have already developed AIDS. Specifically, longitudinal studies have identified psychological factors such as depressive symptoms, stressful life events, maladaptive coping strategies, and social isolation that predict either survival time or CD4 changes over a period of years.

8.10.3.2.2 Depressive symptoms There is considerable evidence that depressive symptoms are correlated with immunosuppression in otherwise healthy individuals (Herbert & Cohen, 1993; Irwin, Caldwell et al., 1990; Irwin, Patterson et al., 1990), though available evidence suggests that depression and affective disturbances may be associated with physical

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disorders in a bidirectional fashion (Cohen & Rodriquez, 1995). Much of the work relating clinical depression and depressed affect to immunologic changes is plagued with inconsistencies which may be attributable, in part, to the use of small samples, variability in control/ comparison groups utilized, and variance in the depression diagnostic criteria employed (Stein et al., 1991). However, alterations in NKCC appear to be the most commonly observed immunologic correlate of depressed affect and depressive disorder employed (Stein et al., 1991). Among the more recent and wellcontrolled studies, Irwin, Caldwell et al. (1990) found significant NKCC decrements associated with depressive disorders. Longitudinal studies relating depressive symptoms to rates of immunologic decline and disease progression in HIV-infected persons have produced mixed results (Burack et al., 1993; Lyketsos et al., 1993; Patterson et al., 1996). Burack and colleagues found that greater depressive symptoms predicted a faster decline in CD4 counts but were not associated with time to AIDS or survival time in early-stage HIV-infected gay men followed over a six-year period (Burack et al., 1993). Lyketsos used similar criteria for documenting the presence of depressive symptoms and found no prospective relationship with either CD4 count slopes of decline or clinical disease progression over a similar period (Lyketsos et al., 1993). However, there was a tendency for the men in the Lyketsos study to be at a more advanced stage of CD4 cell loss at start of the study than those men in the Burack study. Another study following HIV-infected men over a five year period observed that depressive symptoms predicted shorter survival time after controlling for initial symptoms and CD4 cell number (Patterson et al., 1996). Other psychosocial factors may interact with depressive symptoms or distress levels in predicting changes in immune status and health. Because depressed affect, substance use, and risky sexual behaviors may all contribute to health outcomes in HIVinfected individuals, it seems reasonable that factors which moderate the occurrence of these sequelae may also have an influence on immunity and health. Some of these include the occurrence of overwhelming stressful life events, stressor appraisals, individual differences in coping skills, and differences in social support.

8.10.3.2.3 Stressful life events There is now ample literature (Herbert & Cohen, 1993) showing that stressors are

associated with decrements in immune function. Some of these stressors may be particularly prevalent among HIV-infected people attempting to cope with their illness and include: bereavement (Bartrop, Lazarus, Luckhurst, Kiloh, & Penny, 1977; Irwin, Daniels, Bloom et al., 1987; Kemeny et al., 1995; Linn, Linn, & Jensen, 1981); unemployment (Arnetz et al., 1984); the stress of being a caregiver for a loved one with a terminal disease (Kiecolt-Glaser, Glaser et al., 1987; Kiecolt-Glaser et al., 1991); divorce (break-up) (Kiecolt-Glaser, Fisher et al., 1987); and marital distress (KiecoltGlaser, Fisher et al., 1987; Kiecolt-Glaser et al., 1988). Chronic uncontrollable stress has been operationalized in one form as people dealing with catastrophic environmental changes. These stressors are also associated with immune alterationÐfor instance, both at the Three Mile Island nuclear plant disaster (McKinnon, Weisse, Reynolds, Bowles, & Baum, 1989) and in Miami after Hurricane Andrew (Ironson et al., 1997; Lutgendorf et al., 1995). Recently conducted investigations indicate that the most consistent immune decrements found in studies of stressors are functional measures associated with cellular immunity (Bartrop et al., 1977; Glaser, Rice, Speicher, Stout, & Kiecolt-Glaser, 1986; Glaser, KiecoltGlaser, Speicher, & Holliday, 1985; Glaser et al., 1987, 1990, 1991; Ironson et al., 1995; Irwin et al., 1990; Kemeny et al., 1995; Kiecolt-Glaser et al., 1985, 1987, 1988; Kiecolt-Glaser, Dura, Speicher, Trask, & Glaser, 1991; Levy, Herberman, Lippman, d'Angelo, 1987; Linn et al., 1981). These include, but are not limited to: (i) decrements in blastogenic responses to phytohemaglutinin (PHA) and pokeweed mitogen (PWM); (ii) decreased natural killer cell cytotoxicity (NKCC); (iii) increased antibody titers to Epstein-Barr Virus (EBV) and Herpes Simplex Viruses (HSV); (iv) poorer DNA repair; and (v) disturbance in cytokine regulation including less g-interferon and interleukin-2 (IL-2) production and IL-2 receptor gene expression. There are some PNI studies that have related stress responses to people's ability to respond to viral pathogens. Cohen and colleagues (Cohen, Tyrrell, & Smith, 1991) innoculated volunteers with one of five rhinoviruses (cold viruses) in a restricted environment and then followed them over a period of weeks. Subjects with the highest levels of perceived stress were significantly more likely to display increases in antibody titers to the specific rhinovirus and clinical colds than those with the lowest levels of psychological

Predicting the Health Course of HIV Infection stress. Stressors have also been related to alterations in primary immune responses to other viruses. Glaser et al. (1992) demonstrated that those medical students undergoing a stressor (exams) who were least stressed and anxious were also the most likely to seroconvert (produce a primary antibody response to) the Hepatitis B virus (HBV) after the first vaccine innoculation. In addition, participants with the highest levels of social support had a stronger immune response to the vaccine at the third innoculation. Thus, participants with low stress and anxiety, and high social support, appear to have been relatively well protected from infection by HBV. Together these studies suggest that stressors may influence mechanisms controlling both primary and secondary immune responses to viruses. This work is important for understanding the role of stressor±immune associations as they possibly relate to health outcomes in the context of HIV infection since an HIV-infected person's inability to control viral co-infections may act to aggravate the course of primary HIV infection (Antoni et al., 1995). Despite some of the evidence associating stressful life events with changes in specific indices of immune system functioning in healthy populations that has accrued since the mid1980s, there is less conclusive evidence linking stressors with immune and health changes in HIV-infected individuals. Briefly, two studies found that stressful life events were unrelated to CD4 counts or HIV-related symptoms (Kessler et al., 1991; Rabkin et al., 1991), while another found that elevated life events were predictive of decreases in CD4 counts (Goodkin, Fuchs, Feaster, Leeka, & Rishel, 1992). It should be noted that Goodkin and colleagues analyzed their data in line with a stressor±moderator model which simultaneously takes into account the direct effects of life events, plus their interaction with theoretically derived moderator variables such as coping and social support. Such more sophisticated statistical modeling may be necessary to delineate the often interactive nature of life event effects on the immune system and health. One stressful event associated with disease progression in HIV-infected persons is bereavement (Coates, Stall et al., 1989; Kemeny et al., 1994). Coates, Stall et al. (1989) found that both the number of losses and accompanying distress levels were significantly related to faster HIV progression during a two-year follow-up. Similarly, Kemeny et al. (1994) found that a bereaved group of HIV-infected men who had lost a partner had significantly higher serum neopterin levels and lower proliferative responses to PHA than a matched group of nonbereaved HIV-

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positive men. This suggests that life events that are commonly experienced by HIV-infected individuals may have significant effects on the functioning of their immune system, but that gross changes in CD4 counts and clinical symptoms may take longer to develop. While the Rabkin et al. (1991) and Kessler et al. (1991) studies found no association between stressful life events and outcome measures, they did not assess individual differences in subjectsº perceived control over stressful life events nor their coping responses for dealing with these stressors. While other life events have been associated with some immune measures in HIVinfected people (Evans, Pettito, & Leserman, 1992; Goodkin et al., 1992), stressful life events per se have not been shown to be predictive of a faster rate of disease progression (Kessler et al., 1991). Patterson and colleagues note that the interaction between mounting life events and distress levels may be a more reliable predictor of immunologic and health changes in HIVinfected persons (Patterson et al., 1996). Specifically, individuals who display the greatest distress levels during particularly stressful periods may show the poorest health outcomes. It is plausible that those individuals who are at greater risk of displaying such distress levels are those who utilize maladaptive stressor appraisals and coping strategies and who also have inadequate social resources.

8.10.3.2.4 Stressor appraisals Some aspects underlying the cognitive processing of stressors have been associated with measures of physiological activation and immune functioning in healthy people. Davidson and Baum (1986) found that both intrusive imagery and avoidant cognitions, as measured by the Impact of Event Scale (IES) (Horowitz, Wilner, & Alvarez, 1979), were positively associated with increased cortisol levels in residents living near Three Mile Island (TMI) following the nuclear reactor accident. Many of these individuals displayed elevated antibody titers to certain viruses, suggesting impairments in immunologic surveillance years after the reactor accident (McKinnon et al., 1989). Workman and LaVia (1987) found that intrusive cognitions (measured by the IES) related to an impending medical school examination were associated with poorer blastogenic responses to PHA among young healthy medical students. Ironson and colleagues found that the intrusive thoughts and post-traumatic stress symptoms experienced by many victims of Hurricane Andrew were associated with decrements in NKCC (Ironson et al., 1997).

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One study examined how the manner in which HIV-infected individuals processed the stress of seropositivity notification predicted their immunologic status during the early period of adjustment to this stressor. They found that changes in style of cognitive processing of this stressor were significantly correlated with changes in affective and immunological functioning over this 10 week period (Lutgendorf, Antoni, Ironson, Schneiderman et al., 1997). The IES and the Profile of Mood States (POMS) (McNair, Lorr, & Droppleman, 1981) were administered five weeks before (baseline) and five weeks after notification (week 10). A panel of immune assays were also conducted on blood samples collected at these time points. The IES instructions required subjects to report on intrusive thoughts that they had been experiencing in the past week regarding one of the most salient issues that infected people deal with on a daily basis: the threat of AIDS in their life. The IES also tapped the degree to which they had attempted to distract themselves or avoid thinking about this threat over this period. Participants were classified as those who had IES-Intrusion score increases vs. decreases and those who had IES-Avoidance score increases vs. decreases over the 10-week period. Results indicated that men with avoidance increases demonstrated greater anxiety, depression, and confusion at week 10 than those individuals who had avoidance decreases. Subjects with avoidance increases also displayed lower proliferative responses to PWM and lower NKCC at the end of the 10 weeks compared to those who decreased in avoidance scores over the study. These findings suggested that postnotification processing, colored by avoidance, was associated with poorer immune system functioning in the weeks after antibody testing among asymptomatic HIV-positive men. Another stressor appraisal variable that has received some attention in HIV research concerns a construct called fatalism. In a series of studies, Kemeny (reviewed in Kemeny, 1994) found fatalistic appraisals to be related to poorer health outcomes in HIV-infected gay men. In the first study, fatalistic gay men with a diagnosis of AIDS had a significantly shorter survival time than men scoring low on fatalism (Reed, Kemeny, Taylor, Visscher et al., 1994). Interestingly, men who were both fatalistic and bereaved within the past year had the shortest survival time (Reed, Kemeny, Taylor, Visscher et al., 1994), the steepest declines in CD4 number and proliferative response to PHA, and a more rapid increase in disease progression markers, including neopterin and beta-2 microglobulin (Kemeny et al., 1995). Less is known about the ways in which other cognitive

appraisal variables, such as optimism, different cognitive distortions, such as catastrophizing, and self-efficacy might relate to the course of HIV infection. 8.10.3.2.5 Coping strategies There is some evidence that the use of certain coping strategies for dealing with HIV infection may be associated with the rate of disease progression. Ironson et al. (1994) found that the use of denial and behavioral disengagement to cope with an HIV-positive diagnosis, was predictive of lower CD4 counts at 1 year follow-up (controlling for CD4 counts at entry to the study) and greater likelihood of progression to HIV-related symptoms and AIDS at 2year follow-up. A more fine-grained analysis exploring the immunologic changes that occurred in this sample prospectively related coping strategies and immunologic measures in the HIV seropositive gay men (and a seronegative comparison group of gay men) over the 3 week and 1-year period following notification of their antibody test results (Antoni et al., 1995). Seropositive men scoring above the median on postnotification disengagement coping strategies (denial, behavioral disengagement, mental disengagement) had significantly lower concurrently measured Thelper/suppressor (CD4/CD8) cell ratios, Tinducer subset (CD4+CD45RA+) percent values, and proliferative responses to PHA than subjects scoring below the median on these coping scales. Greater disengagement coping responses also predicted poorer lymphocyte responsivity to PHA at 1-year follow-up. Consistent with these findings, Goodkin et al. (1993) found that use of passive coping strategies (including denial and disengagement) was inversely related to long-term CD4 cell count in HIV-positive gay men. Solano et al. (1993) also found that denial/repression was associated prospectively with the emergence of symptoms in an HIV-positive sample. Mulder, Antoni, Duivenvoorden et al. (1995) found that active confrontational coping with HIV infection was predictive of decreased clinical progression over a 1-year period after taking into account baseline biomedical and behavioral variables. Finally, Blomkvist et al. (1994) followed HIVinfected hemophiliacs longitudinally and found that self-oriented active-optimistic coping behavior was related to prolonged survival after controlling for age and CD4 counts at study entry. Thus, there is some evidence that coping strategies may be reliably associated with certain immunologic and health measures in HIVinfected persons from a variety of risk groups.

Predicting the Health Course of HIV Infection It should be noted that while Reed, Kemeny, Taylor, Wang, & Visscher (1994) found that realistic acceptance was a significant predictor of decreased survival time in gay men diagnosed with AIDS, Ironson et al. (1994) observed that greater use of denial among asymptomatic HIVinfected gay men predicted a greater likelihood of developing symptoms or AIDS two years later. Thus it appears that being at the extreme end of either denial or realistic acceptance might be dysfunctional. Kemeny refers to the realistic acceptance factor as fatalism±acceptance, and notes, specifically, that ªfatalistic men survived a significantly shorter period of time when compared to their less fatalistic counterparts.º What is not clear is whether this variable represents acceptance as a healthy coping style or a predominantly negative view (pessimism) about the future. One study may shed some light on the notion of a balance between the extremes of denial and acceptance. Mulder et al. (in press) found that greater use of distraction (e.g., focusing on other things to take the mind off things) predicted a slower rate of decline in CD4 cells, less appearance of syncytium-inducing HIV variants, and less progression to immunologically defined AIDS (5 200 CD4 cells mm-3) over a 7-year period. Ironson et al. (1995) notes that together these findings suggest that strategies which are predictive of longevity may involve using some distraction coupled with staying away from the extremes of either denial or acceptance to the point where fatalism and rumination occurs. 8.10.3.2.6 Social support The health promoting effects of social support that have been most widely researched are usually in terms of its ability to buffer the effects of stressors (Cohen & Wills, 1985). A person's social support network may also influence their ability to manage, cope with, and recover from serious illness (Dimatteo & Hays, 1981; Taylor, Falke, Shoptaw, & Lichtman, 1986; Wortman & Conway, 1985). Since the 1970s there has been an enormous amount of research undertaken studying the ability of social networks to provide positive physical health benefits to people (Berkman & Syme, 1979; House, Landis & Umberson, 1988; Smith, Fernegel, Holcroft, Gerald, & Marien, 1994; Wortman & Dunkel-Schetter, 1987). Some findings have converged across investigations. For instance, it appears that being involved in a committed relationship (i.e., marriage) is associated with greater survival time among patients who have experienced a myocardial infarction (Wiklund et al., 1988; Williams et al., 1992) or a diagnosis of breast cancer (Neale, Tilley, &

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Vernon, 1986). However, these associations have not been replicated in other studies. Although a growing body of evidence supports the potential benefits of social ties in healthy people and several chronic disease populations (e.g., cancer patients), scientists are just beginning to examine the health correlates of social support in HIV-infected individuals. A variety of models have been developed to explain the ways in which social support might provide direct influences on psychological and physical well-being (Cohen & Wills, 1985). Some of these direct psychological benefits may stem from the possibilities that social support helps people define certain stressors as being less overwhelming, provides opportunities for people to openly express fears, frustrations, and other emotions, thereby decreasing ruminations and obsessive thinking about stressors. Social support also provides key information and informational support provided by knowledgeable others, which may help individuals to assume a more realistic attitude toward life goals. In addition, social support may help people feel connected, which may increase their sense of self-worth, belongingness, meaning, purpose, and well-being. Finally, social ties may reduce initial feelings of burden caused by the onset of a stressor (e.g., a medical diagnosis), allowing the person to employ active coping strategies to deal with the stressor. Obviously, all of these benefits of social support may be highly salient for HIV-infected persons (Zuckerman & Antoni, 1995). Some research suggests that the same mechanisms which provide these psychological benefits from social support also seem to buffer endocrine and immunologic changes associated with stress responses (e.g., Baron, Cutrona, Hicklin, Russell, & Lubaroff 1990; Cobb, 1974; Esterling, Kiecolt-Glaser, & Glaser, 1996; Levy et al., 1987). It has been hypothesized that HIVinfected people who maintain strong support networks may have less extreme and protracted biological responses to stressors because SAM and HPA-related stress hormone levels (e.g., peripheral catecholamines and cortisol) are better regulated (Antoni et al., 1990). Some work provides preliminary evidence that social support may relate to the rate of HIV disease progression as well. One study found that larger social network size and greater perceived informational social support predicted greater survival time in HIV-infected men, but only among those with AIDS symptoms (Patterson et al., 1996). Other prospective studies have found that greater social support availability (Theorell et al., 1995) and more frequent use of problem-focused support (Solomon, Temoshok, O'Leary, & Zich, 1987) were predictive of a

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slower decline in CD4 counts and longer survival, respectively. Another study may illuminate a factor underlying an HIV-infected person's decision to enlist social support. Cole, Kemeny, Taylor, Visscher, and Fahey (1996) followed 80 HIV seropositive (non-AIDS, normal levels of CD4 lymphocytes at entry) gay men for 9 years and found that those who concealed their sexual identity (being at least ªhalf in the closetº) had a faster decline in CD4 counts, shorter time to AIDS diagnosis, and shorter time to AIDS mortality than those who did not conceal their identity. Therefore, social support availability, decisions to utilize available support, and identity factors that influence decisions to make these connections may all contribute to the course of HIV disease. In sum, it could be hypothesized that a mounting number of losses and grieving experiences, which constitute prevalent life stressors for HIV-infected individuals, might contribute to a faster rate of disease progression. Further work suggests that maintaining fatalistic stressor appraisals could predict shorter survival time among men with AIDS. Moreover, attempting to avoid dealing with intrusive thoughts concerning future AIDS risk was associated with greater immune system decrements in asymptomatic HIV-positive men. The use of coping strategies such as extreme denial or acceptance were both associated with an accelerated disease course, while a certain degree of distraction (and perhaps low rumination about the disease) was associated with a slower rate of progression. Finally, people who remain socially isolated (and who may be the least comfortable in approaching their support network) appear to show the fastest progression of disease.

8.10.3.3 Psychosocial Factors in Long-term Survivors of AIDS Another research strategy for establishing salubrious psychosocial factors in HIV-infected individuals has been to document the characteristics of those who substantially ªoutliveº their prognosis after a diagnosis of AIDS. This research has been reviewed by Ironson and colleagues (Ironson et al., 1995). The CDC currently estimates median survival time after an AIDS diagnosis (by the 1987 symptomatic criteria) to be 18±20 months (CDC, personal communication 1994; Eickhoff, 1994), a number that increases slowly each year as better diagnostic and treatment options become available. The CDC defines ªlong-term survivorsº of AIDS as persons who survive twice the median expected time. Only a few studies of the

psychosocial characteristics of long-term survivors of AIDS (defined by clinical symptoms) have been done, and as Ironson and colleagues note, almost all of these have been crosssectional (Ironson et al., 1995). Ironson and her colleagues did, however, find a good deal of consensus on the existence of several different psychosocial characteristics of these individuals, noting four psychosocial adjustment strategies (Ironson et al., 1995): (i) healthy self-care behaviors; (ii) a sense of connectedness; (iii) a sense of meaning and purpose; and (iv) maintaining perspective. The first factor included three components±±medical care, a healthy lifestyle, and an awareness and ability to take action to meet personal needs. The second factor, maintaining connectedness, is closely related to the maintenance of social support. Having at least one confidant is part of this factor, as is being able to communicate openly about concerns and, for homosexuals, disclosing a gay lifestyle. This is interesting in light of the findings of Cole and colleagues (Cole et al., 1996). The third factor, maintaining a sense of meaning and purpose, ties into the notion of having something to live for and, thus, represents a cognitive appraisal factor. Ironson and colleagues note that having an optimistic attitude, (or conversely being low on negative expectancies) are all a part of this. Some longterm survivors actually report finding new meaning as a result of being HIV-positive (Schwartzberg, 1994). Still others find meaning in their relationship with a higher power, or spirituality/religion as they define it (Woods, Antoni, Ironson, & Kling, 1996). The final factor is maintaining perspective. A failure to maintain perspective is represented by depression, negative affect, and hopelessness. Ironson et al. (1995) note that accepting the reality of an AIDS diagnosis without seeing it as an imminent death sentence is part of this perspective, as is believing one can live with AIDS, realizing AIDS is episodic in nature, and remembering that AIDS usually includes periods of good health. Using selective distraction as a coping strategy and not allowing AIDS to become the sole focus of one's life captures the essence of this factor. Ironson et al. (1995) conclude that maintaining perspective is quite close to the idea that balance is very important. They cogently use the optimism/negative expectancies construct and the denial/acceptance construct to point out that the extreme at either end is probably the least functional. It remains to be determined which psychological and biological mechanisms might explain the ways in which these four long-term survivor strategies relate to health outcomes in HIV-infected people.

Interventions, Adjustment, and Health Course in HIV Infection 8.10.4 INTERVENTIONS, ADJUSTMENT, AND HEALTH COURSE IN HIV INFECTION 8.10.4.1 Health Psychosocial Interventions with HIV-infected People Since 1990 a small collection of studies have examined the effects of psychosocial interventions in HIV-infected populations. These studies used both psychological and immune measures as dependent variables, although none of them have completed long enough follow-up periods to clearly establish a health/disease progression effect. Most of these interventions employ cognitive behavioral techniques and operate in a group-based format. Comprehensive reviews of the psychological effects (Chesney & Folkman, 1994), and immune and health effects (Ironson et al., 1995) of psychosocial interventions in HIV populations are now available. The psychological, immune, and health effects of psychosocial interventions in HIVinfected individuals are summarized in Table 1. Studies included in this table are restricted to those that monitored intervention-related changes in both psychological and immunologic status. The first study to examine the effects of stress management intervention on psychological and immune status in HIV-infected individuals was conducted by Coates and colleagues at the University of California at San Francisco (Coates, McKusick, Stites, & Kuno, 1989). They randomized 64 HIV-positive gay men to either an 8-week stress management training program or a control group. The intervention consisted of systematic relaxation (with takehome tapes), health habit education (diet, rest, exercise, drug and alcohol use, smoking), and skills for managing stress. While the intervention appeared to change sexual behavior (significantly fewer sexual partners), there were no effects on enumerative or functional immune measures. The panel of immune assays included: CD4 cells CD4/CD8 ratio, NKCC, lymphocyte response to con A, candida antigen and CMV. Psychological changes in the intervention or control groups were not reported though the authors acknowledge that the protocol they used may have been ineffective in reducing stress. Another study which had some positive effects on psychosocial variables, but no effect on CD4 cell number, was done by Auerbach and colleagues (Auerbach, Oleson, & Soloman, 1992). Twenty-six symptomatic seropositive gay men were randomized to an 8 week behavioral medicine intervention, thermal biofeedback, guided imagery, and hypnosis, or a

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wait-list control group. The intervention reduced self-reported symptoms of HIV (fever, fatigue, pain, headache, nausea, and insomnia) and increased vigor and hardiness relative to controls, but did not change anxiety or depression. The authors speculate that if they had selected a more distressed HIV-infected sample they may have obtained changes in immune status variables and anxiety and depression measures. It is also possible that stress management interventions may work best if the groups start out with high stress or encounter a stressor during the course of the intervention. The most appropriate way to evaluate the effects of these types of interventions might be to test them in the context of either high distress states or measurable recent or ongoing stressful events (e.g., bereavement, diagnosis notification) and to include a comparison group of HIV-negative controls. 8.10.4.2 Stress Management Intervention Effects at Different Critical Points in HIV Infection Some of the most well-documented behavioral interventions applied to HIV-infected individuals have attempted to use procedures that reduce distress, promote self-efficacy, and encourage the use of active coping strategies. Operating from a chronic disease-PNI rationale we have hypothesized that if behavioral interventions can retard or normalize declines in immune status by bringing about these psychosocial and behavioral changes, then they may be able to forestall the onset of disease complications, such as opportunistic infections and neoplasias (see Figure 1). Our group developed a 10-week CBSM intervention for HIV infection that was based specifically upon the psychosocial sequelae that have been reviewed previously (Antoni, Baggett et al., 1991). For some HIVinfected people these sequelae include being faced with a wide variety of chronic, uncontrollable, and unpredictable stressors (e.g., such as changes in health, job status, health insurance, and medical costs) and a loss of social support resources which is triggered by their own withdrawal, the death of close friends, or the responses of friends and family. These are likely to persist across and grow in magnitude over the course of the infection (see Hoffman, 1991). This model reasoned that the combination of multiple uncontrollable burdens and declining coping resources may overwhelm HIV-infected personsº previously adequate direct coping strategies such as active coping, positive appraisals of burdens, problem-solving, and seeking social support, resulting in the adoption of more indirect strategies such as avoidance

Table 1 Team

Psychosocial intervention effects in HIV infection.

Intervention

Sample

Psychosocial effect

Immune effect

Health

Coates, McKusick et al. (1989)

8 week stress management vs. no tx. ctrl.

64 HIV-positive gay men

; number sex partners, distress ND

no D CD4 no D PHA

ND

Auerbach et al. (1992)

8 week biofeedback imagery, hypnosis vs. WLC

26 HIV-positive gay men

: POMS vigor : hardiness no D POMS anx. dep.

no D CD4

; HIV sx.

(i) Antoni, Baggett et al. (1991) (ii) Antoni, Ironson et al. (April, 1992) (iii) Esterling et al. (1992) (iv) Ironson et al. (1994) (v) Lutgendorf et al. (1997)

(i)±(iv) 10 week CBSM vs. no tx. ctrl. (v) 10 week CBSM vs. WLC

(i), (iii), & (iv) 47 HIVpositive asymptomatic men learning ab. status (ii) asymptomatic HIVpositive men (v) status known 4 6 mo 40 symptomatic HIVpositive non-AIDS

(i) buffered notification POMS distress D (i) maintained social support (ii) ; behavioral and mental disengagement ; denial (v) ; BDI depression ; POMS distress : social support, : acceptance

(i) buffered CD4 D, CD56 D, & PHA D (ii) pre±post notification : NKCC, : PHA (iii) ; EBV ab. ; HHV-6 ab. (v) ; HSV-2 ab. (ii), (iii), & (v) no D CD4

(i), (ii), (iii), & (v) ND (iv) 2 year disease progression correlates ; adherence : denial : distress

Mulder et al. (1994, 1995)

12 week CBSM, 12 week EE vs. WLC

39 HIV-positive asymptomatic gay men, ab. status known

; POMS distress ; BDI depression no D coping, social support emo. exp.

distress D, CD4 D over 2 year

ND

Ironson, Field et al., 1995

4 week daily massage therapy vs. WLC

29 (20 HIV-positive, 9 HIV-negative) gay men

; POMS anxiety : relaxation

: CD56, NKCC : cytotoxic cells no D CD4

ND

tx. = treatment; ab. = antibody; ctrl. = control; WLC = wait-list control; dep. = depression; anx. = anxiety; ND = not done; EE = existential experiential; sx. = symptoms; CD4 = T-helper cells; PHA = lymphocyte proliferation to PHA; CD56 = natural killer cells; EBV Ab. = Epstein-Barr Virus antibodies; HHV-6 Ab. = human herpes virus type 6 antibodies; HSV-2 Ab. = herpes simplex virus type 2 antibodies; BDI = Beck Depression Inventory; D = change in.

Interventions, Adjustment, and Health Course in HIV Infection and denial, on the one hand, and substance use and possibly risky sexual behaviors on the other. One self-defeating ªloopº that this model highlights follows: the infected person's awareness of the ineffectiveness of their coping modes and strategies may increase their sense of low self-efficacy, helplessness, and hopelessness, which in turn perpetuates social isolation, depressive symptoms, continued substance use, and other negative health behaviors. The intervention that was developed addresses each of these domains by enhancing selfefficacy and perceived control, teaching adaptive coping strategies, and improving social support availability, satisfaction, and utilization (Antoni, Schneiderman & Ironson, in press). This program teaches participants a variety of active coping strategies (e.g., cognitive restructuring, relaxation exercises, assertive responses) and may enhance their psychological functioning by increasing perceptions of selfefficacy, personal control, and mastery (Fishman & Loscalzo, 1987); changing maladaptive cognitive distortions (Simons, Garfield, & Murphy, 1984); modifying stressor appraisals and providing the person with an available coping response (Turk, Holzman & Kerns, 1986); decreasing a sense of hopelessness (Rush, Beck, Kovacs, Weisenberger, & Hollon, 1982); and increasing the availability and utilization of social support networks (Vachon, Lyall, Rogers, Freedman, & Freedman, 1980). This CBSM intervention program uses 10 weekly modules to address these aims as follows: (i) to increase personal awareness by providing information on sources of stress, the nature of human stress responses, and different coping strategies used to deal with stressors; (ii) to teach anxiety reduction skills such as progressive muscle relaxation and relaxing imagery; (iii) to modify maladaptive cognitive appraisals using cognitive restructuring; (iv) to enhance cognitive, behavioral, and interpersonal coping skills through coping skills training, assertion training, and anger management techniques; and (v) to provide a supportive group environment and increase utilization of social support networks. The effectiveness of this intervention was systematically evaluated in different cohorts of HIV-infected persons who were dealing with different landmark challenges known to occur during the infection and focused on specific ªcritical pointsº that these HIV-infected people were passing through. The rationale underlying this approach is that HIV infection comprises not only a ªspectrumº of diseases, but also a spectrum of psychosocial challenges that change over time. At least four, somewhat artificial, critical points can be used to characterize these challenges: (i) responding

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to the initial diagnosis of seropositivity; (ii) adjustment to being infected during the early asymptomatic period when individuals are still healthy; (iii) adjustment to the experience of HIV-related symptoms that are not life-threatening but do impact the quality of life; and (iv) adjustment to a diagnosis of AIDS (Lutgendorf, Antoni, Schneiderman, & Fletcher 1994). 8.10.4.2.1 The initial HIV seropositive diagnosis In the first set of studies, 65 gay men who did not know their HIV serostatus were randomly assigned to either a CBSM intervention, an aerobic exercise intervention, or a control group. After 5 weeks of participating in one of these conditions, blood was drawn for antibody testing and the men received news of their serostatus 72 hours later. The intervention continued for another 5 weeks (10 weeks total) and the men were followed through the initial ªadjustmentº period. Across the notification period the HIV-positive controls showed significant increases in anxiety and depression, whereas the HIV-positive CBSM subjects showed no significant changes in anxiety, or depression scores (Antoni, Baggett et al., 1991). The same buffering effect was present for the HIV-positive men assigned to the aerobic exercise group (LaPerriere et al., 1990). With respect to immune findings, the HIV-positive controls showed slight decrements in responsivity to PHA, NKCC, and NK cell counts preto postnotification (with no change in CD4 counts). In contrast, the HIV-positive CBSM subjects had significant increases in CD4 and NK cells and slight increases in PHA responsivity and NKCC, thus showing a ªbufferingº effect (Antoni, Baggett et al., 1991). Exercise had a similar buffering effect on several immune measures, though these are not reviewed in detail here (see LaPerriere et al. [1990] or LaPerriere et al. [1994]). A 2-year follow-up of 23 HIV-positive men recruited from these studies was conducted by Ironson and colleagues (Ironson et al., 1994) to determine psychological predictors of disease progression to symptoms and death from AIDS. They found that distress at diagnosis, HIV-specific denial coping (5 weeks postdiagnosis minus prediagnosis), and low treatment adherence (poorer attendance at either CBSM or exercise groups, a lower frequency of relaxation practice during the 10 weeks for those in the CBSM, and not doing homework for those in CBSM group) all predicted faster disease progression. Increases in denial and better treatment adherence remained significant even after controlling for initial disease severity at study entry (CD4 number). Furthermore,

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decreases in denial and a greater frequency of relaxation home practice during the 10-week intervention period were predictive of higher CD4 cell counts and greater blastogenic responses to PHA at 1 year follow-up (Ironson et al., 1994). These findings suggest that those men who attended intervention sessions regularly, and dealt with their denial during the intervention period, were most likely to show longer term immune and health benefits. There were also several consistent immune changes noted over the total 10 week period of intervention. The CBSM (and exercise) interventions were associated with a significant decrease in antibody titers to EBV-VCA and to HHV-6 as compared to assessment-only controls, whose antibody titers remained constant over the 10-week intervention period and elevated relative to healthy male laboratory controls (Esterling et al., 1992). An analysis of other psychosocial changes revealed that men in the control group showed significant decrements in social support during the postnotification period, whereas those in the CBSM group maintained their social support levels (Friedman et al., 1991). We also found that pre± postintervention decrements in social support were associated with greater declines in NKCC over a similar period (Antoni, Ironson et al., 1992) and that the reductions in EBV antibody titers during this period appeared to be mediated by increases in social support (Antoni et al., 1996). 8.10.4.2.2 The asymptomatic stage of HIV infection Even asymptomatic HIV disease is accompanied by wide-ranging psychosocial challenges including the many uncertainties with regard to future health course and available resources. The former arises due to the unpredictable physical course of the HIV infection and the latter as a function of uncontrollable stressors such as impaired occupational and social functioning, decreased earning power, high costs of medical care, complex medical treatments, difficulties with self-care, multiple bereavements, and declining social supports (Blendon & Donelan, 1988; Ginzburg & Gostin, 1986; Redfield & Burke, 1988; Walkey et al., 1990). The effects of CBSM intervention have been examined with gay men who knew of their HIVpositive status for at least 6 months, but were still asymptomatic. Although their physical functioning had not yet been affected by the virus, knowledge of their positive serostatus, and its eventual implications, had affected their lifestyle, behaviors, and sense of well-being.

Elsewhere the types of issues that these men were reporting have been described in greater detail (Lutgendorf, Antoni, Schneiderman, Ironson et al., 1994). Some issues included reluctance to terminate relationships, hesitating to have sex with someone who was uninfected for fear of infecting them, deciding to disclose HIV status to family members, and making job and career transitions. The predominant emotional experiences reported by these men included anger, fear, loss, and uncertainty. The 10-week CBSM intervention developed for these asymptomatic men was specifically adapted to address these issues (Antoni, Ironson et al., 1992). The early part of the intervention maintained its psychoeducational focus, with sessions on HIV and the stress response, cognitive appraisals, refuting, and replacing cognitive distortions. For this cohort, the group sessions discussing impending notification and postnotification concerns were replaced with a session dealing with unfinished issues related to seropositivity notification and notification of others regarding one's seropositivity. Behavior change, assertiveness, and social support were addressed extensively in these group sessions, especially strategies for eliciting social support. From a sample of 23 men, 11 were randomized to CBSM and 12 to an aerobic exercise program, each lasting 10 weeks. Because this was a pilot study there was no control condition. Participants in CBSM significantly reduced their anxiety, depression, anger, fatigue, and confusion levels, as well as increasing feelings of vigor (Antoni, Ironson et al., 1992). They also reported increased use of adaptive coping strategies, active coping, planning, and acceptance, and decreases in several maladaptive coping strategies such as mental disengagement and denial. These individuals also revealed significant increases in blastogenic responses to PHA and NKCC. Other groups have also reported significant reductions in distress (Chesney et al., 1996a, 1996b; Kelly et al., 1993; Mulder et al., 1994) and improvements in self-efficacy (Chesney et al., 1996a, 1996b) with cognitive behavioral interventions in asymptomatic HIV-infected men. Kelly and colleagues randomized participants to either cognitive-behavioral group intervention, social support group intervention, or no-treatment, and found significant reductions in depression, hostility, and somatization in the cognitive-behavioral groups, as well as the social support group, compared to controls. The cognitive-behavioral group was somewhat more effective at reducing drug use (Kelly et al., 1993). Mulder and colleagues compared cognitive-behavioral group intervention and existential experiential group intervention in

Interventions, Adjustment, and Health Course in HIV Infection HIV-infected gay men and found that both groups reduced distress and depressive symptoms compared with a wait-list control condition (Mulder et al., 1994). Finally, Chesney et al, compared the effects of a CBSM group intervention (Coping Effectiveness Training (CET)) (Chesney et al., 1994; Folkman et al., 1991) with an information group and a wait-list control group, and found that CET significantly increased self-efficacy and decreased perceived stress and burnout compared to the other two conditions (Chesney et al., 1996a, 1996b). 8.10.4.2.3 The pre-AIDS symptomatic stage of HIV infection The effects of a group-based CBSM intervention have also been evaluated in HIVpositive gay men who are dealing with the symptoms of the infection. Forty HIV-infected gay men who had mild symptoms (category B of the 1993 CDC definition) were randomly assigned to either the CBSM intervention or a modified wait-list control group in which they complete a 10 week waiting period before being reassessed and provided a one day CBSM seminar. Across the 10 weeks the CBSM group showed a significant decrease in depression, anxiety, and antibody titers to HSV-2 (Lutgendorf, Antoni, Ironson, Klimas et al., 1997). Moreover, the 10 week decreases in HSV-2 antibody titers were strongly associated with the degree to which participants lowered their depression scores on the Beck Depression Inventory (BDI; Beck, Ward, Mendelson, Mock, & Erbaugh, 1961) over this period. The control group showed no such changes in depressive symptoms or antibodies to HSV-2. Subsequently, conducted path analyses revealed that the effects of CBSM on HSV-2 antibody reductions appeared to be mediated by the intervention-associated depression changes (Antoni et al., 1996). Since this structured intervention was designed to increase cognitive and behavioral coping skills and support among group members, we next examined the relative contribution of intervention-related changes in coping skills and social support to reductions in dysphoria, anxiety, and distress-related symptoms over the study period. Those randomized to CBSM showed significant improvement in cognitive coping strategies, such as positive reframing and acceptance, as well as in total perceived social support provisions compared to a wait-list control condition (Lutgendorf et al., 1996). Cognitive coping changes, specifically acceptance of the HIV infection, were strongly related to lower dysphoria, anxiety, and total mood disturbance in this sample. Path analyses suggested that changes in social

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support, and in cognitive coping strategies, appear to mediate the effects of the CBSM intervention on the changes in distress noted during the intervention. These results suggest that cognitive coping strategies and social support factors can be modified by psychosocial interventions. These changes may in turn be important determinants of psychological wellbeing and quality of life during symptomatic HIV infection. 8.10.4.2.4 Full-blown AIDS To date, the bulk of the published empirical studies evaluating the efficacy of psychosocial interventions with HIV-infected people have focused on gay men at the earlier stages of the infection. While there is a growing literature documenting those psychosocial factors that are predictive of both psychological adjustment and physical health course in AIDS patients (e.g., long-term survivor literature reviewed in Ironson et al. [1995]), little or no work exists testing the effects of various interventions with patients who have progressed to AIDS. What we do know is that the onset of AIDS may be accompanied by a lessening of psychological distress from the levels experienced by symptomatic (pre-AIDS) HIV-infected men (Dilley et al., 1985; Tross & Hirsch, 1988). This may reflect a relief from the unpredictability of not knowing if and when the first signs of AIDS may occur. With the steady progression of HIV infection to more and more serious symptoms, and eventually AIDS, individuals go through a continual process of emotional crises, recycling through the stages that Kubler-Ross (1969) originally noted as comprising the dying process (Lutgendorf, Antoni, Schneiderman, & Fletcher, 1994). Moreover, HIV-infected patients may have emotional reactions that are more intense and labile than those described by Kubler-Ross (Hoffman, 1991). The high percentage of HIVinfected individuals diagnosed with adjustment disorders is a testimony to the difficulties encountered as these people try to come to terms with their illness and its impact on their lives (Hoffman, 1991). While it is clear that these individuals are in need of psychosocial services, one must be cautious in applying what has been learned from asymptomatic and early-stage populations to those with AIDS. There is a lack of empirical studies evaluating the effectiveness of psychosocial interventions such as CBSM or other approaches such as Expressive Supportive therapy conducted in a group or individualbased format with individuals at this stage of the infection. It may be that those with AIDS may find structured CBSM techniques useful, but

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may also require additional emotional support. For these individuals a therapeutic plan that combines a group-based stress reduction intervention with individual-based therapy directed toward these existential issues may be very useful. An optimal therapy plan may also involve pharmacologic treatment blended with the psychosocial intervention. 8.10.4.3 Common Features of Psychosocial Interventions in HIV Infection 8.10.4.3.1 Relaxation aspects It is noteworthy that many of the psychosocial intervention studies with HIV-infected persons have utilized some form of relaxationbased technique as part of the intervention protocol. This is relevant given the great deal of distress and anxiety that these people experience. Relaxation strategies are also salient given the reasonably large literature base relating relaxation to improvement in immune system functioning (e.g., Ironson et al., 1995; KiecoltGlaser et al., 1985, 1986). With regard to HIV infection, one of these studies found that frequency of home relaxation practice was related to better immunological functioning and slower disease progression in HIV-infected men (Ironson et al., 1994). Another study examined alternate ways of inducing relaxation in HIV-infected individuals (Ironson et al., 1996)Ðmassage therapyÐ because of its expected relaxing effects, and because it is easy to monitor objectively how much massage someone is getting. HIV-infected gay men showed a significant increase in NK cell number, NKCC, the soluble CD8 receptor, and the cytotoxic subset of CD8 cells during the weeks of daily massage intervention compared to the same men's values during a no-massage period. These men also showed significant decreases in 24 hour urinary cortisol output during the intervention period, suggesting that distress decreases and/or relaxation increases may have mediated these immunologic changes. Indeed, significant decreases in anxiety and increases in a sense of relaxation were also observed, which were both correlated with increases in NK cell number. This study suggests that the relaxation components of CBSM interventions noted previously may contribute directly to both the psychological and immunologic changes experienced by the participants. Psychosocial interventions used with HIV-infected persons use many other techniques in addition to relaxation and also vary considerably in terms of format and theoretical orientation. It is possible to examine some of the parameters on which these approaches converge and diverge.

8.10.4.3.2 Delivery format Regarding delivery format, it is important to note that most of the psychosocial interventions evaluated with HIV-infected persons (including those involving aerobic exercise training [LaPerriere et al., 1990]) have been conducted in a group format (Ironson et al., 1995). These CBSM interventions typically employed groups of approximately 6±8 participants facilitated by two group leaders. The sessions were conducted in comfortable rooms, ran about 2±2.5 hours in duration, and ran on a weekly basis over a 10week period. While there was some variability in terms of the duration of programs evaluated across different research groups (range = 8±12 weeks), the number of participants, group leaders, and session length and frequency were quite similar. Because of the fact that these sessions were conducted in a group format, little is known about the effects of these sorts of techniques with HIV-infected persons when delivered as individual-based psychotherapy sessions or self-help approaches. 8.10.4.3.3 Treatment orientation Different treatment orientations to psychosocial interventions have been compared in HIV-infected persons by one group in the Netherlands (in collaboration with the University of Miami). They examined the influence of treatment orientation by comparing the psychological (Mulder et al., 1994) and immunologic (Mulder, Antoni, Emmelkamp et al., 1995) effects of one group-based intervention using a cognitive-behavioral orientation vs. one using an existential/experiential orientation in HIV-infected gay men. These men were recruited from a large cohort study conducted through the Amsterdam Municipal Health Center. The cognitive-behavioral therapy (CBT) intervention included training in cognitive restructuring, relaxation exercises, behavior change, assertiveness skills, coping fit for controllable vs. uncontrollable stressors, and information on stress responses. As such, it was quite similar to the CBSM interventions described previously. The experiential therapy (ET) condition was less structured and focused on increasing awareness of the here and now, of their inner experiential process, and restoring congruence between emotional, cognitive, and behavioral schemata. The intervention also attempted to help participants deal with a shortened life perspective and anxiety about future illness and death. Despite the differences in theoretical orientation the authors note that both interventions were designed to reduce stress, improve coping, build social support,

Interventions, Adjustment, and Health Course in HIV Infection and encourage emotional expression. They found that both (CBT and ET) conditions were associated with significant decreases in POMS total mood disturbance, and BDI scores compared to the controls, though there were no changes in coping style, social support, or emotional expression over the intervention period. Mulder and colleagues compared the 26 men randomized ultimately to either CBT or ET with men from the Amsterdam cohort study who did not participate in the intervention study for differences in slope of immune changes that had occurred over the period after the intervention (Mulder, Antoni, Emmelkamp et al., 1995). Those intervention group participants with the largest decreases in distress, between the beginning of either intervention and 9 months later, showed the least decline in CD4 cell counts over a 2-year follow-up period from the beginning of the intervention. These findings suggest that while theoretical orientation may not determine the psychological improvements gained by HIV-infected men participating in group-based psychosocial interventions, the size of treatment-related reductions in distress may be predictive of longer-term health benefits. This interpretation seems to be in line with the findings reviewed previously (Antoni, Baggett et al. [1991] for short-term effects and Ironson et al. [1994] for longer-term effects). 8.10.4.4 Summary of Completed Studies of Psychosocial Interventions with HIVinfected Persons Here we summarized the qualities characterizing the psychosocial intervention studies with HIV-infected individuals that were completed between 1989 and 1997. These studies recruited moderate sized samples that were approximately equally distributed across experimental conditions usually resulting in 10±30 people actually receiving the intervention in any single trial. While individuals participating in these studies were all gay or bisexual men, congruent with the predominant AIDS incidence patterns occurring in the 1980s, it should be noted that women now make up nearly 15% of all AIDS cases and current incidence patterns for HIV infection suggest that this proportion will increase. Therefore, these studies need to be replicated with other HIV-infected populations such as indigent women. Of the interventions tested to date, most were conducted in groups, used trained facilitators or therapists, and met at least once weekly over periods of 8±12 weeks. Since the studies evaluating these interventions were designed to test their immediate efficacy, cohorts were

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typically assessed at single time points at the beginning and end of the intervention period. At least two studies followed subjects over a 2-year postintervention period (Ironson et al., 1994; Mulder et al., 1995). While the results of this set of studies are not entirely consistent, they suggest the potential efficacy of psychosocial interventions for increasing psychological adjustment, immune functioning, and health status in HIV-infected people at early and middle stages of the disease who are dealing with mounting stressors. Less is known about the effects of these interventions with people at the more advanced stages of the disease. One study focused specifically on how a time-limited CBSM intervention could moderate the acute impact of learning one's HIV serostatus for the first time (Antoni, Baggett et al., 1991), while the remainder have examined how psychosocial interventions can improve psychological functioning in people dealing with the more chronic stress of having had HIV for a number of years (Auerbach et al., 1992; Coates, McKusick et al., 1989; Ironson et al., 1995; Mulder et al., 1994). The most consistent trends among the psychological effects of these interventions are: a decrease in distress and depressed affect; a decrease in the use of avoidance and denial as coping strategies; an increase in the use of acceptance and positive reframing strategies; and an increase or maintenance of social support provisions. While CBSM intervention has been shown to reduce antibodies to herpes viruses and to modulate NKCC, no direct effects have been observed on HIV disease progression markers. Three group-based stress management interventions reported no significant impact on CD4 cell counts (Auerbach et al., 1992; Coates, McKusick et al., 1989; Mulder, Antoni, Emmelkamp et al., 1995), but none of these measured herpes virus antibodies or NKCC, which were the measures found to be most responsive to change in some of the other studies (Esterling et al., 1992; Ironson et al., 1996; Lutgendorf, Antoni, Schneiderman, & Fletcher, 1994). Ironson et al. (1995) note that no studies have tested the long-term effects of these interventions on 5- or 10-year survival, although one study with a small sample showed that intervention-related variables (denial coping reductions and greater treatment adherence) were predictive of 2-year survival (Ironson et al., 1994). Another study (Mulder, Antoni, Emmelkamp et al., 1995) showed distress changes (which can often be modified by psychosocial interventions) were related to changes in CD4 counts over a similar 2-year period. However, it should be noted that ªassignment to a psychosocial interventionº has not been causally

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related to a slower rate of disease progression or greater survival time in HIV-infected persons. This lack of a causal effect may be due to the limited statistical power offered by the small samples that have been studied to date. Clinical trials that utilize hundreds of participants may be necessary to capture the effects of psychosocial interventions on the health course of this disease. It is also possible that measures of immune function might be more sensitive to the effects of stress-reducing psychosocial interventions than lymphocyte counts because stress hormone interactions with receptors that mediate cell activity and certain immune functional indices may be especially relevant to the pathophysiology of HIV infection in particular. Finally, it has been suggested that health psychology interventions possessing cognitive and behavioral elements, similar to those just noted, may be quite useful in addressing other aspects of HIV infection, such as nutritional disorders, pain, sleep problems, and medication adherence, all having a potentially huge impact on the quality of life of infected individuals (Sikkema & Kelly, 1996). It will be important to incorporate these additional variables into intervention protocols conducted in the future as more and more people live longer and longer with this disease. 8.10.5 CONCLUSION This chapter has summarized the rationale and empirical support for the role of health psychology in the context of HIV infection and AIDS. Based on this work it is plausible to suggest that psychosocial targets of interventions should include reductions in distress and depression, as well as avoidance, denial, and rumination as methods of dealing with the chronic stress of the infection. Equally important intervention targets would involve increasing active coping and a sense of social attachment as important stress buffers. Several studies are underway which further examine the effects of psychosocial interventions on psychological adjustment, immune status, and disease course in HIV-infected individuals. There are several reasons to be encouraged by the trends that are apparent across ongoing investigations of psychosocial interventions in HIV-infected populations. First, all of the studies use standardized timelimited interventions (10±17 weeks) that have been ªmanualizedº with specific treatment modules and criteria for therapist training and implementation (e.g., Antoni, Schneiderman, & Ironson, in press). In some cases these interventions follow a CBSM orientation and in others a more experiential-existential approach

is utilized while, in others, CBSM and experiential techniques have been integrated into the same intervention condition. The efficacy of these different treatment orientations may ultimately be shown to vary systematically as a function of the disease stage and demographic characteristics of the targeted population. Second, these investigations are each recruiting people who meet specific inclusion and exclusion criteria that are similar across studies. Specifically, the samples are largely gay men at the early to middle stages of the infection (preAIDS symptoms and a restricted range of CD4 counts) who are dealing with similar psychosocial issues. Shifting demographic patterns of the HIV/AIDS epidemic make it imperative to develop techniques to help other HIV-infected populations, such as women of color, manage their disease. One study, led by Antoni, Greenwood, and Schneiderman in Miami, is examining the effects of a 10-week CBSM intervention in HIV-infected African-American women who are developing the first symptoms of the infection. Another trial is evaluating the effects of a similar intervention in women who have already developed AIDS. Clearly, a next step is to develop psychosocial interventions to address secondary prevention issues in the growing number of HIV-infected injection drug users. Third, each study is assessing the psychosocial effects of these interventions with a collection of well-validated instruments designed to track changes in distress and depression as well as intermediary psychosocial variables such as coping, social support, and stressor appraisals. In most cases, the most reliable instruments have been employed in these batteries supplemented with more specific measures designed to tap the most salient areas of participantsº lives. Fourth, most of these studies currently being done reflect an excellent breadth of immunologic measures (including qualitative and quantitative indices). For instance, several studies are now assessing the effects of psychosocial interventions on NKCC and blastogenic responses to PHA. Several studies are also examining changes in IgG antibody titers to a panel of relevant herpes viruses (e.g., EBV, HHV-6, CMV, HSV) and assessing serum neopterin as a subclinical disease progression marker. In the future it is likely that assessments of HIV viral load will join this list of assays as a way to monitor treatment-related changes in disease status. It is also imperative that more disease- and antigen-specific immunologic measures be incorporated into assessment protocols to better understand specific pathophysiologic links between psychological changes and health course.

References Fifth, all of the studies are tracking the effects of their interventions on clinical health changes using standardized staging procedures and criteria (Centers for Disease Control, 1993). Due to the relatively large sample sizes, these studies should be able to assess long-term effects on survival. All of these studies are also monitoring changes in several other behavioral measures such as sexual behaviors, substance use, physical activities, sleep, and medications. Information about changes in these additional measures, over the course of the interventions, may be useful for clarifying the mechanisms underlying treatment changes in affective, immunologic, and health endpoints, as well as representing important quality of life changes that may be likely to occur following participation in psychosocial interventions. Once completed these studies may provide efficacy data supporting the initiation of larger clinical trials as well as informing behavioral scientists about the psychosocial mechanisms underlying psychological adjustment, physiological functioning, and health preservation in this chronic disease. Sixth, the arrival of protease inhibitors and triple combination therapies to the treatment arena has brought about important improvements in the health care of AIDS patients (Lewin, 1996; Schneiderman et al., 1997). The resulting treatment philosophy for HIV and AIDS increasingly views HIV infection as a chronic disease in which patient management is critical. It is quite reasonable to propose that psychosocial interventions can be an essential part of this management (Schneiderman et al., 1997). The key here is consistent adherence to a demanding medication schedule in the context of an already stressful daily existence. We now know, for example, that once patients are given protease inhibitors, medication protocols must be rigidly followed with respect to drug schedules and food intake or the virus may mutate and become drug resistant (Lewin, 1996). Failure to adhere to specific guidelines cannot only compromise the effects of the particular protease inhibitor being used, but can also reduce the efficacy of other related compounds to which cross-resistance has developed (Lewin, 1996). Psychosocial interventions that provide information, skills, and support to patients can facilitate adherence to difficult medication protocols. Since interventions such as CBSM can decrease denial and depressed affect, they may, in turn, decrease negative health behaviors and facilitate adherence to medical treatment regimens. It has been shown that better adherence to a stress management protocol is predictive of a slower rate of disease progression (Ironson et al., 1994). The improve-

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ments in immune function that have been associated with these psychosocial interventions raise the interesting question of whether CBSM can help reconstitute the compromised immune system once pharmacologic agents such as protease inhibitors have contained the virus. These latter questions constitute the focus of the ongoing work using health psychology strategies to address contemporary secondary prevention issues in the growing populations of HIV-infected persons who are attempting to manage their disease.

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.11 Diabetes Mellitus CLARE BRADLEY, AFSANE RIAZI, and SHALLEEN BARENDSE Royal Holloway, University of London, UK MARY B. PIERCE Charing Cross and Westminster Medical School, London, UK and CHRISTEL HENDRIECKX Vrije Universiteit Brussel, Brussels, Belgium 8.11.1 INTRODUCTION

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8.11.1.1 The Conditions 8.11.1.2 Insulin Dependent Diabetes Mellitus 8.11.1.3 Noninsulin Dependent Diabetes Mellitus 8.11.2 IDDM: ETIOLOGY, RISK FACTORS, AND PREVENTION

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8.11.2.1 Risk Factors in IDDM 8.11.2.2 Prevention of IDDM 8.11.2.2.1 Primary prevention 8.11.2.2.2 Secondary prevention 8.11.2.2.3 Tertiary prevention 8.11.3 NIDDM: ETIOLOGY, RISK FACTORS, AND PREVENTION

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8.11.3.1 Risk Factors in NIDDM 8.11.3.2 Prevention of NIDDM 8.11.3.2.1 Primary prevention 8.11.3.2.2 Secondary prevention 8.11.3.2.3 Tertiary prevention 8.11.4 IMPACT OF THE CONDITION ACROSS THE LIFE SPAN ON PERSON AND FAMILY

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8.11.5 PSYCHOLOGICAL ASPECTS OF SYMPTOMS

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8.11.6 SPECIFIC ISSUES OF ADHERENCE

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8.11.7 PSYCHOLOGICAL INTERVENTIONS IN THE MANAGEMENT OF DIABETES

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8.11.7.1 Blood Glucose Awareness Training and Other Approaches to Regaining Hypoglycemia Awareness 8.11.7.2 Identification of Stress Reactivity 8.11.7.2.1 Mechanisms involved in stress and diabetes control 8.11.7.2.2 Acute stress and blood glucose reactivity 8.11.7.2.3 Life stress and blood glucose reactivity 8.11.7.3 Stress Management Training 8.11.7.4 Monitoring of Psychological Outcomes and Processes 8.11.7.4.1 Measurement of psychological well-being and patient satisfaction 8.11.7.4.2 Measurement of quality of life 8.11.7.4.3 Measurement of knowledge, beliefs, and other cognitions 8.11.7.5 Patient Empowerment 8.11.7.6 Weight Management

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288 288 288 289 289 290 291 291 292 293 294 295

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8.11.7.6.1 Eating disorders and withholding of insulin 8.11.7.6.2 Weight reduction programs in NIDDM 8.11.7.7 Treatment of Sexual Dysfunction

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8.11.8 CULTURAL ISSUES

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8.11.9 PROFESSIONAL ISSUES

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8.11.10 REFERENCES

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8.11.1 INTRODUCTION 8.11.1.1 The Conditions Diabetes mellitus is not a single disorder but a heterogeneous group of disorders. All forms are characterized by hyperglycemia and disturbances of carbohydrate, fat, and protein metabolism which are associated with absolute or relative deficiencies of insulin action and/or insulin secretion. The World Health Organization (WHO) developed a now widely accepted classification of the disorder, largely based on clinical characteristics (see Table 1, WHO, 1985). Insulin is needed to allow glucose to pass from the blood into most of the body cells. Only the cells of the brain and central nervous system can use glucose from the blood in the absence of insulin. Without insulin, most body cells metabolize substances other than glucose for energy. However, fat metabolism in the absence of glucose metabolism, creates ketone bodies which are poisonous and their build up is associated with hyperglycemic coma. In the absence of sufficient insulin, unmetabolized glucose builds up in the blood. Water is drawn from body cells by osmosis to dilute the highly concentrated blood, and is then excreted along with much of the glucose, once the renal threshold for glucose (usually 10 mmol/L) is exceeded. Dehydration follows. The characteristic presenting symptoms of diabetes are fatigue, extreme thirst, excessive urination, unexplained itch, recurrent infections (e.g., boils and thrush), and otherwise unexplained weight loss. These symptoms recur if treatment is not controling the condition adequately. Complications of diabetes are responsible for considerable morbidity and mortality. The acute complications of diabetes are hypo- and hyperglycemic coma and infections. The chronic complications include microvascular complications such as retinopathy and nephropathy, and the macrovascular complications of heart disease and stroke. Diabetes mellitus is the commonest cause of blindness and renal failure in the UK and the USA. Other common complications include autonomic and peripheral neuropathy. A combination of vascular and

neuropathic disturbances results in a high prevalence of impotence in men with diabetes. Peripheral neuropathy causes lack of sensation in the feet which can cause minor injuries to go unnoticed, become infected and, with circulatory problems obstructing healing, ulceration and gangrene are serious risks and amputation is not uncommon. Evidence from meta-analysis of studies of the relationship between glycemic control and microvascular complications (Wang, Lau, & Chalmers, 1993), and from the longitudinal multicenter Diabetes Control and Complications Trial (DCCT) in the USA (DCCT Research Group, 1993), have established a clear relationship between improved blood glucose control and reduction of risk of retinopathy and other microvascular complications in insulin-dependent diabetes mellitus (IDDM). It is likely that there would be similar findings for noninsulin-dependent diabetes mellitus (NIDDM) though the studies did not include NIDDM patients. However, the DCCT included highly selected, well-motivated, welleducated and well-supported patients, cared for by well-staffed diabetes care teams involving educators and psychologists as well as diabetologists and diabetes specialist nurses. It is a considerable challenge to obtain the goals of the intensively treated patients in the DCCT with the vast majority of people with diabetes given the more limited health care resources typically available in routine practice. If diabetes control can be improved without significant damage to quality of life, the economic, health, and quality of life savings associated with a reduction in complications in later life will be vast. Although some people who have had poorly controlled diabetes over many years do not develop complications, complications commonly arise after 15±20 years of diabetes and individuals in their 40s or even 30s may develop several complications in rapid succession. However, up until the early 1980s, patients had no way of monitoring their own blood glucose levels at home. Urine glucose monitoring only told them when their blood glucose had exceeded the renal threshold of approximately 10 mmol/L (i.e., was far too high), without being able to discriminate between the too high levels of 7±10 mmol/L or the hypoglycemic levels below 4 mmol/L.

Introduction

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Table 1 WHO (1985) classification of diabetes mellitus. Types

Description

1. 2.

Insulin-dependent diabetes mellitus (IDDM) Noninsulin-dependent diabetes mellitus (NIDDM) a. Nonobese b. Obese Malnutrition-related disorders Other types of diabetes associated with certain conditions and syndromes including: pancreatic disease, diseases of hormonal etiology, druginduced or chemical-induced conditions, abnormalities of insulin or its receptors, certain genetic syndromes Gestational diabetes mellitus

3. 4.

5.

NIDDM and IDDM are the most common forms of diabetes in first-world countries, with gestational diabetes also being common.

Clinics relied on random blood glucose testing and there were no measures of average blood glucose over a longer period. Since the 1980s there have been measures of glycosylated hemoglobin (GHb, HbA1, or HbA1c) which indicate average blood glucose over a six to eight week period and measures of glycosylated protein, fructosamine, which indicates average blood glucose over a two-week period. Bloodglucose meters for patients were first introduced in the early 1980s and the accuracy and convenience of the meters and the reagent strips they use has improved dramatically since early models. By the late 1990s blood-glucose monitoring is part of the daily routine for most people using insulin in developed countries. Blood-glucose monitoring is less often prescribed for tablet- and diet-alone-treated patients, financial reasons probably being allowed to outweigh the educational value of accurate feedback in improving control long term. The reduced risk of hypoglycemia and diabetic ketoacidosis in NIDDM patients not using insulin means that acute crises rarely arise in these patients though their risk of long-term complications is at least as great as in IDDM and might be expected to be reduced if feedback from blood-glucose monitoring were provided.

8.11.1.2 Insulin Dependent Diabetes Mellitus IDDM, also known as juvenile-onset diabetes, ketosis-prone diabetes, or Type 1 diabetes, is the commonest form of diabetes in children and young adults of European origin. Age at clinical onset of the condition is usually under the age of 30 years. People who develop IDDM lose the ability to produce insulin altogether. Diagnosis and treatment with exogenous insulin is often

followed by a ªhoneymoonº period when endogenous insulin production restarts and the exogenous insulin doses required are reduced and, occasionally, can be discontinued. This is, however, always only a temporary respite. Thereafter, exogenous insulin, usually delivered by subcutaneous injection, will be needed continuously throughout the lifetime of a person with IDDM. If insulin therapy is discontinued, even for a few days, ketotic coma will develop and, if not treated, will result in death. The onset of IDDM is abrupt, with severe thirst, excessive urination, and dramatic weight loss. Individuals usually present to the doctor with one or more of these symptoms and an elevated blood glucose level. They will also have glucose, and possibly ketones, in their urine. This combination indicates diabetic ketoacidosis and is a potentially fatal medical emergency. Diagnosis is made clinically and confirmed on the basis of an elevated blood glucose concentration (4 6.7 mmol/L). IDDM can be managed by balancing injected insulin, carbohydrate intake, and energy expenditure. The goal of treatment is to maintain blood glucose levels as close to the normal range as possible (i.e., 4±6 mmol/L) in order to reduce the risk of chronic complications, while also avoiding the dangers of blood glucose levels falling to hypoglycemic levels. To achieve this goal, people with IDDM will usually need to measure their blood glucose levels several times daily. In the 1980s and early 1990s, two injections a day were commonly used by IDDM patients. However, more recent evidence has shown that more intensive therapy, with up to five injections per day, is associated with reduced risk of chronic complications (DCCT Research Group, 1993; Wang et al., 1993) though at the price of threefold increases in

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occurrence of severe hypoglycemic episodes (DCCT). Intensive insulin regimens have become more commonly used in the 1990s and this trend has been facilitated by the development of insulin delivery devices such as pen-injectors which simplify the task of administering insulin, and continuing improvements in blood glucose monitoring methods (Bradley, Christie, & Home, 1991). The dangers of hypoglycemia, which tend to be increased with the intensity of the insulin therapy, give increasing cause for concern. Severe hypoglycemic episodes cause acute behavior changes with behavior often becoming aggressive, and unless action is taken to increase the blood glucose levels, collapse and coma follow rapidly. Insulin-dependent individuals need to carry with them at all times glucose tablets or some other form of rapidly absorbed glucose so that they can respond to early signs of hypoglycemia by increasing their blood glucose levels and thus prevent a severe hypoglycemic episode.

8.11.1.3 Noninsulin Dependent Diabetes Mellitus NIDDM, also known as maturity-onset diabetes or Type 2 diabetes, is the commonest form of diabetes worldwide (85% of cases in the developed world). Age at clinical onset of the disorder is usually over the age of 40 years. People with NIDDM continue to produce insulin, but it is inadequate either in amount or in action to maintain their blood glucose levels in the normal range. With the development of the pathological process involved, patients first have asymptomatic glucose intolerance and then go on to develop diabetes mellitus. Unlike IDDM, the process of development of NIDDM is insidious. Individuals may have NIDDM for years before it is diagnosed. Diagnosis may result from patients presenting with classical symptoms, or with one or more of the complications of diabetes, or diabetes may be found on routine medical examination (confirmed by oral glucose tolerance testing). Dietary management is the first choice of treatment for NIDDM. A low-fat weight-reducing high fiber diet will be recommended to those who are overweight and if weight can be reduced and maintained close to ideal weight it may be the case that no further treatment is required. The diet recommended is usually high in complex carbohydrates and fiber and low in refined carbohydrates in order to avoid rapid absorption of glucose and to maintain blood glucose at a more even level without peaks of hyperglycemia. Reduction in fats may also be recommended (particularly if

the individual has abnormal lipid levels) with a view to lowering and maintaining triglyceride and cholesterol levels and thereby reducing the risks of cardiovascular disease which accompany NIDDM. If glucose levels cannot be controlled adequately with diet alone, oral hypoglycemic agents are added to treatment. These tablets do not contain insulin which, being a protein, would be digested if taken orally, but rather act to stimulate production of endogenous insulin or to enhance the effectiveness of existing levels of insulin. A variety of oral hypoglycemic drugs are available, such as sulfonylureas and biguanides. These differ in their modes of action and side effects, for example, sulfonylureas may increase the risk of hypoglycemia. If adequate control of blood glucose cannot be achieved with diet and tablets, insulin is likely to be recommended. It is important to recognize that NIDDM patients using insulin are just as prone to severe hypoglycemia as IDDM patients. However, because in NIDDM there is limited endogenous insulin secretion, sufficient to allow some glucose metabolism, ketoacidosis and hyperglycemic coma are unlikely to develop if exogenous insulin is reduced or discontinued. Although NIDDM is often misguidedly referred to as ªmild diabetes,º the risk of chronic complications is no less than that associated with IDDM. People with NIDDM are two or three times as likely to develop cardiovascular disease than people without diabetes and 75% die of cardiovascular disease. The life expectancy of people with NIDDM is, on average, reduced by a decade as a result of the disease. Although the later onset of NIDDM might be expected to reduce the risk of complications which are usually associated with raised blood glucose levels over 15 or more years, the insidious onset of NIDDM delays diagnosis, and chronic hyperglycemia over many years probably accounts for the many cases which are only diagnosed after the onset of complications.

8.11.2 IDDM: ETIOLOGY, RISK FACTORS, AND PREVENTION IDDM is caused by the autoimmune destruction of insulin-producing beta-cells in the pancreas. The pathological process is probably initiated several years, sometimes even decades, before clinical onset by an interaction of genetic predisposition and environmental triggers (Zimmet, 1995). The incidence of IDDM has been reported to change with age, rising to a peak around puberty (Laakso & PyoÈraÈlaÈ, 1985) with a second peak later in life (Krolewski,

IDDM: Etiology, Risk Factors, and Prevention Warram, Rand, & Kahn, 1987). Altogether, more cases of IDDM are diagnosed in adulthood rather than in childhood (Vandewalle et al, 1993) and, in some studies, a higher incidence has been found in males than in females (Blohme et al., 1992; Bruno et al., 1993). Marked geographical variation in IDDM incidence has been observed, varying from 35.3 per 100 000 inhabitants in Finland to 1.9 per 100 000 in Japan (Karvonen, Tuomilehto, Libman, & LaPorte, 1993). Differences in incidence between neighboring countries has led to the assumption that diet and lifestyle are important determinants of the disease (Green, Gale, & Patterson, 1992), but differences in the frequency of ªdiabetogenesº may also play a role. Since the 1970s the incidence of IDDM has doubled in Europe (Bingley & Gale, 1989) and is steadily increasing worldwide (Krolewski et al., 1987). However, most of the incidence data are only available for those with early onset before the age of 20 years. Since most cases are diagnosed during adulthood, it may be that the apparent doubling in incidence is due to a shift towards earlier clinical onset of diabetes rather than to an increase in the number of people developing IDDM at some point in their lives (Bingley & Gale, 1989).

8.11.2.1 Risk Factors in IDDM A genome-wide search has revealed that more than 12 gene loci contribute to genetic susceptibility for IDDM (Todd, 1995). The genetic component of the condition is indicated by the 5% prevalence of IDDM in first degree relatives, compared with less than 1% in the general population (Bingley, Bonifacio, & Gale, 1993; Gorus, Anselmo, & Keymeulen, 1993), and the higher concordance rate for IDDM in identical than in nonidentical twins (Leslie & Elliott, 1994). Nevertheless, 90% of the new cases occur in individuals without a family history of diabetes (Bingley et al., 1993). These individuals, however, also carry certain predisposing genotypes. Genetic susceptibility is not sufficient to cause diabetes (Karvonen et al., 1993) since a majority of people with diseaseassociated alleles do not develop IDDM. Environmental agents appear to have an important role. The way in which the environment affects the pathogenesis is still unclear. It has been hypothesized that viral infection (Krolewski et al., 1987; Zimmet, 1995) and proteins in the diet (Gerstein, 1994) are important factors. Psychological stress may also have a role in increasing vulnerability to viral infection or impairing defense mechanisms against such infection, thereby facilitating the

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progression of the hidden pathological process. Clear evidence for such an effect is difficult to obtain, though suggestive evidence is available to support the notion that stress may contribute to the development of IDDM (see Bradley, 1988 for review). There is stronger evidence to suggest that psychological stress can trigger the onset of symptoms in a person in whom islet beta-cell damage is at an advanced stage (Bradley, 1988; Clayer, Bookless-Pratz, & Harris, 1985). Blood glucose levels already raised as a consequence of diminishing insulin production can be elevated further by neuroendocrine responses to psychological stress and tipped over the renal threshold to precipitate the overt symptoms of diabetes which would have appeared in due course without the occurrence of the stress. Knowledge about the incidence of IDDM has developed as a result of national and regional registries (Karvonen et al., 1993). Standardized data are collected on previous exposure to environmental factors and occurrence of metabolic and genetic markers for new IDDM cases (Gorus et al., 1993). The long-term follow-up of at-risk families allows comparative studies of the cause and pathogenesis of the disease and can help clarify temporal, regional, and environmental variations in the incidence of diabetes (Diabetes Epidemiology Research International Group, 1988). 8.11.2.2 Prevention of IDDM There is no cure for IDDM. Despite evidence that improved blood glucose control reduces the risks of complications and despite the development of increasingly effective insulins and more convenient delivery systems and monitoring devices, the complications of diabetes continue to present major health problems with massive personal, social, and economic costs. The possibilities of preventive strategies are therefore attracting considerable attention. 8.11.2.2.1 Primary prevention The aim of primary prevention is to avoid the initiation of the hidden pathological process leading to IDDM. This strategy requires identification of genetically predisposed individuals and protection against avoidable environmental factors (e.g., nutritional or viral). Because of the lack of specific knowledge about the nature of these triggering factors, large-scale initiatives could lead to treatment of many people who might never develop IDDM (Palmer & McCulloch, 1991). The role of the diabetes registries is crucial in improving

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understanding of the interaction between genetic and environmental factors. A first attempt at primary prevention has been initiated in Finland (Akerblom et al., 1993), where the role of cowsº milk proteins in the diet of young children is under investigation. 8.11.2.2.2 Secondary prevention The preclinical phase of IDDM is accompanied by humoral, immune, and metabolic abnormalities. Much knowledge has been accumulated since the 1980s about the diabetespredictive value of several of these early markers (Dotta, Dionisi, Farilla, & DiMario; 1996). Refining the use of these marker combinations would allow early diagnosis of diabetes and offers the possibility of secondary prevention with the aim of halting or delaying the progression of further destruction of the betacell mass by pharmacological intervention at an early stage of the pathological process. The presence of antibodies against various diabetes-associated islet-cell autoantigens is considered to be one of the best indicators of a latent autoimmune disease process in the islets (Dotta et al., 1996), although the relation of these antibodies to the pathological changes is poorly understood. Data obtained in a representative sample recruited through diabetes registries show that at least one of these immunological markers is present in approximately 90% of the individuals at clinical diabetes onset and also in the vast majority of relatives in the preclinical stage (Gorus et al., 1997; Verge et al., 1996). The presence of more than one type of autoantibody greatly increases the risk of IDDM (Eisenbarth, Vergen, Allen, & Rewers, 1993). Metabolic markers can be detected in a later phase of the preclinical stage. A decreased early-insulin response to an intravenous glucose challenge and increased proinsulin levels can indicate impending clinical onset of IDDM. There are indications that combined presence of these biological markers can also be helpful in identifying preclinical IDDM in the general population (Hagopian et al., 1995). The early diagnosis of a hidden disease process creates the theoretical possibility of influencing the process pharmacologically in such a way that the clinical disease manifestation is prevented. Pilot studies in animal models and on a small scale in humans suggest that such an approach is feasible. Large-scale intervention trials have been initiated with nicotinamide and with insulin. It is expected from preliminary studies that nicotinamide (vitamin B3) could delay the onset of IDDM (Elliott & Chase, 1991; Pozzilli & Andreani, 1993), but that the preventive effect could vary from individual

to individual (Herskowitz, Jackson, Soeldner, & Eisenbarth, 1989). Multicenter programs were launched to investigate the effect of this vitamin on the pathological process and on the biological markers in first-degree relatives (Nordenfelt, 1996). A second approach has been the prophylactic use of insulin to allow the remaining beta-cell mass to rest or to induce tolerance against beta-cell autoantigens. A clinical trial has begun in the USA (Keller, Eisenbarth, & Jackson, 1993). 8.11.2.2.3 Tertiary prevention Tertiary prevention aims to prevent longterm complications despite the onset of diabetes. One approach has been pancreatic organ transplantation which has been shown to restore normoglycemia and to halt the progression of chronic complications (Robertson, 1992). However, the intervention is by no means a cure, and the required immunotherapy can cause serious unwanted effects, including increased risk of cancers. For these reasons, solitary pancreas transplantation is not a suitable treatment for diabetes. Pancreas transplantation is, however, sometimes performed in combination with a kidney graft in individuals with severe chronic complications. Since the 1970s, transplantation of insulin-producing islets has been studied as an alternative for pancreatic organ transplantation (Pipeleers, Keymeulen, & Korbutt, 1994). Several clinical trials have been initiated worldwide (Sutherland et al., 1996). Although many obstacles have to be overcome, transplantation of allogeneic (including human to human) or xenogeneic (including pig to human) donor tissue has the potential to treat IDDM in the early stages with a view to avoiding complications (Pipeleers et al., 1994). 8.11.3 NIDDM: ETIOLOGY, RISK FACTORS, AND PREVENTION 8.11.3.1 Risk Factors in NIDDM NIDDM appears to be a complex multigenicenvironmental disorder, with a strong genetic component. Theories about its pathogenesis implicate intrauterine malnutrition (Hales & Barker, 1992) and a common (little understood) metabolic disorder, Syndrome X (Reaven, 1988), which leads in differing circumstances to NIDDMÐobesity, hypertension, or hyperuricemia (gout). Familial clustering is a characteristic feature of NIDDM. Monozygotic twin studies show a concordance rate of over 90% (Newman et al., 1987; Pyke, 1979). The US National Health and

NIDDM: Etiology, Risk Factors, and Prevention Examination Survey (Harris, 1984) showed that in people aged 35±74, about 35% of those with a medical history of diabetes had one or both parents with diabetes. Other studies have shown an even greater concordance for NIDDM in sibling pairs than parents and children (Beaty, Neel, & Fajans, 1982). The literature on risk of NIDDM in the offspring of affected people has been reviewed (Pierce, Keen, & Bradley, 1995). The reviewers concluded that having a parent with NIDDM increases offspring risk by between two- and fourfold, but a family history of NIDDM does not increase risk of IDDM. NIDDM risk increases if the affected parent is the mother rather than the father, or if both parents are affected, and with increasing age, and in certain racial groups. NIDDM is more common in those who are overweight, people who take little exercise, and in racial groups other than northern European whites. The association between obesity and risk of NIDDM is strong, graded, and consistent. The literature has been comprehensively reviewed by Felber, Acheson, and Tappy (1992). The distribution of obesity, central or peripheral, has been shown to be a better predictor of later diabetes than the degree of adiposity. People with ªcentralº or ªmaleº type obesity are at much higher risk than those with ªperipheralº obesity. Epidemiological studies have shown a relationship between inactivity and NIDDM (Helmrich, Ragland, Taylor, Leung, & Paffenbarger, 1991; Taylor, Ram, Zimmet, Raper, & Ringrose, 1984), although these studies have been cross-sectional rather than prospective and hence caution is needed in deducing causality. People with impaired glucose tolerance progress to NIDDM at a rate of between 2±6% per year, largely dependent on race (Jarret, Keen, Fuller, & McCartney, 1979; Saad et al., 1988). However, it is not possible to predict who will progress to NIDDM and who will revert to metabolic normality. Gestational diabetes can be regarded as an extreme form of impaired glucose tolerance in some pregnant women in response to the metabolic strain of pregnancy. After the baby is born, the diabetes may disappear, but it is likely to reappear in later life. Certain racial groups, including Micronesians (e.g., Nauruans), native Americans (e.g., Pimas) Asian Indians, Mexican Americans, and Australian Aborigines, seem to be particularly prone to NIDDM, a fact which may be due to their genotype (Neel, 1982). Their susceptibility manifests itself when they move from a ªtraditionalº lifestyle to a more ªmodernº one with increased availability of food and with reduction in the demand for

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physical exertion (Zimmet, 1992). Possibly, the genetic make-up of these people is adapted to survival in the face of variable supplies of food. This ªthrifty genotypeº (Neel, 1982) lays down fat stores very quickly when food is available and so facilitates survival during periods of famine. Such a genetic make-up would have clear evolutionary advantages in a ªtraditionalº lifestyle such as that of the Australian Aboriginal hunter-gatherers. However, when these people move to a lifestyle characterized by a continuously plentiful food supply, they readily become overweight and develop NIDDM. Alternatively Hales and Barker (1992) have hypothesized that infants who are malnourished in utero develop physical changes in their pancreas and other organs, which in later life cause a decreased ability to cope with excess calories and so these people become overweight and develop NIDDM. This ªthrifty phenotypeº hypothesis could also account for these racial groups being particularly prone to NIDDM in the face of westernization. 8.11.3.2 Prevention of NIDDM 8.11.3.2.1 Primary prevention There have been several studies testing the possibility of primary prevention of NIDDM using either pharmaceutical agents or behavioral methods (Erikksom & Lindegarde, 1991; Jarret, et al, 1979; Keen, Jarret, & McCartney, 1982; Knowler, Sartor, & Schersten, 1987; Sartor, Schersten, Carlstrom, Melander, & Persson, 1980). These have given somewhat contradictory results. However, Pan et al. (1994) reported the results of a randomized controlled trial of diet and exercise alone, or in combination, suggesting that all of these interventions reduced the rate of progression to NIDDM in people with impaired glucose tolerance in mainland China. In the light of these findings, a large multicenter primary prevention trial is being planned in the USA. The interventions are likely to include hypoglycemic drugs and/or behavioral methods aimed at the reduction of obesity and the promotion of exercise. The challenges of designing such a trial are considerable as potential recruits are likely to have preferences for drug or lifestyle intervention which will make a simple randomized controlled trial design inappropriate (Bradley, 1993). 8.11.3.2.2 Secondary prevention The secondary prevention of NIDDM is under investigation by the UK Prospective

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Diabetes Study Group (UKPDS) who are investigating the effects of early treatment regimens for NIDDM (UKPDS VIII, 1991). 8.11.3.2.3 Tertiary prevention Tertiary prevention of NIDDM involves the detection and treatment of complications of NIDDM, and the reduction of associated risk factors. Retinopathy (American Diabetes Association, 1992), neuropathy, and early signs of nephropathy (Viberti, Walker, & Pinto, 1992) can be detected by annual screening. Retinopathy can usually be treated effectively by laser therapy to prevent progression to blindness if detected in the early stages (Diabetic Retinopathy Study Group, 1981). Treatment of established neuropathy has been described by the St. Vincent Guidelines as ªunsatisfactoryº (Krans, Porta, Keen, & Staehr Johansen, 1995), though there is evidence from the DCCT that improved blood glucose control reduces risk of nerve damage (DCCT Research Group, 1993). There has been considerable interest in the possibilities of using drugs, particularly aldose reductase inhibitors, as neuropathy prevention therapy, though their value is far from clear (Krans et al., 1995). The St. Vincent Guidelines suggest that the best hope for preventing the development of neuropathic foot problems is through the education of patients and professionals and the organization of foot care services (Krans et al.). Incipient nephropathy can be detected by testing the urine for small amounts of albumin (microalbuminuria), and at this stage the process is potentially reversible by improved management of blood pressure and metabolic control. Avoidance of smoking (Mulhauser, 1990) and reduction of any modifiable risk factors for cardiovascular disease is particularly important for people with NIDDM, because of their elevated risk of myocardial infarction and stroke. As with IDDM, psychological stress may trigger the manifestation of symptoms in NIDDM, probably by a similar mechanism (Bradley, 1988; Clayer et al., 1985). Evidence for a causal role of stress in initial onset of the pathological process is again less clear. Mechanisms by which stressful events may play a causal role will vary depending on the kind of NIDDM where, unlike IDDM, there is not always a reduction in insulin production. Indeed in individuals with NIDDM who are not overweight, insulin resistance may be involved where insulin production may increase as its effectiveness decreases. There is some evidence to suggest that stressful events may be causal in the onset of insulin resistance with stressinduced increases in adrenaline and cortisol

secretion reducing the effectiveness of an individual's insulin (Rizza, Mandarino, & Gerich, 1982; Smith, 1984). If repeated or prolonged stressful events are experienced, insulin resistance over a period of months or years may result in excessive compensatory insulin production and, eventually, to exhaustion of pancreatic islet cells and manifestation of diabetes.

8.11.4 IMPACT OF THE CONDITION ACROSS THE LIFE SPAN ON PERSON AND FAMILY With increasing knowledge of the familial risks of diabetes, diabetes may have a psychological impact on the outlook on life of an atrisk individual well before onset or without the actual onset necessarily occurring. People with diabetes may be concerned about the possibilities of onset of diabetes in their children. Indeed, the fact that a proportion of parents of at-risk children are prepared to enter them in clinical trials of the use of daily insulin injections in the hope of preventing diabetes onset (Keller et al, 1993) provides an indication of the level of concern and lengths to which some are prepared to go in order to reduce the risk of diabetes onset. When diabetes is diagnosed, the demands of diabetes and its treatment vary considerably with the type of diabetes (IDDM usually being more demanding in terms of insulin treatment required and the increased need for monitoring of blood glucose levels). Within any one type of diabetes there is considerable individual variation in the effort needed and difficulty experienced in achieving blood glucose levels which approximate normoglycemia. The need to manage diabetes can add to the psychological demands of meeting the commonly experienced challenges throughout the lifecycle, such as leaving home, marriage, and pregnancy. Pregnancy, and preparing for pregnancy, are especially demanding times for women with diabetes when the need for normoglycemia is emphasized as essential for the health of the baby and recommended prior to conception through to birth. The success which many women achieve in obtaining near-normal blood glucose levels at this time is sometimes attributed by their physicians to the hormonal changes of pregnancy rather than to the efforts of the woman herself. Such attributions can be demotivating and depressing. The challenges of a first pregnancy are, however, dwarfed by the challenges of a second pregnancy where the needs of the first child are often incompatible with the needs of the developing second child.

Psychological Aspects of Symptoms Pregnant women with diabetes attempting to achieve normoglycemia are particularly prone to hypoglycemia and this risk carries new dangers when the pregnant woman is also in sole charge of a young child. Fear of hypoglycemia, a concern to most people with insulinrequiring diabetes (Irvine, Cox, & GonderFrederick, 1994), is likely to be heightened in pregnant women, especially those with young dependent children. Many people with insulin-requiring diabetes are sufficiently fearful of hypoglycemic reactions to avoid tight control of blood glucose levels and the associated increase in risk of hypoglycemia, especially if their warning signs of hypoglycemia are unreliable (see Sections 8.11.5. and 8.11.7.1). Fear of hypoglycemia may lead individuals to aim for higher blood glucose levels which increase their risk of long-term complications. Others, anxious to reduce their risks of other complications may be experiencing numerous, potentially dangerous, hypoglycemic episodes. When NIDDM patients are unable to achieve adequate diabetes control with tablets and diet, it is usually recommended that insulin be introduced. Indeed the prospect of insulin injections is often used by doctors as a stick to motivate greater dietary efforts and more reliable use of sulfonylurea tablets. As a result, the need for insulin may be taken as a sign of failure or a sign of progression from ªmildº to increasingly ªsevereº diabetes. Many patients also fear the process of injection, prior to the experience. In practice, the injections are usually found to be an obstacle soon overcome and incorporated into daily life with little difficulty. Injections allow greater flexibility of timing and content of meals as well as improved blood glucose control. Improved satisfaction with treatment following changeover from tablets to insulin has been found in several studies (Jennings et al., 1991; Taylor, Foster, KyneGrzebalski, & Vanderpump, 1994). Such findings could be used by health professionals to inspire their patients who are reluctant to change. Interestingly, the aspect of quality of life widely felt by people with diabetes to be impaired by their diabetes and rated as very important, is enjoyment of food (Bradley, Todd, Gorton, Plowright, & Symonds, 1995). After decades of attempting to persuade patients to modify the timing and content of their food intake to fit in with fixed insulin doses, and to use food manipulation to compensate for changes in energy expenditure, there is growing recognition that a more rewarding approach is to manipulate insulin doses to fit in with food and other lifestyle factors (Howorka, 1996).

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8.11.5 PSYCHOLOGICAL ASPECTS OF SYMPTOMS Individual variation in the nature and extent of symptoms of hypoglycemia is considerable. Symptoms may include autonomic symptoms such as irritability or anxiety, shaking, or sweating associated with adrenaline released in response to the falling blood glucose level. Symptoms may also include neuroglycopenic symptoms such as loss of concentration or memory loss, due to the shortage of glucose in the brain (Deary, Hepburn, Macleod, & Frier, 1993). Hunger is also a common, though by no means universal symptom. Individuals prone to hypoglycemia include anyone taking insulin and individuals taking certain kinds of oral hypoglycemic agent (particularly sulfonylureas). Individuals usually come to recognize the idiosyncratic but fairly reliable symptoms which for them herald the onset of hypoglycemia, and learn to take action to raise the blood glucose levels before they are rendered incapable of doing so by increasingly severe symptoms which impair rational action and precede the unconscious state of hypoglycemic coma. However, some individuals lose the ability to recognize the symptoms of hypoglycemia and become highly vulnerable to severe hypoglycemia as a result. Loss of warning of hypoglycemia, or hypoglycemia unawareness, may result from autonomic neuropathy, one of the microvascular complications of diabetes, which becomes increasingly common with duration of diabetes of 15 or more years. Damage to the autonomic nervous system impairs adrenal responses to low blood glucose levels. In the absence of adrenal symptoms, neuroglycopenic symptoms may not be noticed until the cognitive effects are too debilitating to take action to raise the blood glucose levels. However, onset of hypoglycemic unawareness is not always associated with autonomic neuropathy and there has been much concern among people with diabetes, clinicians, and researchers to identify the causes of loss of warning with a view to preventing this loss or restoring awareness. It has commonly been assumed that hypoglycemic unawareness develops when symptoms of hypoglycemia occur below the level of blood glucose at which cognitive impairment begins. It is also widely assumed that the detection of hypoglycemia is primarily dependent on autonomic symptoms. However, Cox, Gonder-Frederick, Anderson et al. (1994) have argued that neuroglycopenic symptoms, such as difficulty in concentrating and lack of coordination, are as prevalent as autonomic symptoms

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and occur at similar levels of blood glucose. Furthermore, people with IDDM have reported using neuroglycopenic symptoms to recognize hypoglycemia, sometimes in preference to autonomic symptoms. Cox et al. also cited evidence to suggest that an episode of hypoglycemia leads to a reduction in strength of autonomic but not neuroglycopenic symptoms associated with any subsequent hypoglycemia within 24 hours. In line with these findings are reports from elsewhere (Cranston, Lomas, Maran, Macdonald, & Amiel, 1994) that neuroglycopenic symptoms provided earlier warning of impending hypoglycemia than autonomic symptoms and may indeed be more useful and more reliable cues to low blood glucose than has generally been assumed. A Blood Glucose Awareness Training program has been developed (Cox, Gonder-Frederick, Julian, & Clarke, 1992) which has been used successfully to regain lost awareness of hypoglycemia, and Amiel's research group at the University of London (Cranston et al., 1994) and others (Fanelli et al., 1993) have also reported success using more traditional medical approaches. These interventional approaches are reviewed in Section 8.11.7.1. In the late 1980s there was a nationwide move in the UK to switch from animal insulins extracted from cattle and pigs to the genetically engineered ªhumanº insulin. Most clinicians appear to have assumed that the changeover would have little effect on blood glucose levels. However, many people with insulin-treated diabetes were profoundly upset by the changeover as indicated by the influx of letters to the British Diabetic Association (BDA; Posner, 1992). Problems of rapid onset of severe hypoglycemia occurring without warning were reported, some with devastating and even fatal consequences. Although undoubtedly some of the problems were coincidental to the changeover to human insulin, it is by no means clear that all the problems would have occurred anyway (Alexander, 1993). The problems were further exacerbated by an unwillingness of some doctors to accept the possibility that human insulin may have caused the problems, and their refusal to accede to their patientsº requests to change back to animal insulin. Many patients continue to suffer from the aftermath of the changeover to human insulin, since new developments in insulin delivery systems are usually only developed for use with human insulin and thus are not available to those who changed back to animal insulins. The BDA continues to campaign for the provision of animal-insulin alternatives to the now standard human-insulin cartridges used in pen-injector devices, so that patients using animal insulins may also benefit

from the convenience of using these devices (North, 1991). A major reason for anxiety about hypoglycemia is the increasing concern that it may lead to chronic forms of cognitive dysfunction. It has long been recognized that severe hypoglycemia involving coma can cause chronic impairments of cognitive function. Attention has been directed, however, to the chronic effects of less severe, but recurrent hypoglycemia (Gold et al., 1994). It is difficult to demonstrate a causal association but the available evidence (including uncontrolled case reports and retrospective studies) does suggest that repeated and severe hypoglycemia may lead to chronic cognitive dysfunction. Ryan (1994) has provided a useful overview of work assessing cognitive impairments related to hypo- and hyperglycemia which assesses the pros and cons of various measures of cognitive function in determining the nature and extent of cognitive impairments associated with different levels of blood glucose. In contrast to the marked and troublesome nature of symptoms of hypoglycemia, hyperglycemia is quite often asymptomatic and this in itself creates challenges. Indeed, some individuals who have adapted to raised blood glucose levels feel uncomfortable when initially reducing their blood glucose levels. However, adaptation to the experience of blood glucose levels closer to normal levels soon follows. Resistance to tightening control of blood glucose levels may be reduced if such patients appreciate that any discomfort is likely to be temporary. Most of the early signs of chronic complications of diabetes are also asymptomatic. High blood pressure, microalbuminuria indicative of early signs of kidney problems, and early signs of retinal damage are usually, if not always, without symptoms, and require medical screening to allow for early diagnosis and treatment. Peripheral neuropathy causes numbness in the extremities and a real risk that damage to the feet will go unnoticed. Infections and ulcers, once developed, can be difficult to clear up in the face of circulatory problems which usually accompany the neuropathy and may lead to gangrene and the subsequent need for amputation. These serious problems depend for their solution on patient education, vigilant self-care, and rapid access to skilled chiropody and medical attention when minor damage to the feet is first noticed. 8.11.6 SPECIFIC ISSUES OF ADHERENCE Adherence, or compliance, has been defined as the extent to which a person's behavior coincides with health advice (Haynes, Wang,

Specific Issues of Adherence Gomes, 1987). The concept implies that specific recommendations can be made which, if followed, are likely to lead to health benefits. Certainly, the measurement of adherence requires that the recommendations have to be specified, and then the extent to which those recommendations have been implemented needs to be assessed. Such measurement may be practical if considering whether or not a patient had been adherent in taking a course of antibiotics. In this case, the recommendations can be specified in detail and the behavior monitored in various ways to establish the extent of match between recommendations and behavior. Where diabetes is concerned, potentially effective recommendations are likely to be complex, to vary from patient to patient and, for individual patients, to vary from day to day. ªSimpleº recommendations to take the same amount and types of insulin at the same time each day and eat the same amount and type of food at the same times to balance that insulin while somehow keeping energy expenditure constant are unlikely to be effective in achieving adequate diabetes control. If such recommendations did lead to improved metabolic control they would be likely to cause serious damage to patientsº psychological well-being and quality of life. More complex regimens involve balancing the various manipulable components in the equation (e.g., timing and dose of the next injection of insulin, timing and content of the next meal or snack, and voluntary exercise) to deal with those components of the equation which are either not immediately controlable or cannot be controlled without undesirable costs (e.g., family or work commitments, action of the previous insulin injection). Such regimens require sufficient education and understanding to allow problem-solving appropriate to the occasions that arise and cannot be specified in detail in advance. ªAdherenceº under these circumstances is an unmeasureable and unsuitable concept. Some authors have referred to measures of diabetes control as ªproxy measures of adherence.º Such a practice is highly misleading as it assumes that if the patient had followed whatever recommendations had been made then the diabetes control would be maximal. Use of HbA1 or other measures of diabetes control as a measure of adherence denies the possibility that the recommendations made by the health professional may have been inadequate to the task of controling that individual's diabetes. There is no good reason to attribute all departures from optimal outcomes to patient ªnonadherenceº and there are many good reasons for not doing so. In particular, it is depressing and discouraging for patients who

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are trying to deal with the demands of diabetes management to have poor outcomes attributed to their actions (or lack of them), particularly when they have been struggling to follow recommendations which were not adequate to the task. The common tendency to take credit for successes and blame other factors for failure is one that affects health professionals as much as other groups (Gamsu & Bradley, 1987; Gillespie & Bradley, 1988) and it undoubtedly serves to protect their own self-esteem. However, such an ego-defensive stance is not only discouraging for patients and their families but also serves to reduce the perceived need for interventions to improve the organization and functioning of the health-care system (Bradley, 1989). It would be more supportive of patientsº self-esteem to recognize patientsº efforts and achievements and to adopt a collaborative problem-solving approach when outcomes need to be improved. There are many different ways of managing diabetes. If the patient is not able to achieve satisfactory diabetes control with one approach, it may be that some aspect of the approach is deficient in some way. The education provided for the patient may not have resulted in the necessary knowledge and understanding required. Barriers to care may be obstructing application of adequate education and may include social pressures and competing demands, fatalistic or unrealistically optimistic beliefs about outcomes of diabetes and the risk of complications (Glasgow, 1994; Lewis & Bradley, 1994). Knowledge, understanding, and beliefs may all be compatible with self-care but the recommendations made may create conflicts with other priorities in the individual's life which may best be dealt with by changing the recommendations made without necessarily compromising the level of diabetes control that can be achieved. Thus, in the complex field of diabetes management, the notion of self-care behavior is far more useful than the concept of ªadherence.º It can be useful and constructive to investigate self-care behavior and to explore the reasons for actions taken and consider the extent to which the actions were likely to result in the intended outcomes (and avoid unwanted outcomes) given the circumstances concerned. While it is neither necessary nor helpful to ask whether the actions were ªadherentº it can be useful to assess self-care activities and efforts have been made to do so (Toobert & Glasgow, 1994). A useful review of the complexities in attempting to apply the concept of ªcomplianceº to diabetes management is provided by Glasgow (1991).

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8.11.7 PSYCHOLOGICAL INTERVENTIONS IN THE MANAGEMENT OF DIABETES 8.11.7.1 Blood Glucose Awareness Training and Other Approaches to Regaining Hypoglycemia Awareness A program has been developed at the University of Virginia of Blood Glucose Awareness Training (BGAT) to train individuals with diabetes to recognize their level of blood glucose. The BGAT program and associated manual (Cox, et al., 1992) is based on blood glucose monitoring together with monitoring of physical symptoms, mood, and environmental cues associated with each blood glucose reading in order to identify the symptoms and cues which predict high blood glucose levels and those which predict low blood glucose levels for each individual. An error grid analysis was developed to identify those errors made in estimating blood glucose which matter clinically. Efforts are focused on reducing the errors that would be clinically important, such as failing to detect extreme blood glucose levels, or mistaking an acceptable blood glucose level for one that is too high or too low. BGAT has been shown to be effective in teaching individuals with IDDM to improve their accuracy in recognizing blood glucose levels. Associated improvements in diabetes control have also been found with improved glycosylated hemoglobin results in BGAT patients compared with untrained control patients (Cox et al., 1991). Long-term followup has shown that participants in the BGAT training program had had fewer episodes of severe hypoglycemia and fewer car crashes than controls at five-year follow-up (Cox, GonderFrederick, Julian, & Clarke, 1994). More recently, BGAT-2 has been developed to increase sensitivity to low blood glucose levels, and benefits have included fewer motoring offenses and car accidents, and fewer nocturnal episodes of severe hypoglycemia (Cox, GonderFrederick, Kovatchev, et al., 1995). A multicenter trial of BGAT-2 used by clinicians other than those in the original research team developing the program, suggested that BGAT2 offers a useful strategy for treating the disabling problem of hypoglycemia unawareness. BGAT-2 improved detection of low blood glucose levels in individuals who had reported impaired hypoglycemia awareness on recruitment to the study (Cox, Gonder-Frederick, Polonsky, et al., 1995). There is increasing evidence that patients who have lost their warning symptoms of hypoglycemia can learn to attend to new signs of hypoglycemia which

may be physical, cognitive, or mood symptoms, or may be circumstantial indicators that hypoglycemia is likely (e.g., running for a bus when late for a meal). Another approach to treating loss of awareness of hypoglycemia has been to avoid hypoglycemia by diet review, advice about exercise, and redistribution of insulin in patients with hypoglycemic unawareness (Cranston, et al., 1994; Fanelli et al., 1993). After at least three clear weeks without hypoglycemia, patients became aware of symptoms of hypoglycemia. Adrenaline responses were more marked at higher blood glucose levels than was previously the case, and at levels higher than those at which cognitive impairment was indicated by a reaction-time task (Cranston et al.). It has been suggested (Bradley & Gamsu, 1995) that, in attempting to avoid hypoglycemia, participants in such studies may learn to become more sensitive to neuroglycopenic symptoms at higher levels of blood glucose than they were before. Thus, the intervention to avoid hypoglycemia may act as an indirect form of BGAT. It is also possible that the success of BGAT in increasing awareness of hypoglycemic symptoms may in part be due to a reduction in occurrence of hypoglycemia. 8.11.7.2 Identification of Stress Reactivity 8.11.7.2.1 Mechanisms involved in stress and diabetes control Stress may affect metabolic control in diabetes in at least two ways (Barglow, Hatcher, Edidin, & Sloan-Rossiter, 1984). (i) A direct psychophysiological effect via sympathetic and pituitary activity which results in the elevation of catabolic hormone levels and the suppression of anabolic hormones. In people with diabetes, this may result in increased blood glucose levels, although, for a small minority, less readily understood decreases in blood glucose levels result. (ii) A behavioral mechanism whereby stress leads to behavioral changes capable of disrupting self-care behavior (Barglow et al., 1984). For example, time urgency may make blood glucose monitoring and well-balanced meals impractical leading to disruptions in metabolic control. Glycemic fluctuations themselves can contribute to the behavioral changes via impaired cognitive function (Holmes, Hayford, Gonzalez, & Weydert, 1983; Ryan, 1994; Wang et al., 1993), which, for example, may cause poor self-care responses to feedback from blood glucose monitoring. A two-way causal link between stress and diabetes control has been suggested (Bradley, 1988) whereby life

Psychological Interventions in the Management of Diabetes events cause disruption in diabetes control which in turn causes increases in the number of life events. 8.11.7.2.2 Acute stress and blood glucose reactivity Several seemingly well-controlled acute stress studies conducted in the 1980s reported no significant changes in blood glucose control in response to potential stressors such as mental arithmetic and public speaking (Edwards & Yates, 1985; Kemmer et al., 1986; Naliboff, Cohen, & Sowers, 1985). However, this work overlooked the possibility that the commonly observed individual differences in response to stress might be real and interesting, and not a reflection of methodological inadequacies (Bradley, 1988). Studies of experimental stress have examined physiological mechanisms hypothesized to mediate the relationship between psychological stress and blood glucose control. There is evidence that reduced blood flow to the insulin injection site (Hildebrandt, Mehlsen, Sestoft, & Nielson, 1985) and insulin resistance over several hours (Moberg, Kollind, Lins, & Adamson, 1994) may cause increased blood glucose levels in individuals with IDDM in response to acute laboratory stressors. It has been noted elsewhere (Bradley & Gamsu, 1995) that laboratory studies with a short time frame are likely to underestimate such long-lasting effects of stress on blood glucose. The effects of a laboratory stressor (Stroop test) on changes in blood flow at the insulin injection site have been studied in IDDM patients (Greenhalgh, Jones, Jackson, Smith, & Yudkin, 1992). The results showed that mean levels of blood glucose rose in some patients and fell in others in response to acute stress, and that these changes were largely explicable in terms of changes in free insulin levels, which in turn were partially mediated by changes in injection-site blood flow. The authors proposed that vasodilation at the subcutaneous insulin injection site may in some cases lead to a paradoxical hypoglycemic effect during acute stress via an increased rate of absorption of insulin, an effect which will be counterbalanced to a greater or lesser degree by increases in counter-regulatory hormones. In other individuals, absorption of insulin may fall during stress and contribute to hyperglycemia. Again these findings underline the importance of looking at individual differences. Idiosyncratic blood glucose responses which were reliable across a 12-week time period within individuals with IDDM have been reported in response to caffeine and to the competitive playing of a video game (Carter,

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Gonder-Frederick, Cox, Clarke, & Scott, 1985). A more recent study (Gonder-Frederick, Carter, Cox, & Clarke, 1990) has reported similar results. Such studies suggest that the inconsistent findings of previous research may have resulted because of differences in the stress-responsiveness of the individual patients recruited. 8.11.7.2.3 Life stress and blood glucose reactivity Studies of major life events and diabetes control have suggested that increased life events are associated with raised blood glucose levels (Barglow et al., 1994; Chase & Jackson, 1981). However, within-subject variations in stress and in blood glucose values would have been obscured by the methods used which correlated aggregated retrospective reports of life events with GHb or HbAl measures of averaged blood glucose, thereby oversimplifying the picture. Research has begun to look at the relationship between minor daily events and diabetes control (using serial blood glucose measurements) in order to overcome the methodological limitations of the earlier studies of relationships between life events and blood glucose levels. Investigations of daily stressful events are providing more interpretable results with studies reflecting individual differences in response to stress that were also seen in some of the laboratory based acute stress studies. Although the overall picture suggests that increased daily stress correlates with increased blood glucose levels in IDDM (Hanson & Pichert, 1986) and in NIDDM (Goetsch, Abel, & Pope, 1994), examination of individual's blood glucose response to stress indicates that some people display stress-reactivity and some people do not. Halford, Cuddihy, and Mortimer (1990) found that approximately half the sample of 15 IDDM participants had significant associations between stress and blood glucose levels, and that this association was independent of the effects of diet and exercise self-management. Within those people who do display stressreactivity, most show an increase in blood glucose while a few show a decrease in blood glucose (Aikens, Wallander, Bell & McNorton, 1994; Riazi, Pickup, & Bradley, 1996). Aikens et al. studied twenty-five women with IDDM who monitored daily stress and blood glucose for 30 consecutive days. Blood glucose was found to be higher on high-stress days than on low-stress days, with eight of the 25 subjects showing significant positive associations between stress and same-day blood glucose. Stress showed little relation to next-day blood glucose, although two subjects showed associations (one

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positive and one negative). In a study of 54 men and women with IDDM which measured daily stress and blood glucose levels over a three week period (Riazi et al., 1996), individual differences were marked in the magnitude, direction, and duration of blood glucose stress reactivity. Those with higher levels of HbA1, indicating poorer control of diabetes, were more stressreactive than those with lower levels of HbA1. These findings show the individual differences in response to stress that can be seen in laboratory-based acute stress studies which investigate individual differences but are not seen in studies which limited the analysis to group differences or in studies of life events using average measures of blood glucose. Although increases in blood glucose levels are the most common form of stress reactivity, decreases are not uncommon and there is a need for individuals to discover empirically how their own blood glucose levels respond to different kinds of stress in order to take appropriate action to prevent or correct disruptions in diabetes control.

8.11.7.3 Stress Management Training The overly simple model of life stress causing raised blood glucose levels has inspired the use of stress management training, particularly relaxation training, as an aid to diabetes control. Relaxation is thought to decrease adrenocortical activity (Jevning, Wilson, & Davidson, 1978; DeGood & Redgate, 1982) as well as circulating levels of catecholamines (Mathew, Ho, Kralik, Taylor, & Claghorn, 1980; Mathew, Ho, Kralik, Taylor, Semchuk, et al., 1980) and hence is expected to prevent stress-induced increases in blood glucose levels. Research supports the view that stress management techniques may be valuable to aid diabetes management for some people but not with others. It has been suggested (Bradley, 1994a) that relaxation techniques are unlikely to do harm except when blood glucose is already tightly controlled (Seeburg & DeBoer, 1980) and the insulin dosage is not reduced appropriately to balance the effects of relaxation on insulin requirements (which may well be reduced) and/or when used at a time when blood glucose is already low (5 4 mmol/L) and there is a risk of hypoglycemia. It is important to take the precaution of measuring blood glucose immediately before all relaxation training or practice sessions. Twenty minutes of relaxation can lead to a drop in blood glucose as great as 3 mmol/L. Such a substantial fall is only likely if blood glucose is well above the normal range of 4±6 mmol/L to start with and probably results

from a suppression of catecholamine secretion. It is recommended that relaxation training should not be conducted at blood glucose levels below 4 mmol/L because of the risk of hypoglycemia. Relaxation training might be continued if the anticipated reduction in blood glucose were counteracted with pretraining intake of slow release carbohydrate (e.g., an apple). A further precaution of measuring the blood glucose after a relaxation session, before leaving the therapist's office, is also recommended to avoid the risk of hypoglycemia while traveling home. Several studies have reported some success with improvements in diabetes control following relaxation training (usually involving electromyograph (EMG) biofeedback) in NIDDM and IDDM patients (McGrady, Bailey, & Good, 1991; McGrady & Gerstenmaier, 1990; Rosenbaum, 1983; Surwit, Feinglos, & Hasted, 1983). There is evidence to suggest that relaxation training is least useful for those subjects whose glycemic control was good to start with and most useful when used by subjects who not only had poor control of their diabetes but who felt that stress disrupted their diabetes control and who were currently experiencing stressful events (Bradley, Moses, Gamsu, Knight, & Ward, 1985; Lammers, Naliboff, & Straatmeyer, 1984). In contrast, Feinglos, Hastedt, and Surwit (1987) found no significant effect of relaxation training in people with poorly controlled IDDM who reported stress-induced hyperglycemia. After six weeks in which the trial group practiced relaxation techniques at home, measures of glucose tolerance, GHb levels (which reflect blood glucose levels over 6±8 weeks), and insulin requirements did not differ between relaxation and control groups. Unfortunately, the authors did not provide any information about the variability of the individual patients. Lane, McCaskill, Ross, Feinglos, and Surwit (1993) investigated 38 people with NIDDM who were treated with intensive conventional diabetes therapy (including diabetes education and dietary interventions) with half of the subjects assigned at random to receive biofeedback-assisted relaxation training. Both groups demonstrated significant improvements in GHb level after eight weeks, but not in glucose tolerance. No added benefit of relaxation training was seen on either measure though it was found that those subjects who showed improvements in glucose tolerance after pretreatment with the anxiolytic drug alprazolam also showed improvements in glucose tolerance after relaxation training. It was also found that subjects who responded best to relaxation training were those scoring

Psychological Interventions in the Management of Diabetes higher on measures of trait anxiety. Overall, the authors concluded that relaxation may be useful for the treatment of neurotic, anxious, and autonomically reactive individuals but may be ineffective for other patients. Lack of selection of patients likely to benefit from relaxation training may have been responsible for the nonsignificant finding of relaxation of the group as a whole. What is emerging from the studies of relaxation training on people with diabetes is that it is most useful for those who show stressrelated disturbance of blood glucose control or for those who are anxious and autonomically reactive. The degree to which these groups overlap is unclear though there is some evidence to suggest that the groups may be separate. Selfreported anxiety did not correlate with bloodglucose reactivity to stress in the studies of Riazi et al. (1996). Assessment of subjectsº stressreactivity before embarking on relaxation training in future studies will help in the identification of patients most likely to benefit from relaxation training. Most studies have incorporated biofeedback into the relaxation training. Relaxation training on its own would be more practical and less costly. There is limited evidence that biofeedback is an unnecessary addition for most people (Bradley et al., 1985). Evaluation of low-technology forms of relaxation training with patients shown to be stress reactive would be a useful next step.

8.11.7.4 Monitoring of Psychological Outcomes and Processes Just as measurement of blood glucose is essential to the task of achieving and maintaining tight control of diabetes, the measurement of psychological outcomes is central to protecting and improving the quality of life of people with diabetes. However, while measurement of blood glucose is standard practice in diabetes management and research, measurement of psychological outcomes is common only in research settings. Quality of life measurements are increasingly recognized as essential parameters in clinical trials evaluating new treatments for diabetes and improvements in aspects of quality of life are often among the primary outcomes to be investigated. Treatments, including insulins and insulin delivery systems, are being developed to be more convenient and flexible and compatible with quality of life. There is growing recognition that the desired biomedical outcomes are more likely to follow if treatment regimens are convenient and flexible and can be integrated into individualsº lives without impairing the quality of life. Although

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measurement of psychological outcomes in routine clinical practice is far from standard practice, several initiatives are encouraging such developments. The St. Vincent Declaration Action Programme for diabetes care in Europe has recommended the routine measurement of psychological well-being and patientsº satisfaction with treatment in the monitoring of diabetes management (Bradley & Gamsu, 1994; Krans et al., 1995), and many national initiatives are underway, including a national study of monitoring of diabetes care in the UK (Wilson et al., 1993), and an initiative in The Netherlands to evaluate the effects of routine monitoring of the psychological outcomes recommended by the St. Vincent Guidelines (F.J. Snoek and colleagues, personal communication, 1996). 8.11.7.4.1 Measurement of psychological wellbeing and patient satisfaction The measures recommended in the St. Vincent Guidelines are the Well-being Questionnaire (Bradley, 1994b; Bradley & Lewis, 1990) and the Diabetes Treatment Satisfaction Questionnaire (DTSQ; Bradley, 1994c) which were designed and developed specifically for people with diabetes. The Well-being Questionnaire was first designed in the early 1980s for diabetes clinical trials because it was recognized that generic instruments to measure depression or anxiety are unsuitable for people with diabetes. Measures such as the Beck Depression Inventory (Beck, Ward, Mendelson, Mock, & Erbaugh, 1961), developed for the general population, include items concerned with somatic symptoms which may well be indicative of depression in the population as a whole but in a diabetic sample are more likely to result from inadequate blood glucose control. For example, symptoms of fatigue, appetite disturbances, weight loss, sleep disturbances, irritability, and loss of sexual interest can all be symptoms of high blood glucose levels. At around the same time and for the same reasons, Zigmond and Snaith (1983) developed the Hospital Anxiety and Depression (HAD) scale to focus on cognitive symptoms and avoid somatic symptoms. The HAD was intended to be appropriate for use with hospital patients and, encouragingly, work with diabetic populations has confirmed the original factor structure of the HAD (McColl et al., 1995). The Well-being Questionnaire has subscales to measure depression and anxiety which are similar to those of the HAD but, unlike the HAD, also has subscales to measure energy and positive well-being. These additional subscales are more sensitive to change than

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depression and anxiety (Bradley, 1994b) and the Well-being Questionnaire is likely to be more sensitive than the HAD to positive benefits of new treatments for diabetes. If only depression and anxiety scales are used, the optimal state measurable is an absence of depression or anxiety and floor effects occur if, as usually happens, in diabetes research, patients are not depressed or anxious when baseline measures are taken. WHO has recommended wider use of the Well-being Questionnaire with other patient groups in addition to those with diabetes, in a context of continuing development (WHO, 1993, 1995). As with the HAD scale, care is needed when using the instrument with a different population of patients as, despite efforts to reduce confounding of depression scores with symptoms of poorly controlled diabetes, different illnesses may influence responses in different ways. Efforts to improve and evaluate translations of the Well-being Questionnaire in European and other languages have been associated with the widespread use of the instrument in multinational clinical trials and in the St. Vincent European monitoring initiative and work is underway to meet the demand for a shortened version of the 22-item Well-being Questionnaire which will facilitate use of the instrument in routine clinical practice (Bradley, 1996a). The DTSQ (Bradley, 1994c; Bradley & Gamsu, 1994; Bradley & Lewis, 1990; Krans et al., 1995) is a single-page instrument that has been used widely in clinical trials and is valued for its sensitivity to change in response to alterations to diabetes treatment regimens. A broader, though less detailed, single-page measure of satisfaction with the diabetes clinic service (The Diabetes Clinic Satisfaction Questionnaire [DCSQ]) has since been developed to meet the need to audit patientsº satisfaction with the service as a whole as well as, more specifically, with their particular treatment regimen (Wilson et al., 1993). The DCSQ is designed to identify sources of dissatisfaction so that efforts to improve the service can be well informed. This instrument is being used in the UK national study of audit of diabetes care steered by the Diabetes Information Managment and Audit Committee of the British Diabetic Association (Wilson et al.). The use of diabetes-specific instruments such as the Well-being Questionnaire, DTSQ, and DCSQ allows for instruments which focus on issues of particular relevance to the diabetic population. The instruments can be short because issues of little concern in diabetes can be excluded. Although generic instruments are less likely than diabetes-specific instruments to

be sensitive to changes following changes in treatment for diabetes, there is some demand for generic instruments which comes particularly from health service managers and health economists who want to compare outcomes in different patient groups. The reader is referred elsewhere for a review which considers the use of generic measures with diabetic populations (Bradley, 1996b). 8.11.7.4.2 Measurement of quality of life The phrase ªquality of life measuresº is often indiscriminately used to cover health status measures, well-being and satisfaction measures, and even measures of self-reported symptoms as well as measures of how good or bad life is felt to be. Focusing here on the latter group of measures, an important distinction can be made between individualized measures and those which are not tailored to the individual. With most measures of quality of life, diabetes-specific or generic, the aspects of life deemed to be relevant to quality of life are specified by the designers of the questionnaire. Although the choice of aspects of life may have been informed by prior research with samples of people with diabetes and by input from health professionals involved in diabetes care, there is no scope for the individual respondent to decide if any one particular aspect of life asked about is applicable to them and, if it is, whether it is important to their quality of life. The Diabetes Quality of Life (DQOL) measure used in the Diabetes Control and Complications Trial includes 56 items which all receive equal weight regardless of their relative importance to the individual (Jacobson & the DCCT Research Group, 1994). It has been suggested that the lack of differences reported between DQOL scores of those who intensified their treatment in the trial and those who did not may be attributable to the limitations of the measure rather than to any real lack of impact of intensification of treatment on quality of life (Bradley, 1994d). Thus, an item concerned with immediate and pervasive worries about hypoglycemia which may markedly impair an individual's quality of life will have no more impact on the DQOL total score than an item concerned with satisfaction with time taken to determine blood glucose levels or an item about how often the individual has to explain what it means to have diabetes. The DCCT research group reported that the DQOL total scores showed no impact of intensified treatment on quality of life (DCCT, 1993). This was surprising given the considerable increase in severe hypoglycemia experienced by the intensified treatment group in the DCCT, but not

Psychological Interventions in the Management of Diabetes surprising when the nature of the quality of life measure used is examined. Individualized measures of quality of life ask the individual respondent which domains are important to their quality of life. An increasingly valued measure of individual quality of life is the Schedule for Evaluation of Individual Quality of Life (SEIQoL) interview method (Hickey et al., 1996; McGee, O'Boyle, Hickey, O'Malley, & Joyce, 1991; O'Boyle, McGee, Hickey, O'Malley, & Joyce, 1992). The SEIQoL establishes in interview the domains of life important to a particular individual's quality of life, elicits ratings for each domain from ªas good as it could possibly beº to ªas bad as it could possibly be,º determines weights for each domain using a method of judgment analysis. The philosophy underpinning the SEIQoL has influenced the design of a questionnaire measure for Audit of Diabetes Dependent Quality of Life (ADDQoL) (Bradley, Todd, Gorton, Plowright, & Symonds, 1995; Todd, Bradley, & Symonds, 1993). The ADDQoL includes a series of domains identified in pilot work to be commonly affected by diabetes and its treatment. Working life and family life are two of the standard domains included together with worries about the future, enjoyment of food, and other items more specifically relevant to diabetes. Each domain is first rated for the impact of diabetes on that domain and then rated for the importance of that domain for quality of life. Domain ratings are then multiplied by importance ratings such that a domain which is unimportant will score zero regardless of how much it is affected by diabetes while ratings other than zero for an important domain will receive greater weight. Any domain that is said to be inapplicable is ignored. The weighted ratings of all applicable domains are then summed and divided by the number of applicable domains to give scores which vary from the same maximum (+9) to the same minimum (79) for all individuals. In this way, the ADDQoL, like the SEIQoL, focuses on applicable domains that are important to the particular individual. Unlike the SEIQoL, the ADDQoL is concerned specifically with the effects of diabetes and its treatment on quality of life. The ADDQoL provides a framework which is readily modified to be suitable for use with other patient groups and has been adapted for use with renal patients (Bradley, 1997). There is considerable interest in patient-centered measures of quality of life and although other measures aim to be relevant by ensuring that item design is informed by qualitative work with patients, few instruments are patientcentered in providing opportunities for patients to indicate which items are relevant to them

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personally and which are not and provide their own weightings of importance for each relevant item (Bradley, 1996b; Greenhalgh, 1996). 8.11.7.4.3 Measurement of knowledge, beliefs, and other cognitions Many different measures of knowledge of diabetes were designed and developed in the 1980s but more recently there has been widespread disenchantment with such measures (Glasgow, Toobert, Hampson, & Wilson, 1995). This has resulted in part from the abstract content of some knowledge measures and partly from the inappropriate expectation that knowledge of diabetes will correlate with measures of blood glucose control (Beeney, Dunn, & Welch, 1994). When no correlation is found the validity of the knowledge questionnaire has been questioned. However, there is no logical reason to expect that responses to many of the items on knowledge questionnaires will correlate with blood glucose levels (e.g., items concerned with foot care). In addition, validation of knowledge items is complicated by the fact that patients often acquire considerable knowledge after they develop a problem, thereby leading to counterintuitive associations between knowledge and outcomes in crosssectional surveys. Care and ingenuity is needed to select appropriate methodologies to develop knowledge measures for particular purposes (Bradley, 1995). In the light of continuing evidence of inadequate levels of knowledge, with patients with NIDDM being particularly disadvantaged (Anderson, Hiss, Stepien, Fitzgerald, & Funnel, 1994), the measurement of knowledge and provision of remedial education as required is likely to result in marked improvements in biomedical and psychosocial outcomes of diabetes care. Other measures of psychological processes which can be valuable in understanding difficulties with diabetes management include measures of health beliefs, and perceptions of control, or locus of control, of diabetes. A variety of reliable diabetes-specific measures have been validated for various purposes (Bradley, 1994e; Kohlmann, Schuler, Petrak, Kustner, 1993; Lewis & Bradley, 1994). Measures of health beliefs and, particularly, measures of patientsº attributions or locus of control have proved useful in understanding patients preferences for injection treatments or continuous subcutaneous insulin infusion (CSII) pumps, and in understanding why some patients developed the dangerous acute complication, diabetic ketoacidosis (DKA), during pump use (Bradley, Gamsu, Knight, Boulton, & Ward, 1986; Bradley et al., 1987).

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In a feasibility study involving all insulin treated patients at the Royal Hallamshire Hospital in Sheffield, UK (Knight et al., 1984), patients were offered the choice of CSII pumps, intensified injection treatment, or conventional injection treatment. An illustrated lecture informed patients about the treatments available and patients were told that ªthe evidence suggests that CSII controls blood glucose levels better than injections.º Unfortunately, only with hindsight was it realized that patients needed to know, but had not been told, that the effectiveness of CSII depended on the actions of the individual user and that CSII required at least as much, if not more, thought, effort, and precautions to use it effectively and safely than was needed with injection therapies. Those attracted to CSII tended to be those who were seeking a medical solution for their condition and who had less sense of personal control over their diabetes (as measured by the perceived control of diabetes scales). Sadly, it was those with the strongest sense of medical control and least sense of personal control who did least well with CSII pumps both in terms of blood glucose control at 12 months (Bradley et al., 1987) and occurrence of DKA during the study (Bradley et al., 1986). A massive increase in rates of DKA occurred among CSII users in the first two years of the study, and the only variables to discriminate between those who developed DKA and a matched group of those with no DKA were the psychological variables, perceived control and health beliefs. Although questionnaire measures of health beliefs and cognitions are somewhat cumbersome for clinical use, experience with the tools in a research context and in detailed assessment of individuals presenting with particular problems can be valuable. The concepts underlying the measures can usefully guide clinical interviews seeking to establish sources of difficulty with diabetes management with a view to tailoring the treatment to suit the individual patient and identifying inappropriate beliefs and expectations of treatments which need to be addressed. The Handbook of psychology and diabetes (Bradley, 1994f) provides ready access to most of the questionnaire measures described above and provides reference to yet more measures. Despite the availability of such measures and increasing evidence for their value in clinical as well as research contexts, there is resistance among some clinicians to monitoring psychological outcomes (Barendse, 1995). The unfamiliarity of the tools leads many physicians to feel that they would need training in use of the instruments before they would feel able to use them. There is also concern about how they would deal with cases of depression and anxiety

which may be brought to light as a result of using the questionnaires. These are both understandable concerns which may be dealt with by involvement of psychologists to support use and interpretation of the psychological measures and in helping to deal with the psychological problems identified. Interestingly, one source of resistance to using the instruments was the reported concern that patients would not want to have psychological outcomes considered as part of routine diabetes care though all the available evidence suggests that quite the reverse is the case: people with diabetes and parents of children with diabetes have long complained about the excessive emphasis on their blood glucose levels in diabetes clinics while little attention is paid to the effects of diabetes management on their lifestyle and quality of life. Clinical psychologists have an important role to play in encouraging and supporting diabetes care teams in measuring psychological outcomes and in taking action to protect or improve the psychological outcomes of people with diabetes.

8.11.7.5 Patient Empowerment With diabetes, as much if not more than with other chronic disorders, optimal management can only be achieved by means of complex behavioral changes on the part of the patient. It is not enough for the clinician merely to give instructions. Health professionals are increasingly working towards holistic approaches to treatment, which include an emphasis on providing the education, support, and encouragement to enable patients, where possible, to manage their own diabetes. Indeed, the second edition of the St. Vincent Declaration Action Programme to improve diabetes care in Europe (Krans et al., 1995) now includes specific guidelines to facilitate patient empowerment. The construct of empowerment has been in use in other domains of psychology for some time, and has at times been both ill-defined and misunderstood. In the context of diabetes care, a useful overview of patient empowerment has been provided by Anderson (1995). The ªempowermentº of individual patients is a complex goal. It requires first that patients have a level of authority and responsibility to be able to make decisions and manage their own treatment. Second, it requires that they be willing to accept that responsibility and to achieve the necessary skills and knowledge to make them capable of managing their diabetes. Third, the environment of care needs to be such that policies and practices facilitate self-management of diabetes care. Central to the

Psychological Interventions in the Management of Diabetes achievement of each of these elements is the healthcare professional. They must accept patients as active and responsible self-carers, educate them both in knowledge of diabetes and self-care choices, and facilitate the setting of individual goals of self-care through an assessment of individual preferences. Patently, this becomes even more vital in an age of technologically advanced healthcare systems, where the tendency may be to alienate patients from active participation in their own medical treatment (Stabler, 1993). Whilst numerous accounts of research into patient empowerment may be found, the literature specific to diabetes care is limited, but growing (Anderson, 1995; Anderson, Funnell, Barr, Dedrick, & Davis, 1991; Anderson et al., 1995; Doherty, Hall, James, & Roberts, 1996; Feste, 1992; Kinmonth et al., 1996). In looking to the future for a more widespread adoption of attitudes and practices which facilitate patient empowerment, it is clear that certain barriers need to be overcome. Some patients may be reluctant to accept responsibility for their own diabetes management, and need to be encouraged with the knowledge that they are best placed to make decisions which impact on the day to day running of their lives. They then need access to professional support, education in the knowledge of their condition, self-care skills, and choices available to them. Healthcare professionals may also misunderstand patient empowerment. They may see this as an unethical suggestion that they should abdicate responsibility for care and relinquish clinical control and decision making. At the other end of the spectrum, some may see patient empowerment as a license to divest themselves of the more intractable problems associated with diabetes care. In reality, however, patient empowerment involves active participation of the health professional in the role of facilitator, enabling patients to set individual goals for diabetes management and to achieve optimal outcomes in both medical and psychosocial health. There is early evidence for the success of patient empowerment interventions. Anderson et al. (1995) reported a randomized waiting-list control group trial of patient empowerment education. Despite some problems associated with drop-out rates and the combination of data from randomized and nonrandomized participants for analysis, the results suggested a modest improvement in blood glucose control, along with gains in self-efficacy and attitudes toward diabetes. Greenhalgh, Chowdhury, and Helman (1996) evaluated a patient empowerment model with a sample of British Bangladeshis with diabetes,

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and identified a variety of culturally related factors which may create obstacles to patient empowerment including ignorance about diabetes and available services, poverty, fatalism, and religious convictions. These findings underline the need for individual patient focus in empowerment programs if those programs are to be appropriate to patients needs. Quatromoni et al. (1994) described a study which used focus groups to explore culture-specific information that could be useful in empowerment interventions with Caribbean Latinos with NIDDM. Amongst the issues they identified were feelings of social isolation, little understanding of long-term consequences of diabetes, fatalism regarding the course of the disease, barriers to diet and exercise interventions, skepticism regarding the value of preventive health behaviors, and a clear need for culturally-sensitive health-care provision. (Quatromoni et al., p. 869)

Similarly, the Haida Gwaii Diabetes Project (Herbert, 1996) described an approach which uses community-based research to identify a culturally sensitive approach to diabetes prevention and management. Outcomes suggest an empowerment benefit to individuals with diabetes, their families, and community. Moreover, there were reported benefits to healthcare professionals, in that they also felt empowered to implement diabetes care in ways which were more pertinent to patients. Evidence suggests that patient empowerment offers a promising way forward in diabetes care. It is perhaps worthwhile, however, to sound a cautionary note. Should empowerment interventions fail to show significant benefits in the future, it may be that the interventions themselves have not been adequate to the task, either in that health professionals did not receive adequate training to enable them to move to more participative care, or that the empowerment goals were not focused sufficiently on the cultural or individual needs of patients.

8.11.7.6 Weight Management Weight management is a problem both for people with IDDM and NIDDM in rather different ways. People with IDDM need to balance their carbohydrate intake, insulin, and exercise in order to control their blood glucose levels. Dietary recommendations tend to be less restrictive than was the case in the 1980s though typically patients would be advised to avoid foods containing simple sugars (sweets, cakes,

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sugary drinks, etc.) and foods with a high fat content. Paradoxically, if they develop hypoglycemic symptoms they need to take instantly available glucose to avoid a severe hypoglycemic episode which can lead to coma. The consequent rise in blood glucose may overshoot and result in hyperglycemia. If their carbohydrate intake is too high, an increase in insulin dose will be needed to maintain metabolic control and, as with people who do not have diabetes, carbohydrate excess will lead to weight gain. However, in people with diabetes, crash diets to deal with unwanted weight may result in metabolic chaos and a careful weight reduction program is needed which balances reduced carbohydrate intake and/or increased exercise with reduced insulin doses.

8.11.7.6.1 Eating disorders and withholding of insulin Adolescent girls with IDDM tend to be heavier than matched nondiabetic girls for reasons which are not understood, and are likely to be dieting more intensely in order to control their weight. In cross-sectional and case±control studies (Fairburn, Peveler, Davies, Mann, & Mayou, 1991; Peveler, Fairburn, Boller, & Dunger, 1992), eating disorders have been found to be as prevalent but not more common in young women with IDDM than those without. Nine percent of adolescent girls in the latter study met the diagnostic criteria used for ªeating disorder not otherwise specified.º Other studies have indicated that adolescents and young women with diabetes are at greater risk of eating disorders than those who do not have diabetes (Rodin, Daneman, Johnson, Kenshole, & Garfinkel, 1985; Rosmark et al., 1986). However, care needs to be taken over the methods used to identify eating disorders in people with diabetes. Generic eating disorder self-report assessments, such as the Eating Attitudes Test (EAT) or Eating Disorder Inventory (EDI), are likely to yield different scores from people with diabetes because of the emphasis on diet and dietary restraint in diabetes education. Items such as I ªavoid foods with sugar in themº and ªengage in dieting behaviorº on the EAT and ªI eat sweets and carbohydrates without feeling nervousº on the EDI may be useful indicators of eating disorders in the general population, but in people with diabetes, responses will be affected by the diabetes treatment regimens commonly recommended. Efforts have been made to control for this bias by excluding from the EAT and EDI those items which would be answered significantly differently by those with

diabetes (Cantwell & Steel, 1996; Steel, Young, Lloyd, & Macintyre, 1989). However, further evaluation is needed before these modified measures can be used with confidence in studies involving people with diabetes. Rodin and Daneman (1992), in a review of this literature, suggested that the reliability of prevalence rates for ªcasenessº is improved when based on structured interviews and standardized diagnostic criteria such as ICD-9, rather than selfreport questionnaires which are often used in prevalence studies. However, disordered eating has been found to be common even in more methodologically rigorous studies in addition to more commonly recognized eating disorders and Peveler et al. (1992) also reported that 15% of their sample were omitting or reducing their insulin in order to reduce their weight. Insulin withholding has also been found to be associated with current or past symptoms of anorexia or bulimia nervosa (Biggs, Basco, Patterson, & Raskin, 1994). When insulin is withheld, blood glucose levels will rise until they reach the renal threshold (10 mmol/L) and then glucose will be excreted in the urine taking with it water which would otherwise have been retained. Thus, withholding of insulin is a means of effortless weight loss though not without potentially serious consequences. In particular, the chronic hyperglycemia of a person who habitually withholds insulin to lose weight, will put the individual at risk of DKA requiring hospitalization in the short term (if they omit insulin for too long a period) and, in the longer term, the risk of microvascular complications of diabetes is markedly increased. Pediatricians responsible for the care of adolescents with diabetes may well downplay concerns about future complications for fear of alarming young patients and their parents and it can, therefore, be quite possible for young people with diabetes to be ignorant of the well-established causal link between chronic hyperglycemia and the serious microvascular complications which are the reasons for concern that motivate the clinicians to attempt to improve diabetes control. Where young people with IDDM are well informed about the risks of microvascular complications and the importance of blood glucose control for reducing those risks, the attractions of quick and easy weight loss may nevertheless outweigh the more distant concerns of complications in 15 years or so and, by injecting some insulin occasionally, the dangers of DKA and associated coma may be avoided. Withholding of insulin thus presents a diabetes-specific form of eating disorder which can have much sought after immediate effects but with serious shortand longer-term consequences.

Psychological Interventions in the Management of Diabetes 8.11.7.6.2 Weight reduction programs in NIDDM In NIDDM, obesity is more prevalent than in the general population. Dietary therapy is the mainstay of treatment of NIDDM. A significant proportion of people who follow the dietary recommendations will regain metabolic control without having to take oral hypoglycemic tablets or insulin injections. In the overweight, calorie restriction is particularly important for metabolic control and weight loss is associated with improved glycemic control. Many studies have shown that it is possible to induce weight loss in NIDDM patients using a variety of pharmaceutical methods (for example, appetite suppressants), behavioral methods, exercise, conventional diets, or very low calorie diets. However, longer-term studies typically show that subjects lose weight for the first six months of a program and thereafter regain the weight (Wing & Anglin, 1996). The UK Prospective Diabetes Study Group (1990) examined the responses of more than 3000 newly diagnosed NIDDM patients to diet therapy and showed that 16% achieved near-normal fasting glucose after three months (with an average weight loss of 8 kg). However in the second three months the blood glucose increased a little in spite of continued but decelerated weight loss. Metabolic control appears to be related more to calorie intake than body weight per se. This study shows the value of diet therapy in the successful management of NIDDM, but the weight loss required for adequate diabetes control may be considerable and oral hypoglycemic agents may be needed as well. The evidence suggests that even when dietary change is achievable in the short term, it is not sustainable at the same level over a longer period. Perhaps more attention needs to be given to developing diets which are more acceptable to the individual and, hence, more sustainable. Diets may be unacceptable for economic, psychological, or cultural reasons. A diet that may be affordable and tolerable in the short term, with the support of therapist and fellow patients on a weight loss program, may be unsustainable without such support. There is marked individual variation in weight loss achieved in weight-loss programs. In one intervention study, outcomes varied from a weight loss of 29.5 kg to a gain of 7.7 kg from pretreatment to follow-up (Wing, Epstein, Nowalk, Koeske, & Hagg, 1985). An understanding of the reasons for the variability may well be helpful in determining how to improve the success rate. In particular, consideration of patientsº preferences for different weight loss

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programs may be of value in facilitating successful weight loss. It is likely that a group program will suit some but not others and different kinds of exercise program will suit different people. It is important to bear in mind that a conventional randomized clinical trial of particular weight-loss programs will have recruited only those individuals prepared to follow any of the programs under study and will be likely to have failed to recruit those patients with a strong preference for one program if the program (or a similar program) was available outside the trial. Where a new program is only available within a trial, the patients recruited are likely to have marked preferences for that program, and disappointment will follow if randomization allocates the nonpreferred treatment. Subsequent responses, which may include dropping out of the trial, will undermine the assumptions of a randomized trial. Such trials, attempting to answer the, perhaps inappropriate, question, ªWhich weight loss program works best?º may be less useful in informing routine clinical practice than preference trials or partially randomized preference trials, where patients with preferences are encouraged to follow the treatment they prefer and only those without preferences are invited to accept allocation of treatment by randomization. In such preference trials the question of interest is ªWhich weight loss program works best for which patients?º (Bradley, 1993). Some studies have begun to look at reasons for success and failure in weight loss. National survey data in the US were used to investigate self-reported weight loss and it was found that intentional weight loss in people with diabetes was associated with having been hospitalized twice in the previous year, and having seen a dietitian (Will, 1995) suggesting that a strong motivation to lose weight is important for success. It has been shown that men lose weight faster than women but no association was found between weight loss and whether or not subjects were taking insulin, nor between weight loss and duration of diabetes (Wing, Shoemaker, Marcus, McDermott, & Gooding, 1990). Thus, use of insulin and diabetes of long duration do not appear to present particular obstacles to weight loss. In a later study, smaller weight losses were found in blacks than whites related to faster regaining of weight in blacks (Wing & Anglin, 1996). Pierce and Armstrong (1996) found that in Afro-Caribbean diabetic patients the prescribed diets were held in contempt and largely ignored as being so mean as to be incompatible with a healthy life. Moreover, the subjects disagreed profoundly with the medical notion of a healthy

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body weight. Large body size was perceived as healthy and attractive within this group and valued as such.

8.11.7.7 Treatment of Sexual Dysfunction The vascular and neuropathic complications of diabetes are associated with a higher incidence of sexual problems among men with diabetes than among nondiabetic men. Women with diabetes may also experience more sexual difficulties than nondiabetic women though not all studies have found differences between women with and without diabetes (Jensen, 1981). It has been erectile failure in men with a prevalence of 35±59% (Bancroft & Gutierrez, 1996) which has attracted the attention of clinicians, researchers, and pharmaceutical companies. The potential contribution of psychologists in dealing with the sexual problems of men with diabetes has been little recognized. The increased likelihood of an organic component to erectile dysfunction associated with diabetes has led to a disproportionate emphasis on drug (self-administered papaverine injections to induce erection), mechanical (vacuum tumescence), and surgical interventions (penile implants) vigorously promoted by the manufacturers. Although diabetic men are at least, if not more, likely than other men to have impotence of psychogenic origins, the ready availability of funding for trials of drug and surgical interventions has encouraged and facilitated such approaches, while funding for trials of psychological therapy is far less readily available and such studies are few and far between. Nevertheless, there is evidence that good results can be achieved with psychological approaches. Veves, Webster, Chen, Payne, and Boulton (1995) reported that psychosexual counseling resulted in successful intercourse in 17 (60%) of the 24 men opting for this treatment. A further seven (25%), in whom the marital relationship had previously been unstable, went on to medical treatment after marital therapy. The success rate for psychosexual interventions compared favorably with the success rate (55%) for those opting for papaverine injections and did not have the unwanted consequences experienced by 15% of men using papaverine which included priapism, pain at injection site, and dizziness. However, the modest success rates of psychosexual counseling with unselected patients reported by McCulloch, Hosking, and Tobert (1986) have been widely quoted as reason for pursuing biomedical approaches to treatment. Increasing experience of the failure of surgical implants and complications following surgery have led to the

view that surgery should be a last resort (Alexander, 1990; Dunsmuir & Holmes, 1996). Furthermore, there is increasing emphasis on the importance of psychosexual counseling prior to biomedical interventions (Dunsmuir & Holme, 1996). Several authors have noted an unwillingness among their patients to view their erectile dysfunction as psychogenic in origin, and the limited enthusiasm for psychosexual counseling (Alexander, 1990; McCulloch et al., 1986; Veves et al., 1995). How much of this resistance is due to physiciansº emphasis on biomedical approaches and limited appreciation of psychological approaches is unclear. An editorial in the British Medical Journal recommended that patients with erectile impotence ªshould be told that impotence in diabetes has a physical cause and will not improve without a physical treatmentº (Price, 1993). Others have taken issue with this view (Bancroft & Gutierrez, 1996), but it is clear that this widespread exclusive focus on erectile dysfunction as an organic problem in diabetes will present a challenge to those wishing to encourage psychological approaches. Meisler, Carey, Lantinga, and Krauss (1989) have offered guidelines for a multidisciplinary approach to assessment of sexual dysfunction. Further development and wider use of psychological interventions has the potential for improved psychosexual functioning and prevention of the often irreversible complications of biosurgical interventions.

8.11.8 CULTURAL ISSUES Cultural issues have been referred to at various points throughout the chapter along with life span, age, and gender issues where each has been particularly relevant. Sections of the chapter concerned with risk factors for diabetes review evidence showing diabetes to be less common in white Western populations than in other populations. The high incidence of diabetes among racial minorities in Western society presents particular challenges to diabetes care services when language barriers pose particular problems of management for a disorder which requires complex self-management tasks and dietary change. Good communication between health professionals and their patients is central to the development of selfmanagement skills and appropriate practical solutions need to be found to facilitate communication across languages with multilingual health professionals or use of translators familiar with diabetes and its management. Clashes between cultural beliefs, lifestyle, and

References recommendations for diabetes management, especially dietary recommendations, create particular difficulties where weight reduction is an important component of the recommended management plan for overweight people with NIDDM (see Section 8.11.7.6.2).

8.11.9 PROFESSIONAL ISSUES In the USA involvement of psychologists in diabetes care teams is now standard practice. In the UK it is becoming increasingly common to find psychologists attached to diabetes care teams for two or more sessions per week although this is still the exception rather than the rule. A briefing paper from the British Psychological Society (1994) on services for people with diabetes mellitus recommended one whole-time equivalent post for each local diabetes service allocated between adult services, services to the elderly, and services to children and young people. It was recognized that clinical psychologists who work with adults will not normally have the skills and knowledge to work effectively with children and their families and that special expertize may also be required for some older people. Such recommendations are realistic rather than ideal. This level of input is likely to be mostly taken up with crisis intervention and problem solving rather than preventive work to improve communication, knowledge, and skills in diabetes management across the service as a whole which in the longer term would be of most benefit. There is considerable scope for clinical psychologists to make valuable contributions to diabetes management, providing assessment and treatment, and conducting research and evaluation as well as teaching other health professionals and patients. Several specific psychological therapies which clinical psychologists may be able to offer include stress management and relaxation training, weight management interventions, and management of eating disorders and sexual dysfunction. More general psychological skills will be valuable in helping patients to identify and overcome barriers to self-care and in facilitating the process of helping patients and their advisors to negotiate manageable treatment regimens which are tailored to individualsº lifestyles and preferences. For clinical psychologists to be most effective in diabetes care, detailed understanding is required of diabetes and the varieties of management that are possible. The management regimens recommended in a particular clinic are likely to be only a small minority of those which could be made available. There are

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many diabetologists who continue to recommend particular doses and timing of insulin which then dictate the timing of meals and snacks and require patients to manipulate their diet and exercise to fit in with the regimen prescribed. Initially, it may well be more demanding to teach patients how to manipulate their insulin appropriately to fit in with preferred meal times and varying levels of energy expenditure, but in the longer term it is a great deal less demanding and more convenient for the patient, their family, friends, and other associates if they adjust their insulin dose rather than their life (Howorka, 1996). Problems with poor diabetes control, which diabetologists may construe as ªcomplianceº problems, may more productively be construed as inflexible treatment recommendations and/or inadequate education in diabetes management and selfcare skills in adjusting insulin doses and timing to accommodate a flexible lifestyle. By developing an understanding of how diabetes can be managed physiologically and by appreciating the range of different medical approaches to diabetes management, clinical psychologists are better placed to apply their psychology to the task of improving diabetes management while at the same time protecting, and even improving, the psychological well-being and quality of life of people with diabetes.

8.11.10 REFERENCES Aikens, J. E., Wallander, J. L., Bell, D. S. H., & McNorton, A. (1994). A nomothetic-idiographic study of daily psychological stress and blood glucose in women with Type 1 diabetes mellitus. Journal of Behavioral Medicine, 17, 535±548. Akerblom, H. K., Savilahti, E., Saukkonen, T. T., Paganus, A., Virtanen, S. M., Terami, K., Knip, M., Ilonen, J., Reijonen, H., Karjalainen, J., Vaarala, O., & Reunanen, A. (1993). The case for elimination of cowsº milk in early infancy in the prevention of Type 1 diabetes: the Finnish experience. Diabetes/Metabolism Reviews, 9, 269±278. Alexander, W. D. (1990). The diabetes physician and an assessment and treatment program for male erectile impotence. Diabetic Medicine, 7, 540±543. Alexander, W. D. (1993). Human insulin: lessons from the UK? The Medical Journal of Australia, 159, 75±76. American Diabetes Association. (1992). Screening for diabetic retinopathy. Diabetes Care, 15(Suppl. 2), 16±18. Anderson, R. M. (1995). Patient empowerment and the traditional medical model: A case of irreconcilable differences? Diabetes Care, 18, 412±415. Anderson, R. M., Funnell, M. M., Barr, P. A., Dedrick, R. F., & Davis, W. K. (1991). Learning to empower patients: Results of professional education program for diabetes educators. Diabetes Care, 14, 584±590. Anderson, R. M., Funnell, M. M., Butler, P. M., Arnold, M. S., Fitzgerald, J. T. & Feste, C. C. (1995). Patient empowerment: Results of a randomized controlled trial. Diabetes Care, 18, 943±949. Anderson, R. M., Hiss, R. G., Stepien, C. J., Fitzgerald, J. T., & Funnel, M. M. (1994). The diabetes education

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and practice (pp. 191±219). Chur, Switzerland: Harwood Academic Publishers. Saad, M. F., Knowler, W. C., Pettitt, D. J., Nelson, R. G., Mott, D. M., & Bennett, P. H. (1988). The natural history of impaired glucose tolerance in the Pima Indians. New England Journal of Medicine, 319, 1500±1506. Sartor, G., Schersten, B., Carlstrom, S., Melander, A., & Persson, G. (1980). Ten-year follow-up of subjects with impaired glucose tolerance: Prevention of diabetes by tolbutamide and diet regulation. Diabetes, 29, 154±157. Seeburg, K. N., & DeBoer, K. F. (1980). Effects of EMG biofeedback on diabetes. Biofeedback and Self-Regulation, 5, 289±293. Smith, U. (1984). Insulin resistance in obesity, Type II diabetes and stress. Acta Endocrinologica, 105(Suppl. 262), 67±69. Stabler, B. (1993). On the role of patient. Journal of Pediatric Psychology, 18, 301±312. Steel, J. M., Young, R. J., Lloyd, G. G., & Macintyre, C. C. A. (1989). Abnormal Eating attitudes in young insulin-dependent diabetics. British Journal of Psychiatry, 155, 515±521. Surwit, R. S., & Feinglos, M. N. (1983). The effects of relaxation on glucose tolerance in non-insulin-dependent diabetes. Diabetes Care, 6, 176±179. Sutherland, D. E. R., Gores, P. F., Hering, B. J., Wahoff, D., McKeehen, D. A., & Gruessner, W. G. (1996). Islet transplantation: An update. Diabetes/Metabolism Reviews, 12, 137±150. Taylor, R., Foster B., Kyne-Grzebalski, D., & Vanderpump, M. (1994) Insulin regimens for the non-insulin dependent: Impact on diurnal metabolic state and quality of life. Diabetic Medicine, 11, 551±557. Taylor, R., Ram, P., Zimmet, P., Raper, L. R., & Ringrose, H. (1984). Physical activity and prevalence of diabetes in Melanesian and Indian men in Fiji. Diabetologia, 27, 578±582. Todd, J. A. (1995). Genetic analysis of Type 1 diabetes using whole-genome approaches. Proceedings of the National Academy of Science USA, 92, 8560±8065. Todd, C., Bradley, C., & Symonds, L. (1993). Psychosocial measurement in the audit of diabetes services. Audit Trends, 1, 141±143. Toobert, D. J., & Glasgow, R. E. (1994). Assessing diabetes self-management: The summary of Diabetes Self-Care Activities Questionnaire. In C. Bradley (Ed.), Handbook of psychology and diabetes: A guide to psychological measurement in diabetes research and practice (pp. 351±375). Chur, Switzerland: Harwood Academic Publishers. UK Prospective Diabetes Study Group VII (1990). Response of fasting plasma glucose to diet therapy in newly presenting type II diabetic patients. Metabolism, 39, 309±312. UK Prospective Diabetes Study Group VIII (1991). Study design, progress and performance Diabetologia, 34, 877±890. Vandewalle, C. L., Decraene, T., Schult, F. C., De Leeuw, I. H., Pipeleers, D. G., & Gorus, F. K. (1993). Insulin antibodies and high titre islet-cell antibodies are preferentially associated with the HLA DQA1 *0301DQB1*0302 haplotype at clinical onset of Type 1 (insulin-dependent) diabetes mellitus before age 10 years,

but not at onset between age 10 and 40 years. Diabetologia, 36, 1155±1162. Verge, C. F., Gianani, R., Kawasaki, E., Yu, L., Pietropaolo, H., Jackson, R. A., Chase, H. P., & Eisenbarth, G. S. (1996). Prediction of Type 1 diabetes in first-degree relatives using a combination of insulin-, GAD- and ICA512 bdc/IA-2 autoantibodies. Diabetes, 45, 926±933. Veves, A., Webster, L., Chen, T. F., Payne, S., & Boulton, A. J. (1995). Aetiopathogenesis and management of impotence in diabetic males: 4 years experience from a combined clinic. Diabetic Medicine, 12, 77±82. Viberti, G. C., Walker, J. D., & Pinto J. D. (1992). Diabetic nephropathy. In K. G. M. M. Alberti, R. A. De Fronzo, H. Keen, & P. Zimmet (Eds.), International textbook of diabetes mellitus (pp. 1267±1328). Chichester, UK: Wiley. Wang, P. H., Lau, J., & Chalmers, T. C. (1993). Metaanalysis of effects of intensive blood-glucose control on late complications of Type I diabetes. Lancet, 341, 1306±1309. Will, J. C. (1995). Self-reported weight loss in adults with diabetes: Results from a national health survey. Diabetic Medicine, 12, 974±978. Wilson, A., Home, P. D., Bishop, A., Bradley, C., Brown, K. J. E., Hargreaves, B. & members of the working group of the Research Unit of the Royal College of Physicians and British Diabetic Association (1993). A dataset to allow exchange of information for monitoring continuing diabetes care. Diabetic Medicine, 10, 378±390. Wing, R. R., & Anglin, K. (1996). Effectiveness of a behavioral weight control program for blacks and whites with NIDDM. Diabetes Care, 19, 409±413. Wing, R. R., Epstein, L. H., Nowalk, M. P., Koeske, R., & Hagg, S. (1985). Behavior change, weight loss, and physiological improvements in type II diabetic patients. Journal of Consulting and Clinical Psychology, 53, 111±122. Wing, R. R., Shoemaker, M., Marcus, M. D., McDermott, M., & Gooding, W. (1990). Variables associated with weight loss and improvements in glycemic control in type II diabetic patients in behavioral weight control programs. International Journal of Obesity, 14, 495±503. World Health Organization (1985). WHO study group on diabetes mellitus. Second report (WHO Technical Report Series, No 727). Geneva, Switzerland: Author. World Health Organisation Regional Office for Europe (1993). Consensus Meeting on Quality Assurance Indicators in Mental Health Care. Stockholm, August, 1993. World Health Organisation Regional Office for Europe (1995). Consensus Meeting on Quality Assurance Indicators. Stockholm, November, 1995. Zigmond, A. S., & Snaith, R. P. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica, 67, 361±70. Zimmet, P. Z. (1992). Kelly West Lecture 1991: Challenges in diabetes epidemiologyÐfrom West to the rest. Diabetes Care, 15, 232±252. Zimmet, P. Z. (1995). The pathogenesis and prevention of diabetes in adults. Diabetes Care, 18, 1050±1064.

Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.12 Functional Bowel Disorders SHANNON M. TURNER Utah State University, Logan, UT, USA 8.12.1 INTRODUCTION

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8.12.2 INFLAMMATORY BOWEL DISEASE AND PEPTIC ULCER DISEASE

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8.12.3 IRRITABLE BOWEL SYNDROME AND FUNCTIONAL BOWEL DISORDER

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8.12.3.1 8.12.3.2 8.12.3.3 8.12.3.4

Classification of IBS Classification of the Functional Bowel Disorders Epidemiology of IBS and the Functional Bowel Disorders Proposed Etiological/Assessment Issues: Physiological, Psychological and Psychosocial Determinants of IBS and FBD 8.12.3.4.1 Proposed physiological mechanisms for IBS and the functional bowel disorders 8.12.3.4.2 Proposed psychological/sociocultural explanations for IBS and the functional bowel disorders

8.12.4 ASSESSMENT 8.12.4.1 8.12.4.2 8.12.4.3 8.12.4.4 8.12.4.5

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Daily Symptom Diaries Assessing Psychological and Psychosocial Distress Assessing Psychiatric Disorder Assessing Health Impact of the Functional Bowel Disorders Summary

8.12.5 TREATMENT AND/OR MANAGEMENT OF IBS AND THE FUNCTIONAL BOWEL DISORDERS 8.12.5.1 Medical Treatments for IBS 8.12.5.1.1 Summary 8.12.5.2 Psychological and Psychophysiological Management of IBS and FBD 8.12.5.2.1 Brief psychodynamic psychotherapy 8.12.5.2.2 Hypnotherapy 8.12.5.2.3 Cognitive-behavioral approaches 8.12.5.2.4 Summary

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8.12.6 PROFESSIONAL ISSUESÐIBS AND THE FUNCTIONAL BOWEL DISORDERS

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8.12.7 SUMMARY

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8.12.8 REFERENCES

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often refractory to usual medical care and thus cause the medical clinician great difficulty (Drossman, 1995). The economic costs of such disorders are large, particularly given sufferers' significant levels of healthcare consumption, quantities purchased of ineffective, over-thecounter treatments (Talley, Gabriel, Harmsen, Zinsmeister, & Evans 1995; Thompson, 1991), and absenteeism (Drossman et al., 1993). For these reasons, the present chapter will devote most of its coverage to these disorders. However,

8.12.1 INTRODUCTION Although gastrointestinal (GI) disorders are highly prevalent, at least in the USA and in other Western countries, only a few of these have received attention from clinical psychologists. Among this limited group of GI disorders, those of a primarily functional nature, specifically irritable bowel syndrome, functional bowel disorders, nonulcer dyspepsia, gastroesophageal reflux, and (sometimes) fecal incontinence, are 305

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the psychological aspects of two organic conditions, peptic ulcer disease (PUD) and inflammatory bowel disease (Crohn's disease and ulcerative colitis), will be briefly addressed, given these disorders' deceptively similar presentation to irritable bowel syndrome and other functional bowel disorders, historical (albeit incorrect) conceptualization as ªpsychosomatic disorders,º and the utility of psychiatric/behavioral techniques in their management. 8.12.2 INFLAMMATORY BOWEL DISEASE AND PEPTIC ULCER DISEASE Inflammatory bowel disease (IBD) is a descriptive label which subsumes two painful and sometimes life-threatening conditions, Crohn's disease and ulcerative colitis. Crohn's disease is best characterized by inflammation that can penetrate the layers of the entire gastrointestinal tract, often resulting in bowel obstruction and/or infection of extraintestinal systems (Olden, 1992). Ulcerative colitis manifests similarly, but involves only the mucosa of the large bowel. Like IBS, both forms of IBD follow a chronic, episodic course, with symptoms including severe abdominal pain, loss of appetite, vomiting, and diarrhea. Complications of exacerbations can include electrolyte imbalance and anemia due to vomiting, anorexia, bloody diarrhea, and mineral malabsorption. Other extraintestinal effects include, but are not limited to, arthritis, carcinoma of the bile ducts, skin lesions, osteoporosis/osteomalacia, and increased risk for the development of cancers of the GI tract (see Olden, 1992). Following the publication of a single case report in 1930 documenting an individual's development of ulcerative colitis during an interpersonally stressful period, a body of literature suggesting a psychosomatic etiology for this disease has developed (Murray, 1930; North & Alpers, 1994). A similar situation occurred regarding Crohn's disease (Blackburn, Hadfield, & Hunt, 1939). However, despite these uncontrolled reports, a consistent, causally directional relationship between ªstressº or similar psychological variables, and IBD has not been effectively documented (Lewin & Lewis, 1995; North & Alpers, 1994). Although the exact etiology of both forms of IBD remains unclear, the clinical lore ascribing a causal role to psychiatric variables is based largely on clinical interpretation, rather than on statistically reliable and valid measurement (Olden, 1992). However, while psychological variables and stress may not be etiologically related to IBD, certainly they may represent consequences of these diseases. Corticosteroids and other such

medications as azulfidine, are used for long periods of time, and often have unpleasant side effects, making compliance issues relevant. Surgical intervention may be stressful and in the case of ostomy, may raise concerns about body image and intimacy (see Olden, 1992), as can skin conditions related to IBD. Psychological assessment and intervention may certainly be useful in such areas as quality of life (see Drossman, Patrick & Appelbaum, 1989; Drossman, Patrick, & Mitchell, 1989; Olden, 1992), and stress and pain management (Blanchard et al., 1992). PUD includes ulceration of the gastric and duodenal areas, causing abdominal pain, loss of appetite, and altered bowel function. Recent research suggests that this problem is best attributable to a bacterium known as Heliobacter pylori (Warren & Marshall, 1983; Peura & Graham, 1994), which can be spread through oral±fecal contact (Delaney, 1995). Risk of contact with this organism is significantly related to childhood poverty (Webb, Knight, & Greaves, 1994). Pharmacological intervention is currently the most effective tool for PUD (see Delaney, 1995), which raises the possibility for behaviorally focused intervention. Like IBS, PUD also follows a chronic, relapsing course, and until the discovery of Heliobacter pylori, psychiatry had long held that PUD was strongly related to prolonged stress (see Whitehead, 1992a), despite the lack of consistently supportive empirical data, and failure of psychological intervention to affect PUD symptoms. However, behavioral treatments focused on medication compliance may represent an effective intervention for PUD, given the often complicated pharmacological regimen involved in eradication of this bacterium (Delaney, 1995). Further empirical investigation is suggested. In short, although psychological etiology in both IBD and PUD have not been supported empirically, this does not rule out a potential role for clinical psychologists in the assessment and intervention of these diseases. Assessment of stress, quality of life, sexual functioning, body image, and medication compliance, as well as behavioral intervention in all of these areas, seem appropriate avenues for psychologists in the future.

8.12.3 IRRITABLE BOWEL SYNDROME AND FUNCTIONAL BOWEL DISORDER By far the most prevalent of the functional GI disorders (Talley, Weaver, Zinsmeister & Melton, 1992), and the one which has been the

Irritable Bowel Syndrome and Functional Bowel Disorder focus of the most attention since the late 1980s, is the irritable bowel syndrome (IBS). Functional bowel disorders (FBD), a target of increasing research attention, have only recently been delineated from IBS and therefore will also be covered in this section.

8.12.3.1 Classification of IBS IBS is a common, sometime disabling (Corney & Stanton, 1990), and poorly understood functional condition of the lower GI tract. It is most often characterized by ªabdominal pain and change in bowel habit (diarrhea and/or constipation) occurring in the absence of abnormalities on the appropriate physical and laboratory investigationsº (Latimer, 1983, p. 205). However, individuals may often suffer other GI symptoms such as bloating, flatulence, nausea, belching, abdominal distention (Kellow & Langluddecke, 1989); mucous stools, abdominal rumbling and gurgling, and loss of appetite and/or weight (Latimer, 1983). Nongastrointestinal symptoms, including headache, palpitation, dyspnea (Davis, 1980), fatigue, weakness, muscular pains (Latimer, 1983; Lynn & Friedman, 1993), and disorders of anxiety (Blanchard, Scharff, Suls, & Barlow, 1990; Clouse, 1988; Liss, Alpers, & Woodruff, 1973; Lydiard, 1992; Tollefson, Tollefson, Pederson, Luxenberg, & Dunsmore, 1991; Walker, Roy-Byrne, & Katon, 1990; Walker, Roy-Byrne, Katon, Li et al., 1990) and mood (Blanchard et al., 1990; Liss et al., 1973; Lydiard, Fossey, Marsh, & Ballenger, 1993; Walker, Roy-Byrne, & Katon, 1990; Walker, Roy-Byrne, Katon, Li et al., 1990) are also often reported. Clearly a heterogeneous problem, IBS may also follow a chronic and relapsing course (Latimer, 1983). Harvey, Salih, and Read (1983) found that in a prospective study of 2000 outpatients, 449 who had suffered from IBS at initial contact, continued to struggle with the disorder two to five years later. Similarly, Thompson, Creed, Drossman, Heaton, and Mazzacca (1992) state that IBS will often affect individuals for a large part of their lives. These two factors certainly complicate the management of this disorder. Understandably, the complexity of IBS has led to numerous attempts to diagnose and/or classify it appropriately. Powell, in 1820, first described IBS as ªpainful affectations of the intestinal canalº (in Chandhary & Truelove, 1962) Since then, 30 definitions for this disorder have been coined, all reflecting the current etiological zeitgeist. However, given consistent failure to identify specific organic and/or physiologic causal variables, IBS has been

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defined descriptively and by exclusion. For instance, an attempt to standardize diagnostic practice was made by Kruis et al. (1984), who developed an actuarial approach that would initially separate IBS patients from those with organic GI disease by way of symptom presentation and lack of physical findings, and then further discriminate between the two groups by a weighted system utilizing historical, physical, and empirical variables, these data then being analyzed by logistic regression analysis. Although an important attempt, and one that attended to the necessity to differentiate IBS from more deadly conditions like IBD, the approach of Kruis et al. (1984) has been criticized for its lack of clinical utility, given the heterogeneity of IBS (Blanchard, 1993; Camilleri & Prather, 1992; Drossman, 1984), as well as the growing need to avoid expensive and unnecessary medical tests and procedures (Talley, Phillips, Melton et al., 1990). In 1988, the Thirteenth International Congress of Gastroenterology met in Rome, Italy, to attempt a more positive diagnostic classification of IBS. Their decision was based in part on the work of Manning and his colleagues (Manning, Thompson, Heaton, & Morris, 1978), who had compared the prevalence of 15 symptoms in patients with IBS to that of individuals suffering from organic GI disease, and found that six primary symptoms (i) visible abdominal distention, (ii) pain relieved by defecation, (iii) more frequent stools with pain onset, (iv) looser stools with pain, (v) passage of mucus, and (vi) a subjective sensation of incomplete evacuation, differentiated IBS from bowel disease. The Rome Criteria are as follows: at least three months continuous or recurrent symptoms of: (i) Abdominal pain or discomfort which is (a) relieved by defecation, (b) and/or associated with a change in frequency of stool, (c) and/or associated with a change in consistency of stool; and (ii) Two or more of the following, on at least a quarter of occasions or days: (a) altered stool frequency (either more than three bowel movements per day or fewer than three bowel movements per week, (b) altered stool form (lumpy/hard or loose/ watery stool), (c) altered stool passage (straining, urgency, or feeling of incomplete evacuation), (d) passage of mucus, (e) bloating or feeling of abdominal distention. The ªRome Criteria,º as they have come to be known, are currently the most commonly

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accepted and utilized for IBS. However, as noted by Talley, Phillips Melton et al. (1990), few studies have been conducted to test their validity. The aforementioned group assessed 361 gastroenterological outpatients presenting to the Mayo Clinic with both a validated bowel symptom questionnaire and a full clinical evaluation. These individuals were retested for reliability. Logistic regression analysis indicated that as the number of positive diagnostic criteria increased, so did the probability of IBS. However, the sensitivity was somewhat low. In short, a positive, sympomatic diagnostic approach based on the Rome Criteria seems quite useful and important.

8.12.3.2 Classification of the Functional Bowel Disorders Since the classification of IBS in 1988, another team has constructed a similar system for all the functional gastrointestinal disorders, and has placed IBS in the category of the ªfunctional bowel disorders.º Thompson et al. (1992) define these disorders, propose diagnostic criteria, and discuss their differentiation from IBS. Functional abdominal bloating (FAB) is a disorder characterized by a feeling of fullness, bloating and/or abdominal distention. Audible bowel sounds and expulsion of gas may also be present. Symptoms must have been present for at least three months, and must not be related to dietary factors. Individuals with FAB do not meet diagnostic criteria for IBS or other functional bowel disorders. Functional constipation (FC) is defined as ªpersistent symptoms of difficult, infrequent, or seemingly incomplete defecationº (Thompson et al., 1992, p. 80), which has no other apparent etiology. Symptoms must be present again, for at least three months, individuals must report straining upon defecation at least 25% of the time, lumpy or hard stools, a sensation of incomplete evacuation, and two or fewer bowel movements in a week. Abdominal pain is not present, and individuals do not meet criteria for IBS. Functional diarrhea (FD), defined by Thompson et al. (1992) as ªthe frequent and/ or urgent passage of unformed stoolº (p. 83), must include two or more of the following symptoms present for at least two months: unformed stool passage 75% of the time; three or more bowel movements per day, at least half of the time; and increased stool weight (for details, see Thompson et al., 1992). Patients do not report abdominal pain or hard or lumpy stools. They experience urgency and may occasionally soil themselves.

Unspecified bowel disorders include combinations of symptoms that neither fit into the aforementioned categories, nor suggest organic disease. Lastly, functional abdominal pain (FAP), is described as six months of ongoing pain that is experienced in the abdomen, but bears no relationship to the function of the GI tract, or other physiological systems (e.g., reproductive system, etc.). As with all functional GI disorders, organic disease is conspicuously absent. Thompson et al. acknowledge the significant overlap of reported GI symptoms in many of the aforementioned disorders; however, such differentiation is necessary for research into, and development of, effective and appropriate management strategies for all of these, given their prevalence.

8.12.3.3 Epidemiology of IBS and the Functional Bowel Disorders Although epidemiological estimates have been made by way of surveying outpatients reporting to gastroenterology clinics, the contention that most individuals suffering from bowel symptoms do not seek medical attention for them has necessitated general population studies of both IBS and the functional bowel disorders. Talley, Zinsmeister, Van Dyke, and Melton (1991) conducted such a questionnaire study of the Caucasian, middle-aged population of Olmstead County, Minnesota. They found that the prevalence of IBS, identified by the Rome Criteria, was approximately 17%. Contrary to most published reports, this investigation did not uncover a gender difference in bowel symptom reporting. The prevalence of functional bowel disorders other than IBS was as follows: functional abdominal pain 26%, chronic constipation 17.4%, and chronic diarrhea 17.9%. Interestingly, only 9% of individuals reporting such symptoms had sought medical attention in the year prior to the study's inception, and neither pain severity, duration, or frequency accounted for such help-seeking. Similarly, though on a somewhat larger scale, Drossman et al. (1993) examined the prevalence, sociodemography and health impact of functional GI disorders in a stratified probability random sample of US homeowners. Utilizing the Rome Criteria and the newly developed criteria for functional bowel disorders mentioned above, the authors found that 69% of the entire sample (5430 responders) reported having experienced at least one functional bowel syndrome in the previous three months, and based on the data received, estimated that 9% of

Irritable Bowel Syndrome and Functional Bowel Disorder the nation may suffer from IBS, 3.0% from functional constipation, 1.6% from functional diarrhea, 32.1% from functional abdominal bloating, and 2% from chronic functional abdominal pain. In contrast with the aforementioned report by Talley, the estimated prevalence rate of IBS was low, which the authors attribute to their use of stringent diagnostic criteria. Also, the present group found that females were indeed more likely to report IBS, in addition to functional constipation and functional abdominal pain, than were men, who more often reported functional bloating. Lastly, Drossman et al. (1993) found that females were more likely than males to seek medical assistance, whereas Talley et al. (1991) did not assess this variable. Earlier epidemiological data collected in Europe and the Far East suggest a similar prevalence (Drossman & Thompson, 1992) to that estimated by Talley et al. (1991), but studies conducted in some areas of Southeast Asia and even rural North America report a lower rate, one more similar to that of Drossman et al. (1993). Such a discrepancy suggests that GI symptoms are very prevalent and many more suffer privately than seek treatment. Regarding gender, in Western countries, the typical IBS patient appears to be female and under 35 years of age (Drossman & Thompson, 1992), but in India, for example, most individuals presenting to physicians for treatment of IBS are male, suggesting that IBS (or at least its report) may be in part, culturally determined, an issue that will be more broadly discussed below.

8.12.3.4 Proposed Etiological/Assessment Issues: Physiological, Psychological, and Psychosocial Determinants of IBS and FBD The two epidemiological studies discussed above illustrate the improved status of current IBS and FBD research, as definitions/diagnoses of these syndrome(s) are more positive and symptom-determined, and no longer necessarily reflective of etiological viewpoints, which have yet to reflect a consensus in the field. The following sections will critically review the prominent etiological theories of IBS and, when appropriate, the functional bowel disorders (many of these are the same or very similar and fall under two main categories, physiological and psychological/psychosocial). Important assessment issues will then be addressed, including daily symptom tracking, the measurement of psychological distress and/or disorder, and the necessity to conduct a thorough psychosocial history.

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8.12.3.4.1 Proposed physiological mechanisms for IBS and the functional bowel disorders (i) Abnormal gut motility According to Whitehead (1992b), increased motility in the intestinal tract is characteristic of most IBS patients. However, this motility is neither consistent, nor is it necessarily abnormal. Griffin (1985) summarized a number of different bowel motility patterns that have been observed in IBS. For example, cramping abdominal pain is often associated with large and small intestinal changes in the duration and frequency of increased intraluminal pressure and contractions; parasympathomimetic agents tend to provoke increased colonic muscle activity; increased resting colonic muscle activity is observed in diarrhea-predominant IBS, and the opposite pattern is often observed when constipation predominates. A representative study of motility dysfunction was conducted by Latimer et al. (1981), wherein they examined the basal motor activity (BMA) of the distal colon in diarrhea-predominant, constipationpredominant, and normal subjects. Findings were equivocal, in that although significant motility variation was found in the IBS groups, the normal group also exhibited motility disruption in the 15 cm segment of distal colon. Similarly, motility dysfunction has been studied with slow-wave myoelectrical activity as the dependent variable. Snape, Carlson, and Cohen (1976) found that IBS patients' slowwave activity in the distal colon was increased by three cycles per minute, compared to normals. Lynn and Friedman (1993) describe such activity as correlated with ªnonpropulsive segmenting contractions of the colon [which] might result in constipationº (p. 1940). Again, though, in a study conducted by Madhu et al. (1988), such findings were not supported, as no significant differences in colonic motility were observed between IBS patients and normal controls. Given that the functional bowel disorders have only recently been differentiated from IBS, research investigating functional diarrhea and/ or functional constipation, as delineated here, has yet to be conducted. The few studies that do exist echo the results of the IBS research: support is mixed for dysfunctional motility. (ii) Anxiety and the ªbrain±gut linkº Fossey and Lydiard (1990) have hypothesized that neuroanatomical connections between the hypothalamus, the ªorigin of information transmitted to the gut via parasympathetic and sympathetic pathwaysº (p. 178), and the GI

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tract may be indirectly responsible for IBS symptoms, through ªprimary pathology at the CNS level [which] may secondarily impact on the gastrointestinal system via neurohumoral processes, resulting in gastrointestinal distressº (p. 179). Unfortunately, however, it is unclear to what the authors refer by ªprimary pathology at the CNS level.º A similar theory has been put forth by others, including Clouse (1988), who suggested that the ªenteric nervous system (ENS),º made up of the nerves of the gut, is often considered the ªthird divisionº of the autonomic nervous system (ANS), and appears to function accordingly (p. 412). Walker, RoyByrne, Katon, Li et al. (1990) and Lydiard (1992) concur, and suggest that because high activity of the locus coeruleus, a pontine noradrenergic nucleus, has been correlated with ªvigilance and attention to novel or fearprovoking stimuli, [and] less activation with . . . behaviors such as sleep, grooming, and feeding º (Walker, Roy-Byrne, Katon, Li et al. 1990b, p. 569), this supports the notion that IBS is related to the physiological aspects of clinical anxiety. The locus coeruleus receives afferent input from the viscera (Lydiard, 1992) and is directly innervated by the medullary nucleus solitarius, which is known to communicate with the GI system (Walker, Roy-Byrne, Katon, Li et al. 1990b), potentially providing the ªmissing linkº between IBS and the body's protective ªfight or flightº response which, when firing inappropriately, can be experienced as anxiety (Barlow, 1988). Albeit somewhat reductionistic and not sufficiently explanatory, given that not all IBS patients experience clinical anxiety, the ªbrain± gut linkº theory represents a promising area for future research. What follows are some of the prominent psychological/sociocultural theories of the etiology of IBS. 8.12.3.4.2 Proposed psychological/sociocultural explanations for IBS and the functional bowel disorders Psychological theories of IBS have been divided into five main sections: abnormal pain perception, specific historical variables, maladaptive psychological or behavioral characteristics, the presence of psychological disturbance or disorder, and stress. (i) Abnormal pain perception Early studies of lower intestinal function found that colonic distention produced pain (Bloomfield & Polland, 1931). Ritchie (1973) found that balloon insertion and inflation into the colons of both IBS patients and healthy but

ªconstipatedº control subjects produced significantly different pain perception in the IBS patients than in the controls. However, a study conducted by Latimer et al. (1979), which included a group of psychological controls without bowel symptoms, failed to find such between-group differences. Support for the colonic hyperalgesia hypothesis, therefore, is equivocal. (ii) Historical variables: physical and sexual abuse history Another potentially etiologically important issue in IBS and other functional gastrointestinal disorders is sexual and physical abuse history. A representative study was conducted by Walker, Katon, Roy-Byrne, Jemelka, and Russo (1993), who assessed both IBS and IBD patients with a structured psychiatric interview and a sexual trauma interview. The results indicated that the prevalence of severe lifetime sexual abuse was significantly higher in IBS patients (32% vs. 0%), as was any sexual abuse (54% vs. 5%). However, prevalence estimates vary significantly across studies and sites of investigation. For a recent review of this literature, see Drossman, Talley, Leserman, Olden, and Barreiro (1995). (iii) Maladaptive psychological and/or behavioral characteristics Research suggesting psychological and/or behavioral characteristics as explanatory for IBS and other psychophysiological disorders encompasses a very large area, including personality, specifically the traits of ªneuroticismº (Latimer, 1983) and negative affectivity (NA) (Watson & Pennebaker, 1989); depressive and anxious symptomology (Blanchard et al., 1986); and abnormal illness behavior, a particularly interesting concept first defined by Whitehead, Winget, Fedoravicius, Wooley, and Blackwell (1982) as ªfrequent visits to physicians, multiple somatic complaints, and disability disproportionate to physical findingsº (p. 202). Abnormal illness behavior has since been expanded upon and studied, due to its potential relevance to IBS. Gomborone, Dewsnap, Libby, and Farthing (1995) assessed IBS patients, individuals with organic GI disease, depressed individuals, and healthy controls with the Illness Attitudes Scale (IAS), a measure of abnormal illness attitudes, as well as the Beck Depression Inventory (BDI). They found that BDI scores of the IBS patients were significantly higher than those of patients with organic GI disease and healthy controls, and that IBS patients' IAS scores were also significantly

Irritable Bowel Syndrome and Functional Bowel Disorder elevated, particularly on such subscales as bodily preoccupation, hypochondriacal beliefs, and disease phobia. The authors concluded that IBS patients exhibit abnormal attitudes that are not related solely to depression or to the experience of physical symptoms, but reflect distress about illness disproportionate to reality. (iv) Psychological disturbance or disorder The above data document the apparent existence of abnormal psychological/behavioral characteristics in many IBS patients. Another area of research has implicated diagnosable psychological/psychiatric disorder in the etiology of IBS. It has been estimated that 50 to 100% of IBS patients meet diagnostic criteria for some psychiatric illness (Blanchard, 1993). However, for psychiatric illness to be etiologically connected to IBS, it would need to have predated or have coincided with GI symptom onset. Walker, Roy-Byrne, Katon, Li et al. (1990) investigated the prevalence of psychiatric illness as measured by structured interview in IBS patients and in those with inflammatory bowel disease (IBD). They found that IBS patients had suffered significantly more lifetime diagnoses of major depression, generalized anxiety disorder, panic disorder, somatization disorder, and phobia, than had the IBD patients. The majority of these individuals had experienced the psychiatric disorders prior to the onset of GI symptoms. Blanchard et al. (1990) found similar results, with IBS patients suffering significantly more anxiety disorders than individuals with IBD. However, not all investigations have found this to be the case. For example, Thornton, McIntyre, Murray-Lyon, and Gruzelier (1990) found that the majority of their sample did not suffer from psychological disorder. Again, although the bulk of the evidence suggests that psychological distress and/or disorder is etiologically related to IBS, it does not sufficiently explain its occurrence. (v) Stress The study of ªstressful life eventsº and/or ªstressº in the etiology of IBS is not new, and given that many IBS patients report that stressful events exacerbate their symptoms and may have even precipitated them (Chaudary & Truelove, 1962) it is an extremely important area of research. Arun, Kanwal, Vyas, and Sushil (1993) found that IBS patients recalled significantly more stressful life events than did healthy controls. The results of Craig and Brown (1984) indicated that in their sample, stressful life events predated the onset of symptoms in individuals with functional gastro-

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intestinal disorders. A recent, well-designed study by Whitehead, Crowell, Robinson, Heller, and Schuster (1992) found that in a female sample unselected for bowel symptoms, individuals who met the Rome Criteria for IBS experienced significantly more stressful life events (as measured by a standardized inventory) than did subjects who experienced what can now be defined as functional bowel disorders other than IBS, or healthy controls. Whitehead's group also controlled for ªneuroticism,º which has also been implicated in IBS (Latimer, 1983; Blanchard et al. 1990), strengthening their findings. Using a different conceptualization of ªstress,º subjectsº cognitive appraisal of situational demands relative to their coping abilities, DeLongis, Coyne, Dakof, Folkman, and Lazarus (1982) assessed individuals with the ªHassles and Uplift Scale,º a measure of the distress occasioned by daily events, and not their frequency, and found that this distress was more closely related to somatic health than were stressful life events. Similarly, Jandorf, Deblinger, Neale, and Stone (1987) found that the perceptions of daily events as negative and/or stressful strongly predicted physical symptoms in healthy subjects, even more so than in adults with pre-existing medical conditions, lending credence to the notion that one's experience of daily life as stressful affects one's physical health (or at least its perception). These data appear supportive of a stress hypothesis in the etiology of IBS. However, as noted in an important editorial by Whitehead (1994) the distinction between ªstressful life eventsº and ªstressº reflects the field's conceptual differences, which have made it difficult to draw clear conclusions about the relationship between stress and IBS symptoms. A study conducted by Suls, Wan, and Blanchard (1994) attempted to address some of these differences by examining the relationship between stress and GI symptoms prospectively, using a daily diary format to assess both. Interestingly, their results indicated no relationship. However, Whitehead suggests that in their attempt to guard against a Type I error, Suls et al. (1994) may have committed a Type II error by rejecting the stress-symptom hypothesis prematurely, and that given the significant amount of clinical evidence in support of this hypothesis, as well as its theoretical basis for the treatment of IBS, further investigation should occur. (vi) Summary In summary, extensive empirical investigation has revealed that neither motility dysfunction nor individual difference/psychological

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variables have emerged solely responsible for IBS. Rather, the findings have revealed an apparently interactive relationship between colonic and external stimuli. Thus far, the body of findings regarding dysfunctional motility, the possible ªbrain±gut link,º learned illness behavior, historical variables, psychological characteristics, stress and other biobehavioral variables, including eating (Harvey, Salih, & Read, 1983) and fiber intake (Payler, Pomare, Heaton, & Harvey, 1975), suggests that the clinician must be sensitive to the interaction of both the biological and behavioral systems, and treat IBS as a psychophysiological disorder. This implies that in order adequately to assess and treat this disorder, the approach should be comprehensive, assessing physiological and psychosocial factors. As mentioned above, examination of the etiological role of these variables in the functional bowel disorders has not yet been undertaken, given their relatively recent distinction from IBS, and is therefore suggested.

8.12.4 ASSESSMENT 8.12.4.1 Daily Symptom Diaries In their 1994 investigation, Suls et al. utilized daily symptom diaries, an immeasurably important part of the IBS assessment and treatment process. These diaries are organized such that once a day, from pretreatment through post-treatment and sometimes followup, patients are asked to rate on a five-point scale, the severity and distress occasioned by the following symptoms: abdominal pain, abdominal tenderness, diarrhea, constipation, bloating, flatulence, belching, and nausea. The scale ranges from zero to four, with the following accompanying descriptive headings: not a problem; mild severity and distress; moderate severity and distress; severe severity and distress; and debilitating severity and distress. Patients are also asked to document the daily number of successful bowel movements and unsuccessful attempts to defecate, whether or not abdominal problems caused them to avoid certain food or activities, and any medications taken for IBS symptoms. According to Blanchard (1993), such diaries serve an important function for both patient and clinician, in that they allow both to assess bowel patterns and progress throughout treatment. Both empirical and practical utilization of this assessment methodology is also encouraged with the functional bowel disorders.

8.12.4.2 Assessing Psychological and Psychosocial Distress Given the aforementioned relationship between stress and GI symptoms, it is also suggested that patients keep a diary of daily stress similar to the GI symptom diary. However, the assessment burden must obviously be adjusted according to the patient's circumstances. As noted in Blanchard (1993), assessment of IBS patients with self-report inventories of depressive and anxious symptomatology, as well as daily hassles, life experiences, and perhaps learned illness behavior may be instructive, and may also serve as another way of assessing progress throughout treatment. Similarly, assessing these variables may aid in the growing understanding of the functional bowel disorders. 8.12.4.3 Assessing Psychiatric Disorder Lastly, given the estimated prevalence of comorbid diagnosable psychiatric disorders (generally assessed by the fourth edition of the Diagnostic and statistical manual of mental disorders [DSM-IV; American Psychiatric Association, 1994]), in individuals with IBS (and possibly persons suffering from the functional bowel disorders), assessment for these (particularly the anxiety disorders) is also critical. Blanchard (1993) recommends the use of a structured psychiatric interview, particularly the Anxiety Disorders Interview Schedule-IV (ADIS-IV; DiNardo, Brown & Barlow, 1994). 8.12.4.4 Assessing Health Impact of the Functional Bowel Disorders Although neither IBS nor the functional bowel disorders are life-threatening conditions, their impact on sufferers' lives can be significant. The epidemiological study conducted by Drossman et al. (1993) reported health impact data. The authors defined ªhealth impactº operationally by work absenteeism and physician visits, both gastrointestinal and nongastrointestinal. Their results indicated that work absenteeism in persons with functional GI disorders ranged from 29.4% for fecal incontinence to 6.3% for functional abdominal bloating, and was significantly higher than absenteeism for those without functional GI diagnoses (4.2%). Similarly, the mean number of annual GI-related physician visits for individuals with functional GI disorders ranged from 3.53 for fecal incontinence to 0.49 for bloating. Non-GI-related visits were also high, ranging from 9.29 for those with fecal incontinence to 2.45 visits, made by those with

Treatment and/or Management of IBS and the Functional Bowel Disorders functional diarrhea. Again, the mean number of physician visits for individuals with functional GI disorders was significantly higher than that of those without such diagnoses. Also, functional disorders associated with significant pain were generally associated with greater absenteeism and more physician visits than were disorders that did not include pain. Therefore, it seems that having a functional GI disorder impacts well-being in the areas of occupational functioning and perceived health. A unique study conducted in 1987 by Guthrie, Creed, and Whorwell investigated sexual dysfunction in women with IBS. Their results indicated that 83% of the women with IBS reported sexual problems, compared to 30% of women with IBD, and only 16% of those with duodenal ulcers. The authors concluded that the mechanisms for this association are still not known, but in their sample, sexual dysfunction was significantly problematic. 8.12.4.5 Summary Given the interaction of physiological, psychological, and psychosocial factors in IBS, it is necessary to conduct a comprehensive assessment of not only bowel symptoms, utilizing the most recent and standardized criteria, but psychological symptoms, learning history, historical variables, psychiatric disorder, and variables depicting impact on health and occupational/social functioning, in an effort to understand the patient most clearly, and thus formulate an appropriate treatment plan. This section briefly reviewed these issues in IBS and the functional bowel disorders. The following section reviews the treatment literature for IBS and the functional bowel disorders, focusing on both medical and psychological treatments.

8.12.5 TREATMENT AND/OR MANAGEMENT OF IBS AND THE FUNCTIONAL BOWEL DISORDERS

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1988, reviewed all the controlled and randomized trials of pharmacological agents published in the English language. He summarized 43 studies, after having rejected over 50 due to inadequate experimental design, laboratoryinduced dependent variables, and the unpublished status of some reports. He then categorized the remaining studies into the following nine treatment types: antispasmodic/anticholinergics; anticholinergic/barbituate combinations; antidepressants; bulking agents; carminatives (peppermint oil); dopamine antagonists; opiods; tranquilizers/tranquilizer combinations; and miscellaneous treatments, including such drugs as timolol, phenytoin, and diltiazem. Although Klein did not quantitatively review this literature, his qualitative review was based on expected standard of research and years of clinical experience. Klein determined that, based on the literature reviewed, not a single study provided sufficient evidence that any particular medical treatment effectively treats IBS. He then reasoned that the ethical clinician likely should not prescribe ªunproven agents to treat IBS [given that] such treatment may result in needless side effects and expense to the patient without promise of significant benefitº (p. 240). Klein then suggested that treatment of this complicated condition should likely include such elements as education, support, psychotherapy, and appropriate symptom-reducing agents. A review conducted in 1988 by MullerLissner deserves mention, because of its methodological rigor, and as an exemplar of the complexity of IBS and the consequent difficulty operationally defining relevant variables. Muller-Lissner examined the effect of wheat bran, a commonly used treatment for IBS, particularly the constipation-predominant variant, on stool weight and transit time, his chosen definitions of colonic function. Muller-Lissner gathered 35 papers, 27 of which were ultimately summarized and quantitatively reviewed. The results indicated that stool weight and transit time were decreased, regardless of wheat bran treatment, implying that wheat bran cannot be considered an effective treatment for IBS.

8.12.5.1 Medical Treatments for IBS Given the enormous volume of studies conducted to find effective treatments for this common and refractory problem, examining the treatment literature can be quite daunting and seemingly fruitless. For the purposes of the present discussion, medical treatments include pharmacological and dietary interventions, both of which have been reviewed in the past 10 years. In an effort to assess the efficacy of pharmacological intervention for IBS, Klein, in

8.12.5.1.1 Summary These reviews illustrate two critical issues in IBS treatment research. First, the aforementioned volume of treatment literature and the failure of both pharmacological and dietary interventions as assessed by fairly rigorous review necessitate attention to a more holistic, interdisciplinary approach to the treatment/ management of this disorder. Klein's recommendation that treatment include support,

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psychotherapy, and education, as well as appropriate symptom management, is insightful and, as the next section reviewing psychological and psychophysiological interventions will reveal, particularly appropriate. Second, given that IBS is a common and distressing functional problem, it is important to define clinically useful dependent variables when assessing treatment efficacy. While stool weight and transit time are of scientific interest in the study of constipation-predominant IBS, clinically, they provide neither clinician nor patient with relevant information regarding progress in symptom management. As mentioned above by Blanchard (1993), symptombased measurement allows for more accurate assessment, provided clients faithfully track their symptoms on a consistent, preferably daily basis. At present this writer is unaware of published literature regarding the management of FBDs. Accordingly, delineation of clinically useful dependent variables in the study of the functional bowel disorders will likely assist clinical researchers in understanding these problems. As with IBS, it is strongly suggested that comprehensive biopsychosocial assessment of individuals with FBDs, including daily symptom recording, be undertaken. 8.12.5.2 Psychological and Psychophysiological Management of IBS and FBD In a recent qualitative review of this literature, Blanchard and Malamood (1996) identified four effective types of psychological/psychophysiological treatment for IBS and the functional bowel disorders that meet two very important criteria: first, controlled studies exist from at least two different research groups supporting the efficacy of a particular approach; and second, the treatment has been shown to be equivalent or superior to standard medical care and/or well-documented attentionplacebo conditions. The approaches that meet these criteria, according to Blanchard and Malamood (1996), are brief psychodynamic psychotherapy, hypnotherapy, pure cognitive therapy, and combinations of cognitive-behavioral techniques. These approaches will be briefly discussed here, and then will be reviewed and discussed in the context of current important health-care issues, including managed care and the need for services research. 8.12.5.2.1 Brief psychodynamic psychotherapy Svedlund, Sjodin, Ottosson, and Dotevall (1983) reported one of the first controlled trials

of psychotherapy for IBS. In 101 patients recruited from a medical clinic, they compared standard medical care (bulking agents, antispasmodic and tranquilizing medications) to standard medical care plus brief (10 sessions) ªpsychodynamically orientedº psychotherapy, focused on the identification of stress and emotions contributing to bowel symptoms and then the development of effective coping strategies. The results indicated that the psychotherapy condition was more effective than that of standard medical care on reducing reports of abdominal pain, bowel dysfunction, and somatic complaints. Interestingly, symptoms of anxiety and depression improved similarly in both conditions. Guthrie, Creed, Dawson, and Tomenson (1991) compared a similar dynamic psychotherapy condition which also included progressive muscle relaxation to standard medical care (bulking agents and antispasmodics) in 102 patients, also from a medical clinic. Their results indicated that the diarrhea and abdominal pain experienced by the psychotherapy/relaxation group had improved significantly more than that of the patients receiving standard medical care. 8.12.5.2.2 Hypnotherapy In 1984, Whorwell, Prior, and Faragher conducted a study in which they compared home-based audiotaped hypnotherapy, defined as suggestions of general relaxation and mental imagery focused on warmth and relaxation of the gut and abdominal area, specifically, to a medication placebo and physician support. The hypnotherapy group experienced significantly larger reductions in diarrhea and abdominal pain than the control group, and these results were maintained at one-year follow-up. Replicating and extending the work of Whorwell et al. (1984), Harvey, Hinton, Gunary and Barry (1989) reported that such a technique could be utilized as effectively in groups. Covino and Frankel (1993) document its use as well. 8.12.5.2.3 Cognitive-behavioral approaches Approaches to the management of IBS that utilize both cognitive and behavioral elements have included biofeedback (for a detailed review of the use of biofeedback in gastrointestinal disorders, see Whitehead, 1992b) and multicomponent treatments, which include such elements as relaxation training, assertiveness training, and biofeedback (Bennett & Wilkinson, 1985; Lynch & Zamble, 1989; Neff & Blanchard, 1987). All of these studies have found the psychophysiological treatments

Treatment and/or Management of IBS and the Functional Bowel Disorders superior to symptom monitoring controls, and/ or standard medical care. Various investigators have conducted uncontrolled examinations of behavioral and cognitive-behavioral treatment packages consisting of progressive muscle relaxation, thermal biofeedback, educational information and training in stress-coping strategies. Successful pilot studies are often followed by randomized, controlled investigations. One such study, based on preliminary data collected by Neff and Blanchard (1987), was conducted with 19 IBS patients, comparing such a multicomponent treatment (n = 10) with a symptom-monitoring condition (n = 9). The results indicated that 6 of the 10 treated subjects experienced clinically meaningful relief in their GI symptom severity. When the subjects in the symptom-monitoring condition were offered treatment, over half of them improved. In an effort to improve the cost-effectiveness of service delivery, Blanchard and Schwarz (1987) adapted this multicomponent therapy to a small-group format following a three-month symptom-monitoring baseline. Seventeen subjects participated in the trial, with 14 indicating satisfaction with the format (three subjects dropped out). The multicomponent treatment led to significant reductions in abdominal pain and diarrhea, with 9 of 14 subjects experiencing clinically significant improvement. The next step in this research program was to control for nonspecific treatment effects by including a credible attention-placebo condition. Blanchard et al. (1992) reported two randomized, controlled trials of the multicomponent treatment package compared to both a symptom monitoring control and a pseudo-meditation/EEG alpha suppression biofeedback control group. Study 1 included 10 subjects per cell, and was then replicated with approximately 30 subjects per condition (Study 2). In neither study was the multicomponent treatment found to be superior to the meditation/alpha suppression condition, although in Study 1, such trends were evident. Individuals in both therapeutic conditions experienced significant reductions in GI symptoms (as indicated by daily GI diaries) and in psychometric measures of trait anxiety and depression (STAI and BDI). Gastrointestinal symptom change was maintained at six-month follow-up. Blanchard et al. (1992) interpreted the high attention-placebo response in these two studies to indicate that such individuals actively ªconvertedº this condition into an effective treatment. They report that many patients commented that they had utilized the placebo condition to ªrelaxº or ªcalm themselves,º despite being told not to do so (p. 187).

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Physiological measures of hand temperature in these subjects corroborate this interpretation, as these measurements were consistent with those of highly relaxed individuals. Blanchard, Greene, Scharff, and SchwarzMcMorris (1993), sought potentially to isolate another active treatment component in the previously well-validated multicomponent strategy. They chose to evaluate the efficacy of relaxation training in a sample of eight IBS patients. These individuals received 10 sessions of progressive muscle relaxation training combined with home practice. They were compared to eight patients who merely monitored their GI symptoms. Results indicated that the patients in the relaxation condition exhibited significantly more improvement on a composite measure of GI symptom reduction than those who only monitored their symptoms. In addition, 50% of the relaxation group were clinically improved at the end of treatment. One important caveat to these results must be noted: Forty-three percent of subjects initially randomized to the relaxation condition dropped out of this study. Blanchard et al. (1993) reported that this was the highest rate ever reported at the Center for Stress and Anxiety Disorders. They speculated that the structured, relatively impersonal nature of progressive relaxation training may have impacted these individuals negatively, given that there was little individualized, personal attention devoted to their IBS problems. However, the speculative nature of this interpretation must be stressed. Recently, another attempt was undertaken to identify an additional active component of the multifaceted treatment package. Greene and Blanchard (1994) investigated the efficacy of intensive, individualized cognitive therapy as compared to GI symptom monitoring. They randomly assigned 20 subjects to one of the two conditions, and then treated the intervention group with 10 sessions of cognitive therapy adapted from the work of Beck (1976), Meichenbaum (1985), and Persons (1989). The therapy was focused largely on cognitive change, and process measures were included in order to discover whether or not such cognitive change was associated with GI symptom change. The results indicated that the cognitive therapy group showed significantly larger reductions in GI symptoms than that of the monitoring group. Moreover, at post-treatment, 80% of the cognitive therapy group were improved to a clinically significant degree, whereas only 10% of the symptom monitoring group had reached this level. In addition, changes in cognitive measures, particularly automatic thoughts (both positive and negative

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changes were in the desired direction) were significantly associated with reductions in GI symptoms. The beneficial results were maintained over three months. Payne and Blanchard (1995) then compared individual cognitive therapy to self-help support groups, in an effort to control for nonspecific treatment effects. Thirty-four subjects were randomly assigned to either individual cognitive therapy, identical to that described in Greene and Blanchard (1994), a self-help support group, or a symptom-monitoring waitlist control group. Each condition lasted approximately eight weeks. The results indicated significantly greater gastrointestinal symptom reduction in the cognitive therapy group than in either the support or waitlist conditions. In addition, the cognitive therapy group exhibited significant reductions in psychometric measures of depression and anxiety. Importantly, the support group and cognitive therapy were equivalent in initial credibility and patient expectations. As with Greene and Blanchard, these results were maintained at three-month follow-up. Vollmer and Blanchard (1997) compared the effectiveness of individual cognitive therapy with the same intervention adapted for small groups. This study was undertaken in an effort to replicate the results of Greene and Blanchard with a third therapist; and to develop and evaluate a more cost-effective approach to the treatment of patients with IBS. Preliminary results suggest that neither treatment group is significantly more effective than the other, but at least 60% of each group has experienced GI symptom improvement (A. Vollmer, personal communication, September 15, 1995). van Dulmen and colleagues (van Dulmen, Fennis, & Bleijenberg, 1996) reported that in a sample of 25 IBS patients, small-group cognitive therapy significantly reduced IBS symptoms, avoidance behavior, and increased successful coping strategies in the treated group, relative to a waitlist control group. Moreover, these changes were maintained throughout 2.25 year follow-up. 8.12.5.2.4 Summary The results from these studies suggest that IBS is treatable by psychological means, particularly cognitive-behavioral methodology. It appears that cognitive therapy, whether administered individually or in groups is significantly effective for IBS. Given this strong pattern of results, process variables inherent in this treatment modality as applied to the treatment of IBS are now being investigated. The utility of such strategies for the FBDs is unknown at the present time, and both

theoretical and applied research is strongly encouraged. Behavioral/cognitive-behavioral strategies may be useful, given their wide applicability beyond management of bowel symptoms (restructuring negative cognitive schemata, general stress management, etc.), but until empirical data are collected, this remains speculative.

8.12.6 PROFESSIONAL ISSUESÐIBS AND THE FUNCTIONAL BOWEL DISORDERS One of the most important issues to consider when assessing and treating IBS patients, is that due to the psychophysiological nature of this disorder, these individuals are likely to have either sought or received services from providers in a variety of disciplines (e.g., internal medicine, obstetrics/gynecology, gastroenterology, dietetics, psychiatry). It is important for psychologists to develop and maintain positive, interdisciplinary relationships, as open communication and collaboration between professionals will best facilitate comprehensive and efficient patient care. Cost-effectiveness in healthcare has also become an increasingly significant issue, at least in the United States. Maintaining highquality patient care while addressing the need to keep costs down challenges administrators and providers alike. For this reason, continued research focused on ultimately establishing an empirically validated ªfirst-lineº intervention for IBS is suggested. Training providers in many disciplines to offer such interventions in group format (or even self-help format, provided these are empirically supported) may meet this challenge. In the same vein, although the FBDs appear similar to IBS in presentation, further research is necessary to understand etiological and other variables involved in all of these disorders. It is as yet unclear why so few patients seek treatment for IBS, and such data are still minimally available for the FBDs (see Drossman et al., 1995). Continued investigation should clarify these issues. Treatment of the relatively recently delineated FBDs may be difficult at the present time, due to the lack of empirical data supporting any particular intervention. Prudence should therefore be exercised while research continues on the development of effective treatments. Theoretically/empirically driven intervention development is encouraged, as not only should professionals attend to cost issues, but to ethical, high-quality practice, for which we can be accountable.

References 8.12.7 SUMMARY Due largely to research conducted in a variety of disciplines, knowledge about such gastrointestinal disorders as IBS, PUD, IBD, and FBD, has increased tremendously in the past 100 years. The contribution of the medical, nutritional, and behavioral sciences has greatly improved the assessment, diagnosis, classification, and management of these. However, much remains to be done. Clarification of etiological and maintaining variables, as well as the establishment of effective primary and secondary intervention strategies for all of these disorders represent important goals for clinical psychological science in the twenty-first century.

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review pertinent to DSM-IV Psychosomatics, 33(3), 257±270. Fossey, M. D., & Lydiard, R. B. (1990). Anxiety and the gastrointestinal system. Psychiatric Medicine, 8(3), 175±186. Giles, S. L. (1978). Separate and combined effects of biofeedback training and brief individual psychotherapy in the treatment of gastrointestinal disorders. Unpublished doctoral dissertation, Department of Psychology, University of Colorado. Gomborone, J., Dewsnap, P., Libby, G., & Farthing, M. (1995). Abnormal illness attitudes in patients with irritable bowel syndrome. Journal of Psychosomatic Research, 39(2), 227±230. Greene, B., & Blanchard, E. B. (1994). Cognitive therapy for irritable bowel syndrome. Journal of Consulting and Clinical Psychology, 62(3), 576±582. Griffin, P. H. (1985). Irritable bowel syndrome: A final common response to stress? Drug Therapy, 4, 45±61. Guthrie, E., Creed, F., Dawson, D., & Tomenson, B. (1991). A controlled trial of psychological treatment for the irritable bowel syndrome. Gastroenterology, 100(2), 450±457. Guthrie, E., Creed, F. H., & Whorwell, P. J. (1987). Severe sexual dysfunction in women with the irritable bowel syndrome: Comparison of inflammatory bowel disease and duodenal ulceration. British Medical Journal. Harvey, R. F., Gunary, R. N., Hinton, R. A., & Barry, R. E. (1989). Individuals and group hypnotherapy in treatment of refractory irritable bowel syndrome. Lancet, 1, 424±425. Harvey, R. F., Salih, S. Y., & Read, A. E. (1983). Organic and functional disorders in 2000 gastroenterology outpatients. Lancet, 1, 632±634. Jandorf, L., Deblinger, E., Neale, J. M., & Stone, A. A. (1986). Daily versus major life events as predictors of symptom frequency: A replication study. The Journal of General Psychology, 113(3), 205±218. Kellow, J. E., & Langloddeck, P. M. (1989). Advances in the understanding and management of the irritable bowel syndrome. Medical Journal of Australia, 151(2), 92, 95±99. Klein, K. B. (1988). Controlled treatment trials in the irritable bowel syndrome: A critique. Gastroenterology, 95(1), 232±241. Kruis, W., Thieme, C., Weinzierl, M., Schussler, P., Holl, J., & Paulus, W. (1984). A diagnostic score for the irritable bowel syndrome. Its value in the exclusion of organic disease. Gastroenterology, 87(1), 1±7. Latimer, P. R. (1983). Irritable bowel syndrome: Psychosomatic illness review: No. 7 in a series. Psychosomatics, 24 (3), 205±218. Latimer, P. R., Campbell, D., Latimer, M. R., Daniel, E. E., & Waterfall, W. E. (1979). Irritable bowel syndrome: A test of the colonic hyperalgesia hypotheses. Journal of Behavioral Medicine, 2(3), 285±293. Latimer, P. R., Sarna, S. K., Campbell, D., Latimer, M. R., Waterfall, W. E., & Daniel, E. E. (1981). Colonic motor and myoelectrical activity: A comparative study of normal patients, psychoneurotic patients and patients with irritable bowel syndrome (IBS). Gastroenterology, 80(9), 893±901. Lewin, J., & Lewis, S. (1995). Organic and psychosocial risk factors for duodenal ulcer. Journal of Psychosomatic Research, 39(5), 531±548. Liss, J. L., Alpers, D., & Woodruff, R. A. (1973, April/ May). The irritable colon syndrome and psychiatric illness. Diseases of the Nervous System, 34, 151±157. Lydiard, R. B. (1992). Anxiety and the irritable bowel syndrome. Psychiatric Annals, 22(12), 612±618. Lydiard, R. B., Fossey, M. D., Marsh, W., & Ballenger, J. C. (1993). Prevalence of psychiatric disorders in patients

with irritable bowel syndrome. Psychosomatics, 34(3), 229±234. Lynch, P. N., & Zamble, E. (1989). A controlled behavioral treatment of irritable bowel syndrome. Behavior Therapy, 20, 509±523. Lynn, R. B., & Friedman, L. S. (1993). Irritable bowel syndrome. New England Journal of Medicine, 239, 1940±1945. Madhu, S. V., Vij, J. C., Bhatnagar, O. P., Krishnamurthy, N., Anand, B. S., & Chuttani, H. K. (1988). Colonic myoelectrical activity in irritable bowel syndrome before and after treatment. Indian Journal of Gastroenterology, 7(1), 31±33. Manning, A. P., Thompson, W. G., Heaton, K. W., & Morris, A. F. (1978). Towards positive diagnosis of the irritable bowel. British Medical Journal, 2(2), 653±654. Meichenbaum, D. (1985). Stress inoculation training. Elmsford, NY: Pergamon. Mitchell, C. M., & Drossman, D. A. (1987). The irritable bowel syndrome: Understanding and treating a biopsychosocial illness disorder. Annals of Behavioral Medicine, 9(3), 13±18. Muller-Lissner, S. A. (1988). Effect of wheat bran on weight of stool and gastrointestinal transit time: A meta analysis. British Medical Journal, 296, 615±617. Murray, C. D. (1930). A brief psychological analysis of a patient with ulcerative colitis. Journal of Nervous and Mental Disease, 72(6), 617±627. Neff, D. F., & Blanchard, E. B. (1987). A multi-component treatment for irritable bowel syndrome. Behavior Therapy, 18(1), 70±83. North, C. S., & Alpers, D. H. (1994). A review of studies of psychiatric factors in Crohn's Disease: Etiologic implication. Annals of Clinical Psychiatry, 6(2) 117±124. Olden, K. W. (1992). Inflammatory bowel disease: A biopsychosocial perspective. Psychiatric Annals, 22(12), 619±623. Payler, D. K., Pomare, E. W., Heaton, K. W., & Harvey, R. F. (1975). The effect of wheat bran on intestinal transit. Gut, 16(3), 209±213. Payne, A., & Blanchard, E. B. (1995). A controlled comparison of cognitive therapy and self-help support groups in the treatment of irritable bowel syndrome. Journal of Consulting and Clinical Psychology, 63(5), 779±786. Persons, J. B. (1989). Cognitive therapy in practice: A case formulation approach. New York: Norton. Peura, D. A., & Graham, D. Y. (1994). Heliobacter pylori: Consensus reached: Peptic ulcer is on the way to becoming a historic disease. American Journal of Gastroenterology, 89(8), 1137±1139. Radnitz, C. L., & Blanchard, E. B. (1988). Bowel sound biofeedback as a treatment for irritable bowel syndrome. Biofeedback and Self-regulation, 13(2), 169±179. Ritchie, J. (1973). Pain from distention of the pelvic colon by inflating a balloon in the irritable colon syndrome. Gut, 14, 125±132. Schwarz, S. P., & Blanchard, E. B. (1990). Inflammatory bowel disease: A review of the psychological assessment and treatment literature. Annals of Behavioral Medicine, 12(3), 95±105. Schwarz, S. P., Taylor, A. E., Scharff, L., & Blanchard, E. B. (1990). A four-year follow-up of behaviorally treated irritable bowel syndrome patients. Behaviour Research and Therapy, 28(4), 331±335. Snape, W. J., Carlson, G. M., & Cohen, S. (1976). Colonic myoelectrical activity in the irritable bowel syndrome. Gastroenterology, 70(3), 326±330. Suls, J., Wan, C. K., & Blanchard, E. B. (1994). A multilevel data-analytic for approach for evaluation of relationships between daily life stressors and symptomatology: Patients with irritable bowel syndrome. Health Psychology, 13, 103±113.

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.13 Psychological Aspects of Endstage Renal Disease ALAN J. CHRISTENSEN and PATRICIA J. MORAN University of Iowa, Iowa City, IA, USA 8.13.1 INTRODUCTION

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8.13.2 OVERVIEW OF ESRD AND ITS TREATMENT

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8.13.3 PATIENT ADHERENCE TO THE RENAL TREATMENT REGIMEN

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8.13.3.1 Factors Influencing Patient Adherence 8.13.3.1.1 Demographic factors 8.13.3.1.2 Cognitive factors 8.13.3.1.3 Social support 8.13.3.1.4 Personality influences 8.13.3.1.5 Patient coping and adherence 8.13.3.2 Patient 6 Treatment Interactions in ESRD: Influence on Patient Adherence 8.13.3.3 Improving Adherence Through Intervention 8.13.4 PATIENT DEPRESSION IN END-STAGE RENAL DISEASE

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8.13.4.1 Psychological Determinants of Depression 8.13.4.1.1 Control, stress, and depression 8.13.4.1.2 Illness intrusiveness 8.13.4.1.3 Social support and depression 8.13.4.2 Treatment of Depression in ESRD 8.13.5 PSYCHOSOCIAL INFLUENCES ON SURVIVAL

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8.13.6 IMPLICATIONS FOR THE CONSULTING PSYCHOLOGIST

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8.13.7 CONCLUDING OBSERVATIONS

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8.13.8 REFERENCES

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treatment, most of the central clinical issues in this population are common to all chronic medical conditions. The goals of this chapter are to review the major psychological problems faced by ESRD patients and to illustrate the unique features of ESRD and its treatment that impinge upon these problems. In doing so, we will emphasize the importance of considering the interaction between psychological qualities of the individual and aspects of the disease and treatment context. Finally, the chapter discusses

8.13.1 INTRODUCTION The over 240 000 end-stage renal disease (ESRD) patients in the USA face an incurable, life-threatening, chronic disease. In many ways, the illness is unique among medical conditions. The extreme dependence on artificial means for survival and the substantial behavioral demands typically placed on the ESRD patient have few parallels in healthcare. However, despite the uniqueness of the disorder and its 321

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the implications of these issues for the consulting psychologist assisting in the care and screening of the ESRD patient.

8.13.2 OVERVIEW OF ESRD AND ITS TREATMENT The onset of ESRD is defined by an irreversible, total or near-total cessation of kidney function. ESRD afflicts individuals of all ages, ethnic groups, and socioeconomic strata. The disorder is slightly more common among males, and is substantially more prevalent among African Americans (US Renal Data System [USRDS], 1995). ESRD is most commonly due to the advanced complications of another medical condition (e.g., diabetes, hypertension). For other patients the underlying etiology is specific to the renal system (e.g., glomerulonephritis and polycystic kidney disease). Diabetic nephropathy is the most common etiological factor accounting for over onethird of new ESRD cases (USRDS, 1995). From a healthcare policy standpoint, ESRD is unique among chronic medical conditions. The Medicare ESRD entitlement program enacted in 1973 makes all individuals with chronic renal failure eligible for benefits. In 1994 over six billion dollars in healthcare benefits were provided by Medicare for the treatment of ESRD (USRDS, 1995). Only three decades ago, a diagnosis of ESRD meant near-certain death. Upon the cessation of renal function, excess fluid, metabolic toxins, and electrolytes rapidly accumulate in blood and bodily tissues. These substances must be removed by alternative means if the ESRD patient is to survive. Current renal replacement therapies include renal transplantation and several forms of renal dialysis. Renal grafts come from either a cadaveric (brain-dead) or living (typically a first-degree relative) donor. Despite recent advances in immunosuppressive therapy, activation of the patient's immune system resulting in organ rejection and failure remains an important limitation to the potential benefit of transplantation. The success rate for cadaveric donor organs is lowest, with a fiveyear graft survival rate of approximately 53%. For organs from living related donors, a fiveyear graft survival rate of 70% has recently been reported (USRDS, 1995). Despite the superior success rate for living related donation, a large majority (approximately 75%) of renal transplants actually performed involve cadaveric donors (USRDS, 1995). Given a shortage of donor organs and a significant transplant rejection rate, most ESRD patients rely on some form of renal

dialysis as treatment for their condition. Currently, approximately 75% of the ESRD patients in the USA are being treated with one of two forms of renal dialysis (USRDS, 1995). These primary dialysis modalities are center hemodialysis (82% of dialysis patients nationally) and continuous ambulatory peritoneal dialysis (CAPD) (13% of dialysis patients nationally). There is an important difference in the role taken by the patient while undergoing the different forms of dialysis. The center hemodialysis patient is a passive recipient of treatment in the confines of a dialysis center. Hemodialysis achieves removal of toxins and excess fluid via the circulation of blood through an artificial kidney (the dialyzer). The dialysis procedure is performed three times a week by trained technicians in a hospital setting, requiring approximately four hours per session. Hemodialysis treatment commences by way of a vascular connection made between the dialysis machine and the patient, usually through an arteriovenous fistula permanently placed in the patient's forearm. Little participation is allowed or required of the patient while undergoing the procedure. During hemodialysis, patients may experience a number of physiological stressors including rapid drops in blood pressure, excess bleeding at the access site, nausea, muscle cramps, and increased fatigue. For a small minority of patients hemodialysis is carried out at home with assistance from a technician or caregiver. Although mechanically similar procedures are involved, home hemodialysis patients typically have the opportunity to be more actively involved in treatment delivery. In contrast to hemodialysis, CAPD treatment requires the patient to take an active role to ensure treatment success. In CAPD a permanent catheter is surgically implanted in the abdomen. CAPD is carried out manually by the patient. A sterile tube is used to carefully connect the catheter to a bag of sterile dialysis solution (dialysate). The bag is elevated to allow flow of the dialysate into the peritoneal cavity. After this procedure is completed the bag is tucked away under the patient's clothing. Over the next four to six hours (eight hours while sleeping), the patient remains ambulatory as continuous dialysis ensues. During this ªdwell time,º blood filters through the peritoneal membrane leaving toxins behind in the dialysate. After the dwell time is complete, the bag is lowered and the used solution is allowed to drain back into the bag where it is discarded and the procedure begins again. Throughout each step of the procedure the patient must remain highly vigilant in keeping themselves and the dialysis connections sterile to help avoid serious

Patient Adherence to the Renal Treatment Regimen infection (peritonitis) that can begin at the catheter access site. Because of the intricacies of the procedures involved, the successful administration of CAPD is clearly dependent on the patient taking a more active role in his or her treatment compared with patients undergoing hemodialysis. In contrast to the diminished use of home hemodialysis, the popularity of CAPD has steadily increased over the past 10 years (USRDS, 1995). The availability of different treatment modalities, each with its own unique characteristics and patient demands, makes the management of ESRD unique. Hemodialysis, CAPD, and renal transplantation are all medically acceptable treatment alternatives for the large majority of ESRD patients. The different treatments have not generally been linked to differences in patient survival (Flechner, 1994). There is some indication that a successful renal transplant holds certain advantages in terms of patient quality of life (e.g., less emotional distress, greater mobility) (Christensen, Holman, Turner, Smith, & Grant, 1991; Evans et al., 1985). However, there is little evidence of quality of life differences among patients using the various types of renal dialysis (Evans et al., 1985; Simmons, Abress, & Anderson, 1988). In general, the choice of a particular ESRD treatment modality is largely a function of nonmedical factors, including patient and provider preferences and judgements about which modality would provide a particular patient with the highest quality of life.

8.13.3 PATIENT ADHERENCE TO THE RENAL TREATMENT REGIMEN As with most chronic illnesses, patient nonadherence to the prescribed medical treatment regimen is a pervasive problem among individuals receiving chronic renal replacement intervention. Adherence to a multifaceted treatment regimen is required of both renal dialysis and transplantation patients. However, the vast majority of adherence studies have focused on individuals receiving some form of dialysis to compensate for a life-threatening loss of kidney function. In addition to undergoing a regular schedule of time-consuming dialysis treatments, dialysis patients are required to follow a strict medication and dietary regimen. Both CAPD and hemodialysis patients are required to take regular doses of phosphate-binding medication as well as to reduce intake of phosphorus-rich foods (e.g., dairy products) due to the body's inability to excrete phosphorus while undergoing dialysis treatment. For many patients,

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phosphate-binding medication is poorly tolerated by the digestive tract leading to unpleasant gastrointestinal side effects. However, if the medication regimen is not followed, serum phosphorus (P) will rise above normal levels. Sustained elevations in serum P are associated with a variety of complications including renal osteodystrophy, serious decreases in calcium, and subsequent bone demineralization. Hyperkalemia is also a clinically significant problem for all dialysis patients due to the body's inability to regulate serum potassium (K). Dialysis patients are required to follow strict dietary guidelines to maintain safe serum K levels. If dietary guidelines are not followed, serum K will rise and potentially life-threatening cardiovascular complications, such as cardiac arrythmia, can occur. Because of their importance for clinical outcomes, serum P and serum K levels are assessed approximately monthly as part of the routine biochemical monitoring of dialysis patients. Both higher serum P and serum K levels are typically interpreted as reflecting poorer adherence. Serum K values above 6.0 mEq L71 and serum P values greater than 5.5 mg dL71 are generally considered indicative of problematic adherence (Wolcott, Maida, Diamond, & Nissenson, 1986). In the case of hemodialysis treatment, there are also extreme limitations on the amount of fluid that can be safely consumed due to the intermittent nature of the fluid and waste clearance performed by the artificial kidney. Prolonged fluid overload is associated with congestive heart failure, hypertension, dizziness, shortness of breath, and severe muscle cramping, and is potentially life-threatening. Interdialytic weight gain (IWG) is typically used to define adherence to the fluid-intake restrictions. IWG is determined by subtracting the postdialytic weight for the previous treatment session from the predialytic weight for the current session. The values resulting from this computation are believed to be a valid reflection of the amount of fluid that the patient ingests between dialysis sessions (Manley & Sweeney, 1986). Higher IWG values are interpreted as reflecting poorer patient adherence, with values over 2.5 kg (or over 4% of the patient's body weight) generally indicative of problematic adherence (Wolcott et al., 1986). Studies examining the prevalence of nonadherence among renal dialysis patients have typically observed that between 30 and 50% of dialysis patients do not adhere to diet, fluidintake, and medication regiments (Bame, Petersen, & Wray, 1993; Christensen et al., 1992; Schneider, Friend, Whitaker, & Nadhwa, 1991; Weed-Collins & Hogan, 1989; Wolcott et al.,

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1986). In general, these reports indicated that nonadherence is most common for fluid-intake guidelines and somewhat less common for dietary or medication restrictions. This pattern is consistent with reports that adhering to the fluid-intake restrictions may be the most challenging and stressful aspect of the hemodialysis regimen (Baldree, Murphy, & Powers, 1982; Rosenbaum & Ben-Ari Smira, 1986). Less research is available examining rates of nonadherence among patients receiving a renal transplant. Post-transplantation patients are required to follow a strict immunosuppressive medication regimen as well as to remain vigilant about physical changes that may signal organ rejection, infection, or some other medical problem. Immunosuppressive medications can result in a range of side effects including mood changes, changes in appearance (e.g., hypertrichosis, cushnoid appearance), and nausea and vomiting. There is an emerging consensus that patient nonadherence is one of the leading causes of graft failure. One recent study indicated that 78% of cases of renal graft failure in the second year after transplant were due to nonadherence (Kiley, Lam, & Pollak, 1993). Thus, strict adherence to the immunosuppressive medication regimen is a central determinant of treatment success. Because serum levels of many immunosuppressive medications are quite unstable over time and are influenced by a number of factors other than medication adherence (e.g., presence of an acute illness, other medications), reliably determining the rate of nonadherence is difficult (Lemaire, Fahr, & Maurer, 1990). Estimates of nonadherence among transplanted patients have varied greatly ranging from less than 5% to as many as 75% of patients (De Geest et al., 1995; Didlake, Dreyfus, Kerman, Van Buren, & Kahan, 1988; Kiley et al., 1993; Rovelli et al., 1989). This inconsistency across adherence studies is, at least in part, probably due to the lack of reliable and valid methods to assess adherence among transplant patients. To obtain more precise estimates of adherence in this population, researchers need to apply more direct methods of assessing actual medicationtaking behavior. 8.13.3.1 Factors Influencing Patient Adherence Given the prevalence and clinical importance of nonadherence in all forms of renal replacement therapy, it is not surprising that the identification of factors related to adherence has received considerable empirical attention. We review research examining several categories of factors that have been examined in relation to adherence in this population.

8.13.3.1.1 Demographic factors Despite considerable research, few consistent patterns have emerged involving the relation of demographic variables to adherence among ESRD patients. In a number of studies, younger patients have exhibited consistently poorer adherence to various aspects of the prescribed dialysis regimen when compared to older patients (Bame et al., 1993; Boyer, Friend, Chlouverakis, & Kaloyanides, 1990; Christensen & Smith, 1995; Cummings, Becker, Kirscht, & Levin, 1982; Kimmel et al., 1995). A similar effect for age has been observed among renal transplant patients (Didlake et al., 1988). There is also evidence that males exhibit significantly poorer adherence than females when undergoing either dialysis or transplantation (Boyer et al., 1990; De Geest et al., 1995; Kiley et al., 1993; Morduchowicz et al., 1993). No other consistent patterns involving demographic variables have emerged in the ESRD adherence literature. 8.13.3.1.2 Cognitive factors Patient beliefs or appraisals as determinants of medical regimen adherence have received considerable attention. A number of studies involving renal dialysis patients have examined components of the Health Belief Model (HBM; Rosenstock, 1966) as predictors of adherence. The HBM predicts that an individual will carry out a prescribed behavior when the perceived benefits of the action (i.e., a reduction in the threat of adverse health consequences) outweigh any perceived barriers associated with taking the action. Research involving both center hemodialysis patients (Cummings, Becker, Kirscht, & Levin, 1981; Weed-Collins & Hogan, 1989) and renal transplant patients (Kiley et al., 1993) have reported that greater perceived barriers (e.g., ªbeing away from home,º ªmedication costº) were associated with poorer medication adherence. However, with few exceptions other cognitive factors composing the HBM have been found to be unrelated to adherence among ESRD patients (Cummings et al., 1982; Hartmann & Becker, 1978; Rosenbaum & Ben-Ari Smira, 1986). Rosenbaum and Ben-Ari Smira (1986) have suggested that behavioral skills play a more central role in influencing adherence than do health-related beliefs. From this perspective, motivation or intention to adhere may not be closely linked to success in adhering to a regimen that is demanding or requires certain behavioral or self-control skills that some patients may not possess (e.g., the ability to delay gratification). There is some evidence to suggest that selfefficacy expectations are related to fluid-intake

Patient Adherence to the Renal Treatment Regimen adherence among hemodialysis patients as well as medication adherence among transplanted patients (De Geest et al., 1995; Rosenbaum & Ben-Ari Smira, 1986; Schneider et al., 1991). In general, patients who believe that they are capable of performing compliance behaviors are more likely to do so. De Geest et al. (1995) reported that patients perceiving stronger selfefficacy expectations regarding their ability to follow the immunosuppressive regimen exhibited both more favorable medication adherence and better renal graft survival at a five-year follow-up. In a study involving center hemodialysis patients, Rosenbaum and Ben Ari Smira (1986) suggested that an observed association between self-efficacy and adherence was largely due to patientsº perceptions of past adherence success and attributions of that success to their own efforts. This suggests that patient perceptions of past behavior and the specific attributions they make regarding this behavior may play a central role in mediating adherence. A cognitive construct that has often been applied to the prediction of adherence behavior among chronically ill individuals involves individual differences in perceived control over health. The constructs of generalized (Rotter, 1966) and health-specific locus of control (Wallston, Wallston, & DeVellis, 1978) have both received considerable attention in the adherence literature. Locus of control reflects the degree to which individuals believe attaining a desired outcome (e.g., a positive health outcome) is contingent upon their own behavior or some external influence. Despite considerable examination of the relation of locus of control (and health-specific locus of control) to adherence among ESRD patients, no clear consensus regarding the adaptive significance of control expectancies has emerged. There is some evidence that hemodialysis patients with an internal locus of control exhibit more favorable adherence to dietary and fluid-intake aspects of the treatment regimen (Kaplan-DeNour & Czaczkes, 1972; Oldenburg, MacDonald, & Perkins, 1988; Poll & Kaplan-DeNour, 1980). However, other research suggests that internal control expectancies are not significantly related to hemodialysis regimen adherence (Brown & Fitzpatrick, 1988; Schneider et al., 1991; Witenberg et al., 1983). One recent study suggests that health locus of control and perceived self-efficacy may interact in influencing adherence behavior (Christensen, Wiebe, Benotsch, & Lawton, 1996). In this study involving a mixed sample of hemodialysis and CAPD patients, greater generalized selfefficacy expectations (ªperceived health competenceº) were associated with more favorable

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medication regimen adherence only for those patients possessing a strong belief in provider control over health outcomes (i.e., high ªpowerful others health locus of controlº). This pattern suggested that a dialysis patient's perceived ability to manage health effectively is related to adherence only when the patient believes positive health outcomes are contingent upon following the advice and actions of healthcare providers. 8.13.3.1.3 Social support Considerable evidence suggests that the availability and perceived quality of social resources are important correlates of healthrelated behavior in both clinical and nonclinical populations (e.g., Kaplan & Hartwell, 1987; Ruggeiro, Spirito, Bond, Coustan, & McGarvey, 1990). However, limited research is available regarding adherence among ESRD patients. Christensen et al. (1992) examined the effects of social support in the family with regard to patient adherence in a sample of hemodialysis patients. Results indicated that patients holding perceptions of a more supportive family environment characterized by greater cohesion and expressiveness among family members and less intrafamily conflict, exhibited significantly more favorable adherence to fluidintake restrictions than did patients reporting less family support. However, family support was not associated with adherence to dietary restrictions. Other evidence suggests that more favorable marital adjustment among center hemodialysis patients and their spouses is related to better fluid intake but not dietary adherence (Somer & Tucker, 1988, 1992). Similarly, involvment in a stable, dyadic relationship has been associated with more regular dialysis session attendance (Kimmel et al., 1995). Studies involving family support or marital adjustment reflect a relatively consistent association of environmental factors and patient adherence. However, evidence for the role of extrafamilial social support is mixed. Several studies involving samples of center hemodialysis patients found that perceived support was not related to biochemical markers of fluid intake or medication adherence (Boyer et al., 1990; Cummings et al., 1982; Hitchcock, Brantley, Jones, & McKnight, 1992). Kimmel et al. (1995) have suggested the possibility of gender differences in the association of support with adherence. In this study of 149 center hemodialysis patients, a significant association between greater perceived support and more favorable medication adherence was obtained among males but not females. Finally, a study

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examining patient±provider interactions suggests that greater emotional support delivered by dialysis unit nurses to their patients is associated with more favorable fluid-intake adherence (Rorer, Tucker, & Blake, 1988). 8.13.3.1.4 Personality influences Past reviews have concluded that there is no predictable or consistent association between stable, person factors and the adherence behavior of chronically ill patients (Haynes, 1979; Kaplan & Simon, 1990). However, more recent research involving renal dialysis has produced considerably more promising results (e.g., Christensen & Smith, 1995; Christensen, Wiebe, Edwards, Michels, & Lawton, 1996; Christensen, Wiebe, & Lawton, in press; Wiebe & Christensen, 1996). In their review of the Five-Factor Model of personality, Wiebe and Christensen (1996) suggest that conscientiousness may be the personality trait most relevant to adherence behavior. The conscientiousness factor has been described as reflecting a highly purposeful, selfdisciplined style, high in self-control and constraint (Digman, 1990; McCrae & John, 1992). Correspondingly, previous investigators have characterized nonadherence as a selfcontrol problem citing low frustration tolerance, inability to delay gratification, and acting out as underlying causes of the problem (Kaplan-De Nour & Czaczkes, 1972; Rosenbaum and Ben-Ari Smira, 1986). In a study of 72 renal dialysis patients, Christensen and Smith (1995) reported that higher conscientiousness scores from the NEOFive Factor Inventory (Costa & McCrae, 1991) predicted a significant portion of the variance in medication adherence after the effects of relevant demographic variables were controlled. However, conscientiousness was not related to serum K-defined dietary adherence. Empirically and conceptually related to the conscientiousness trait is the construct of learned resourcefulness. Learned resourcefulness as measured by Rosenbaum's (1980) Selfcontrol Schedule (SCS) is believed to reflect one's tendency to apply self-control skills in solving behavioral problems (e.g., use of strategies to delay gratification or tolerate frustration). Rosenbaum and Ben-Ari Smira (1986) reported that lower SCS scores were related to poorer adherence with prescribed fluid-intake restrictions among 53 center hemodialysis patients. A path analysis suggested that learned resourcefulness affected fluid adherence indirectly through self-efficacy expectations and a tendency for high scorers on the SCS to attribute past adherence success to

their own efforts. This suggests that personality characteristics such as learned resourcefulness or conscientiousness may promote adaptive health-related cognitions which are in turn related to more favorable adherence behavior. Another personality factor that may have implications for adherence behavior is trait hostility. Considerable evidence links hostility with poorer physical health outcomes (Smith, 1992). An association between hostility and health may, in part, be mediated by differences in adherence behavior among chronically ill individuals. In the first study directly examining this possibility, Christensen, Wiebe, and Lawton (in press) examined hostility defined on the Cook-Medley (Cook & Medley, 1954) hostility (Ho) scale as a potential determinant of adherence. These authors argued that the generally suspicious, mistrusting, and cynical style of high scorers on the Ho scale may predispose them to reject or disregard the advice of healthcare providers. Christensen, Wiebe, and Lawton (in press) obtained a predicted main effect between higher Ho scale scores and poorer adherence to the phosphorus control regimen. However, moderational analyses indicated that this effect was qualified by the interaction of hostility and powerful others health locus of control (PHLC) expectancies. As depicted in Figure 1, the deleterious effect of hostility on adherence (serum P levels) was most pronounced among patients possessing the expectancy that positive health outcomes are not strongly contingent on the actions or advice of powerful others (i.e., healthcare providers). This suggests that individual differences in trait hostility and control expectancies jointly contribute to patient dietary and medication regimen nonadherence. However, similar analyses failed to show significant effects for hostility or PHLC in the prediction of fluid-intake adherence. In addition to identifying a personality trait potentially related to some aspects of patient adherence, these findings provided some support for the notion that the association between hostility and health may be mediated by differences in patient adherence and other health-related behaviors. Two recent studies suggest that individual differences in attentional style (i.e., self-focusing tendencies, dispositional monitoring) may be associated with medical regimen adherence among ESRD patients (Christensen et al., 1996; Christensen, Moran, & Lawton, in press). In the most recent study, Christensen, Moran et al., (in press) classified 51 center hemodialysis patients on the monitoring dimension from the Miller Behavioral Styles Scale (MBSS; Miller, 1987) and examined the relation of monitoring

Patient Adherence to the Renal Treatment Regimen

7

327

Low PHLC

Serum phosphorus, mg dL–1

High PHLC 6.5 6 5.5 5 4.5 4 Low

High Hostility

Figure 1 Effects of cynical hostility and powerful others health locus of control (PHLC) on patient adherence (from Christensen, Wiebe, & Lawton, in press).

scores to patient adherence. The MBSS was designed to assess the degree to which individuals are characteristically vigilant to threatrelated cues or information. Patients scoring high on the monitoring dimension displayed poorer dietary and fluid-intake adherence relative to patients with less pronounced monitoring tendencies. Moreover, support was found for a mediational model suggesting that a lack of perceived control is largely responsible for the relationship between higher monitoring and poorer regimen adherence. This pattern suggests that among individuals facing severe, relatively uncontrollable chronic health stressors, a characteristic tendency to closely monitor threat-relevant information may exacerbate a perceived lack of control and contribute to patient nonadherence. 8.13.3.1.5 Patient coping and adherence The general stress and coping paradigm (Lazarus & Folkman, 1984) is the foundation of much of the research literature on adaptation in chronic medical illness. Lazarus (1993) has suggested that the adaptational value of a particular type of coping may be a function of the characteristics of the stressful encounter being considered (e.g., controllability of the stressor). One recent study examined the potential interactive pattern involving coping, controllability of the stressor, and patient adherence, in a sample of 60 ESRD patients

undergoing center hemodialysis (Christensen, Benotsch, Wiebe, & Lawton, 1995). Participants were asked to complete two forms of the Ways of Coping Checklist (WOC; Folkman, Lazarus, Dunkel-Schetter, De Longis, & Gruen, 1986). Instructions given for the measure were modified in order to obtain a situation-specific assessment of coping with two distinct stressful encounters differing in terms of how amenable each was to patient control. Directions for the first form asked subjects to recall and describe ªthe last time you experienced a problem with the dialysis procedure itselfº (a relatively uncontrollable situation). Subjects were then asked to respond to the coping items based on how they dealt with the specific problem they had just described. Directions for the second form asked subjects to recall ªthe last time you experienced a problem with your fluid-intake or blood chemistriesº (a relatively controllable situation). Subjects then completed another set of WOC items using this situation as the target incident. Consistent with prediction, the relation of a particular coping strategy to adherence was dependent on the nature of the stressor ;being confronted. When confronting potentially controllable stressors, adherence with fluidintake restrictions was best when patients employed planful problem solving. In contrast, when dealing with less controllable stressors, coping through the use of emotional self-control was associated with better adherence. Thus, the

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adaptive significance of specific coping strategies appeared to depend on the degree to which a specific stressful encounter was actually amenable to control.

8.13.3.2 Patient 6 Treatment Interactions in ESRD: Influence on Patient Adherence Most studies attempting to identify determinants of patient adherence have examined only the main effects of psychosocial variables, while ignoring the tremendous heterogeneity of the ESRD and treatment context. Wiebe and Christensen (1996) have recently argued that relevant contextual or situational features should be explicitly assessed, and the interaction of these factors with patient variables tested directly. This general person-by-situation interaction perspective has a long history in clinical and health psychology (e.g., Dance & Neufeld, 1988; Schultheis, Peterson, & Selby, 1987). For example, across a variety of behavioral outcomes (e.g., smoking cessation, weight loss) individuals with highly active coping styles respond better to interventions that emphasize self-direction rather than direction by the therapist (Dance & Neufeld, 1988). However, the possibility of psychological attributes interacting with medical interventions to predict patient adaptation has rarely been explored. The availability of a number of different treatments for ESRD each presenting a distinct set of patient demands offers a unique opportunity to apply the person 6 context framework to the understanding of patient adherence. From an interactional perspective, adherence should be best when the patient's characteristic or preferred style of coping is consistent with the contextual features or demands of the particular type of renal replacement treatment the patient is undergoing. Christensen, Smith, Turner, Holman, and Gregory (1990) tested this premise in a study of patients undergoing either center hemodialysis (a predominantly staff-directed treatment) or home hemodialysis (a treatment offering greater patient control). Patients were classified according to their characteristic or preferred style of coping using the ªpreference for behavioral involvement scaleº from the Krantz Health Opinion Survey (Krantz, Baum, & Wideman, 1980). Adherence was predicted to be maximized in cases in which coping style classification matched the degree of actual patient control or involvement offered by the two types of dialysis treatment. Consistent with prediction, among patients undergoing the more staff-directed center hemodialysis, a preference for active involvement in one's own healthcare delivery was

associated with significantly worse dietary (i.e., potassium control) adherence. In contrast, for patients undergoing hemodialysis at home, where patient involvement and control is greater, patients with strong preferences for active involvement displayed better adherence. Moreover, among the patients dialyzing at home, those with low preferences for involvement in their own care had higher, clinically elevated serum K levels. Thus, adherence was best explained by the degree of congruency between patient coping style and the levels of involvement permitted or required by the particular treatment patients received. In a related application of the person 6 treatment context hypothesis, Christensen, Smith, Turner, and Cundick (1994) examined medical regimen adherence among 52 stafftreated center hemodialysis patients and 34 selftreated CAPD patients. CAPD is a relatively new form of self-directed dialysis treatment that requires the patient to take an even more active role in treatment delivery to ensure success. Patients were classified on composite measures of coping style reflecting the tendency or motivation to exercise personal control in health contexts and to attend actively to threatrelevant information related to health and treatment. As shown in Figure 2, the results of the crosssectional analyses were consistent with the interactive model. Higher scores on a composite ªinformation vigilanceº dimension were associated with better dietary adherence (i.e., lower serum K levels) for self-treated CAPD patients, but poorer dietary adherence for center hemodialysis patients. In contrast, low information vigilance was associated with better dietary adherence for staff-treated hemodialysis patients, but poorer dietary adherence for CAPD patients. Analysis of prospective follow-up data revealed a highly similar, though only marginally significant pattern. This pattern again suggests that the degree of congruence between patient's coping style and the self-care demands of a prescribed medical treatment is an important determinant of adherence.

8.13.3.3 Improving Adherence Through Intervention Given the clinical importance of adherence among ESRD patients it is not surprising that a number of studies have evaluated the effects of intervention techniques designed to improve adherence. A large majority of studies have evaluated the impact of behaviorally oriented intervention on adherence outcomes. There is modest evidence to suggest that behavioral

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Patient Depression in End-stage Renal Disease

55 54 53 Serum K, T-scores

Hemodialy 52

CAPD

51 50 49 48 47 46 45 Low

High Information vigilance

Figure 2 Effects of information vigilance and dialysis type (i.e., continuous ambulatory peritoneal dialysis (CAPD) vs. hemodialysis) on serum potassium (from Christensen, Smith et al., 1994).

strategies (e.g., self-monitoring, behavioral contracting, and positive reinforcement) are associated with improved adherence among hemodialysis patients (Barnes, 1976; Brantley, Mosley, Bruce, McKnight, & Jones, 1990; Hart, 1979; Hegel, Ayllon, Thiel, & Oulton, 1992; Keane, Prue, & Collins, 1981; Kirschenbaum, Sherman, & Penrod, 1987). However, most of these studies are limited to single-subject or small-group designs. A notable exception is a study evaluating several behavioral techniques to encourage adherence among 87 hemodialysis patients (Cummings et al., 1981). These authors reported that behavioral contracting and the use of various types of positive reinforcement (i.e., lottery tickets or verbal reinforcement) were all associated with significant improvement in both fluid-intake and medication adherence immediately following a six-week intervention period. However, these improvements did not persist at a three-month follow-up assessment. One recent study used a small-group withinsubject design to compare the efficacy of a cognitively oriented intervention (i.e., modification of health-related beliefs) to a behavioral intervention involving reinforcement and patient self-monitoring (Hegel et al., 1992). The cognitive approach was associated with little sustained change in fluid-intake adherence. However, the behavioral intervention did effect

significant and sustained improvement in fluidintake adherence over a two-month period. To date, no adherence intervention studies involving renal transplantation patients have been published. The potential influence of modifying the patientsº social environments or providing applied social support has yet to be examined in this population. However, research involving adherence in populations other than ESRD has provided evidence that interventions aimed at increasing social support are associated with more favorable patient adherence (Levy, 1983). 8.13.4 PATIENT DEPRESSION IN ENDSTAGE RENAL DISEASE Individuals with ESRD face a variety of chronic recurrent stressors, significant lifestyle disruption, and threatened personal control. Thus, it is not surprising that high rates of depressed mood are commonly observed in ESRD patients (Christensen, Holman, Turner, & Slaughter, 1989; Craven, Rodin, & Littlefield, 1988; Hinrichsen, Lieberman, Pollack, & Sternberg, 1989; Rodin & Voshart, 1987; Smith, Hong, & Robson, 1985). Estimates of the prevalence of clinical depression in this population have varied substantially depending on differences in the method and criteria used to

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define a depressive disorder. Craven et al. (1988) reported that 45% of their ESRD patient sample was identified as depressed using the Beck Depression Inventory (BDI: i.e., BDI score greater than 10), but only 12% were diagnosed with major depressive disorder using more stringent criteria from the Diagnostic and statistical manual of mental disorders (3rd ed., DSM-III). Lowry and Atcherson (1980) reported an even higher rate (18%) of DSM-IIIdefined major depression among patients who were just beginning treatment. This finding suggests that psychological distress may be greatest at the outset of treatment. Other evidence suggests the rate of more chronic, moderate depression (i.e., dysthymia) is particularly high in this population (Craven, Rodin, Johnson, & Kennedy, 1987; Hinrichsen et al., 1989). In general, the available data suggest that 15±30% of ESRD patients meet criteria for a diagnosable mood disorder (either major depression or dysthymia). This high rate of depression is made even more alarming by epidemiological research reporting the suicide incidence among hemodialysis patients to be 10±100 times greater than the rate in the general population (Abram, Moore, & Westervelt, 1971; Haenel, Brunner, & Battegay, 1980). A factor complicating the diagnosis of depression in this population is the confound between somatic symptoms of depression and physical symptoms of renal failure and side effects of treatment. Typical uremic symptoms seen in ESRD mimic classic somatic symptoms of depression. Like depression, uremia may produce irritability, cognitive deficits, decreased appetite, insomnia, apathy, and fatigue. Other conditions associated with ESRD such as anemia, electrolyte disturbances, and underlying systemic disease (e.g., diabetes) may also mimic depressive symptoms. In addition, ESRD patients may take medications such as antihypertensives, corticosteroids, and anti-inflammatory agents which can produce depressive side effects. Given the overlap between physical changes associated with ESRD and some symptoms of depression, it is not surprising that nonsomatic or cognitive symptoms of depression appear to more accurately discriminate depressed from nondepressed ESRD patients (Craven et al., 1987; Hinrichsen et al., 1989; Smith et al., 1985). For example, Craven et al. (1987) reported that depressed mood, loss of interest, guilt, and concentration problems were significantly associated with a diagnosis of major depression, while only one somatic indicator, appetite and weight changes, was related to major depression in an ESRD sample. The DSM-III-R depression criteria of loss of energy, insomnia, and

decreased sexual interest, were common in the entire sample and thus were not useful in distinguishing depressed from nondepressed patients. 8.13.4.1 Psychological Determinants of Depression 8.13.4.1.1 Control, stress, and depression Much of the research involving determinants of depression has focused on the considerable loss of control encountered by ESRD patients. One of the most salient examples of a loss of control occurs when a renal transplant patient experiences organ rejection. Several studies suggest that depression is especially common among patients experiencing an unsuccessful transplant (Christensen, Holman et al., 1989; Johnson, McCauley, & Copley, 1982; Simmons et al., 1988). Christensen, Holman et al. (1989) compared levels of depression symptoms in patients with a functioning renal transplant, untransplanted patients on dialysis, and patients forced to return to dialysis after a transplant failure. After controlling for a variety of demographic factors and medical characteristics, patients composing the failed transplant group exhibited significantly greater depression than the other two groups. Patients with a functioning renal transplant had the lowest depression overall. This pattern is consistent with the view that depressive illness is often precipitated by the experience of uncontrollable, negative events (Seligman, 1975). However, this study did not consider potential cognitive moderators (e.g., attributional style) which have been proposed to play a central role in determining whether the experience of a stressor actually results in depressed mood (Abramson, Alloy, & Metalsky, 1989; Abramson, Seligman, & Teasdale, 1978). Research involving renal transplant patients suggests that the experience of uncontrollable, aversive stressors is associated with greater levels of depression. Considerable chronic illness research has also examined the relation of individual differences in control appraisals to depression. Results of this research are mixed. The findings from a number of studies indicate that a more pronounced belief in personal control over health-related outcomes (an internal health locus of control) is associated with more favorable emotional adjustment including less depression (e.g., Devins et al., 1982; Poll & Kaplan-DeNour, 1980). However, other research has reported either no association between perceived control over health and adjustment (Fitzgerald, Tennen, Affleck, & Pransky, 1993) or has actually found greater

Patient Depression in End-stage Renal Disease perceived control to be associated with poorer adjustment (Burish et al., 1984). Several recent studies have suggested that the adaptive significance of control appraisals may depend upon contextual or situational factors (Andrykowski & Brady, 1994; Christensen, Turner, Smith, Holman, & Gregory, 1991; Helgeson, 1992). This research has indicated that the degree of congruence between control beliefs and the constraints of the illness and treatment context may better explain emotional adjustment than either factor in isolation. Christensen et al. (1991) hypothesized that the association between health locus of control and depression in hemodialysis patients would vary as a function of the patient's treatment history (i.e., whether patients had experienced a renal transplant failure) and the severity of their disease. As seen in Figure 3 the results matched the interactive hypothesis. For patients with relatively low disease severity, depression (as measured by the BDI) was quite low overall. However, among severely ill patients, the belief that one's health is controllable (i.e., high internal health locus of control) was associated with less depression for those who had not previously experienced a failed renal transplant. However, high perceived control was associated with greater depression for patients who had returned to dialysis following an unsuccessful transplant. An analogous pattern was obtained when the locus of control measure reflected a belief in healthcare providersº ability to influence health outcomes (i.e., powerful others control). Thus, it appears that the extent to which patientsº control beliefs are congruent with contextual factors (e.g., treatment outcomes) is an important determinant of the adaptiveness of those beliefs. 8.13.4.1.2 Illness intrusiveness ESRD and its treatment are highly disruptive to an individual's lifestyle. Illness-related disruption is common in a variety of life domains including social and vocational functioning, marital, sexual, and family relationships and recreational activities (Devins, Mandins et al., 1990). Devins et al. (1984) suggested that the degree to which an illness interferes with central life domains is an important determinant of depression. Several studies have established that ESRD patients perceiving greater illness-related disruption of lifestyle and social activities report greater negative and less positive mood (Devins et al., 1984; Devins, Mandins et al., 1990; Sacks, Peterson, & Kimmel, 1990). The effect of perceived intrusiveness on depression has been found to persist even after controlling for

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physical disease severity (Sacks et al., 1990). Moreover, subjective appraisals of illness intrusiveness appear more important in terms of adjustment than do apparent objective differences (Devins et al., 1984; Devins, Mandins et al., 1990). Eitel, Hatchett, Friend, Griffin, and Wadhwa (1995) recently examined the effects of perceived illness intrusiveness and clinically rated illness severity on depression in samples of stafftreated hemodialysis and self-treated CAPD patients. In this study, severely ill CAPD patients reported both greater perceived illness intrusiveness and higher levels of depression than did less physically ill CAPD patients. Moreover, CAPD patients with severe illness were more depressed and perceived greater intrusiveness than hemodialysis patients with similarly severe disease. Eitel et al. (1995) suggested that as medical illness becomes more severe, the greater control over treatment afforded by CAPD becomes a burden to very ill patients, resulting in greater perceived illness intrusiveness and ultimately more depression. These findings again underscore the importance of jointly considering both patient appraisals and contextual variables to understand depression in this population. 8.13.4.1.3 Social support and depression Social support has long been associated with better psychological adjustment among the general population as well as a variety of medical populations (Cohen & Wills, 1985; Wortman & Conway, 1985). Similarly, among ESRD patients, various indices of social support have been associated with more favorable adjustment and less depression (Christensen, Turner, Slaughter, & Holman, 1989; Dimond, 1979; Kimmel et al., 1995; Moran & Christensen, 1996; Shulman, Pacey, Price, & Spinelli, 1987; Siegal, Calsyn, & Cuddihee, 1987). For example, in a study of 149 center hemodialysis patients, Kimmel et al. (1995) found higher scores on a generalized measure of perceived social support to be associated with lower BDI scores. Moreover, a lack of social support has been identified as a contributing factor to the high rates of suicide observed among ESRD patients (Abram et al., 1971; Foster & McKegney, 1978). Both theory and empirical evidence suggest that the effect of support on well-being is most pronounced among individuals experiencing a high degree of stress (the ªbuffering model,º Cohen & Wills, 1985). ESRD patients generally experience a high degree of stress relative to individuals not living with a chronic disease. However, there is considerable variability in

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Psychological Aspects of End-stage Renal Disease

35

Untransplanted Failed transplant

Depression

30 25 20 15 10 Low IHLC High IHLC Health locus of control Figure 3

Effects of internal health locus of control (IHLC) and treatment status on adjusted Beck Depression Inventory scores for patients with severe disease (from Christensen et al., 1991).

the degree of impairment and stress different patients face. The buffering model would suggest that the salutary effect of support may be most pronounced among patients with relatively more severe illness. In a test of this model, Christensen, Turner et al. (1989) examined the effects of perceived family support and degree of illness-related impairment on emotional adjustment in a sample of 57 renal transplant patients. Consistent with the buffering model, severely ill patients perceiving a less supportive family environment (i.e., less cohesion and expressiveness and greater conflict) displayed significantly higher levels of depression and anxiety than patients with a more supportive family environment. Among patients experiencing relatively low illness-related impairment (and presumably less stress), the effect of family support was not significant.

ples) to a no-intervention control group. Results indicated both treatment groups experienced significant reductions in depressive symptomatology compared to the control group. There were no significant differences in efficacy between the two active treatment groups. Pharmacologic treatment of depression has also been shown to be effective in this population (Surman, 1987). However, antidepressant medications with pronounced anticholinergic effects (e.g., amitryptiline) are not well tolerated by ESRD patients while the efficacy and safety of some newer medications (e.g., sertraline) has not been well established in this population (see review by Kimmel, Weihs, & Peterson, 1993). These limitations to the use of antidepressant medications increases the need for careful evaluation of nonpharmacological alternatives.

8.13.4.2 Treatment of Depression in ESRD

8.13.5 PSYCHOSOCIAL INFLUENCES ON SURVIVAL

The psychological treatment of depression in the ESRD population has received surprisingly little attention. Descriptive reports suggest that psychotherapeutic intervention for depression in this population often follows a behavioral or cognitive-behavioral orientation (Kirschenbaum, 1991). One recent study provides evidence that depression among ESRD patients can be successfully treated with psychotherapy (Hener, Weisenberg, & Har-Even, 1996). This controlled study compared the effectiveness of eight sessions of supportive therapy or cognitive-behavioral therapy (involving cou-

The high rate of depression typically observed among ESRD patients is an important clinical problem as it poses a clear detriment to patient quality of life. Growing evidence suggests that depression may also be related to earlier mortality among ESRD patients (Burton, Kline, Lindsay, & Heidenheim, 1986; Peterson et al., 1991; Shulman, Price, & Spinelli, 1989). In the most recent study, Peterson et al. (1991) reported that a cognitive item subset from the BDI (somatic items were eliminated to avoid a confound with disease severity) was a significant predictor of renal dialysis patient mortality over

Implications for the Consulting Psychologist a two-year follow-up period. This effect persisted after controlling for several more traditional mortality risk factors (e.g., age, medical comorbidity). Moreover, Burton et al. (1986) reported item level analyses that suggest a subset of depression symptoms involving selfdeprecating thoughts, pessimism, and helplessness may be particularly important determinants of earlier mortality. Several other studies involving similar methodologies have, however, failed to replicate a relationship between depression and survival (Christensen, Wiebe, Smith, & Turner, 1994; Devins, Mann et al., 1990; Husebye, Westlie, Styrvoky, & Kjellstrand, 1987). A second psychosocial variable that has been examined as a predictor of earlier mortality in both nonclinical and medically ill populations is perceived social support (Berkman, 1985). However, evidence for the role of support in influencing survival among ERSD patients is limited. Recently, Christensen et al. (1994) reported that perceived family support is a significant predictor of survival among renal dialysis patients. As seen in Figure 4, estimated five-year mortality rates among patients classified as having low family support were nearly three times higher than estimated mortality for high support patients (52% vs. 18%, respectively). The effect of family support was independent of the significant predictive influence of demographic and biochemical risk factors (i.e., age, blood urea nitrogen levels). A study by Friend, Singletary, Mendell, and Nurse (1986) provided initial evidence that participation in a supportive group intervention may prolong survival among hemodialysis patients. Center hemodialysis patients participating in a largely unstructured patient support group were significantly more likely to be alive at the end of the 10-year study period compared to nonparticipants. Although this study was largely uncontrolled (e.g., no random assignment or control group comparison) the data underscore the need for further research examining the salutary influence of applied social support. One of the most important unanswered questions from survival research involves a lack of evidence concerning the mediational mechanisms that may underlie the effect of depression or family support on survival. An often cited model linking a lack of social support to increased morbidity and mortality involves the influence of support on health or adherence behaviors (Cohen, 1988). Consistent with this view, an association between family support and patient adherence has been demonstrated (e.g., Christensen et al., 1992).

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Moreover, there is evidence that patient nonadherence is associated with earlier mortality in this population (Wolcott et al., 1986). Unfortunately, the only published study to date examining the potential mediating role of patient adherence failed to support the model (Christensen et al., 1994). A second potential mechanism mediating the association of psychosocial factors to mortality involves diminished immunocompetence. Indirect evidence for the role of immune functioning comes from several sources. There is clear evidence of diminished cellular immunocompetence among ESRD patients (Keane & Maddy, 1989). In addition, systemic infection (septicemia) is a leading cause of death in this population (USRDS, 1995). Finally, both a lack of social support and elevated depression have been associated with diminished immunocompetence (O'Leary, 1990). However, no research has simultaneously evaluated the effect of immune functioning and support or depression on ESRD patient outcomes. Such evidence is needed to clarify the role that psychosocial factors may play in influencing patient mortality.

8.13.6 IMPLICATIONS FOR THE CONSULTING PSYCHOLOGIST Mental health professionals have long served in a consultant role to renal dialysis and transplantation programs. However, until recently, little empirical knowledge existed for practitioners to draw from in approaching the range of clinical problems seen in this unique patient population. Several target problems or issues compose the core of the referral questions a consulting psychologist is likely to receive from a renal dialysis or transplantation program. In reviewing the activities of our own clinical health psychology consultation service over a 12-month period, the most common consultation request involved the assessment and treatment of depression (55% of ESRD patient referrals). Assessing depression in this population presents a unique challenge given the confounding of physical changes secondary to a patient's medical condition with somatic or vegetative signs of depression. However, the modification of commonly used depression inventories and diagnostic schemes to emphasize cognitive symptoms of depression (e.g., guilt, anhedonia) rather than the less specific somatic symptoms (e.g., appetite changes, fatigue), has proven to be a useful strategy for valid depression assessment (Peterson et al., 1991; Sacks et al. 1990; Smith et al., 1985). For example, Sacks

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Estimated proportion alive

1.1 1.0 0.9 High family support

0.8 0.7 0.6 0.5

Low family support

0.4 0

10

20

30

40

50

60

Elapsed time, months Figure 4 Estimated survival functions for high and low family support (from Christensen, Wiebe et al., 1994).

et al., (1990) have reported that items 1±14 of the widely used BDI compose a ªcognitive depression indexº that is less confounded by the severity of medical illness than the full-scale BDI. Use of this BDI item subset provides clinicians with a brief, valid assessment tool for depression screening. Empirical evaluations of treatment efficacy for depressive illness in this population are extremely limited. Moreover, there is some evidence that depression among ESRD patients frequently goes untreated (Smith et al., 1985). There is insufficient data at this time to suggest which treatment approach may provide the greatest efficacy in this population. The results of comparative treatment studies (including both psychological and pharmacological intervention) involving depression in primary psychiatric patients (i.e., without comorbid medical problems) suggest few significant differences in outcome between treatments (Elkin et al., 1989). Accordingly, we would expect few betweentreatment differences in outcome among depressed ESRD patients. Thus, we suggest that the specific choice of treatment strategy is less important than is simply initiating some form of active intervention for the depressed ESRD patient. Patient nonadherence to the prescribed medical regimen reflects the second most common reason (30% of referrals to our service) for psychological consultation in this population. The available empirical studies suggest that behaviorally oriented intervention (e.g., self-monitoring, behavioral contracting) may provide an effective strategy for facilitating

patient adherence (e.g., Cummings et al., 1981; Hegel et al., 1992). Studies of adherence determinants in this population have also produced a number of findings with implications for patient screening. For example, patients low in conscientiousness or high in hostility may be at risk for difficulties in adherence to the prescribed renal treatment regimen and may warrant early intervention. An emerging challenge for the clinical health psychologist involves developing strategies for using psychosocial assessment data to assist in selecting the most beneficial medical or surgical treatment alternative for a given patient. Various types of renal dialysis (e.g., hemodialysis, CAPD) as well as renal transplantation are all medically acceptable treatment alternatives for the large majority of ESRD patients. Thus, medical considerations alone are not sufficient to identify the most appropriate treatment alternative. The clinical literature suggests that psychosocial factors are often considered by healthcare providers when recommending a treatment alternative for a particular ESRD patient (Goodenough, Lutz, & Gregory, 1988; Gulledge, Bustza, & Montague, 1983; Knight, 1981). However, until recently there was little empirical basis for making such recommendations. The interactive framework discussed above has direct implications for choosing among medical treatment alternatives for ESRD patients in an effort to optimize outcomes. For example, patients possessing a highly active or vigilant style of coping with their healthcare should demonstrate better

References adherence and adjustment when undergoing more self-directed renal treatments (e.g., CAPD carried out at home; renal transplantation). In contrast, patients with a more passive coping orientation or those who choose to distract themselves from stressful stimuli are likely to show better adjustment when undergoing a staff-controlled treatment (e.g., hemodialysis treatment in a dialysis center). 8.13.7 CONCLUDING OBSERVATIONS The medical management of ESRD has benefited from substantial technological advances over the past several decades. As the use of life-sustaining technology has become more routine, an increasing focus on psychosocial and behavioral issues has emerged. Accordingly, clinical psychology is in a position to make a significant contribution to the care of the ESRD patient. Knowledge from past research provides a basis for identifying patients at risk for behavioral (e.g., nonadherence) and emotional (e.g., depression) difficulties, both of which seem clearly linked to poorer patient outcomes. Moreover, a growing body of literature suggests that psychological assessment information can be useful in the selection of the most beneficial renal treatment modality for a particular patient. Future research can more clearly evaluate psychological intervention strategies that may be useful for enhancing patient adherence, improving emotional wellbeing, and ultimately prolonging patient survival. We believe clinical research with the ESRD population provides a unique opportunity to apply psychological concepts and procedures to improve patient outcomes as well as to contribute to health psychology theory and research more generally. ACKNOWLEDGMENT Preparation of this chapter was supported in part by National Institute of Diabetes and Digestive and Kidney Diseases grant DK49129±01, awarded to Alan Christensen. 8.13.8 REFERENCES Abram, H. S., Moore, G. L., & Westervelt, F. B. (1971). Suicidal behavior in chronic dialysis patients. American Journal of Psychiatry, 127, 1199±1204. Abramson, L. Y., Alloy, L. B., & Metalsky, G. I. (1989). Hopelessness depression: A theory-based subtype of depression. Psychological Review, 96, 358±372. Abramson, L. Y., Seligman, M. E. P., & Teasdale, J. (1978). Learned helplessness in humans: Critique and reformulation. Journal of Abnormal Psychology, 87, 49±74. Andrykowski, M. A., & Brady, M. J. (1994). Health locus of control and psychological distress in cancer patients:

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Buckle, S. (1990). Illness intrusiveness and quality of life in end-stage renal disease: Comparison and stability across treatment modalities. Health Psychology, 9, 117±142. Devins, G. M., Mann, J., Mandin, H., Paul, L. C., Hons, R. B., Burgess, E. D., Taub, K., Schorr, S., Letourneau, P. K., & Buckle, S. (1990). Psychosocial predictors of survival in end-stage renal disease. Journal of Nervous and Mental Disease, 178, 127±133. Didlake, R. H., Dreyfus, K., Kerman, R. H., Van Buren, C. T., & Kahan, B. D. (1988). Patient noncompliance: A major cause of late graft failure in cyclosporine treated renal transplants. Transplantation Proceedings, 20, 63±69. Digman, J. M. (1990). Personality structure: Emergence of the five-factor model. Annual Review of Psychology, 41, 417±440. Dimond, M. (1979). Social support and adaptation to chronic illness: The case of maintenance hemodialysis. Research in Nursing and Health, 2, 101±108. Elkin, I., Shea, M. T., Watkins, J. T., Imber, S. D., Sotsky, S. M., Collins, J. F., Glass, D. R., Pilkonis, P. A., Leber, W. R., Docherty, J. P., Fiester, S. J., & Parloff, M. B. (1989). NIMH Treatment of Depression Collaborative Research Program: General effectiveness of treatments. Archives of General Psychiatry, 46, 971±982. Evans, R. W., Manninen, D. L., Garrison, L. P., Jr., Hart, L. G., Blagg, C. R., Guttman, R. A., Hull, A. R., & Lowrie, E. G. (1985). The quality of life of patients with end-stage renal disease. New England Journal of Medicine, 312, 553±559. Eitel, P., Hatchett, L., Friend, R., Griffin, K. W., & Wadhwa, N. K. (1995). Burden of self-care in seriously ill patients: Impact on adjustment. Health Psychology, 14, 457±463. Fitzgerald, T. E., Tennen, H., Affleck, G., & Pransky, G. S. (1993). The relative importance of dispositional optimism and control appraisals in quality of life after coronary artery bypass surgery. Journal of Behavioral Medicine, 16, 25±43. Flechner, S. M. (1994). Current status of renal transplantation: Patient selection, results, and immunosuppression. Urologic Clinics of North America, 21, 265±282. Folkman, S., Lazarus, R. S., Dunkel-Schetter, DeLongis, A., & Gruen, R. J. (1986). Dynamics of a stressful encounter: Cognitive appraisal, coping, and encounter outcomes. Journal of Personality and Social Psychology, 50, 992±1003. Foster, F. G., & McKegney, F. P. (1978). Small group dynamics and survival on chronic hemodialysis. International Journal of Psychiatry in Medicine, 8, 105±116. Friend, R., Singletary, Y., Mendell, N. R., & Nurse, H. (1986). Group participation and survival among patients with end-stage renal disease. American Journal of Public Health, 76, 670±672. Goodenough, G. K., Lutz, L. J., & Gregory, M. C. (1988). Home-based renal dialysis. American Family Physician, 37, 203±214. Gulledge, A. D., Bustza, C., & Montague, D. K. (1983). Psychosocial aspects of renal transplantation. Urologic Clinics of North America, 10, 327±335. Haenel, T. H., Brunner, F., & Battegay, R. (1980). Renal dialysis and suicide: Occurrence in Switzerland and in Europe. Comprehensive Psychiatry, 21, 140±145. Hart, R. (1979). Utilization of token economy within a chronic dialysis unit. Journal of Consulting and Clinical Psychology, 47, 646±648. Hartman, P. E., & Becker, M. H. (1978). Noncompliance with prescribed regimen among hemodialysis patients: A method of prediction and educational diagnosis. Dialysis and Transplantation, 7, 978±989. Haynes, R. B. (1979). Determinants of compliance: The disease and the mechanics of treatment. In R. B. Haynes,

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Krantz, D. S., Baum, A., & Wideman, M. V. (1980). Assessment of preferences for self-treatment and information in health care. Journal of Personality and Social Psychology, 39, 977±990. Lazarus, R. S. (1993). Coping theory and research: Past, present, and future. Psychosomatic Medicine, 55, 234±247. Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer. Lemaire, M., Fahr, A., & Maurer, G. (1990). Pharmacokinetics of cyclosporine: Inter- and intra-individual variations and metabolic pathways. Transplantation Proceedings, 22, 1110±1112. Levy, R. L. (1983). Social support and compliance: A selective review and critique of treatment integrity and outcome measurement. Social Science in Medicine, 17, 1329±1338. Lowry, M. R., & Atcherson, E. (1980). A short-term follow-up of patients with depressive disorder on entry into home dialysis training. Journal of Affective Disorders, 2, 219±227. Manley, M., & Sweeney, J. (1986). Assessment of compliance in hemodialysis adaptation. Journal of Psychosomatic Research, 30, 153±161. McCrae, R. R., & John, O. P. (1992). An introduction to the Five-Factor Model and its applications. Journal of Personality, 60, 175±215. Miller, S. M. (1987). Monitoring and blunting: Validation of a questionnaire to assess styles of information-seeking under threat. Journal of Personality and Social Psychology, 52, 345±353. Moran, P. J., & Christensen, A. J. (1996, March). Social Support, Personality, and Patient Adaptation in Hemodialysis. Paper presented at the Fourth International Congress of Behavioral Medicine, Washington, DC. Morduchowicz, G., Sulkes, J., Aizic, S., Gabbay, U., Winkler, J., & Boner, G. (1993). Compliance in hemodialysis patients: A multivariate regression analysis. Nephron, 64, 365±368. Oldenburg, B., MacDonald, G. J., & Perkins, R. J. (1988). Factors influencing excessive thirst and fluid intake in dialysis patients. Dialysis and Transplantation, 17, 21±40. O'Leary A. (1990) Stress, emotion, and human immune function. Psychological Bulletin, 108, 363±382. Peterson, R. A., Kimmel, P. L., Sacks, C. R., Mesquita, M. L., Simmens, S. J., & Reiss, D. (1991). Depression, perception of illness and mortality in patients with endstage renal disease. International Journal of Psychiatry in Medicine, 21, 343±354. Poll, I. B., & Kaplan-DeNour, A. (1980). Locus of control and adjustment to chronic hemodialysis. Psychological Medicine, 10, 153±157. Rodin, G., & Voshart, K. (1987). Depressive symptoms and functional impairment in the medically ill. General Hospital Psychiatry, 9, 251±258. Rorer, B., Tucker, C. M., & Blake, H. (1988). Long-term nurse±patient interactions: Factors in patient compliance or noncompliance to the dietary regimen. Health Psychology, 7, 35±46. Rosenbaum, M. (1980). A schedule for assessing selfcontrol behaviors: Preliminary findings. Behavior Therapy, 11, 109±121. Rosenbaum, M., & Ben-Ari Smira, K. (1986). Cognitive and personality factors in the delay of gratification in hemodialysis patients. Journal of Personality and Social Psychology, 51, 357±364. Rosenstock, I. M. (1966). Why people use health services. Millband Memorial Fund Quarterly, 44, 94±127. Rotter, J. B. (1966). Generalized expectancies for internal versus external control of reinforcement. Psychological Monographs, 80 (whole issue No. 609, 1). Rovelli, M., Palmeri, D., Vossier, E., Bartus, S., Hull, D., & Schweizer, R. (1989). Noncompliance in organ transplant

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.14 Respiratory Disorders THOMAS L. CREER and DEIRDRE A. LEVSTEK Ohio University, Athens, OH, USA 8.14.1 INTRODUCTION

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8.14.2 DISEASE STATE

340 340 340 341 342 342 343

8.14.2.1 Definitions of Asthma and COPD 8.14.2.1.1 Asthma 8.14.2.1.2 Chronic obstructive pulmonary disease 8.14.2.2 Epidemiology of Respiratory Disorders 8.14.2.3 Morbidity Associated with COPD and Asthma 8.14.2.4 Mortality Related to COPD and Asthma 8.14.3 FACTORS ASSOCIATED WITH COPD AND ASTHMA 8.14.3.1 8.14.3.2 8.14.3.3 8.14.3.4

Environmental Risks for COPD and Asthma Individual Factors Associated with COPD and Asthma Genetic Contributions to Respiratory Disease Prevention of Respiratory Disease

8.14.4 MEDICAL MANAGEMENT OF COPD AND ASTHMA

343 343 343 344 344 344 344 345 345 345 346 346

8.14.4.1 Evaluation of Respiratory Disorders 8.14.4.2 Ratings of Illness Severity and Prognosis 8.14.4.3 Medications used to Treat COPD and Asthma 8.14.4.3.1 Maintenance or preventive medications 8.14.4.3.2 Bronchodilators 8.14.4.3.3 Oxygen therapy 8.14.5 PSYCHOLOGICAL ASPECTS OF COPD AND ASTHMA

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8.14.5.1 Impact on the Individual 8.14.5.1.1 Emotional impact 8.14.5.1.2 Cognitive impact 8.14.5.1.3 Behavioral impact 8.14.5.2 Impact on Family and Social Environment

347 347 348 349 349

8.14.6 ADHERENCE TO TREATMENT REGIMENS

350 350 351 351 351 351

8.14.6.1 Medication Compliance 8.14.6.2 Lifestyle Changes 8.14.6.2.1 Activity restrictions 8.14.6.2.2 Environmental prescriptions 8.14.6.2.3 Smoking cessation 8.14.7 PSYCHOLOGICAL INTERVENTIONS FOR COPD AND ASTHMA 8.14.7.1 Pulmonary Rehabilitation for COPD 8.14.7.2 Asthma Management 8.14.7.2.1 Stage 1: Psychotherapy, particularly psychoanalysis 8.14.7.2.2 Stage 2: Behavioral approaches 8.14.7.2.3 Stage 3: Self-management 8.14.8 IMPLICATIONS FOR HEALTH AND CLINICAL PSYCHOLOGY

352 352 353 353 353 353 354 354 354 355

8.14.8.1 COPD 8.14.8.1.1 Smoking cessation 8.14.8.1.2 Assessment

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Respiratory Disorders 355 355 355 355 355 355 356 356 356

8.14.8.1.3 Integration of behavioral skills 8.14.8.1.4 Extension of behavioral expertise 8.14.8.2 Asthma 8.14.8.2.1 Medication compliance 8.14.8.2.2 Avoidance of attack triggers 8.14.8.2.3 Environmental control 8.14.8.2.4 Refinement of self-management processes 8.14.8.2.5 Maintenance of self-management skills 8.14.8.2.6 Design of studies 8.14.9 CONCLUSIONS

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8.14.10 REFERENCES

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8.14.1 INTRODUCTION Behavioral scientists are frequently asked to develop techniques to help treat chronic obstructive pulmonary disease (COPD) and asthma in an effective and efficient manner. Terms such as self-care, collaborative management, and self-managementÐdenoting processes traditionally associated with behavioral scienceÐhave increasingly entered the vocabulary of medical and health care personnel. Knowledge about the pathology of asthma and COPD has led to conclusions that environmental and behavioral management are, in most cases, as important as medical treatment in the control of chronic respiratory disorders. Furthermore, risk prediction and prevention efforts, both involving behavioral change, are increasingly viewed as ways to lessen the impact of morbidity and mortality related to asthma and COPD. The range of respiratory disorders is expansive, and includes patients with airflow limitation who exhibit a variety of symptoms and responses to treatment. Two major types of chronic respiratory diseases, asthma and COPD, are the most likely types of chronic respiratory conditions a health or clinical psychologist is likely to encounter. Optimal application of behavioral interventions requires a basic knowledge of these respiratory disorders and their management. 8.14.2 DISEASE STATE 8.14.2.1 Definitions of Asthma and COPD Asthma, emphysema, and chronic bronchitis are chronic diseases that involve airflow obstruction due to a narrowing of the airways. At one time, the three conditions were subsumed under the title of COPD. In 1987, however, COPD was defined as ªa disorder characterized by abnormal tests of expiratory flow that do not change over several months observationº (American Thoracic Society, 1987, p. 225). The definition was written to emphasize that irreversibility of lung function is likely in COPD, consisting of emphysema and

chronic bronchitis, and distinguishes the condition from asthma where reversibility is common. More recently, the American Thoracic Society (1995, p. 578) revised the definition of COPD, and described it as a ªdisease state characterized by the presence of airway obstruction due to chronic bronchitis or emphysema; the airflow obstruction is generally progressive, may be accompanied by airway hyperreactivity, and may be partially reversible.º Symptoms likely to signal acute or chronic obstruction, such as wheeze, cough, and dyspnea, are not in themselves diagnostic as they occur in many types of pulmonary disease, including both COPD and asthma (Petty, 1990). In addition, differences between chronic bronchitis and late-onset asthma in adults are subtle and by no means clear-cut (Bernstein, 1988). The major difference between COPD and asthma is the salience of inflammation, involving complex cellular and chemical mediators, as a characteristic of asthma but not of COPD. 8.14.2.1.1 Asthma The American Thoracic Society (1993) suggested that asthma could be distinguished from COPD in that a patient's clinical status is variable, and involves airway hyperreactivity associated with irritants such as dust, allergens, and smoke or fumes. The National Asthma Education Program (1991, p. 1) defined asthma as a lung disease with the following characteristics: (1) airway obstruction that is reversible (but not completely in some patients) either spontaneously or with treatment; (2) airway inflammation; and (3) airway hyperreactivity to a variety of stimuli.

Two slightly different definitions of asthma are found in the International consensus report on the diagnosis of asthma (National Heart, Lung, and Blood Institute, 1992) and the Global initiative for asthma (National Institutes for Health, 1995). Despite the fact that each successive definition has become longer and more complex, any of the three reports established a set of guidelines that can be followed to

Disease State treat asthma. Indeed, there are indications that when guidelines presented by the National Asthma Education Program (1991) are followed, improvement in the treatment of patients with asthma occurs (Lantner & Ros, 1995). It is recommended that any set of guidelines be adopted by medical and behavioral scientists who work with asthma. Unfortunately, as Marwick (1995) pointed out, only one of 10 physicians surveyed in the US was familiar with or knew that the National Asthma Education Program (1991) guidelines had been issued. This finding not only has implications for the control of asthma, but it suggests problems in professional education that must be considered by clinical and health psychologists (Creer, Levstek, & Reynolds, in press). Over the years, three characteristics of asthma have made the disorder especially challenging to treat: (i) the intermittency; (ii) variability; and (iii) reversibility of airway obstruction. These factors are a function of individual differences among patients, and variations in the number of asthma triggers, severity of disease, degree of patient and medical control, and other mediating variables (Creer, 1979, 1982; Renne & Creer, 1985). Each characteristic must be analyzed in order to understand and treat asthma. Intermittency refers to the frequency of asthma episodes. The frequency of attacks can range from several episodes over a period of days to the passage of several months or even years between attacks. One patient may experience severe asthma episodes and then not have any symptoms for an extended period of time, whereas another patient may have symptoms most days of the year (what is called perennial asthma). Both medical and behavioral scientists must accept that intermittency is a common characteristic of asthma, otherwise a false sense of control over asthma may be assumed by both health care professionals and patients. Patients, in particular, may not expect future episodes and be unprepared to deal with them (Renne & Creer, 1985). Variability is the severity of asthma across patients or within a given patient. Both the National Asthma Education Program (1991) and the International consensus report (National Heart, Lung, and Blood Institute, 1992) offered criteria for judging both asthma severity and asthma attacks as mild, moderate, and severe. According to a report edited by Spector and Nicklas (1995), severity should be rated by analyzing a combination of objective and subjective criteria; these include patient symptoms, activity restrictions, pulmonary function, hyperresponsiveness of airways, health care usage, and medication use. As noted, it is

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common for asthma severity to be rated as mild, moderate, or severe. However, the report by Spector and Nicklas (1995, p. 749) stressed that ªasthma severity is a continuum across the population and often within a given individual, and that some characteristics of asthma may be more applicable in defining the severity in one patient, whereas different characteristics may be more applicable in another.º Severity classification can be misleading to patients; it is again important to recognize that patient expectations are influenced by their perceptions of episode severity. If most of their attacks are mild, patients are often unprepared to help control more severe episodes (Renne & Creer, 1985). Reversibility refers to the degree to which airway obstruction reverses either spontaneously or with appropriate treatment. Reversibility has long been a distinguishing feature of asthma, but thought regarding the characteristic is changing as researchers learn more about the nature of inflammation in asthma and its underlying pathology (Sanford, Weir, & Pare, 1996; Spector & Nicklas, 1995). Creer and Levstek (1997) noted that the concept of reversibility is complicated. They pointed out that airway reversibility, like severity, must be perceived as a continuum: whereas most patients show complete reversibility of airway obstruction when treated appropriately, others experience some degree of airway obstruction even with intensive medical treatment. The fact that reversibility of airway obstruction can occur either in response to therapy or spontaneously presents a challenge when attempting to show cause and effect relationships between treatment and remission of asthma symptoms (Creer, 1982; Creer & Levstek, 1997). 8.14.2.1.2 Chronic obstructive pulmonary disease Until recently, there was no commonly accepted definition for COPD (Snider, 1995). The American Thoracic Society (1995), in their guidelines for the treatment of COPD, developed a working definition for COPD that includes three classifications: airflow obstruction, emphysema, and chronic bronchitis. These characteristics are as follows: (i) Abnormal tests of expiratory flow or airway obstruction are prominent in COPD patients. They are indicative of airflow obstruction, which is progressive in nature. Airflow obstruction has been attributed to the alteration of the small airways and, to some degree, to bronchoconstriction. (ii) Emphysema is a state of progressive airflow obstruction due to abnormal permanent enlargement of airspaces distal to the terminal

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bronchioles and alveoli. The destruction is described as a lack of uniformity in the pattern of airspace enlargement, and is a major cause of airflow obstruction for COPD patients with emphysema. That the definition of emphysema is in terms of pathological changes was emphasized by the American Thoracic Society (1995). (iii) Chronic bronchitis is the presence of a persistent mucous cough of no known etiology. Specifically, chronic bronchitis is defined clinically by the persistence of a chronic productive cough for three months or more in each of two successive years in patients in whom other causes of chronic cough have been ruled out. The American Thoracic Society definition excludes patients with either chronic bronchitis or emphysema who do not exhibit persistent airflow obstruction, and includes a subset of asthma patients in whom airflow obstruction is not totally reversible (Snider, 1995). The symptom configuration for COPD patients and their treatment varies according to the severity and progression of the disease state. COPD normally follows a progressive course in that patients exhibit a rapid decline in lung function (measured by lung volume), symptoms of cough and dyspnea, more acute chest illness, and later in the disease, hypoxemia (American Thoracic Society, 1995). 8.14.2.2 Epidemiology of Respiratory Disorders Prevalence rates for COPD and asthma continue to climb. The American Thoracic Society (1995) estimated that 14 million people, about 3±5% of the population in the USA, suffer from COPD; this represents a 42% increase in prevalence since 1982. The prevalence of asthma ranges between 10 and 15 million people in the USA (Centers for Disease Control, 1992, 1996a; Evans, 1993). However, this estimate is probably low, as Marwick (1995) suggested 25 million Americans experience asthma. Rates of COPD and asthma vary by gender, age, and race. The American Thoracic Society (1995) reported that COPD prevalence was increasing at a significantly higher rate for women (increasing by 30% in 1985 alone) than for men (a slight increase). Despite this increase, Sherrill, Lebowitz, and Burrows (1990) found a higher prevalence of COPD in men (4±6%) than in women (1±3%). Data from the Centers for Disease Control (1996b) indicated that in people aged 5±34 years, considered the most stable population to study, the rate of asthma increased 52%, from 34.6 per 1000 to 52.6 per 1000 in the years between 1981 and 1992. The rate of asthma increased by 29% for males and 82% for females. The prevalence rate for pediatric asthma is estimated at 7% in the

USA, a rate that is increasing more rapidly than for the total population (Centers for Disease Control, 1996a; Evans, 1993). Racial differences for adult asthma are notable: across age groups, both Black and Hispanic minorities in the USA have a higher prevalence of asthma than Whites (Evans, 1993; Coultas et al., 1993). The Centers for Disease Control (1992) reported that between 1981 and 1988, the annual prevalence rate of asthma among Black females increased by 45%; during the same period, the annual prevalence rate of asthma for White females increased by 63%. 8.14.2.3 Morbidity Associated with COPD and Asthma Asthma morbidity has been closely studied by epidemiologists. Of greatest interest are data associated with physician contacts, hospitalization, disability, lost work and school days, and financial costs. Recent data has shown increasing morbidity cost due to asthma and COPD (American Thoracic Society, 1995; Centers for Disease Control, 1992, 1996a; Evans, 1993; Stempel, Hedblom, Duncanin-Robbins, & Sturm, 1996). Physician contacts, a primary source of data, have risen steadily since 1980 (Centers for Disease Control, 1992). Hospitalizations due to COPD and asthma are also increasing at a greater rate for females, minorities, and children. As of 1990, females were more likely to be hospitalized for asthma than males; Black adults with asthma were more than twice as likely to be hospitalized as Whites (Centers for Disease Control, 1992). The annual hospitalization rate for children and young adults with asthma (aged 0±24) years showed an increase of 28%, with rates consistently higher for Blacks than for Whites. Overall, asthma is the leading reason for hospitalization among children in the USA (Reed, 1986). The financial burden associated with asthma can be separated by inpatient costs, outpatient costs, and outpatient medication costs. Weiss, Gergen, and Hodgson (1992) found the economic impact of asthma was an estimated US $6.2 billion in 1990. This figure included direct costs, such as hospitalization and medication costs, and indirect costs, such as lost productivity due to missed work and school. Stempel et al. (1996) reported that asthma patients belonging to one of four large HMOs had an annual expenditure of about US $467 per patient, with the greatest proportion of spending on medications (38%) and inpatient hospital charges (32%). Direct costs for asthma were estimated to be in excess of US $5 billion annually (Stempel, Sturm, Hedblom, & Durcainin-Robbins, 1995).

Factors Associated with COPD and Asthma 8.14.2.4 Mortality Related to COPD and Asthma The annual death rate for COPD is currently estimated at 18.6 per 100 000, a 33% increase since 1979. Gender differences occur in older individuals with COPD (over age 55 years), with death rates for men by age 70 being twice that of women with COPD (American Thoracic Society, 1995). Racial differences for patients with COPD indicate that mortality due to COPD is lower for Blacks than for Whites, a finding that is partly due to the lower rates of COPD in minority populations. Death resulting from COPD occurs with greater frequency than for asthma, in part because of the commonly advanced age of diagnosis and of the progressive nature of COPD. Asthma is a treatable disorder, however. This makes the death rate from asthma, however small, a significant concern for health care professionals. Until 1980, asthma mortality was on the decline. Since that time, however, there has been a 31% increase in deaths from asthma. Death rates are generally higher for older patients with asthma, but there are a disproportionate number of deaths due to asthma in children (Evans, 1993). The most recent statistics on asthma mortality for children indicate that the rate nearly doubled from 1980 to 1993 for children aged 5±14 years, and increased an alarming 118% from 1980 to 1993 for patients aged 0±24 years (Centers for Disease Control, 1996a). Of this group, death rates have consistently been the highest for Blacks aged 15±24 years (from 2.5 per million in 1980 to 5.2 per million in 1993). 8.14.3 FACTORS ASSOCIATED WITH COPD AND ASTHMA 8.14.3.1 Environmental Risks for COPD and Asthma The greatest risk factor for developing COPD is cigarette smoking. It is estimated that 80±90% of the risk for COPD can be accounted for by tobacco smoke (American Thoracic Society, 1995). Only about 15% of all smokers develop COPD; about 15% of one-pack-per-day and 25% of two-pack-per-day cigarette smokers will develop COPD if they continue smoking (Fletcher, Peto, Tinker, & Speiter, 1976). There is no documented direct link between smoking and asthma. Maternal and paternal smoking, however, have been correlated with severe asthma and, in some cases, with early onset asthma (Sherrill et al., 1990; Evans, 1993; Kaplan & Mascie-Taylor, 1989). Passive smoking has also been implicated as a potential risk factor for developing asthma, and there is often

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a worsening of asthma symptoms in the presence of tobacco smoke (Spector & Nicklas, 1995). Air pollution is an irritant for exacerbations of COPD and asthma. However, it is unknown whether air pollutants are causative to the onset of respiratory disease. Air pollutants include smoke, particulate matter, acid rain, reactive gases, and ozone. The negative effects of these airborne pollutants can be damaging to the structure and functional capabilities of the lung, especially with prolonged exposure and exposure during exercise. It is thought that asthma patients are hypersensitive to pollutants. Additionally, exposure to pollutants increase the patients' sensitivity to other triggers for asthma. The relationship of asthma to air pollution is complicated by the fact that both asthma and pollution vary according to weather and outdoor temperature. However, temperature-adjusted rates for air pollution were still significantly related to increases in asthma attacks. Occupational factors are associated with increased prevalence of chronic airway obstruction, quicker rate of lung function decline, and higher mortality from COPD. One subset of emphysema, centricinar emphysema, is linked to long-term exposure to ambient particles such as coal dust; as expected, centricinar emphysema is widespread among coal workers (American Thoracic Society, 1995). 8.14.3.2 Individual Factors Associated with COPD and Asthma The major demographic difference between COPD and asthma is the occurrence of the disorders at different ages. About 25% of childhood asthma cases persist into adulthood, and more adult women are likely to be diagnosed with asthma than men (Burrows, 1991; Spector & Nicklas, 1995). Gender differences in childhood asthma favor higher prevalence rates in boys and, as described earlier, racial differences are clear-cut for childhood asthma in that Black children are 2.5 times more likely than White children to be diagnosed with asthma. Racial differences are also noted in the COPD population, with a lower prevalence of COPD in Blacks (3.2%) and other minorities than in Whites (6.2%). The relationship of allergic disease to asthma has been well documented (Evans, 1993; Kaliner & Lemanske, 1992; Sherrill et al., 1990). Studies have repeatedly demonstrated that asthma prevalence is closely linked to immunoglobin levels associated with allergy (Sherrill et al.). Asthma has been shown to be, in many cases, allergy-based, induced by environmental agents

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and allergens, including pollens, fumes, smoke, weeds, grasses, and hay (Kaliner & Lemanske, 1992; Kaplan & Mascie-Taylor, 1989; Spector & Nicklas, 1995). Other risk factors found to predict childhood asthma include residential regions, home environment, parental smoking, low birthrate, young maternal age, low family income, and urban environments (Coultas et al., 1993; Kaplan & Mascie-Taylor, 1989). 8.14.3.3 Genetic Contributions to Respiratory Disease There exists an hereditary predisposition for both asthma and COPD. As early as the 1800s, hereditary factors were implicated in the onset of COPD, especially emphysema (Sherrill et al., 1990). In the twentieth century, researchers found a known hereditary defect, a-1-antitrypsin deficiency, which occurs in about 1% of COPD cases. a-1-Antitripsin deficiency is suspected in early-onset cases of COPD where there is a family history of lung disease and the patient is a nonsmoker. Studies of monozygotic and dyzygotic twins have demonstrated some degree of family aggregation for COPD, pulmonary function, asthma, and allergic disease (American Thoracic Society, 1995; Sherrill et al.). In households where one parent has a history of an obstructive lung disease, there is a significantly higher prevalence for asthma and bronchitis, compared to households where no adult members have respiratory disease (Sherrill et al.). A report by Sanford, Weir, and Pare (1996) on the genetics of asthma outlined the heritability of asthma, and suggested that individuals are genetically susceptible for allergic airway inflammation, but that asthma will only occur if the individual is exposed to the correct allergens; important in this equation are the timing, intensity, and mode of exposure. Two common viral agents, respiratory syncytial virus (RSV) and the parinfluenza virus, are particularly prominent in the onset of childhood asthma (Ellis, 1993). 8.14.3.4 Prevention of Respiratory Disease The Centers for Disease Control (1992) declared that prevention and control of known risk factors must be addressed as part of an overall plan to reduce the morbidity and mortality associated with respiratory disease. Prevention efforts for people with asthma have been twofold: (i) to control the symptoms of asthma, and (ii) to prevent the occurrence of asthma attacks (Spector & Nicklas, 1995). Factors identified as triggers for specific asthma attacks include: (i) viral respiratory infections; (ii) allergens, such as mold, animal dander,

cockroaches, dust mites, and airborne pollens; (iii) environmental irritants such as fumes and strong odors, air pollutants, and tobacco smoke; (iv) ingested chemicals such as aspirin and food additives; (v) exercise or inhalation of cold air; (vi) weather changes; and (vii) emotional reactions, especially laughing, crying, and shouting. Despite this knowledge, patients and health care personnel are limited in their ability to identify the onset and precipitating factors of a specific asthma attack. There is not only great variation in the interactions produced by variables in a given individual, but a matrix of stimuli that impinge upon that patient at a given moment. In addition, immediate- or late-onset asthma that may follow exposure to a stimulus further limits the ability to determine what produced a given asthma episode. Sherrill et al. (1990) derived a statistical model for risk prediction of COPD by looking at prediction of low lung function over time and how it related to certain risk factors. Their initial formulations have included initial lung function, age, gender, and smoking as the major determinants of COPD. However, these risk factors are likely to interact with the same variability as they do for asthma patients, leaving researchers and clinicians alike still searching for an understanding of the preclinical determinants of COPD (Burrows, 1991). 8.14.4 MEDICAL MANAGEMENT OF COPD AND ASTHMA Medical treatment of COPD differs somewhat from that of asthma. It is based on the consideration of the state and severity of disease, and the configuration of presenting symptoms. Recognition of the underlying pathology of respiratory diseases has helped delineate specific treatments for different respiratory disorders. 8.14.4.1 Evaluation of Respiratory Disorders It is imperative for practitioners to: (i) conduct a comprehensive evaluation of the individual patient, his or her history and symptoms, and the course of the disease; (ii) perform tests of pulmonary function; and (iii) establish a treatment regimen based both on the information obtained and the needs of the individual patient. For example, the realization that inflammation plays a significant role in the pathogenesis of asthma has led to the use of different medications to treat the disorder and prevent asthma exacerbations (Creer & Levstek, 1997). Evaluation for the asthma patient consists of a complete medical and environmental history

Medical Management of COPD and Asthma that includes exploration of the potential triggers for a patient's asthma attacks. Most asthma experts believe the patient's history is a significant part of the evaluation (Ellis, 1993; National Asthma Education Program, 1991). Pulmonary tests can aid in differentiating asthma from other respiratory disease. These include tests of pulmonary function, such as spirometry or peak expiratory flow rate (PEFR). One especially useful technique is to measure forced expiratory volume (FEV-1). This is the total amount of air a patient can exhale in one second. Pulmonary function data may help differentiate restrictive from obstructive airways. If given a bronchodilator, patients with asthma will usually exhibit complete reversibility of the obstruction, whereas lung function may remain impaired for patients with irreversible damage. In addition, measurements of pulmonary function are useful in determining the severity of the airflow difficulties; although they should not be ignored, subjective patient perceptions of their symptoms usually correlate poorly with the more objective pulmonary function tests (Spector & Nicklas, 1995). Patients may be presented with a standard form of bronchoprovocation challenge, such as inhaling methacholine, inhaling cold air, or exercising. This process helps the clinician diagnose and understand the specificity of the patient's symptoms. At one time, a 15±20% decrease in the pulmonary test data, when challenged, often resulted in a diagnosis of asthma. Provocation challenges are still used to determine precipitants of a patient's asthma precipitants, although in most cases, the actual diagnosis of asthma is based upon a 15±20% improvement in pulmonary function in response to a bronchoinhaler. In recent years, peak flow rates, obtained with a simple, portable, and inexpensive peak flow meter, have been widely adapted in the management of asthma. When done correctly, PEFR values correlate highly with those obtained with the spirometer. PEFR values are useful in assessing the degree and severity of airway obstruction, for monitoring response to treatment, for diagnosing exercise-induced asthma, and for detecting asymptomatic deterioration. When patients learn to take PEFR values at home, the clinician's ability to provide effective treatment is enhanced (National Asthma Education Program, 1991). More sophisticated testing is required for patients suspected of having COPD to determine the pathology and disease state. A complete history of the patient, particularly regarding his or her smoking history, is essential. A physical examination is helpful in revealing signs of dyspnea and airway hyperin-

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flation; chest radiography provides the most direct evidence for COPD, because of the known anatomical changes that occur in the disease. Pulmonary function tests are also useful in determining the rate of decline in pulmonary function for patients with COPD. If chronic bronchitis is indicated, sputum examination is required (American Thoracic Society, 1995). 8.14.4.2 Ratings of Illness Severity and Prognosis Rating systems for severity of COPD are unique from those used to gauge asthma severity. Severity of COPD is based on the inter-relationship between the degree of airflow obstruction, the subjective sensation of breathlessness (dyspnea), and the impairment of gas exchange (especially oxygen levels). Most patients are in a category of stage I where there is minimal interference of COPD with daily activities; medical care is provided on an outpatient basis and is modest in nature. At stage II, impairment on daily life is more significant, and patients are usually required to seek the ongoing support of a respiratory therapist. Stage III includes a minority of patients; it is the late stage of COPD where quality of life is greatly diminished. Constant care by a respiratory therapist is required. At each stage of the disease process, treatment is guided by the needs of the individual patient, and includes consideration of medical, functional, and psychological factors (American Thoracic Society, 1995). As noted, attempts to classify asthma severity have generally involved a formula based on the interaction between symptom frequency and intensity, activity impairment, pulmonary function, and response to treatment (International Consensus Report, 1992; National Asthma Education Program, 1991; Spector & Nicklas, 1995 8.14.4.3 Medications used to Treat COPD and Asthma Despite the differences in diagnosis of asthma and COPD, many of the same treatment options are available to individuals with both disorders. 8.14.4.3.1 Maintenance or preventive medications Recognition that inflammation was a major component in asthma led to the use of antiinflammatory medications, particularly inhaled corticosteroids and cromolyn sodium, with an increasing number of patients. These drugs are taken on a prophylactic basis to help prevent asthma. The basis of their use is analogous to individuals who are susceptible to sun damage.

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In this example, individuals can prevent the inflammation of a sunburn by applying a sun blocker. Similarly, asthma patients use the antiinflammatory agents to protect against reactions to allergens and other irritants. Though the exact mechanism of action is not fully understood, cromolyn sodium is effective with selected patients. It is also an excellent medication because it produces few side effects. Inhaled corticosteroids are effective anti-inflammatory agents, and have been widely prescribed in the treatment of asthma. Oral doses of corticosteroids, particularly when taken over an extended period of time, have potentially damaging side effects such as skin damage, cataracts, diabetes, osteoporosis, and infection. The efficacy of anti-inflammatory drugs in COPD is unclear. Cromolyn sodium could only be of value to COPD patients who have associated respiratory allergies. There is no evidence that inhaled steroids have a role in the management of COPD. Side effects of oral steroids, along with a discouraging 20±30% positive response rate in COPD patients, make steroids an unlikely intervention choice for COPD treatment (American Thoracic Society, 1995).

Anticholinergic agents are not recommended as the sole treatment for asthma. However, their use may be indicated if taken with a b-agonist in asthma patients with chronic airflow obstruction (Spector & Nicklas, 1995). There is evidence that administration of an anticholinergic agent may be more effective than a bagonist to relieve daily symptoms of COPD. The drugs have fewer side effects and are longer acting than b-agonists; they may also be used in combination with b-agonists to treat the exacerbation of symptoms (American Thoracic Society, 1995). Methylxanthines, particularly theophylline products, are useful in the treatment of mild, moderate, and, in particular, nocturnal asthma. They serve as a mild-tomoderate bronchodilator. Methylxanthines are useful in the treatment of COPD where inhaled medication is contraindicated (American Thoracic Society, 1995). Although its bronchodilation and long-action effects are attractive, potential side effects associated with theophylline has often led to it not being prescribed by physicians (Creer & Levstek, 1997). However, harmful side effects can generally be avoided by appropriate dosing and monitoring (National Asthma Education Program, 1991).

8.14.4.3.2 Bronchodilators

8.14.4.3.3 Oxygen therapy

Bronchodilators are used in the treatment of both asthma and COPD. In asthma therapy, bronchodilators are used to treat exacerbations of asthma because they dilate constricted bronchial airways. The effect is usually more pronounced in asthma patients than in patients with COPD because the latter are sometimes less tolerant of medication side effects such as tremor and nervousness (American Thoracic Society, 1995). b-Adrenergic agonists, anticholinergic agents, and methylxanthines are the three primary types of bronchodilators used to treat asthma and COPD; each is briefly discussed. b-Adrenergic agonists relax the airway smooth muscle and may contribute to the biochemical process of inflammation reduction. Inhaled b-adrenergic agonists are the preferred medication for alleviating acute asthma exacerbations and for preventing exercise-induced asthma (Spector & Nicklas, 1995). For patients with COPD, b-adrenergic agonists do not alter the disease process, although they can alleviate some symptoms of the disorder. There is a concern that b-agonists are misused by some patients with asthma (Spector & Nicklas, 1995), and are overused by COPD patients to relieve dyspnea (American Thoracic Society, 1995).

Oxygen therapy is rarely indicated for patients with asthma, except in the case of severe intractable asthma where the goal is to increase blood oxygen levels to at least 90% arterial saturation. It is likely that these patients will be treated in an intensive care setting where the risk for respiratory failure can be adequately addressed (Spector & Nicklas, 1995). For COPD patients, hypoxemia can be a common problem; one of the goals of therapy is to correct and prevent hypoxemia. Long-term oxygen therapy (LTOT) provides a variety of pulmonary, cardiac, quality of life, and functional benefits for COPD patients in later stages of disease.

8.14.5 PSYCHOLOGICAL ASPECTS OF COPD AND ASTHMA Respiratory disorders have been perceived in various ways by professional groups who work with the condition. If one were to look at how asthma was perceived in the 1940s, one would discover that many thought it was a significant psychological disorder that centered around unresolved conflicts that patients, particularly children, had with their mothers. This view

Psychological Aspects of COPD and Asthma represented the last remnants of the psychoanalytic view of asthma espoused by French and Alexander (1941). In the 1990s, a wide spectrum of views concerning asthma are found; it is possible, for example, to compile a set of articles which suggest that patients with asthma are psychologically different from some comparative group. However, if one were to divide and stack articles into whether asthma patients are abnormal or normal, there would be far more articles in the latter pile. This does not mean that patients with asthma or COPD do not exhibit psychological or behavioral problems; what it illustrates is that it is inappropriate to classify all patients with asthma or COPD into a specific psychological category. With this as an introduction, how should the psychological aspects of COPD and asthma be perceived? A prevailing view, described by a number of authors (Creer, Renne, & Christian, 1976; Desquin, Holt, & McCarthy, 1994; Russo & Varni, 1982), is that patients with chronic illness, including COPD and asthma, are healthy people with a unique set of problems. In short, the assumption is made that asthma and COPD patients are normal people in an abnormal situation. Patients are influenced, like other people, by a variety of social, environmental, developmental, and cognitive variables. One strength of this view is that it allows health and clinical psychologists to focus on behaviors they can change to permit COPD and asthma patients to function in a healthier manner.

8.14.5.1 Impact on the Individual Any chronic illness can have an impact on the individual patient, his or her family, and society. The degree of influence of asthma and COPD varies from person to person and, in many cases, from situation to situation. It is often impossible to make general conclusions about the impact a respiratory disorder has on a given patient. You may work with a patient with severe COPD who maintains a positive outlook. Through a combination of medical and behavioral expertise, she appears to live a relatively normal life. She may take her oxygen tank with her, but she would not let her COPD disrupt her Wednesday bridge group or her Friday appointment with a hairdresser. In another instance, you may be asked to assess and consult on a case involving a boy with mild asthma, and discover that his condition is at the center of both his and his family's lives. The youngster may be physically in poor shape, yet avoid taking physical education courses because exercise once produced an attack.

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As in any type of case referred to a clinical or health psychologist, professionals must consider how the patient perceives his or her disorder to determine when and how to intervene. The clinical emphasis should be, first, on assessing the individual patient to determine the specific types of problems he or she experiences. Many problems may be related to the COPD or asthma of the patient. The clinician should next determine how best to help the patient resolve any detected problems. In recent years, the aim of medical treatment, particularly for asthma, has been to tailor treatment regimens for the individual patient (National Asthma Education Program, 1991). The trend of individualizing or tailoring treatments has been expanded to all chronic respiratory disorders. A similar approach has long been taken in the psychological and behavioral treatment of asthma and COPD patients (Creer et al., 1976; Creer & Christian, 1976; Creer, 1979). 8.14.5.1.1 Emotional impact Being unable to breathe has as much of an emotional impact as anything we are likely to experience. The impact is amplified when patients recognize that they don't know how to reverse their condition and breathe in a normal manner. Would we not expect that patients with asthma or COPD experience emotional distress under these circumstances? Would we not anticipate a patient's response to be contagious to those around him or her, including medical personnel? Imagine yourself a parent who suddenly realizes that your child is no longer breathing, yet the youngster looks to you for help. The emotional impact of both a child's condition and a parent's feelings of helplessness can be overwhelming. The fact that so many patients and members of their families remain calm when the patients cannot breatheÐparticularly under the conditions of uncertainty that earmark the intermittency and severity of breathing exacerbationsÐhas always impressed those who work with asthma and COPD. Professionals, whether they be medical or behavioral personnel, often report that they are frightened and anxious when treating asthma and COPD patients. The awareness of their own feelings only strengthens the admiration clinicians have for the patients whose very existence is threatened. For this reason, teaching patients to remain calm is an important component for the management of COPD and asthma. Behavioral scientists possess techniques that are effective in reducing the fears and anxiety that can accompany COPD and asthma.

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Depression is common in both COPD and asthma. Ries, Kaplan, Limberg, and Prewitt (1995) found that 29 out of 119 patients (24%) with COPD had significant scores on the Centers for Epidemiological Depression Scale (CES-D). A higher rate of depression was found in a group of COPD patients by Agle, Baum, Chester, and Wendt (1973), who found that 17 out of a group of 23 COPD patients experienced depression. However, Agle and Baum (1977) noted that a psychiatric diagnosis of depression for COPD patients is difficult to arrive at because many of the complaints that signal depression may be confused with disease symptoms. Similar comments were noted by Dudley and Sitzman (1988). They described four categories of depressive behavior in COPD patients: (i) physical symptoms; (ii) emotional reactions, such as feelings of hopelessness and helplessness; (iii) cognitive factors, such as indecisiveness and low self-esteem; and (iv) motivational factors, such as passivity and dependence. It is also difficult to arrive at a psychiatric diagnosis of depression in asthma, although self-reports of the condition are common. In a study by Creer et al. (1988), for example, 37% of children with asthma and 32% of their parents, respectively, reported that the children were depressed because of asthma. Were the children depressed? Probably. Was their depression indicative of clinical depression? Probably not. When standardized depression inventories are used with asthma patients, higher scores can be obtained yet fail to be clinically significant. For example, elevated scores on the Beck Depression Inventory (Beck, 1967) were obtained in a study of 76 adults with asthma (Kotses et al., 1995). However, the average depression scores were within the normal range of values, indicting that most patients were not clinically depressed. This finding does not mean that depression should not be addressed by a clinical psychologist. What it does suggest is that both asthma and COPD patients may report depression that, depending upon the evaluation of the individual patient, may or may not require psychological intervention. Panic±fear is another psychological dimension that has been investigated, particularly in patients with asthma. Two lines of research have been followed. First, Kinsman, Luparello, O'Banion, and Spector (1973) analyzed the subjective symptmatology of asthma within a group of 100 asthma patients. A set of 77 symptom adjectives were found to be associated with asthma attacks. Key cluster analysis of the 77 adjectives identified five symptom clusters: (i) panic±fear; (ii) irritability; (iii) hyperventilation±hypocapnia, for example,

low levels of carbon dioxide in the blood; (iv) bronchoconstriction; and (v) fatigue. Panic±fear was reported by 42% of the sample investigated. A series of studies were conducted on the construct of fear±panic and asthma. Among findings were that the panic±fear influenced such variables as medication taking, length of hospitalization, symptom vigilance or disregard, medication compliance, and medical decision making (Dahlem, Kinsman, & Horton, 1979; Jones, Kinsman, Dirks, & Dahlem, 1979; Kinsman, Dirks, & Schraa, 1981; Staudenmayer, Kinsman, Dirks, Spector, & Wangaard, 1979). A second line of research attempted to operationally define panic in behavioral terms (Creer, 1974, 1979). This proved more difficult than anticipated because the label ªpanicº was attached to a broad array of behaviors. At one end of the continuum, there were children who constantly complained that they required more of a prescribed drug or that the medication they were taking was ineffective. They appeared frightened and agitated, a behavior that was contagious to medical personnel. At the other end of the continuum, there were patients who remained frozen-like and silent and did not ask for help even if they lapsed into unconsciousness. After several attempts to define the behavior (Creer, 1992), it was decided to define panic as any behavior exhibited by children that frightened physicians, nurses, and other medical personnel. Defining panic in this manner led to the children being referred for psychological assessment and successful treatment via systematic desensitization (Creer, 1974, 1979). Subsequent work has led to the inclusion of relaxation exercises, sometimes accompanied by systematic desensitization, in many treatment programs for asthma. Creer (1991) asserted that the use of relaxation with systematic desensitization to change panic behavior represented the single most effective application of behavioral procedures to manage asthma-related behaviors. In addition, relaxation during attacks can prevent the exacerbation of an ongoing episode and, perhaps more importantly, assist patients to think of and perform steps required to control their asthma. 8.14.5.1.2 Cognitive impact Enough data was collected concerning the cognitive impact of COPD to warrant Grant, Heaton, McSweeny, Adams, and Timms (1980) to conclude the disease affects the brain as well as the lungs and heart. Prigatano and Grant (1988) suggested that COPD patients demonstrate signs of neuropsychological impairment, particularly including abstract reasoning, speed

Psychological Aspects of COPD and Asthma of information processing, and general psychomotor speed and accuracy. Their findings led Prigatano and Grant (1988) to suggest future research should: (i) investigate parameters that influence psychomotor deterioration and delay in speed of information processing; (ii) clearly describe the underlying nature of the neuropsychological deficits and the related medical parameters; (ii) understand changes in neuropsychological function that occur over time in COPD patients; (iv) determine the extent to which neuropsychological disturbance compromises the patient's ability to comply with rehabilitation; and (v) determine how neuropsychological deficits influence the quality of life in COPD patients. Attention has been focused on the impact of COPD on quality of life as assessed through such instruments as the Quality of Well-Being Scale and the Sickness Impact Profile (McSweeny, 1988; McSweeny & Creer, 1995; Prigatano & Grant, 1988). A major concern in asthma has been on the effect asthma medications have on cognitive functions. A number of studies have been conducted on this subject by Bender and his colleagues, particularly on children with asthma. In a recent summary of the research (Creer & Bender, 1995), it was noted that the results of the studies are inconsistent. Asthma medications have been purported to impede memory or to improve it; to cause motor tremor; to cause hyperactivity in children; to improve attention; to cause anxiety; and to induce psychosis. Many reports of cognitive and neuropsychological side effects of asthma medications are prone to exaggeration, but side effects do exist that need to be considered in making treatment decisions regarding asthma, particularly in children. These involve all the major categories of asthma medications including corticosteroids, both oral and inhaled; theophylline; b-adrenergic agonists, and over-the-counter medications (Bender & Klinnert, in press; Creer & Bender, 1993; 1995). 8.14.5.1.3 Behavioral impact Part of the behavioral impact of COPD is embedded in the morbidity and mortality data discussed earlier. Kaplan and Atkins (1988) succinctly summarized the four reasons why COPD has such a major impact: (i) it is among the top four leading causes of death; (ii) it has a major impact upon the activities of daily living; (iii) it affects a large number of people; and (iv) the occurrence of COPD is increasing. Many individuals who started smoking 30 or 40 years ago are only now beginning to experience COPD. The disorder, in turn, affects other psychological and behavioral patterns, such as

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anxiety and depression, cognitive and psychomotor functions, psychosocial activities, and sexual behavior. The behavioral impact of asthma was also discussed within the context of epidemiological information. Patients with asthma miss more work and school than those who do not have the disorder. Asthma has long been the leading cause of school absenteeism among chronic health conditions (Schiffer & Hunt, 1963); this finding has not changed in the subsequent decades. Consequently, many children with asthma face the struggle of striving to keep up with their peers academically (Creer et al., 1976). Missing school also isolated these youngsters from the mainstream of social activities and interactions that help them develop into productive adults. Missing work is equally deleterious to adults with asthma. They are not only fearful that they may lose their jobs, but that co-workers believe they are passing their duties onto others. Many adults with asthma worry about taking medications at work, even if needed to abort an attack, because they believe their action could jeopardize their job, and their chances for advancement. Finally, although it is bad enough to experience asthma, being labeled an asthmatic conjures up various negative images to different people. Educators may automatically assume that a child with asthma requires special educational treatment, such as skipping physical education classes, even though a child with asthma needs to be in good physical condition in the event he or she has a serious attack (Creer, 1979).

8.14.5.2 Impact on Family and Social Environment COPD and asthma are chronic disorders that have the potential to dissolve the fabric of family unity and cohesiveness (Creer, 1979). There are a several reasons for this. First, there are the expenses incurred by the disorders. Vance and Taylor (1971) found that childhood asthma could consume anywhere from 2% to 30% of a family's income; similar data were reported a decade later by Marion, Creer, and Reynolds (1985). Not only may more intensive medical treatment be required to treat COPD, but the family could face the prospect of lost income because the patient with COPD is unable to work. Second, family activities are curtailed because of COPD or asthma. Vacations are a rarity not only because of their expense, but because, in the case of asthma, families are fearful of exposing a member to stimuli that could induce an attack; with COPD,

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patients and their families are often fearful of being apart from medical treatment, such as oxygen, if needed. With a progression in the severity of COPD, both the patient and members of their family begin to see themselves as prisoners with COPD as the jailer. Finally, as family tensions increase, there is the potential for families to break up and disintegrate. Creer, Ipacs, and Creer (1983) found that over a 10year period, the divorce rate among parents of children admitted to a residential treatment facility for asthma increased from 15% to 61%. The rates of divorce among these families were far higher than found in the overall population at that time. Social support is a strong predictor of prognosis, even more so than other predictors such as severity of illness (Jensen, 1983). This finding is applicable to patients with both COPD and asthma. 8.14.6 ADHERENCE TO TREATMENT REGIMENS Adherence or compliance to treatment regimens is poor in most chronic conditions. Patients with COPD and asthma are no exceptions. With COPD, nonadherence occurs both in smoking cessation and in taking medications. Smoking cessation is difficult to attain, particularly in smokers who have smoked for 20 or more years. Adherence by patients to asthma regimens is also difficult. Compliance is especially low when both preventative and as-needed medications are required to help control asthma. This reflects the finding that more complex regimens lead to lowered rates of compliance. Equally problematic is having asthma patients avoid stimuli that could trigger or exacerbate their conditions. Many health care personnel, including psychologists, have failed when asking patients or families to rid their homes of a pet whose dander is provoking a patient's asthma. 8.14.6.1 Medication Compliance Medication compliance has been studied extensively in asthma, particularly in children with the disorder. There are three themes to the research (Creer, 1993). First, interest in compliance was sparked by the widespread prescription of theophylline medications for asthma. These metaxanthine products are effective in the treatment of asthma, but only when drug levels fall within a therapeutic band in the blood. To determine safe doses of theophylline, a technology emerged to assess the drug in the blood stream.

A second theme of studies of compliance in asthma was the focus on methods of assessment. Studies investigated the use of direct measuresÐ including blood serum assays, the use of tracers or markers, and observationÐand indirect measuresÐincluding patient self-reports, pill and liquid medication assessment, treatment outcomes, and mechanical instruments for recording medication use. A final theme was pointed out by Creer and Levstek (1996). They noted that there were two competing sets of research literature in asthma. On the one hand, there were the investigations showing the wide disparity of medication compliance rates among patients. For this reason, the tendency has been to blame patients for not adhering to their medication regimen. On the other hand, studies have indicated that not only were there many physicians who did not know how to use medication inhalers correctly, but that even more medical personnel did not teach proper inhalation techniques to their asthma patients. Based upon these disparate sets of data, Creer and Levstek (1996) concluded that it was time to share the blame for noncompliance in asthma between medical personnel who do not teach their patients to take their medications correctly and patients who do not adhere to their treatment regimens. Compliance has not been directly studied in COPD patients (Windsor, Green, & Roseman, 1980). However, Parker (1988) surmized that COPD patients would be apt not to comply with a treatment regimen for several reasons: (i) COPD is a chronic disease, and adherence to medication regimens is not only low but tends to decrease over time; (ii) COPD patients are generally older, and may have several other ailments that require medical treatment; (iii) cognitive impairment in COPD patients may lead to forgetfulness; and (iv) as the dyspnea experienced by patients with COPD is a constant symptom, there are suggestions that increased symptom frequency may be associated with noncompliance. However, Parker (1988) concluded that the severity of a patient's disability may influence compliance in a positive direction and provide incentive for patients to comply with medical instructions. Two other factors may also contribute to noncompliance in COPD patients. First, compliance rates are low where major behavioral changes, such as quitting smoking and increasing exercise, are required. Second, Kopacz (1988) pointed out that compliance is apt to be more of an issue as the focus of long-term treatment of COPD shifts from hospital- to community-based care where patients are expected to perform self-management skills to help manage their disorder.

Adherence to Treatment Regimens 8.14.6.2 Lifestyle Changes Life activities in asthma are often a function of severity of the disorder. Those with severe asthma, particularly those who experience asthma exacerbations on a perennial basis, may have more activity limitations than patients who have mild asthma on an intermittent basis. However, asthma is a disorder that, with proper treatment, can be controlled in almost all patients (National Asthma Education Program, 1991). For this reason, the degree of control established over asthma becomes of major significance. If asthma is treated on a regular basis by skilled medical personnel, there is no reason why asthma should dictate the lifestyle of patients. There has been a strong effort to assess quality of life in patients with COPD (McSweeney, 1984; McSweeney & Creer, 1995). Four dimensions of life quality for COPD patients were suggested by McSweeny, Grant, Heaton, Adams, and Timms (1982). They define quality of life in terms of: (i) emotional functioning, including mood changes and other psychological symptoms; (ii) social role functioning, including employment, home management, and family or social relationships; (iii) daily living, such as activities of self-care skills and mobility; and (iv) the ability to engage in enjoyable activities, such as hobbies and recreational activities.

8.14.6.2.1 Activity restriction Newacheck, Budetti, and Halfron (1986) reported that data from the National Health Interview Survey showed that over two million children under the age of 17 years experienced some degree of limitation in their school, play, or other recreational activities because of chronic conditions. Looking at the causes of the increase in activity limitation, Newacheck and his co-workers found that asthma counted for most of the net change (65%) in the prevalence of activity-limiting disease. More recently, Taylor and Newacheck (1992) examined activity restrictions in children with asthma. In comparison to their peers without asthma, it was found that youngsters with asthma missed an additional 10.1 million days of school, had 12.9 million more contacts with physicians, and were hospitalized 200 000 more times in 1988. Depending upon the severity of the disorder, patients with COPD may experience problems ranging from curtailing their favorite activity because of a shortness of breath to being restricted to travel only when accompanied by an omnipresent oxygen tank. Beyond

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these observations, there is a paucity of data concerning activity restriction and COPD. 8.14.6.2.2 Environmental prescriptions Environmental control is becoming of increasing importance in the management and control of asthma. A prescription for environmental control was provided by Spector and Nicklas (1995, p. 760): Important steps in environmental control are (1) to minimize house dust mite exposure in mite exposure in mite-allergic patients with asthma, (2) to lessen exposure to domestic animals in appropriate patients, (3) to not allow smoking in the home, (4) to avoid strong odors and chemical fumes, (5) to install kitchen and bathroom exhaust fans, (6) to use humidifiers with caution in mite- and moldsensitive patients, (7) to use air conditioners or electrostatic air purifiers, (9) to install a dehumidifier and reduce water entry in damp basements, and (10) to initiate other measures as indicted for specific allergies as appropriate.

Recent efforts have been made to establish environmental control for people with asthma, but overall it has been difficult to establish and maintain such control in the homes of patients. As pointed out by Creer and Levstek (1996), environmental management of asthma offers strong research and clinical opportunities for behavioral scientists. Environmental risk factors for COPD include passive smoking, ambient air pollution, and occupational factors. As noted earlier, interactions between cigarette smoking and job exposure to hazardous airborne substances results in higher rates of COPD. 8.14.6.2.3 Smoking cessation Most patients with asthma do not smoke. In fact, a common report by children involved in a self-management program was that they made every effort to avoid being around those who smoked, including other family members (Creer et al., 1988). Getting parents or other family members to quit smoking, however, is another story: most family members know their behavior harms the patient with asthma, yet they continue to smoke. As a clinician, it is a major victory to persuade family members to avoid smoking in the home. A number of approaches have been taken to produce smoking cessation in COPD patients. One approach is the adaptation of the ªfour Asº of smoking cessation outlined for physicians by the National Cancer Institute (Lewis & Fiore, 1995): (i) ask about smoking status at every opportunity; (ii) advise every smoker to quit

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smoking; (iii) assist your patient in stopping smoking, even including using nicotine patches or gum; and (iv) arrange follow-up visits. Others (Muzurek & Gross, 1995) suggest a three-stage system of smoking cessation that includes preparation, intervention, and maintenance. Other specific steps for smoking cessation, compiled from both medical and behavioral scientists, were suggested by the American Thoracic Society (1995). 8.14.7 PSYCHOLOGICAL INTERVENTIONS FOR COPD AND ASTHMA Separate intervention approaches are taken towards COPD and asthma. The approach with COPD has been to introduce pulmonary rehabilitation to improve the quality of life of patients and their families. A number of behavioral techniques are involved in a pulmonary rehabilitation program. The approach with asthma is broader, in part because of the wide array of problems presented by patients with asthma. 8.14.7.1 Pulmonary Rehabilitation for COPD Ries (1995) outlined a guide for the pulmonary rehabilitation of patients with moderate to severe disease. Rather than focusing solely on reversing the disease process, the goal of pulmonary rehabilitation is to minimize disability from the disease. The goal could be achieved by enhancing medical therapy, controlling and alleviating symptoms, improving pulmonary functions, and enhancing the quality of life of patients. There are three foci of a pulmonary rehabilitation program: (i) the patients; (ii) a multidisciplinarian approach; and (ii) attention to physiology and psychopathology. The selection of patients was based upon a study of rehabilitation programs conducted by Ries, Kaplan, Limberg, and Prewitt (1995). Six criteria for inclusion were used: (i) patients had symptomatic lung disease; (ii) patients were stable with standard therapy; (iii) patients had functional limitation because of chronic lung disease; (iv) patients were under the care of a primary care provider; (v) patients had no other interfering or unstable medical conditions; and (vi) patients were motivated to be involved in and responsible for their own healthcare. Components of the comprehensive pulmonary rehabilitation program required a multidisciplinarian team. There were two major classes of components of the program: patient evaluation and program content. Patient evaluation included the following five stages:

Stage 1: Interview. A screening interview was conducted to assess suitability for a pulmonary rehabilitation program. An additional aim of the interview was to establish teamwork between patients and their rehabilitation team. Stage 2: Medical evaluation. Reviewing the medical history of patients, including laboratory data, helped confirm their disease and its severity. Stage 3: Diagnostic testing. Pulmonary function evaluation, exercise testing, and the assessment of blood gases at rest and during exercise were performed during this stage. Stage 4: Psychological assessment. Psychological, neuropsychological, social, or cognitive problems were detected during this stage. Other information concerning reactions to progressive dyspnea, sexual dysfunction, and social support was obtained. Stage 5: Goals. After evaluating medical, physiological, and psychological data, realistic goals that were compatible with the patient's disease, needs, and expectations were established. The second component of a pulmonary rehabilitation program consisted of four areas of program content: (i) General education. Patients were provided education about their disorder. The general philosophy was to teach patients skills to permit them to become allies with their physicians in the management of the patient's respiratory condition. (ii) Respiratory and chest physiotherapy instruction. Each patient's need for respiratory care techniques was assessed and instruction provided on various topics, including: (a) bronchial hygiene; (b) breathing retraining techniques, including pursed lips breathing; (c) proper use of respiratory equipment; and (d) appropriate use of oxygen. (iii) Exercise prescription. Developing a standard program of exercise for each patient was another content area. The aim was to prescribe a specific regimen, consisting of simple, useful, and inexpensive exercises, to improve a patient's exercise tolerance and endurance. (iv) Psychosocial support. The final content area consisted of teaching patients to combat feelings of hopelessness and the inability to cope with their COPD. Significant others of patients were involved in this component of treatment. Significant changes in the condition of COPD patients were reported in several studies, including those conducted by Ries et al. (1995) and Niederman et al. (1991). Ries (1995) suggested that the following findings could be expected as a result of pulmonary rehabilitation of COPD patients: (i) decreases in respiratory and psychological symptoms, and

Psychological Interventions for COPD and Asthma the patient's use of medical resources; (ii) increases in quality of life, physical activity, exercise tolerance, activities of daily living, knowledge about COPD, and independence; and (iii) changes in lung function, possible return to work, and longer survival. As will be noted, these changes represent a gold standard for pulmonary rehabilitation because no single study has produced all of the findings. 8.14.7.2 Asthma Management In tracing psychological approaches to asthma, three stages can be delineated. 8.14.7.2.1 Stage 1: Psychotherapy, particularly psychoanalysis It was pointed out earlier that in the 1940s most psychiatric and psychological treatment was guided by the work of French and Alexander (1941). As the influence of psychoanalysis declined, the relationship of resolving underlying presumed psychological factors to help manage asthma also faded (Renne & Creer, 1985). The focus shifted towards intervention with treatable problems rather than a search for psychological underpinnings to what is a physical problem: asthma.

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medications as directed. The procedure involved three steps. First, negotiation took place between psychologists, physicians, and children. Clinical psychologists mediated the discussions and wrote up the negotiated contract. The typical contract, signed by a physician, psychologist, and their patient, specified that when a child demonstrated he or she was taking medications correctly, the youngster would be discharged from the facility. Second, once given medications, psychologists established a procedure whereby children were closely monitored for a period of time to insure that they were taking their medications correctly. Monitoring was gradually faded from the procedure as the children showed they were properly taking their medications. Finally, upon demonstrating that he or she was taking his or her medications as prescribed over a period of time and in different settings, the child, his or her physician, and the youngster's psychologist set the discharge date for the child to return home. Monthly reports from the children and their parents indicated that the procedure was extremely effective in helping the children control their asthma.

These procedures are still state-of-the-art with respect to the management of pediatric asthma. This does not mean that the problem of medication compliance has been solved; however, it remains a major barrier to the proper treatment of both COPD and asthma.

8.14.7.2.2 Stage 2: Behavioral approaches The rise of behavioral therapy approaches in the 1960s and 1970s shifted the focus of asthma management to resolving asthma-related psychological and behavioral problems. The theme is ongoing as health psychologists investigate, for example, behavioral and psychological aspects of asthma medication (Bender & Milgrom, 1992), or fears generated by the disorder (Creer & Christian, 1976). In the meantime, health psychologists have been successful in developing approaches for treating panic, correct inhaler use, overuse of hospital services, phobic behaviors, and compliance behaviors (Creer, 1979, 1992). Many of the techniques developed by health psychologists, such as using negotiation and contracting, were introduced to effectively manage medication compliance in children with asthma in the 1970s. An example of the use of negotiation and contracting was summarized by Creer (1979): Over two decades ago, the staff at the National Asthma Center, a residential treatment facility for pediatric asthma, found that more and more children returned to single-parent homes when discharged. As parents often worked, the children were required to treat some attacks by themselves. Hence, it was decided by behavioral and medical scientists to teach children to take their own

8.14.7.2.3 Stage 3: Self-management Processes involved in asthma self-management are summarized according to the model of self-management proposed by Creer (1997) and Creer and Holroyd (1997). It consists of the following processes. (i) Goal setting Setting goals involves patients reaching an accord with their physicians and other medical personnel how best to control a patient's asthma. Typical goals jointly established by physicians and patients include patient's taking prescribed medications as scheduled and avoiding known triggers of their asthma. (ii) Information collection Self-monitoringÐthe observation and recording of data on oneselfÐis the basis of information collection. In most studies of asthma self-management, a diary is employed. A typical asthma diary would ask patients to list the symptoms they experienced daily, their highest peak flow readings obtained in the morning and evening, and the medications they took for their asthma. Asthma diaries also serve

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to prompt patients to monitor their asthma. So as not to overwhelm patients in monitoring their behavior, Creer and Bender (1993) cautioned that target behaviors should be operationally defined, and that patients collect data for only specified periods of time. (iii) Information processing and evaluation Patients must learn to process and evaluate the information they collect about themselves and their asthma. Creer and Holroyd (1997) delineated five steps involved in information processing and evaluation: (a) patients must be able to detect changes that occur in the information they observe, record, and process about themselves; (b) a set of objective criteria must be established, such as their personal best peak flow reading, against which patients can evaluate any changes that have occurred in their breathing; (c) patients must evaluate and make judgments about the data they process; (d) patients must evaluate any changes that occur in their breathing in terms of the antecedents that may have produced the change, the behaviors they need to perform to alter any changes, and the consequences of their actions; and (e) asthma patients need to consider the contextual variables in processing and evaluating information about themselves. (iv) Decision making Making the correct decision is essential for successful self-management. A study by Creer (1990) analyzed decision making in gold standard physicians and patients. It was determined that both groups used decisionmaking strategies similar to those describe by Arkes (1981) in that they: (a) avoided preconceived notions; (b) were thoughtful and cautious; (c) generated a number of management alternatives; (d) did not misperceive the severity of the situation; (e) referred to a personal database; (f) thought in terms of probabilities; and (g) did not rely on memory. (v) Action Action involves the performance of selfmanagement skills to help control asthma. A number of components have been tested in selfmanagement programs for asthma, but selfinstruction, including self-statements, is a common thread of these programs.

(Bandura, 1986). On the basis of self-reaction, patients can establish realistic expectations about whether they need more training and expertise. Self-efficacy, the belief that one can adequately perform specific skills in a given situation (Bandura, 1977), influences the performance of self-management skills. The development of self-efficacy scales have permitted this construct to be evaluated in asthma (Tobin, Wigal, Winder, Holroyd, & Creer, 1986). A number of self-management programs have been developed and evaluated for both pediatric and adult asthma. Common outcomes of these programs include a decrease in related hospitalizations, ER visits, school and work absenteeism, asthma medication use, depression, and costs for asthma. At the same time, there have been reported increases in knowledge about asthma, performance of self-management skills, medication compliance, self-efficacy, and quality of life. The positive results have led expert panels on asthma (e.g., National Asthma Education Program, 1991) to recommend such training for all patients with the disorder. 8.14.8 IMPLICATIONS FOR HEALTH AND CLINICAL PSYCHOLOGY There has never been such a need for health and clinical psychology in the management of COPD and asthma than at the present time. The increasing prevalence of people with the disorders, as well as morbidity and mortality markers, reinforce the need for active psychological and behavioral input. Yet, despite an increasing number of signals for behavioral change in patients with asthma and COPD, the urgent need for psychological and behavioral interventions has gone unheeded by both medical or behavioral scientists. The need is illustrated by suggesting ways that health and clinical psychologists could become involved with COPD and asthma. 8.14.8.1 COPD A review of the literature suggests a myriad of ways that behavioral and psychological expertise could be applied to COPD. Four areas merit a brief comment: (i) smoking cessation; (ii) assessment; (iii) integration of behavioral skills; and (iv) extension of behavioral expertise in COPD. 8.14.8.1.1 Smoking cessation

(vi) Self-reaction Self-reaction refers to the attention patients direct towards evaluating their performance

It was estimated that three million people would die because of smoking in 1995; by 2025, the number of deaths from smoking is estimated

Implications for Health and Clinical Psychology to be 10 million (Peto, 1994). This is but one index of problems expected from cigarette smoking, a behavior that has hit a plateau in the USA (Centers for Disease Control, 1996b). Attempts by behavioral scientists to bring about smoking cessation have met with mixed results, particularly in the USA (Meltzer, 1994). A recent report from the Lung Health Study (Kanner, 1996) indicated that an extensive smoking cessation program could produce a 20% success rate in getting smokers at risk for COPD to give up smoking permanently. 8.14.8.1.2 Assessment Most outcome variables used in the rehabilitation of COPD patients are medical. However, the most important outcome of rehabilitation is that patients live a longer, happier, and more productive live. Attempts to assess quality of life by the Quality of WellBeing Scale have been made in a number of studies of COPD patients by Kaplan and colleagues (Kaplan, Atkins, & Timms, 1984). The results have been mixed in that quality of life has been shown to improve in some studies with COPD but not in others (Ries et al., 1995). The latter finding suggests that more disorderspecific instruments, in addition to general instruments such as the Quality of Well-Being Scale, might be employed to determine the impact that COPD has on the quality of life experienced by COPD patients. 8.14.8.1.3 Integration of behavioral skills In reviewing the literature by COPD, particularly the rehabilitation of patients with the disorder, it is invariably noted that success is a team effort. The skills of a number of medical and behavioral specialists were used to assist patients to live a more normal life. A synthesis of skills could provide the fuel for pulmonary rehabilitation programs for COPD. However, although each specialist brought their particular expertise to the rehabilitation process, there was no evidence that there had been any integration of skills by an interdisciplinary team to rehabilitate patients. 8.14.8.1.4 Extension of behavioral expertise Behavioral techniques can be extended in new directions, and to help solve new problems in COPD. For example, there have been no systematic attempts to develop and evaluate self-management programs for COPD. This is unfortunate given the success of self-management with asthma. Second, new medical procedures are being developed and tested with

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COPD. An illustration is the use of lung reduction surgery to improve the breathing of COPD patients (Rogers, Sciurba, & Keenan, 1996). Use of these procedures will generate behavioral problems that will need to be addressed. 8.14.8.2 Asthma Researchers and clinicians who have worked with asthma for a period often discuss the increasing complexity of the disorder and how it might be controlled. There are several areas that are deserving of behavioral research: (i) medication compliance; (ii) avoidance of attack triggers; (iii) environmental control; (iv) refinement of self-management processes; (v) maintenance of self-management performance; and (vi) introduction of new experimental designs. 8.14.8.2.1 Medication compliance As long as compliance rates in asthma patients remain, on average, below 50%, there will be the need for more medication compliance investigations. Medication compliance has become even more of an issue with patients who take both preventive and as-needed medications; these patients must remember to take both medications, but on different schedules. It would be easy for a health psychologist to spend an entire career investigating medication compliance in asthma. 8.14.8.2.2 Avoidance of attack triggers In many instances, patients can avoid exacerbations of their asthma by avoiding or escaping from stimuli known to trigger their asthma. When such triggers or precipitants for a patient are known, it is important to teach the patient to avoid them. A behavioral scientist should be involved in such training. 8.14.8.2.3 Environmental control A major thrust in the control of asthma is to control environmental stimuli known to precipitate asthma (Spector & Nicklas, 1995). In most cases, attempts to control the environment require application of behavioral modification techniques. Thus far, limited success has been attained in teaching patients to alter their environment in order to manage their asthma (Creer, 1998). If there is a group of scientists who are likely to modify the patient's environments, it is clinical or health psychologists. The challenge of achieving such a goal should excite the most radical behaviorist!

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8.14.8.2.4 Refinement of self-management processes Despite the development and evaluation of a number of programs for both pediatric and adult asthma we do not know exactly how patients perform self-management skills to control their asthma. There is need for more research into the processes of goal setting, information collection and processing, evaluation of data, decision making, action, and selfreaction. 8.14.8.2.5 Maintenance of self-management skills Although asthma self-management has reached the stage of refinement in development and evaluation, there is need to determine how to teach patients to perform self-management skills as long as is necessary to control their asthma (Creer, Levstek, & Reynolds, in press). There are intriguing data which indicate the maintenance of asthma self-management skills, over time and across settings, is stronger than anticipated (Levstek, 1996). However, more investigation is needed on this topic. 8.14.8.2.6 Design of studies Most studies on the self-management of asthma have used traditional clinical trials designs employed in determining the effects of medications. Patients are randomly assigned to a treatment group; the control group is given a placebo condition. At the end of a period of time, usually a year, outcomes are assessed. Creer, Levstek, and Reynolds (in press) argued that these are not appropriate designs to use in behavioral research, particularly in self-management. First, they pointed out that intervention is educational and behavioral in nature. Although those in the intervention group learn to manage their asthma, self-management education is withheld from the control group for a year or more. The approach is simply unethical. Second, self-management programs differ from traditional clinical trials in that one is not simply investigating acquisition of selfmanagement skillsÐan investigator wants to look at a more important outcome, namely the performance of learned skills. This cannot be determined from a traditional clinical trial because acquisition processes cannot be separated from performance processes. Creer, Levstek, and Reynolds (in press) concluded that designs developed by behavioral scientists must be used. With these designs, patients can be randomly divided into treatment and waiting-list control groups. At the end of

the intervention, differences between the two groups in knowledge of asthma and selfmanagement can be assessed. Thereafter, whereas the waiting-list control receives the educational component, the patients taught the self-management skills should serve as their own control. This permits investigators to carefully study the main question in using rehabilitation and self-management approaches: how do patients perform and maintain their performance of self-management skills across settings and over time? 8.14.9 CONCLUSIONS We would like to conclude with three comments. First, there is a pronounced need for health and clinical psychologists to be involved in the management of COPD and asthma. The need for behavioral expertise will only increase in the future. To actively help establish control over the disorders, however, psychologists must make a concerted effort to sell their skills to medical scientists who work with these conditions. This has not happened. Psychologists who have offered their expertise with COPD and asthma have sometimes been rebuffed by physicians in the past, but this reaction is fast fading. If you can help a patient with COPD to quit smoking or a child with asthma to comply with a medication regimen, your assistance will be welcomed. Second, it behoves any clinical or health psychologist to learn about the medical and biological aspects of asthma or COPD if they are to work with the disorders. Not only will they be able to apply their expertise in a more effective manner, but they will not inadvertently harm patients. The latter event could have occurred in the past, for example, had psychologists increased compliance to asthma treatment regimens that were potentially harmful (Creer & Levstek, 1996). Finally, one of the authors has worked with asthma for three decades. He used to hear medical scientists, particularly immunologists, proclaim that someday they would discover a cure for asthma and put everyone working with the disorder out of work. The response by the psychologist was that the day couldn't come soon enough. However, the medical scientists were always reminded that once a cure was developed, it would be the psychologist who would be called on to teach patients to properly use and comply with the medical regimen. As there are no cures in sight for either COPD or asthma, this is a moot comment. The exchange puts into perspective, however, the role we as clinical and health psychologists can play with respect to asthma and COPD in the future.

References 8.14.10 REFERENCES Agle, D. P., Baum, G. L., Chester, E. H., & Wendt, M. (1973). Mulidiscipline treatment of pulmonary insufficiency: I. Psychological aspects of rehabilitation. Psychosomatic Medicine, 35, 41±49 Agle, D. P., & Baum, G. L. (1977). Psychosocial aspects of chronic obstructive pulmonary disease. Medical Clinics of North America, 61, 749±758. American Thoracic Society (1987). Standards for the diagnosis and care of patients with chronic obstructive pulmonary disease (COPD) and asthma. American Review of Respiratory Diseases, 136, 225±244. American Thoracic Society (1993). Guidelines for the evaluation of impairment/disability in patients with asthma. American Review of Respiratory Diseases, 147, 1056±1061. American Thoracic Society (1995). Standards for the diagnosis and care of patients with chronic obstructive pulmonary disease. American Journal of Respiratory and Critical Care Medicine, 152, S77±S120. Arkes, H. R. (1981). Impediments to accurate clinical judgment and possible ways to minimize their impact. Psychological Bulletin, 110, 486±498. Bandura, A. (1977). Self-efficacy: toward a unifying theory of behavioral change. Psychological Review, 84, 191±215. Bandura, A. (1986). Social foundations of thought and action: A social cognitive theory. Englewood Cliffs, NJ: Prentice-Hall. Beck, A. T. (1967). Depression: Clinical, experimental, and theoretical aspects. New York: Harper & Row. Bender, B. G., & Klinnert, M. D. (in press). Psychological correlates of asthma severity and asthma treatment outcome in children. In H. Kotses & H. Harver (Eds.), Behavioral contributions to the management of asthma. New York: Marcel Dekker. Bender, B. G., & Milgrom, H. (1992). Theophyllineinduced behavior change in children: An objective evaluation of parents' perception. Journal of the American Medical Association, 267, 2621±2624. Bernstein, I. L. (1988). Asthma in adults: Diagnosis and treatment. In E. Middleton, Jr., O. E. Reed, & E. F. Ellis (Eds.), Allergy: Principles and practice (4th ed., pp. 901±934). St. Louis, MO: Mosby. Burrows, B. (1991). Epidemiologic evidence for different types of chronic airflow obstruction. American Review of Respiratory Diseases, 143, 1452±1455. Centers for Disease Control (1992). AsthmaÐUnited States, 1980±1990. Morbidity and Mortality Weekly Reports, 45, 733±735. Centers for Disease Control (1996a). Asthma mortality and hospitalization among children and young adultsÐ United States, 1980±1993. Morbidity and Mortality Weekly Reports, 45, 350±353. Centers for Disease Control (1996b). Cigarette smoking among adultsÐUnited States, 1994. Morbidity and Mortality Weekly Reports, 45, 588±590. Coultas, D. B., Gong, H., Grad, R., Handler, A., McCurdy, S. A., Player, R., Rhoades, E. R., Samet, J. M., Thomas, A., & Westley, M. (1993). Respiratory diseases in minorities of the United States. American Journal of Respiratory and Critical Care Medicine, 149, S93±S131. Creer, T. L. (1974). Biofeedback and asthma. Advances in Asthma and Allergy, 1, 6±11. Creer, T. L. (1979). Asthma therapy. A behavioral health care system for respiratory disorders. New York: Springer. Creer, T. L. (1982). Asthma. Journal of Consulting and Clinical Psychology, 72, 912±921. Creer, T. L. (1990). Strategies for judgment and decisionmaking in the management of childhood asthma. Pediatric Asthma, Allergy, and Immunology, 4, 253±264.

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Creer, T. L. (1991). The application of behavioral procedures to childhood asthma: Current and future perspectives. Patient Education and Counseling, 17, 9±22. Creer, T. L. (1992). Psychological and behavioral assessment of childhood asthma. Part II. Behavioral approaches. Pediatric Asthma, Allergy, and Immunology, 6, 21±34. Creer, T. L. (1993). Medication compliance and childhood asthma. In N. A. Krasnegor, L. Epstein, S. B. Johnson, & S. J. Yaffe (Eds.), Developmental aspects of health compliance behavior (pp. 303±333). Hillsdale, NJ: Erlbaum. Creer, T. L. (1997). Psychology of adjustment. An applied approach. Upper Saddle River, NJ: Prentice-Hall. Creer, T. L. (1998). Childhood asthma. In T. H. Ollendick & M. Hersen (Eds.), Handbook of child psychopathology (3rd ed., pp. 395±415). New York: Plenum. Creer, T. L., Backial, M., Burns, K. L., Leung, P., Marion, R. J., Miklich, D. R., Morrill, C., Taplin, P. S., & Ullman, S. (1988). Living with asthma: Part I. Genesis and development of a self-management program for childhood asthma. Journal of Asthma, 25, 335±362. Creer, T. L., & Bender, B. G. (1993). Asthma. In R. J. Gatchel & E. B. Blanchard (Eds.), Psychophysiological disorders (pp. 151±203). Washington, DC: American Psychological Association. Creer, T. L., & Bender, B. G. (1995). Pediatric asthma. In M. C. Roberts (Ed.). Handbook of pediatric psychology (2nd ed., pp. 219±240). New York: Guilford. Creer, T. L., & Christian, W. P. (1976). Chronically-ill and handicapped children: Their management and rehabilitation. Champaign, IL: Research Press. Creer, T. L., & Holroyd, K. A. (1997). Self-management. In A. Baum, C. McManuis, S. Newman, J. Weinman, & R. West (Eds.), Cambridge handbook of psychology, health, and medicine (pp. 255±258). Cambridge, UK: Cambridge University Press. Creer, T. L., Ipacs, J., & Creer, P. P. (1983). Changing behavioral and social variables at a residential treatment facility for childhood asthma. Journal of Asthma, 20, 11±15. Creer, T. L., & Levstek, D. (1996). Medication compliance and asthma: overlooking the trees because of the forest. Journal of Asthma, 33, 203±211. Creer, T. L., & Levstek, D. (1997). Adherence to asthma regimens. In, D. S. Gochman (Ed.), Handbook of health behavior research (Vol. II, pp. 131±148). New York: Plenum. Creer, T. L., Levstek, D., & Reynolds, R. V. C. (in press). History and conclusions. In H. Kotses & A. Harver (Eds.), The self-management of asthma. New York: Marcel Dekker. Creer, T. L., Renne, C. M., & Christian, W. P. (1976). Behavioral contributions to the rehabilitation of childhood asthma. Rehabilitation Literature, 37, 226±232; 247. Dahlem, N. W., Kinsman, R. A., & Horton, D. J. (1979). Requests for as-needed medications by asthmatic patients. Journal of Allergy and Clinical Immunology, 63, 23±27. Desquin, B. W., Holt, I. J., & McCarthy, S. M. (1994). Comprehensive care of the child with a chronic condition. Part 1. Understanding chronic conditions in childhood. Current Problems in Pediatrics, 24, 199±218. Dudley, D. L., & Sitzman, J. (1988). Psychobiological evaluation and treatment of COPD. In A. J. McSweeney & I. Grant (Eds.), Chronic obstructive pulmonary disease: A behavioral perspective (pp. 183±135). New York: Marcel Dekker. Ellis, E. F. (1993). Asthma in infancy and childhood. In W. W. Busse (Eds.), Allergy: Principles and practice (4th ed., pp. 1225±1262) St. Louis, MO: Mosby. Evans, R. III. (1993). Epidemiology and natural history of asthma, allergic rhinitis, and atopic dermatitis. In

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E. Middleton, Jr., C. E. Reed, E. F. Ellis, N. F. Adkinson Jr., J. W. Yunginger, & W. W. Busse (Eds.), Allergy: Principles and practice (4th ed., pp. 1109±1136). St. Louis, MO: Mosby. Fletcher, C. M., Peto, R., Tinker, C. M., & Speizer, F. E. (1976). The natural history of chronic bronchitis and emphysema. Oxford, UK: Oxford University Press. French, T. M., & Alexander, F. (1941). Psychogenic factors in bronchial asthma. Psychosomatic Medicine Monographs, 4, 1±92. Grant, I., Heaton, R. K., McSweeny, A. J., Adams, K. M., & Timms, R. M. (1980). Brain dysfunction in COPD. Chest, 77, 308±309. Jensen, P. S. (1983). Risk, protective factors, and supportive interventions in chronic airway obstruction. Archives of General Psychiatry, 40, 1203±1207. Jones, N. F., Kinsman, R. A., Dirks, J. F., & Dahlem, N. W. (1979). Psychological contributions to chronicity in asthma: patient response styles influencing medical treatment and its outcome. Medical Care, 17, 1103±1118. Kaliner, M., & Lemanske, R. (1992). Rhinitis and asthma. Journal of the American Medical Association, 268, 2851±2873. Kanner, R. E. (1996). Early intervention in chronic obstructive pulmonary disease: A review of the Lung Health Study results. Medical Clinical of North America, 80, 523±544. Kaplan, R. M., & Atkins, C. J. (1988). Behavioral interventions. In A. J. McSweeney & I. Grant (Eds.), Chronic obstructive pulmonary disease. A behavioral perspective (pp. 123±162). New York: Marcel Dekker. Kaplan, R. M., & Atkins, C. J., & Timms, R. M. (1984). Validity of a quality of well-being scale as an outcome measure in chronic obstructive pulmonary disease. Journal of Chronic Disease, 37, 85±95. Kaplan, B. A., & Mascie-Taylor, C. G. (1989). Biosocial correlates of asthma in a national sample of young adults. Journal of Science, 21, 475±482. Kinsman, R. A., Dirks, J. F., & Schraa, J. C. (1981). Psychomaintenance in asthma. Personal styles affecting medical management. Respiratory Therapy, 39±46. Kinsman, R. A., Luparello, T., O'Banion, K., & Spector, S. (1973). Multidimensional analysis of the subjective symptomatology of asthma. Psychosomatic Medicine, 35, 250±267. Kopacz, M. A. (1988). Nursing care of patients with COPD: a sociobiological perspective. In A. J. McSweeney & I. Grant (Eds.), Chronic obstructive pulmonary disease. A behavioral perspective (pp. 237±278). New York: Marcel Dekker. Kotses, H., Bernstein, I. L., Bernstein, D. I., Reynolds, R. V. C., Korbee, L., Wigal, J. K., Ganson, E., Stout, C., & Creer, T. L. (1995). A self-management program for adult asthma. Part I. Development and evaluation. Journal of Allergy and Clinical Immunology, 95, 529±540. Lantner, R. R., & Ros, S. P. (1995). Emergency management of asthma in children: impact of NIH guidelines. Annals of Allergy, Asthma, & Immunology, 74, 188±190. Levstek, D. A. (1996). Follow-up of patients receiving asthma self-management training. Unpublished raw data. Lewis, S. F., & Fiore, M. C. (1995). Smoking cessation: What works? what doesn't? The Journal of Respiratory Diseases, 16, 497±510. Marion, R. J., Creer, T. L., & Reynolds, R. V. C. (1985). Direct and indirect costs associated with the management of childhood asthma. Annals of Allergy, 54, 31±34. Marwick, C. (1995). Inner-city asthma control campaign under way. Journal of the American Medical Association, 274, 1004. Mazurek, D. A. & Gross, N. J. (1995). Smoking cessation lessons from the Lung Health Study. The Journal of Respiratory Diseases, 16, 1049±1060.

McSweeney, A. J. (1984). Assessing the quality of life in patients with chronic obstructive pulmonary disease. In N. K. Wenger, M. E. Mattson, C. D. Furberg, & J. Elinson (Eds.), Assessment of quality of life in clinical trials of cardiovascular therapies (pp. 185±217). New York: LeJacq. McSweeney, A. J. (1988). Quality of life in relation to COPD. In A. J. McSweeney & I. Grant (Eds.), Chronic obstructive pulmonary disease. A behavioral perspective (pp. 59±85). New York: Marcel Dekker. McSweeney, A. J., & Creer, T. L. (1995). Health-related quality of life assessment in medical care. Disease-aMonth, 41, 1±72. McSweeney, A. J., Grant, I., Heaton, R. K., Adams, K. M., & Timms, R. M. (1982). Life quality of patients with chronic obstructive pulmonary disease. Archives of Internal Medicine, 142, 473±478. Meltzer, E. O. (1994). Prevalence, economic, and medical impact of tobacco smoking. Annals of Allergy, 73, 381±388. National Asthma Education Program (1991). Executive summary: Guidelines for the diagnosis and management of asthma (Publication No. 91±3042A). Washington, DC: US Department of Health and Human Services. National Heart, Lung, and Blood Institute (1992). International consensus report on diagnosis and treatment of asthma (Publication No. 92±3091). Bethesda, MD: Author. National Institutes of Health (1995). Global initiative for asthma (National Heart, Lung, and Blood Institute Publication No. 95±3659). Bethesda MD: Author. Niederman, M. S., Clemente, P., Fein, A. M., Feinsilver, S. H., Robinson, D. A., Ilowite, J. S., & Bernstein, M. G. (1991). Benefits of a multidisciplinary pulmonary rehabilitation program. Chest, 99, 798±804. Newacheck, P. W., Budetti, P. P., & Halfon, N. (1986). Trends in activity-limiting chronic conditions among children. American Journal of Public Health, 76, 178±184. Parker, S. R. (1988). Behavioral science aspects of COPD: current status and future directions. In A. J. McSweeney & I. Grant (Eds.), Chronic obstructive pulmonary disease. A behavioral perspective (pp. 279±303). New York: Marcel Dekker. Peto, R. (1994). Smoking and death: the past 40 years and the next 40. British Medical Journal, 309, 937±939. Petty, T. L. (1990). Definitions in chronic obstructive pulmonary disease. Clinics in Chest Medicine, 11, 363±373. Prigatano, G. P., & Grant, I. (1988). Neuropsychological correlates of COPD. In A. J. McSweeney & I. Grant (Eds.), Chronic obstructive pulmonary disease. A behavioral perspective (pp. 39±57). New York: Marcel Dekker. Reed, C. E. (1986). New therapeutic approaches in asthma. Journal of Allergy and Clinical Immunology, 77, 537±543. Renne, C. M., & Creer, T. L. (1985). Asthmatic children and their families. In M. L. Walraich & D. K. Routh (Eds.), Advances in developmental and behavioral pediatrics, (Vol. 6, pp. 41±81). Greenwich, CT: JAI Press. Ries, A. L. (1995). What pulmonary rehab can do for your patients. The Journal of Respiratory Diseases, 16, 685±704. Ries, A. L., Kaplan, R. M., Limberg, T. M., & Prewitt, L. M. (1995). Effects of pulmonary rehabilitation on physiologic and psychosocial outcomes in patients with chronic obstructive pulmonary disease. Annals of Internal Medicine, 122, 823±832. Rogers, R. M., Sciurba, F. C., & Keenan, R. J. (1996). Lung reduction surgery in chronic obstructive lung disease. Medical Clinics of North America, 80, 623±644. Russo, D. C., & Varni, J. W. (1982). Behavioral pediatrics. In D. C. Russo & J. W. Varni (Eds.), Behavioral pediatrics: Research and practice (pp. 3±24). New York: Plenum.

References Sanford, A., Weir, T., & Pare, P. (1996). The genetics of asthma. American Journal of Respiratory and Critical Care Medicine, 153, 1749±1765. Schiffer, C. G., & Hunt, E. P. (1963). Illness among children (Children's Bureau Publication No. 405). Washington, DC: US Government Printing Office. Sherrill, D. L., Lebowitz, M. D., & Burrows, B. (1990). Epidemiology of chronic obstructive pulmonary disease. Clinics in Chest Medicine, 11, 375±387. Snider, G. L. (1995). What's in a name? Names, definitions, descriptions, and diagnostic criteria of diseases with emphasis on chronic obstructive pulmonary disease. Respiration, 62, 297±301. Spector, S. L., & Nicklas, R. A. (Eds.) (1995). Practice parameters for the diagnosis and treatment of asthma. Journal of Allergy and Clinical Immunology, 96, 707±870. Staudenmayer, H., Kinsman, R. A., Dirks, J. F., Spector, S. L., & Wangaard, C. (1979). Medical outcome in asthmatic patients: Effects of airways hyperreactivity and symptom focused anxiety. Psychosomatic Medicine, 41, 109±118. Stempel, D. A., Hedblom, E. C., Durcanin-Robbins, J. F.,

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& Sturm, L. L. (1996). Use of a pharmacy and medical claims database to document cost centers for 1993 annual asthma expenditures. Archives of Family Medicine, 5, 36±40. Stempel, D. A., Sturm, L. L., Hedblom, E. C., & CurcaninRobbins, J. F. (1995). Total costs of asthma care. Journal of Allergy and Clinical Immunology, 95, 217. Taylor, W. R., & Newacheck, P. W. (1992). Impact of childhood asthma on health. Pediatrics, 90, 657±662. Tobin, D. L., Wigal, J. K., Winder, J. A., Holroyd, K. A., & Creer, T. L. (1987). A self-efficacy scale for asthma. Annals of Asthma, 59, 273±277. Vance, V. J., & Taylor, W. F. (1971). Status and trends in residential asthma homes in the United States. Annals of Allergy, 29, 428±437. Weiss, K. B., Gergen, P. J., & Hodgson, T. A. (1992). An economic evaluation of asthma in the United States. New England Journal of Medicine, 326, 862±866. Windsor, R. A., Green, L. W., & Roseman, J. M. (1980). Health promotion and maintenance for patients with obstructive pulmonary disease: a review. Journal of Chronic Disease, 33, 5±12.

Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.15 Gynecological Problems MYRA HUNTER University College London, UK and ANNE WALKER University of Aberdeen, UK 8.15.1 INTRODUCTION

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8.15.1.1 Gynecological Problems 8.15.1.2 Theoretical Models and Practices in Gynecology 8.15.1.3 Gender Issues in Gynecology 8.15.2 PSYCHOLOGICAL ASPECTS OF GYNECOLOGICAL PROCEDURES

8.15.3 MENSTRUAL DISORDERS

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8.15.3.1 Definition and Diagnosis 8.15.3.2 Dysmenorrhea 8.15.3.3 Menorrhagia 8.15.4 CHRONIC PELVIC PAIN

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8.15.4.1 Gynecological Approaches to Chronic Pelvic Pain 8.15.4.2 Women's Experience of Chronic Pelvic Pain 8.15.4.3 Psychological Interventions for Chronic Pelvic Pain 8.15.5 PREMENSTRUAL SYNDROME

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Definition and Diagnosis Epidemiology and Risk Factors Explanations for Premenstrual Syndrome Biomedical Approaches to Treatment Psychological Interventions for Premenstrual Syndrome

8.15.6 MENOPAUSE 8.15.6.1 8.15.6.2 8.15.6.3 8.15.6.4 8.15.6.5

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8.15.2.1 Investigating Complaints 8.15.2.2 Treatment Procedures 8.15.2.3 Psychological Interventions

8.15.5.1 8.15.5.2 8.15.5.3 8.15.5.4 8.15.5.5

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Definition Epidemiological Studies Hot Flushes/Flashes and Night Sweats Hormone Replacement Therapy Psychological Interventions

8.15.7 CLINICAL PSYCHOLOGIST'S ROLE

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8.15.8 CONCLUSION

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8.15.9 REFERENCES

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8.15.1 INTRODUCTION 8.15.1.1 Gynecological Problems Gynecology can be broadly defined as the science of physiological functions and disorders specific to women (Moscussi, 1993). In practice, this has come to mean functions and disorders of the female reproductive system, rather than of women per se (see below). Gynecological problems, then, are those complaints which result from a disorder within the female reproductive system (e.g., ovarian cancer, endometriosis), or are temporally linked with some aspect of this system (e.g., premenstrual syndrome, menopausal hot flushes), and for which help is sought from a gynecologist. The nature of these problems means that gynecology often overlaps with other medical and surgical specialties (e.g., oncology, psychiatry, and pain management), while their frequency means that many gynecological problems are investigated and treated in nonspecialist primary healthcare settings. The female reproductive system is largely hidden from direct observation and, in most cultures, its functions are private and rarely discussed. Its visible aspects, menstruation and the menstrual cycle, vary from one woman to the next and across the lifespan (Vollman, 1977). As a result, it is often difficult for both women and clinicians to know what is normal. For example, when is menstruation considered to be too heavy, or menstrual pain so severe as to be abnormal? What is a normal frequency for menopausal hot flushes? So, women seek help from healthcare services for a variety of reasons, for information, advice and reassurance, for investigation of asymptomatic abnormalities found in routine screening (e.g., abnormal cervical smear test), as well as investigation and treatment of symptoms. The most common complaints for which women seek help are menstrual changes, pain, and vaginal discharge (Anderson & McPherson, 1984). Some symptomatic women experience a number of conditions, although they may not have been referred (and/ or be seeking help) for all of them. For example, Bancroft, Williamson, Warner, Rennie, and Smith (1993) found considerable overlap in symptom experience between women referred to a gynecologist for either premenstrual syndrome (PMS), menorrhagia, or dysmenorrhea. Most of the women referred to gynecologists are of reproductive age, that is, between adolescence and menopause. As the population ages, however, the number of postmenopausal women referred to a gynecologist for treatment of abnormal uterine bleeding is increasing (Jaluvka & Weitzel, 1995). Hence, women of all ages may experience gynecological problems.

Gynecological problems are associated with high levels of emotional distress, as measured by standard psychological instruments (e.g., General Health Questionnaire, Beck Depression Inventory, Hospital Anxiety and Depression Scale) in surveys of women attending gynecological clinics (Ballinger, 1997; Byrne, 1984; Worsley, Walters, & Wood, 1977). For example, between 40% and 50% of gynecology clinic attenders have been estimated to be at risk for clinical depression as measured by the General Health Questionnaire (Byrne, 1984; Goldberg, 1972). Gynecological problems in themselves may be a cause of distress. In addition, some problems such as premenstrual syndrome include a wide range of psychological as well as physical symptoms within the diagnosis. However, surveys of gynecology clinic attenders suggest that their distress is often associated with concurrent personal and social problems (Worsley et al., 1977), and occurs regardless of whether or not an organic cause can be found for the woman's symptoms (Pearce, 1987). These findings are consistent with evidence from clinic attenders in general that psychological and social factors are important predictors of helpseeking behaviour (Mechanic, 1980) and suggest that some women may, for complex reasons, be expressing emotional distress (which may relate to problems elsewhere in their lives) in a gynecological setting. However, the precise mechanisms underlying presentation of particular symptoms or problems is little understood. Whatever the cause of women's distress, the degree of it is ample evidence that psychological interventions have an important role to play alongside traditional gynecological treatments.

8.15.1.2 Theoretical Models and Practices in Gynecology Modern gynecology is a medical and surgical specialty located firmly within a biomedical paradigm. However, many of the problems seen by gynecologists cannot easily be explained within this framework (Beard, 1984), and numerous critics have questioned its biologically reductionist approach to women's distress (Daley, 1978; Ussher, 1992). Hence, a broad range of theories have been developed to explain specific gynecological problems, both from within the medical profession and outside it. These theories in turn have had significant impact on both research and practice. Current theories can be broadly separated into biomedical, sociocultural, psychological, and biopsychosocial accounts (Hunter, 1994; Ussher, 1992; Walker, 1995).

Introduction The biomedical model proposes that biological factors are the major cause of gynecological complaints. Biological factors include overt organic pathology (e.g., carcinoma, endometriosis, ovarian cysts) and assumed dysfunctions in the hypothalamo±pituitary± ovarian (HPO) axis, which controls the reproductive system (Medvei, 1982). The HPO axis is characterized by a complex and intricate interplay of a variety of peripheral hormones and neurotransmitters, including estrogen, progesterone, luteinizing hormone, and follicle stimulating hormone (Oudshoorn, 1994). Theories which implicate the HPO axis, often described as hormonal theories, have been particularly influential in explanations of menstrual and menopausal problems. The biomedical model has achieved some success in explaining gynecological problems; however, as indicated above, physical symptoms often persist in the absence of evidence of organic pathology or HPO dysfunction (Worsley et al., 1997). In particular, there has been little empirical support for biomedical explanations of psychological symptoms or emotional distress associated with gynecological problems, despite its popularity in both lay and medical discourse (Ussher, 1992). The treatments that women receive from gynecologists are, however, generally derived from these theories. Surgical intervention, usually the removal or modification of parts of the reproductive system (e.g., hysterectomy, endometrial ablation, pelvic floor repair), is the treatment of choice in most cases of overt pathology, but is often also seen as a last resort solution to chronic, unexplained gynecological problems (O'Brien, 1994), raising concerns that it is being used inappropriately (Goudsmit, 1994; Smith, 1996). Medical treatments range from those targeted at specific symptoms (e.g., analgesics, anti-inflammatories, antidepressants) to those which alter aspects of HPO function (e.g., antigonadotropins, gonadotropin agonists, oral contraceptives, hormone replacement therapy, etc.), each of which is associated with its own risks and benefits (Mortola, 1994). Sociocultural accounts of gynecological problems locate their cause in some aspect of a woman's social or cultural circumstances. These circumstances may expose her to hazards that increase the likelihood of pathology, for example, environmental pollution, aspects of working conditions, heterosexual activity, poverty, nutrition, and so on (Kuh & Stirling, 1995; Messing, Saurel-Cubizolles, Bourgine, & Kominski, 1993). In addition, there is considerable variation between cultures and across time in the definition of particular physical or emotional states as signs of illness (Helman, 1990).

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Hence, sociocultural forces may also act to ªpathologizeº experiences which are not inherently abnormal, by labeling them as problems or diseases (Dingwall, 1992). For example, it has been argued that the normal feelings which most women experience premenstrually have been constructed as problematic by modern Western cultures (and labeled PMS), because they result in behaviors which do not conform to societal expectations of femininity (Johnson, 1987; Laws, Hey, & Eagon, 1985; Martin, 1989). Hence, radical feminist writers have argued that women are controlled by the simultaneous medicalization of ªnormalº experiences, such as menstruation and menopause, and lack of medical interest in abnormal experiences, such as endometriosis or pelvic inflammatory disease (Daly, 1978). From this perspective, interventions are targeted at societies, rather than individuals, and may range from lobbying for safer working conditions to promoting safer sex or changing public perceptions of women. Psychological models are predominantly concerned with the explanation of emotional distress in relation to gynecological problems or experiences. The earliest models were psychodynamic, attributing anxiety or depression to unconscious conflicts triggered by physiological states, for example, around menstruation (Daly, 1935; Horney, 1931). More recently, cognitive, social cognition, and biopsychological models have been developed (Asso, 1992; Ruble & Brooks-Gunn, 1979). Currently, the most influential psychological models relate to stress and coping, and are adapted largely from the work of Lazarus and Folkman (1984), among others. These models propose that the cognitive appraisal of physiological states or gynecological problems as stressful is the cause of emotional distress, and that a variety of coping mechanisms can be used to relieve the distress. Clinical interventions function either to alter the appraisal of the situation or to develop effective coping strategies. A variety of techniques have been used to do this, with cognitive-behavior therapy approaches being most popular (Hunter, 1994). Relaxation training, stress management, social support through self-help groups, and other strategies are often used additionally to help women to cope with their experiences. Despite the proliferation of models and practices in gynecology, it is still not uncommon for distress in a gynecological context to be attributed to either a woman's body (Studd & Smith, 1993) or her mind (Goudsmit, 1994). This mind±body split can lead to inevitable biases in evaluation and treatment of problems, the neglect of psychosocial causes of problems, as well as communication difficulties and

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dissatisfaction with consultations. Biopsychosocial or multifactorial models have been developed to address the need to examine the complex relationships between psychological, social and biological influences (Hunter, 1994; Ussher, 1992; Walker, 1995). A biopsychosocial perspective attempts to reconcile the different etiological theories and to explain individual differences between women. A woman's psychosocial and cultural contexts are taken into account as well as her experience of physical changes, in determining the meaning and impact of gynecological problems. Cognitive factors such as symptom attributions or illness representations are often positioned centrally in biopsychosocial models, and the model can be expanded and tailored to individual women in clinical settings. From this perspective, single or multiple interventions may be needed, depending on the individual concerned, and the clinical health psychologist becomes a crucial member of the therapeutic team.

8.15.1.3 Gender Issues in Gynecology Gynecology has been practiced since ancient times (McKay, 1901; Moscucci, 1993), and the theories and practices it has adopted reflect the social and cultural gendered discourses, specific to particular times (Ehrenreich & English, 1973; Moscucci, 1993; Smith-Rosenberg & Rosenberg, 1973). For most of written history, behavior which does not conform to a particular female stereotype has been regarded as a sign of either illness or madness, and attributed to women's reproductive body. For example, in Greco-Roman times emotional and health problems in women were attributed to the ªwandering wombº (McKay, 1901). Similarly, nineteenth century expressions of distress or dissatisfaction were seen as sexual or ªhystericalº in origin and gynecological surgery (e.g., clitoridectomy) was often used as a treatment (Showalter, 1987; Ussher, 1991). In the past 20±30 years, hormonal explanations of women's distress during the menstrual cycle, the postpartum period, and the menopause have become more pervasive (Dalton, 1977; Studd & Smith, 1993). No matter what form specific theories take, it remains the case that women's well-being and behavior is attributed to some aspect of reproductive function in a way that men's well-being and behavior is not (andrology is a far less developed discipline than gynecology, for example (Gannon, 1996). Hence, gender issues underlie the very existence of gynecology (Moscucci, 1993). Gender is also an issue at a more interpersonal level in gynecological practice. Gyne-

cology is an unusual medical specialty in that the client group is specifically female and the doctors predominantly male (Cockburn & Bewley, 1996). The problems under investigation, being related to women's bodies, sexuality, and reproduction, are inevitably influenced by social constructions of gender and genderappropriate behavior. For example, a gynecological consultation, which frequently includes an internal examination, may be seen to recreate a stereotypical heterosexual relationship in which the female is powerless, passive, and dependent (Weiss & Meadow, 1979). It has been argued, ironically, that even this branch of medicine derives its norm from the heterosexual male (Rosser, 1994), defining women's health, especially their sexual health, in terms of relationships with men. Thus gynecological practice focuses primarily upon heterosexual activity, and therefore may regulate aspects of women's sexuality and reproduction, for example, by means of access to abortion and fertility treatments, and by surgical treatments such as hysterectomy and oophorectomy. Scant attention has been paid to the gynecological health needs of lesbian women, who are assumed (erroneously) to experience fewer gynecological problems than heterosexual or bisexual women (Burns, 1992; Johnson, Smith, & Guenther, 1987). In addition, some reproductive issues for which both men and women are responsible, such as contraception and infertility, have become defined as solely or primarily women's health issue (Woollett, 1996). 8.15.2 PSYCHOLOGICAL ASPECTS OF GYNECOLOGICAL PROCEDURES 8.15.2.1 Investigating Complaints The first stage after a woman has been referred to a gynecologist is investigation of her complaint. The range of problems seen in gynecological clinics means that this investigation may take a variety of forms, from invasive procedures, such as dilatation and curettage (D&C), to daily diary keeping and questionnaire completion. The increasing emphasis on screening and well-woman clinics in primary health care means that gynecological investigations (especially pelvic examinations and cervical smear tests) are not only conducted in gynecology clinics, although more invasive procedures are more likely to occur in hospital settings. Most investigations require a vaginal examination which for many women is unpleasant and for some traumatic (Areskog-Wijma, 1987). Female genitalia are generally hidden from

Psychological Aspects of Gynecological Procedures view, and in most cultures showing and touching of them is taboo outside intimate sexual relationship (Rafferty & Williams, 1996). Although the doctor may be concerned with safety and the routine nature of these examinations, many women feel uncomfortable about a stranger looking at and touching an intimate part of their anatomy (Wijma & AreskogWijma, 1987). Some women describe these examinations as frightening and degrading, and in surveys many express a preference for a female doctor (Areskog-Wijma, 1987; Ivins & Kent, 1993). For a subgroup of women, gynecological procedures may be so stressful that they experience symptoms of post-traumatic stress disorder (PTSD) afterwards. Menage (1993) surveyed the gynecological experiences of 500 women recruited through press advertisements, 30 of whom met the criteria for PTSD. Although this is not an epidemiological study and may overestimate the frequency of traumatic experiences, it does suggest that the psychological impact of these procedures can be considerable. Thus, from the woman's point of view the gynecological consultation, involving discussion of both personal and sexual issues in combination with an intimate physical examination, is rarely considered routine, and for many women can be a stress in itself (Rafferty & Williams, 1996). Medical consultations in general are unlike ordinary social encounters and have been extensively studied by social scientists, especially with regard to characteristics which hinder communication between healthcare professionals and clients (Ley, 1988; Pitts, 1991; Stewart & Roter, 1989). Communication between health-care professionals and women seeking help for gynecological problems is often difficult. Many women express dissatisfaction with the amount or quality of information they receive, especially from general practitioners, about the interventions or investigations they undertake (Corney & Stanton, 1991; Grace, 1995a). Many women feel that their symptoms are not taken seriously by their doctors, or that they are seen as neurotic. This is particularly true of conditions such as PMS, menorrhagia, or chronic pelvic pain, which are difficult to treat effectively. In these situations, many women lose faith in doctors and develop their own strategies for coping (Scambler & Scambler, 1993; Zadinsky & Boyle, 1996.)

8.15.2.2 Treatment Procedures Women experiencing gynecological procedures are a heterogeneous group in terms of age, and other factorsÐreligion, ethnicity, sexuality,

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social class, education, physical and intellectual ability, for example. As a consequence, it is difficult to generalize about the psychological aspects of their experience or the meaning that particular procedures will have for all women. Epidemiological studies have shown that some groups of women are more likely to experience some types of procedure than others. For example, women with learning difficulties are more likely to experience therapeutic amenorrhea, and less likely to experience laparotomies or D&C procedures than other women (Houvinen, 1993). Similarly, a large nationally representative cohort study of hospital admissions in Britain found significant differences in the frequency of hysterectomy, D&C, and hospital admission rates according to social class and educational qualification, with all procedures being more frequent amongst the less advantaged groups (Kuh & Stirling, 1995). Studies like this suggest that, although there may be similarities across women, there will also be differencesÐwhich will be mediated by inequalities in healthcare and clinical assumptions about what is in a particular woman's interest. Further research is needed to investigate why gynecological procedure rates vary in this way. In addition to the stresses associated with any gynecological consultation, particular procedures also arouse anxiety, because of concerns about what an investigation may show or the longer term consequences of treatment. It is difficult in these situations to disentangle the psychological effects of particular diagnoses (especially those which might imply cancer) and the stress of the procedure itself. For example, women who undergo laser treatment to prevent the development of cervical intraepithelial neoplasia (CIN) into cervical cancer experience considerable emotional upheaval and upset as they progress through diagnosis and treatment (Nugent & Tamlyn-Leamann, 1992; Posner & Vessey, 1988), although the treatment itself may not have measurable psychological costs over and above the effect of diagnosis (Palmer, Tucker, Warren, & Adams, 1993). Palmer et al. (1993) found that women who were diagnosed as having CIN had significantly higher scores on measures of intrusive thoughts, avoidance, and state anger than women who received a negative smear test result; however, there were no significant differences on these measures before and after laser treatment. Although these findings suggest that the treatment does not have additional psychological costs, they also imply that there is no immediate psychological benefit of the treatment. Interviews with the women suggested that fear of recurrence and progression of the CIN into cancer was a major

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worry, and although they were glad to have had the treatment, they were not fully reassured that it would prevent abnormal cells in the future. Many of the women attributed the cause of the disease to sexual activity, especially female promiscuity, and felt differently about their own bodies and their sexual relationships as a result. The feelings of defilement many of them described were an additional component of their distress. Studies like this suggest that women might benefit from both more information about their condition and greater opportunities to talk through their experiences. As yet, however, psychological interventions in this area are awaiting evaluation (Rafferty & Williams, 1996). Hysterectomy, removal of the uterus, is one of the most common major surgical operations in many countries, although the rates of hysterectomy vary considerably both between countries and in different parts of the same country (Teo, 1990). In Britain, 10% of women have had a hysterectomy by the age of 43 (Kuh & Stirling, 1995), and 20% by the age of 65 (Chepple, 1995). In many cases, the woman's ovaries are removed (oophorectomy) at the same time to prevent ovarian cancer. In premenopausal women, hormone replacement therapy (HRT) is usually prescribed if the ovaries are removed to counteract the effect of a premature menopause. A hysterectomy can be conducted abdominally (in which an incision is made and the uterus removed), or vaginally. Both procedures require general anesthesia and hospital admission. Postoperative recovery usually takes about eight days in hospital and then six weeks or so to convalesce (Evans & Richardson, 1988). The psychological impact of hysterectomy has been extensively studied. Early research was based on the hypothesis that the loss of the uterus would make a woman feel less feminine and have a negative psychological effect. A number of studies supported this idea, finding high rates of psychiatric disorder after the operation (Baker, 1968). More recent research has criticized these findings, primarily for failing to assess psychological state before hysterectomy. In carefully controlled studies, rates of psychological distress (e.g., depression or anxiety) after hysterectomy are similar to or lower than those prior to surgery (Gath, Cooper, & Day, 1982; Ryan, Dennerstein, & Pepperell, 1989). There is also some evidence to suggest that psychiatric morbidity both before and after hysterectomy varies across different cohorts of women. Gath et al. (1995) describe findings from three studies conducted between 1975 and 1990, all of which investigated the psychological state of women having a hysterectomy for menorrhagia before and six months after the

operation, using the Present State Examination. In all three studies, rates of psychiatric morbidity were lower after the operation than before. However, the number of women experiencing distress at both times fell dramatically over the three studies. The proportion of women considered to be psychiatric cases before and after the operation was 58:26 in study one, 28:7 in study two, and 9:4 in study three. One of the biggest changes over this time period has been the development of medical treatments and less radical surgical strategies for managing menorrhagia. Hence, it may be that menstrual problems of the women in the later studies were better controlled before the operation than those in the earlier studies, causing them less distress. As with the studies of CIN and colposcopy (above), this research shows that it is difficult to disentangle the psychological effects of a woman's problem or diagnosis from the effects of the procedure itself. However, there is little evidence here to suggest that hysterectomy is necessarily traumatic. As well as the effect of hysterectomy on psychological state, its effect on sexual activity and enjoyment has also been investigated. These studies suggest that effects differ between women, with some experiencing an improvement in their sex lives after surgery, and others (approximately one in five) a deterioration (Alexander et al., 1996; Helstrom, Lurdburg, Sorbon, & Backstrom, 1993). Women whose ovaries have been removed are more likely to be dissatisfied with sex after the operation, often describing difficulties with sexual arousal and vaginal lubrication, regardless of HRT use (Natharst-Boos, von Schoultz, & Carlstrom; 1993). The best predictors of satisfaction with sex after surgery are measures of satisfaction before the operation and feelings towards a sexual partner (Helstrom et al., 1993), suggesting that for some women relationship or sexual counseling may be helpful. A major problem with most studies of hysterectomy (and other procedures) is variation in the length of follow-up time after the operation. Positive effects soon after the operation may be due to relief of the woman's menstrual or pain symptoms, whereas any longer-term impact of the operation cannot be assessed. Women interviewed two years after hysterectomy reported at least some negative symptoms which they attributed to the operation, despite being fairly positive about the outcomes three months after surgery (Bernhard, 1992), suggesting that more long-term research is needed to understand the impact of hysterectomy in women's lives. Recently a variety of surgical techniques have been developed which remove or reduce the

Menstrual Disorders endometrium (lining of the uterus) without removing the uterus itself. These techniques have been evaluated largely in the treatment of menorrhagia, which accounts for approximately 30% of hysterectomies (Lalonde, 1994). Endometrial ablation (EA) or resection techniques require a general anesthetic, but are minor surgical procedures compared to hysterectomy, requiring less time in hospital (they can often be undertaken in day-care units) and less postoperative recovery time (Rafferty & Williams, 1996). These new techniques offer an alternative for women who do not want a hysterectomy or for whom hysterectomy is unsuitable. A proportion of women, however, experience a return of their symptoms at some point after the procedure, and may go on to have a hysterectomy. Hence, many women are faced with a difficult choice between endometrial resection/ablation and hysterectomy. There have been few studies so far which investigate the psychosocial consequences of EA. A recent randomized controlled trial of EA and hysterectomy found that both significantly reduced anxiety and depression, with no differences in mental health between the two groups 12 months after surgery (Alexander et al., 1996).

8.15.2.3 Psychological Interventions Psychological interventions are usually presented as part of the preparation for either invasive or surgical procedures, with the purpose of reducing anxiety or enhancing coping abilities, and thereby promoting recovery. Their presentation is managed in a variety of ways, during a brief interview with a psychologist, nurse, or anesthetist, as an audiotape, or most frequently in the form of a booklet (Wallace, 1984). Ridgeway and Matthews (1982) describe five main types of psychoeducational intervention that have been investigated in relation to preparation for all types of surgery. Two of these are broadly educational, that is, information-giving interventions, which provide patients with either factual or sensory descriptions of what will happen before, during and after the surgery, and behavioral instruction techniques, in which patients are taught skills which may be helpful after surgery, for example, deep breathing or specific exercises. Interventions with a larger psychological component include relaxation training, modeling (in which patients observe someone else overcoming anxiety), and cognitive coping training (in which patients are encouraged to replace worries with more positive thoughts). Studies that have tested

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these interventions are difficult to evaluate because of the variety of outcome measures used, although early reviews concluded that all of the strategies have some potential benefits, especially if psychological and educational strategies are combined (Mumford, Schlesinger, & Glass, 1982; Weinman & Johnston, 1988). A more recent meta-analysis of 38 randomized controlled trials of psychological preparation of adult patients for a variety of types of surgery found that all of these approaches produce better-than-chance benefits on a variety of outcome measures (e.g., length of stay in hospital, negative affect, pain, satisfaction), with procedural information and behavioral instructions showing the most wideranging effects across all outcome measures, followed by relaxation training (Johnston & Vogele, 1993). Studies of interventions such as these specifically in relation to gynecological procedures have found similar results (Rafferty & Williams, 1996; Wallace, 1984). For example, Wallace (1983) found that patients given a booklet containing procedural, sensory, temporal, and coping information as well as general reassurance had significantly better recovery after laparoscopy than patients who received routine care or a booklet containing global reassurance alone. When anxiety is the outcome measure, however, increased information alone may not be helpful. Marteau, Kidd, Cuddeford, and Walker (1996) sent women referred for colposcopy either a simple booklet, containing procedural information, behavioral instructions, and outcome information, or a more complex booklet containing more detailed procedural and outcome information, and assessed their anxiety at the time of receiving the booklet and when attending the hospital. Although both booklets increased women's knowledge about the procedure, the simple one was more effective in reducing anxiety. This finding suggests that information booklets are not universally effective in relieving anxiety, and it may be the case, as other studies have suggested, that detailed information is more suitable for some women than others, depending on their individual coping styles (Miller, 1988; Miller & Mangan, 1983; Shipley, Butt, Horwitz, & Farby, 1978).

8.15.3 MENSTRUAL DISORDERS 8.15.3.1 Definition and Diagnosis The average woman experiences around 400 episodes of menstrual bleeding in her lifetime (Profet, 1993) The neurophysiological control

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of the menstrual cycle is complex and not yet completely understood, and its expression varies considerably between women (Profet, 1993). Hence, women vary in terms of the number of days between menstrual periods, (although 28 days is an average figure, only one in eight cycles is 28 days long) (Vollman, 1977), the number of days on which menstruation occurs, and the amount of blood and fluid lost during menstruation (Treloar, Boynton, Benn, & Brown, 1967; Snowden & Christian, 1983). Not surprisingly, then, menstrual disorders are difficult to define, and a cause cannot always be identified (Scambler & Scambler, 1993). Menstrual disorders are among the 10 most common complaints seen in primary care settings (Scambler & Scambler, 1993). Their epidemiology is difficult to assess, however, because not all women who experience them seek help from physicians. In a community-based study in London, Scambler and Scambler (1985) found that over 50% of the women who described severe menstrual disorders had not sought help from a doctor in the last year. The reasons for this are complex, but in this study, women described feeling that their doctor (or doctors in general) had little empathy with or understanding of menstrual problems and had little to offer in the way of acceptable remedies. Information about the epidemiology can be obtained from community-based questionnaire surveys: however, these are difficult to interpret because women's perceptions do not always match medically defined disorders (Scambler & Scambler, 1993). It is likely, however, that large numbers of women experience menstrual problems at some time in their life, and that most of these women develop their own ways of coping with them.

8.15.3.2 Dysmenorrhea The most common menstrual problem is dysmenorrhea, or pain before and during menstruation. Painful periods are so common that many people dismiss them as normal. In studies of nonpatient populations as many as 70% of women report some pain associated with menstruation, and 5±10% regularly experience pain which is severe enough to be incapacitating for between an hour to three days each month (Golub, 1992). The pain is usually described as ªprimary dysmenorrheaº if it occurs in the absence of any pelvic pathology and ªsecondary dysmenorrheaº if there is pathology present (e.g., endometriosis, fibroids). Women describe a number of different types of pain which fall under the general heading of dysmenorrhea. Typically there may

be crampsÐintermittent sharp pains in the lower midabdomen which may radiate to the lower back or thighs or a steadier dull aching pain which may also extend into the legs. Some women experience nausea, vomiting, gastrointestinal disturbance, or headaches at the same time. Although the etiology of dysmenorrhea is not completely understood, it is associated with high levels of prostaglandins in the uterus (Smith, 1986), and treatment with antiprostaglandins (nonsteroidal anti-inflammatory drugs [NSAIDs]) is effective in about 80% of cases (Benassi, Bertani, & Avanzini, 1996). The frequency of primary dysmenorrhea decreases with age and childbearing (Golub, 1992). As well as age and not having experienced pregnancy, there are suggestions in the literature that a diet low in fish oils (Deutch, 1995; Harel, Biro, Kottenhahn, & Rosenthal, 1996), occupational hazards (Messing et al., 1993), and smoking (Parazzini et al., 1994) may increase the risk of dysmenorrhea. Period pain is less severe in the absence of ovulation, so for some women oral contraceptives are a useful treatment (Robinson, Plichta, Weisman, Nathanson, & Ensminger, 1992). Nonpharmacological interventions can also be effective, for example, transcutaneous electrical nerve stimulation (Kaplan et al., 1994) or spinal manipulation (Korjohn, Schmid, Triano, & Brennan, 1992). For the majority of women, though, the NSAIDs are the preferred method of coping (Jarrett, Heitpempes, & Shaves, 1995). Early studies suggested a link between dysmenorrhea and personality or attitudes towards femininity (Gannon, 1985). However, studies conducted after the discovery of uterine prostaglandins in the 1960s assume that it is pain which has an effect on psychological state, and not vice versa. Women who experience severe period pain are more likely to be depressed or anxious during menstruation than women who do not (Golub, 1992).

8.15.3.3 Menorrhagia Although dysmenorrhea may be the most commonly experienced menstrual problem, menorrhagia (heavy bleeding) is the one most likely to be seen in gynecology clinics. In clinical terms, menorrhagia is usually defined as loss of 60±80 ml of blood or more in one menstruation (Smith, 1986) a level which may put women at risk for anemia. The amount of blood lost during menstruation is difficult to assess, and accurate diagnosis requires assessment of the quantity of blood in all of the tampons and/or pads used, a procedure which

Chronic Pelvic Pain is rarely conducted outside research studies. Studies which have done this suggest that there is an imperfect relationship between perceived heaviness of menstruation, or the number of sanitary pads or tampons used, and excessive blood loss, partly because blood is only one component of menstrual fluid (Fraser, 1994). If women are asked to use a pictorial chart to rate the amount of blood loss, a much better relationship with actual blood loss is found (Janssen, Schoefen, & Heintz, 1995). There are many organic causes of menorrhagia, for example, uterine fibroids, thyroid dysfunction, or intrauterine contraceptive devices. For as many as half of the women complaining of heavy periods, however, no organic cause can be found (Anderson & McPherson, 1983). For both groups, the most likely medical investigation is a D&C, followed by hormonal and/or surgical (usually hysterectomy) treatments. There has been little research which investigates women's experience of menorrhagia or its psychological concomitants. Greenberg (1983) found that 62% of women seeking help from a gynecologist for heavy periods were also suffering from mild to moderate depression. These women were also experiencing more life stresses and less severe gynecological symptoms than the women who were not depressed. Harris (1989) also found a positive relationship between recent life events and help seeking for menorrhagia. She hypothesizes that, rather than the life events having a direct effect on menstrual physiology, it may be that provoking events and depression increase the psychological impact of blood loss. It may simply be that the woman's usual ability to cope is exhausted by other pressures, and so she seeks help from a physician. Alternatively, it may be the case that heavy menstruation is itself difficult to cope with, for example, interfering with work and relationships, causing depressions and a negative perception of recent events. Further research is needed to investigate the intricate relationships between menstrual disorders, psychological states and help seeking, but this may be an area in which cognitive coping interventions prove beneficial. For women who experience heavy periods, alternatives to surgery and medical treatments are limited. Most women would prefer a treatment that normalizes menstruation, with a reversible contraceptive effect, and are equally divided as to whether they would prefer tablets or a one-off operation (Warner, 1994). This ideal treatment for menstrual problems is some way in the future. In the meantime, as well as psychological interventions, development of new methods of sanitary protection, such as a menses cup (Cheng, Kung, Hannah, Wilansky,

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& Shime, 1995) which can effectively manage the menstrual flow, may enhance the quality of life of many women.

8.15.4 CHRONIC PELVIC PAIN 8.15.4.1 Gynecological Approaches to Chronic Pelvic Pain Chronic pelvic pain (CPP) refers to persistent pelvic pain lasting for six months or more (Rapkin & Kames, 1987). The exact prevalence of CPP is unknown: however, it is one of the most common complaints amongst women seeking help from a gynecologist, accounting for as many as 10% of outpatient consultations (Reiter, 1990) and, in a recent study, 38% of women attending a gynecology clinic reported experiencing CPP at some time in their lives (Walker, Katon, Neraas, Jemelka, & Massoth, 1992). CPP is a frustrating condition for gynecologists because it often occurs without any apparent organic pathology. The rate of chronic pelvic pain without organic pathology (CPPWOP) varies between studies and according to the techniques used to identify pathology. In studies that rely on pelvic examination, up to two-thirds of CPP sufferers fall into the CPPWOP category (Gross, Doerr, Caldirola, Guzinski, & Ripley, 1980±81; Pearce & Beard, 1984). Studies that use laparoscopy are more variable, finding no demonstrable pathology in between 9% and 80% of CPP sufferers (Reiter, Gambone, & Johnson, 1991). However, in most of these studies between a quarter and a third of women complaining of pain obtain negative laparoscopic findings (Stout, Sleege, Dodson, & Hughes, 1991; Vercellini, 1989). When pathology is found it is usually endometriosis or adhesions, the extent of which is not related to women's self-reports of their pain intensity (Stout et al., 1991). Hence, the relationship between CPP and organic pathology is complex and variable. In an attempt to understand why pain might occur, researchers have compared groups of women experiencing CPP without identifiable organic pathology with women whose CPP is associated with organic pathology on a variety of psychological and sociodemographic variables. Researchers have found higher rates of neuroticism (Rosenthal, Ling, Rosenthal, & Stovall, 1991), depression and anxiety (Magni, Saloni, Delco, & Ceola, 1984), sexual problems (Bak, Verhage, Drogendijk, Voitus van Hamme, & Duivenoorden, 1989) and somatization (Magni, Andreoli, de Leo, Martinotti, & Rossi, 1986) among women without apparent

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pathology. However, well-controlled studies (which use laparoscopy to diagnose organic pathology) and a recent meta-analysis have failed to support these findings (Hodgkiss & Watson, 1994; McGowan, Clark-Carter, & Pitts, 1994; Pearce, 1987). In general, women with CPP, regardless of whether or not an organic cause can be identified, are more depressed and anxious than women who are pain-free (Davies, Ganger, Drummond, Saunders, & Beard, 1992) and have higher rates of sexual problems. Women seeking help for CPP also report more experiences of sexual abuse or trauma than pain-free women (Reiter & Gambone, 1990; Schei, 1991) but not than women with chronic pain in other locations (Rapkin, Kames, Darke, Stampfle, & Naliboff, 1990). Although there is a relationship between sexual abuse and CPP, it is not the only factor, and many women who experience CPP have not been abused. Stout (1995) argues that CPP is a heterogeneous problem area rather than a single diagnosis, and that in order to understand it a multifactorial model is needed, incorporating biological, psychological, and social aspects, which act together to form a vicious cycle that maintains the pain. Surgical (usually laparoscopic surgery or hysterectomy) and hormonal treatments are predominantly offered for CPP, although neither is universally successful, and many women experience side effects, inadequate pain relief, or a relapse of symptoms (Ivins & Kent, 1993; Stout, 1995).

8.15.4.2 Women's Experience of Chronic Pelvic Pain The experience of CPP for many women is one of repeated investigations, a variety of medical or surgical interventions, and the development of self-care coping strategies (Grace, 1995b; Zadinsky & Boyle, 1996). The absence of a clear diagnosis for many women with CPP is a source of frustration. Many women feel that their complaints are being dismissed as imaginary or that there is nothing wrong with them. In a survey of 336 women using the health services in New Zealand for CPP, 43% reported that a GP had at some stage told them they had nothing wrong with them, and 24% claimed that a gynecologist had at some stage told them this (Grace, 1995a). Similarly, 25% claimed that a GP had told them the pain was due to a psychological problem, although very few were referred to a psychologist. As well as problems with the diagnosis, these women also described problems with communicating with doctors (over 40%

felt that there were things about their pain which they had not been able to talk to the doctor about, and 58% felt that the doctor was not taking their pain seriously) and problems with side effects of medication and/or surgery. The frequency of these problems was greatest (4 50%) among women in lower income groups, but still high (25±35%) in the higher and middle income groups. These findings suggest that communication in relation to CPP could be improved. Zadinsky and Boyle (1996) interviewed CPP sufferers and found that in the absence of a cure being offered by their doctor, women developed their own self-care strategies to enable them to deal with the disruptive effects of their pain on their lives.

8.15.4.3 Psychological Interventions for Chronic Pelvic Pain A growing body of research suggests that psychological interventions may be helpful in enhancing women's ability to cope with CPP (Bak et al., 1989; Kames, Rapkin, Naliboff, Afifi, & Ferrer-Brechner, 1990; Peters et al., 1991; Stout, 1995). However, since these are often offered in combination with other pain management strategies, specific effects are difficult to evaluate (Stout, 1995). A small number of studies have focused specifically on psychological interventions. For example, Pearce, Knight, and Beard (1982) compared relaxation training with behavioral counseling and nondirective psychotherapy, in a group of 32 patients with pain of at least six months' duration, and no apparent pathology after laparascopic investigations. The women were randomly allocated to one of the three treatment groups, and each was seen individually for four to six sessions at approximately fortnightly intervals. They rated their pain daily on a fivepoint scale continuously from a month before laparoscopy to three months after treatment ended. All three groups showed a significant increase in pain-free days at follow-up when compared to the initial assessment. These increases were continuing at one year followup in both the relaxation and nondirective counseling groups. Studies like this suggest that interventions that incorporate aspects of progressive muscle relaxation may be particularly helpful for CPP. Other forms of intervention may also be helpful, for example, sexual counseling or assertiveness training, but have yet to be evaluated. Given the experiences women describe, interventions aimed at health care professionals to enhance communication and limit psychologization might also have beneficial effects (Grace, 1995a).

Premenstrual Syndrome 8.15.5 PREMENSTRUAL SYNDROME 8.15.5.1 Definition and Diagnosis Premenstrual tension first appeared in the medical and psychoanalytic literature in the 1930s (Frank, 1931; Johnson, 1987), to describe feelings of ªindescribable tensionº (Frank, 1931) in the days before a period. It was renamed premenstrual syndrome (PMS) by Greene and Dalton (1953) to encompass any physical or emotional complaint occurring regularly before menstruation, and became notorious in the 1980s when it was used as a mitigation in two murder trials (Dingwall, 1992; Rittenhouse, 1991). There is no doubt that many women have physical and/or emotional experiences that indicate that their period is imminent. The nature and intensity of these experiences varies dramatically, however. Budieri, Li Wan Po, & Dornan (1974) identified 199 different potential signs and symptoms assessed in studies of PMS. Some women experience distressing moods or emotions and/or physical states around or before menstruation others feel at their most creative or energetic at this time (Logue & Moos, 1988; Stewart, 1989), and others still do not experience noticeable cyclical change (Ainslough, 1990; Laessle, Tuschl, Schweiger, & Dirke, 1990). As well as this variability between individuals, premenstrual experiences may also vary within individuals. Some women have different premenstrual experiences in consecutive cycles (Walker, 1994), or at different times of the year (Parry, Rosenthal, Tamarkin, & Wehr, 1987) and, as Gise, Levouits, Paddison, and Strain (1990) point out, events in women's lives (crises, holidays, physical illness, etc.) have effects on both emotional and physical wellbeing which may mask, exacerbate, or ease premenstrual changes. Given this range and variability of experience, it is not surprising that PMS has proved to be an elusive concept, difficult to define or diagnose. Numerous attempts have been made within both gynecology and psychiatry to define PMS so that those women who ªneedº clinical intervention can be distinguished from those who do not (Gold & Severino, 1994; Walker, 1997). Current clinical definitions usually require that the symptoms interfere to some degree with a woman's life, and that they are relieved during or immediately after menstruation. This is usually assessed by completion of daily rating scales over two or more cycles in addition to a detailed history. For example, the Diagnostic and statistical manual of mental disorders definition of ªpremenstrual dysphoric disorderº (PMDD) requires women to experi-

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ence at least five symptoms, one of which must be either depression, tension, emotional lability, or irritability, in most menstrual cycles for a year, of sufficient intensity to interfere with her life (American Psychiatric Association, 1994). This definition is controversial because it focuses on affective experienceÐexcluding women whose experiences are entirely physical from a diagnosis, while simultaneously implying that all clinically significant premenstrual experiences constitute a psychiatric disorder (Caplan, McCurdy-Myers, & Gans, 1992; Stotland & Harwood, 1994). For some researchers, PMDD is only one manifestation of PMS, and the terms are not interchangeable (Goudsmit, 1994; Stotland & Harwood, 1994). The possibility of several ªpremenstrual syndromesº or ªperimenstrual symptom patternsº has been suggested (Gise, 1988; Mitchell, Woods, & Lantz, 1991), although not always supported empirically (Jorgensen, Rossignol, & Bornlander, 1993). Others have argued that PMS is an ªidiosyncratic syndrome,º best approached from an individual perspective rather than through attempts at generalization (Gotts, Mose, & Donnerstein, 1995). Finally, there are those who argue that what matters is a woman's perception that she suffers from PMS, rather than whether or not she meets arbitrary scientific criteria (Corney & Stanton, 1991). As many as 80% of women who seek help from specialist PMS clinics do not confirm their self-diagnosis after completing daily ratings for two months (Metcalf, Livesey, & Braiden, 1989; Schnurr, Hurt, & Stout, 1994), whereas community studies show that many women who do meet scientific criteria for PMS do not identify themselves as having a problem or seek help for it (Dan & Monagle, 1994; Waner & Bancroft, 1990).

8.15.5.2 Epidemiology and Risk Factors Controversy about the definition of PMS inevitably means that epidemiological studies are difficult to interpret. The majority of epidemiological studies have assessed the incidence of particular experiences around menstruation (e.g., irritability, swelling), rather than a syndrome. Crosscultural studies suggest that the physical and emotional experiences reported by women premenstrually in other cultures are similar to those reported in Britain or North America, but that the number of women reporting particular experiences varies (Dank & Monagle, 1994; Longue & Moos, 1986). Epidemiological studies in Scandinavia (Andersch, Wenderstam, Hahn, & OÈhman, 1986) and North America (Woods, Most, & Dary,

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1982) suggest that approximately 5±10% of women between age 15 and 50 regularly experience one or more moderate or severe premenstrual symptoms. However, Ramcharan, Love, Fick, and Goldfein (1992), in a largescale cross-sectional study in North America, found no evidence to suggest that depression or anxiety are more frequent premenstrually than at any other time, and estimated a 1% rate of severe premenstrual dysphoria in the general population. A large number of women identify themselves as PMS sufferers, however, and seek help with their symptoms. Warner and Bancroft (1990) investigated the factors related to self-diagnosis among 5457 respondents to a British magazine survey. Of these women, 61% described themselves as having PMS. The factors that best predicted self-diagnosis were the numbers of symptoms rated as severe (especially emotional symptoms), the number of years of natural cycles (since the last interruption by pregnancy, oral contraceptive use, etc.) and psychosocial factors (perceived stress, cohabitation, self-rated happiness of relationship, and type of employment). This supports the finding of Logue and Moos (1986) that women who report PMS are more likely to be over 30, have long and/or heavy periods, a history of affective illness, and high life stress. Other factors such as personality, social class, cycle length, contraceptive use, and general health are not consistently related to symptom reporting, although there is some evidence that women with high levels of trait negative affectivity may be more likely to seek help for PMS (Von den Akkov, Sharifian, Packer, & Eves, 1995).

8.15.5.3 Explanations for Premenstrual Syndrome There are many theories about the causes of PMS, ranging from physiological to social constructionist (Bancroft, 1995; Walker, 1995). Researchers have investigated a range of possible physiological mechanismsÐfrom ovarian hormones to neurotransmitters (Bancroft, 1993; Dinan & O'Keare, 1991; Severino, 1993; Walker, 1992), none of which has been well supported. For example, although premenstrual experiences occur in the luteal phase of ovulatory cycles, when progesterone is present, and not the follicular phase, when it is absent, suggesting a simple causal relationship, studies that have manipulated progesterone levels, either by suppressing ovulation (Bancroft, Boyle, Warner, & Fraser, 1987; Walker & Bancroft, 1990) or supplementing endogeneous hormones (Sampson, 1979) have

failed to show a dose±response pattern. After reviewing the literature, Walker (1992, 1997) concludes that the timing of premenstrual emotional experiences is linked to the endocrinology of the menstrual cycle, but their intensity is not. Physical experiences, such as breast tenderness or swelling, may be more directly related to ovarian hormone levels, but even this relationship does not appear to be a simple one (Bancroft, 1993; Walker, 1997; Walker & Bancroft, 1990). Similarly, studies of psychological factors produce inconsistent findings. Psychological theories have implicated personality (Coppen & Kessel, 1963), cyclical changes in arousal (Daly, 1935), cognitive processing (Reading, 1992) and stress (Woods, Mitchell, & Lentz, 1995), and social psychological approaches have demonstrated that social cognitions play a role in symptom perception and reporting (Asso, 1992). In addition, it is clear that PMS is a socially constructed phenomenon; that is, that whatever the experiences of women really are, the inference that large numbers of women are ill or unpredictable once a month serves a particular political purpose within postindustrialized cultures (Maddocks, Hahn, Moller, & Rerd, 1986; Martin, 1989). Integrated and biopsychosocial models of PMS are currently the most popular in both medicine and psychology. For example, Bancroft (1993, 1995) hypothesizes that PMS results from the interaction between a timing factor, related to the hormonal fluctuations of the cycle, a menstruation factor, involving processes leading up to menstruation, and a vulnerability factor, characteristics of the woman which make her vulnerable (such as personality, or a predisposition to depression or stress). Others see PMS as the result of interactions between physiological, psychological, socioeconomic, and cultural processes (Severino, 1993; Ussher, 1992). The interactions between these systems are proposed to be so complex and intricate that PMS is effectively an idiosyncratic syndrome with different causes and different symptoms in different women (Gotts et al., 1995).

8.15.5.4 Biomedical Approaches to Treatment The various theories of PMS imply different approaches to treatment. The best known treatment is progesterone, which was popularized and marketed in the 1970s and 1980s. Although individual women may find progesterone helpful, well controlled trials have shown that it is no more effective than a placebo (Maddocks et al., 1986; Sampson, 1979). Recent reviews of PMS management in the medical

Menopause literature emphasize the importance of thorough investigation and assessment of symptoms and then recommend three broad treatment strategies (Leigh, 1994; Severino & Moline, 1995): changes in diet and lifestyle ((e.g., dietary supplements (Carter & Verhoef, 1994), exercise)); pharmacological management of specific symptoms ((e.g., benzodiazepines or selective serotonin reuptake inhibitors for dysphoric symptoms (Severino & Moline, 1995; Steiner et al., 1995)); or disruption control of the menstrual cycle, either medically (Leigh, 1994; Magos, Briheat, & Studd, 1986) or surgically (Casson, Hahn, van Vugt, & Reid, 1990). Rivera-Tovar, Rhodes, Pearlstein, and Frank (1994) have reviewed the efficacy of 31 different surgical, pharmacological, dietary, and psychosocial treatments for PMS, finding that many of these are effective for at least some premenstrual symptoms, but none can abolish PMS without simultaneously abolishing the menstrual cycle. In addition, all of the surgical and pharmacological treatments have associated risks and side effects (Mortola, 1994). Careful trials are essential in PMS research because of the high initial placebo effect, which is usually greater than 50%, and can be as high as 94% (Magos et al., 1986).

8.15.5.5 Psychological Interventions for Premenstrual Syndrome A biopsychosocial or cognitive model of PMS suggests that psychological interventions may be useful. A number of studies have now been conducted of a variety of psychological interventions, including support groups (Walton & Youngkin, 1987), relaxation (Goodale, Domar, & Benson, 1990), and cognitivebehavior therapies with individuals (Corney, Stanton, Newell, & Clare, 1990; Slade, 1989) or groups (Blake, 1995; Christensen & Oei, 1995; Kirkby, 1974; Morse, Dennerstein, Farrell, & Varnavides, 1991; Staut, 1995). For example, Morse et al. (1991) randomly allocated 44 women with prospectively confirmed PMS to receive either hormone therapy (dydrogesterone), relaxation therapy (using audio tapes), or coping skills training. The coping skills training consisted of 10, weekly, 90 minute, group sessions, covering general coping skills, anxiety reduction techniques, stress innoculation, assertiveness training, and relaxation training. The women were assessed after treatment and monthly for three months, using the daily Moos Menstrual Distress Questionnaire, by someone who was unaware of the therapy they had received. Initially all three groups showed a good response to treatment; however, by three

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months, only the coping skills group were maintaining their treatment gains. It is not clear whether the beneficial effects of psychological interventions relate specifically to premenstrual experiences or whether the woman is generally happier or more able to cope. Similarly, it is not clear whether some psychological interventions are more effective than others, and particularly whether the cognitive elements of therapy are necessary. Christensen and Oei (1995) for example, found that twohour group sessions weekly for 13 consecutive weeks, of either cognitive-behavior therapy (cognitive restructuring and assertion training) or information-focused therapy (relaxation training, dietary and lifestyle advice, assertion training, and child management training), were equally effective in relieving premenstrual dysphoria (assessed by the BDI) at both six and 12 month follow-up. What is clear is that enabling women to develop their own coping strategies and skills can be as effective as the majority of current drug therapies for most women (Stout, 1995). 8.15.6 MENOPAUSE 8.15.6.1 Definition The menopause, a woman's last menstrual period, occurs on average between the ages of 50 and 51 (typical age range 45±55) and has been defined as ªpermanent cessation of menstruation resulting from loss of ovarian activityº (World Health Organization [WHO], 1981). A period of gradual decreased output of estrogen by the ovaries and reduction in ovulation precedes the menopause. The most commonly used classification in medical practice and research is based on menstrual criteria, defining women as postmenopausal if no menstruation has occurred during the previous 12 months, and as perimenopausal if menstruation has become irregular but has occurred during the past 12 months (WHO, 1981). Hormonal measures (lowered estradiol 5100 pm l71 and raised follicle stimulating hormone 430 iu l71) can also be used in order to confirm menopausal status. On average it takes four years from the first change in menstruation until 12 months after the last menstrual period (Kaufert & Gilbert, 1986). However, there is marked variation between women with respect to its timing and duration. Menopause can also result from surgery (oophorectomy), medical treatment, or disease and it is considered to be premature if it happens before the age of 40. Hot flushes and night sweats, also called vasomotor symptoms, are the only definite symptoms of the menopause (Utian, 1972).

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However, a wide variety of symptoms have been attributed to hormone changes during the menopause, such as irritability, headaches, depression, anxiety, weight gain, aches and pains, poor memory and concentration, and loss of libidoÐsymptoms often included under the broad term ªmenopausal syndrome.º With the development of hormonal treatments in the twentieth century the dominant medical model positions the menopause as an estrogen-deficiency disease, a cluster of physical and emotional symptoms that can be treated by HRT. Early studies were carried out on clinic samples, thus the link between symptomatology and the menopause was reinforced. The boundaries of the ªdiseaseº have shifted markedly over the past 20 years, HRT being first used for the treatment of hot flushes but more recently to prevent health problems in later life, such as osteoporosis and cardiovascular disease (Maxim, Ettinger, & Spitalny, 1995; Stephenson, Crook, Collins, Godsland & Whitehead, 1994). From a woman's perspective the menopause has acquired complex social and cultural meanings, being inextricably linked to age and often coinciding with life changes. Thus, ªthe change of lifeº in popular discourse reflects the view that the menopause might be paralleled by role changes and emotional and social adaptations which may occur during midlife. Concepts such as ªempty nest,º physical decline, loss of femininity, loss of sexuality, involutional melancholia, and vaginal atrophy have contributed to varied, but generally negative, stereotypes of menopausal women in Western cultures. In contrast, anthropological studies provide examples of how menopause can be a positive event, particularly when it signifies a change in social status (Flint, 1975). In general, women living in non-Western societies appear to report fewer symptoms at the menopause than those living in the West (Payer, 1991). However, it is likely that material differences, such as dietary and reproductive practices and levels of exercise, contribute to cross-cultural differences, as well as cultural values and the social position of midaged and older women. 8.15.6.2 Epidemiological Studies In the 1980s several prospective studies (Holte, 1992; Hunter, 1992; Kaufert, Gilbert, & Tate, 1992; Matthews, Wing, & Kuller, 1990; McKinlay, Brambilla, & Posner, 1992; Oldenhave, 1991) were carried out in North America and Europe, using general population samples in order to clarify what changes occurred and whether any changes were associated with stage of menopause, aging, or psychosocial factors.

The studies included a cross-sectional phase, as well as following women for between three and five years across the menopause transition. Overall, the results of these studies suggest that the menopause is not associated with emotional symptoms. In four of the five studies no change in measures of depressed mood were evident. Similarly, there is no substantial evidence to support the view that psychiatric disorder is more prevalent during the menopause (Gath & Iles, 1990; Pearce, Hawton, & Blake, 1995). Hot flushes and night sweats increased as expected, but the prevalence rates averaged around 50±60% of menopausal women, lower than the commonly quoted 70%. In one study there was a slight increase in psychological symptoms in perimenopausal women who had hot flushes and night sweats (Oldenhave, 1991), and an association between length of perimenopause and mood, which was explained by prolonged exposure to hot flushes and night sweats (Avis, Brambilla, McKinley, & Vass, 1994). Women who experienced chronic ill health, such as arthritis or thyroid problems, were also more likely to report depressed mood (Kaufert et al., 1992). When asked, the majority of women reported relief from the cessation of menstruation and the possibility of pregnancy. However, a proportion expressed negative beliefs and expectations about the menopause beforehand. Such beliefs (that the menopause is associated with a host of physical and emotional problems) were found to predict depressed mood and other symptoms when these women reached the menopause (Hunter, 1992). Depressed mood was predicted mainly by past depression, together with low socioeconomic status, not being employed outside the home, as well as negative beliefs (Hunter, 1988). In general, psychological problems were associated with psychosocial factors to a greater extent than with stage of menopause. For example, life stress, particularly losses such as bereavements, have been found to be associated with emotional and physical symptoms, especially if they occurred in the context of additional stresses (Greene & Cooke, 1980). However, there is little evidence to suggest that the menopause is more stressful than other life stages, for example, early motherhood (Boulet, Lehert, & Riphagen, 1988). Similarly, there is neither strong support for the assumption that a child leaving home is necessarily stressful, nor for the belief that single women are more at risk during the menopause. Overall, the epidemiological studies suggest that for the majority of women the menopause does not lead to changes in psychological or physical symptoms, apart from possible secondary effects resulting from problematic hot flushes and night sweats. Nor did it adversely

Menopause affect ratings of general health or health-related behaviors such as medication intake or visits to the doctor (Hunter, 1992; McKinlay & McKinlay, 1986). Taken together with cross-cultural findings, the notion of an essentially biological cause of distress is certainly challenged by epidemiological research. When general population samples have been compared with those seeking help during the menopause a different picture emerges. Menopause clinic attenders report much higher rates of distress and more physical and emotional problems than nonattenders (Ballinger, 1985). Decisions to seek medical help may be more likely when emotional distress is experienced with hot flushes in the context of certain beliefsÐin particular that the symptoms are due to a current disease-like process (Hunter, 1988). 8.15.6.3 Hot Flushes/Flashes and Night Sweats Subjectively described in terms of sensations of heat in the face, neck, and chest, and frequently accompanied by perspiration and/ or shivering, hot flushes or hot flashes are associated with increases in skin conductance and finger temperature (Tateryn et al., 1981), peripheral blood flow, and heart rate (Ginsberg, Hardman, & O'Reilly, 1989). The etiology of hot flushes is unknown but they are associated with rates of change of plasma estrogen. Surprisingly few psychological studies have been carried out given the prevalence of hot flushes. There are considerable cultural differences in hot flush reporting, but even within Western cultures the experience of hot flushes is highly variable when site, frequency, duration, and intensity have been studied. A range of emotional reactions have been reported, including embarrassment, panic, feelings of suffocation, and precipitants have been identified such as hot drinks, alcohol, external heat, and stressful situations, but many flushing episodes are described as spontaneous (Kronenberg, 1990; Voda, 1981). Gannon, Hansel, and Goodwin (1987) monitored 10 women and found a positive correlation between hot flushes and stress (daily hassles) for half the sample. Approximately 10±15% of women with hot flushes describe them as problematic, largely because of physical discomfort, disruption of sleep, and social embarrassment (Hunter & Liao, 1995), and hot flushes and night sweats are the main reason given for seeking medical help during the menopause. The frequency of hot flushes appears to be difficult to predict and was not associated with sociodemographic variables in a recent study. However, women who viewed their flushes as problematic tended

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to report higher levels of anxiety and depressed mood, and lower self-esteem (Hunter & Liao, 1995). HRT is an effective and commonly recommended treatment for hot flushes. However, in view of the possible relationship between hot flush reporting and stress, psychological interventions have been developed which include behavioral treatments (Hunter & Liao, 1995), particularly deep breathing and relaxation (Freedman & Woodward, 1992). In a recent study (Hunter & Liao, 1996) a cognitive±behavioral intervention, including relaxation, was compared to HRT and a notreatment control condition, using a patient preference design. Of those wanting treatment, 59% of the sample (N = 61) chose the psychological treatment and 41% HRT. The psychological treatment includes four hourly sessions (discussion of hot flushes, monitoring precipitants, relaxation training, modification of precipitants, cognitive strategies to cope with hot flushes, and stress reduction) and was found to be as effective as HRT in reducing hot flush frequency. Those receiving the psychological treatment also reported lower anxiety ratings after treatment. Further research is needed to examine the potent factors within these treatments. 8.15.6.4 Hormone Replacement Therapy HRT, which may be administered orally or via subcutaneous implants or skin patches, is being increasingly promoted for the prevention of osteoporosis and cardiovascular disease, as well as relief of hot flushes and, more recently, for improvements in quality of life. HRT has also been advocated as a treatment for depression. However, correlational studies do not support an association between estrogen levels and mood (Alder, Bancroft, & Livingstone, 1992), and treatment studies have failed to provide conclusive evidence that HRT alleviates depressed mood over and above placebo effects and the secondary relief from hot flushes (Hunter, 1990; Pearce et al., 1995). In order to derive long-term health benefits from HRT, at least five years' use is generally recommended (Coope, 1989). In medical literature compliance with HRT is regarded as low in terms of both uptake and adherence rates, particularly in the UK where approximately 10% of 45±55-year-old women currently use HRT. Reasons for low compliance include not wanting to take medication, having menstrual periods, fears of risks, and side effects. It has been assumed that, with appropriate information and reassurance, uptake and adherence would increase (Sinclair, Bond, & Taylor, 1993). However, an educational model

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that neglects health beliefs is likely to be overly simplistic. In general, surveys of women's and doctors attitudes to the menopause have found that women are more likely than doctors to see the menopause as a normal developmental phase of life, whereas doctors are more likely to see it as a disease-like process (Leiblum & Swartzman, 1986). One study of women's attitudes found that promotion of HRT was considered of low priority compared to other health concerns (Griffiths, 1995). In a British study women were interviewed about the menopause and HRT and their responses analyzed qualitatively. They tended to prefer not to take medication for what they regarded as a natural process, unless they had troublesome current symptoms, that is, hot flushes, and thus appeared, in general, to be using different criteria from health professionals (who tend to view HRT as a long-term health measure for the menopauseÐa clinical problem) when making decisions about HRT use (Hunter, O'Dea, & Britten, 1997). This may partly explain why many women are dissatisfied with medical consultations about the menopause and HRT (Hibbard & Sampson, 1993). Many women express uncertainty about HRT, which points to a need for balanced information and the opportunity to discuss the relative costs and benefits and possible health risks, as well as the woman's values and preferences. Much of the existing knowledge base draws upon cohort studies of postmenopausal women electing to use HRT, resulting in selected samples and possible underestimates of the risks of breast cancer and overestimates of the prevention of fractures (Hemminki & Sihvo, 1993). Long term prospective randomized trials are currently in progress. 8.15.6.5 Psychological Interventions Few psychological interventions have been developed for menopausal women. Apart from research on the treatment of hot flushes, described above, preliminary studies have been carried out focusing on prevention, ways of enhancing doctor±patient communication, and dealing with emotional problems reported by women who seek help. For example, the effects of providing 45-year-old women with balanced information, the opportunity to discuss beliefs and expectations, and health education is currently being evaluated (Liao & Hunter, 1994). Research is also being developed to evaluate ways to empower women in order to facilitate decision making during consultations, and to overcome barriers such as lack of information and stigma of the menopause, differing agendas, gender differences, and power relationships between women and health

professionals (Hampson & Hibbard, 1996; Rothbert et al., 1994). Psychological therapies are likely to be helpful for women who attend clinics with emotional and physical problems. Individual (Green & Hart, 1987) or group (Hunter & Liao, 1995b) therapy can help women to clarify the causes of distress in their lives and seek appropriate solutions. 8.15.7 CLINICAL PSYCHOLOGIST'S ROLE As outlined in the preceding sections, changes are needed at the level of training of health professionals, in describing and communicating about gynecological and reproductive problems, and in assessing and treating individuals, couples, and groups. In practice the clinical health psychologist's role might include: (i) Direct work with women, including assessments, clarification of problems, individual, couple, and group therapy. (ii) Services to health professionals working in gynecology, such as training in communication skills, teaching about the application of a biopsychosocial model and psychological interventions, offering staff support and facilitating team development, consultation with other agencies on the management of gynecological problems, and carrying out clinically relevant research. (iii) Services to purchasers and planners, such as advising about the psychological needs in gynecological settings, developing service evaluation and audit projects, evaluation of psychological interventions, and development of health promotion projects. As an often scarce resource in these settings, clinical psychologists tend to work in a facilitating role, working with other health professionals (British Psychological Society, 1995). In order to provide such services clinical health psychologists should have access to supervision and research facilities and be supported by a clinical health psychology service. 8.15.8 CONCLUSION Psychological research in gynecology clearly draws attention to the psychosocial and cultural influences upon women's experience of gynecological problems. Similar issues are faced by women seeking help across the lifespan, for example, how to make sense of complex biological and social changes that impact upon her experience of herself and her body. Cultural factors serve as a filter, influencing the meaning of bodily changes, as well as defining social

References traditions and practices. A biopsychosocial model that does not privilege biology over and above cultural and psychosocial factors is a useful starting point for clinical assessment, treatment, teaching, and research. Such a model might lessen the likelihood of dualistic thinking and polarized views about women's problems, and open up the possibility of developing and offering women a broader range of treatments. Clinical health psychologists working with gynecologists in clinics is one way to provide more integrated services and a more holistic approach (British Psychological Society, 1995). Psychological research has also provided information about normal developmental processes and individual differences in the experience of reproductive events. Appreciation of these factors may help to counter stereotypes about women which have tended to be based upon clinic samples. Examples are provided in the above sections that challenge myths about women seeking helpÐas neurotic, hysterical, unfeminine, or ruled by their hormones. Stereotyping and labeling, as well as differing understandings or illness representations between doctor and patient, can lead to dissatisfaction with communication and inappropriate treatment decisions in clinical practice. Communication and decision making are increasingly important concerns for clinical health psychologists working in gynecological settings (Hunter, 1994), since women are required to make extremely complex choices about their health. Further research is needed to develop optimum procedures that facilitate informed decision making. An additional area for further study is the nature of help-seeking behavior, especially given the high levels of emotional problems reported by women attending gynecological clinics. For example, why do some women who are distressed seek help from a PMS clinic, when others with similar symptoms might seek help from a counselor or psychologist? The value of psychological interventions has been demonstrated in many areas of gynecology, such as preparation for surgery, alleviation of pelvic pain, and is promising in the areas of PMS, menopause, and menstrual disorders. There appears to be a gap between research findings and clinical applications of these findings, particularly in the case of preparation for surgical interventions. Future research could usefully examine optimum methods of service delivery in hospital settings. 8.15.9 REFERENCES Ainscough, C. E. (1990). Premenstrual emotional changes: a prospective study of symptomatology in normal women. Journal of Psychosomatic Research, 34, 35±45.

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.16 Reproductive and Obstetric Issues BETH ALDER University of Dundee, UK 8.16.1 INTRODUCTION 8.16.1.1 8.16.1.2 8.16.1.3 8.16.1.4

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8.16.2 CONTRACEPTION

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8.16.2.1 Current Contraceptive Use 8.16.2.2 Oral Contraception 8.16.2.3 Emergency Contraception 8.16.2.4 Sterilization 8.16.2.4.1 Vasectomy 8.16.2.4.2 Laparoscopic sterilization 8.16.2.5 Other Contraceptive Methods 8.16.2.6 Models of Contraceptive Choice 8.16.3 INFERTILITY

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8.16.3.1 The Experience of Subfertility 8.16.3.2 Unexplained Infertility 8.16.3.3 Stress and Infertility 8.16.3.4 Consequences of Diagnosis and Treatment 8.16.3.4.1 Distress 8.16.3.4.2 Grief 8.16.3.5 Sexuality and Infertility 8.16.3.6 Reproductive Technology 8.16.3.6.1 Donor insemination 8.16.3.6.2 In vitro fertilization 8.16.3.6.3 Surrogacy 8.16.3.7 Adoption 8.16.4 MISCARRIAGE AND ABORTION

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8.16.4.1 Miscarriage 8.16.4.1.1 Spontaneous abortion 8.16.4.1.2 Grief and loss 8.16.4.1.3 Postmiscarriage care 8.16.4.2 Abortion 8.16.4.2.1 Psychological consequences

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8.16.5 PREGNANCY 8.16.5.1 8.16.5.2 8.16.5.3 8.16.5.4 8.16.5.5 8.16.5.6

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The Impact of Pregnancy Transition to Parenthood Antenatal Classes Psychological and Social Changes Changes in Sexuality Teenage Pregnancy

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8.16.6 THE POSTNATAL PERIOD

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8.16.6.1 Changes after the Birth 8.16.6.2 Postnatal Change in Mood 8.16.6.3 Postnatal Depression and Development of the Infant 8.16.6.4 Breast-feeding 8.16.6.4.1 Breast-feeding as a health behavior 8.16.6.4.2 Breast-feeding and the mother 8.16.6.4.3 Breast-feeding and sexuality 8.16.7 THE OLDER MAN AND WOMAN

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8.16.8 PROFESSIONAL ISSUES

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8.16.9 REFERENCES

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8.16.1 INTRODUCTION

8.16.1.2 Gender Differences

8.16.1.1 Reproductive Issues

Inequalities of health have probably always occurred even though equal health status between nations, rich and poor, urban and rural, and between ethnic populations has been a goal for many. The differences in health between men and women must be due in part to the biological differences in reproductive and obstetric behavior and to the cultural and social differences between men and women. An approach which recognizes that differences are not the same as undesirable inequalities is likely to be more fruitful in considering health in relation to reproductive and obstetric events. Much of health psychology has concentrated on men's diseases and male health promotion, for example, heart disease. The first major study of psychological factors in heart disease was based on a prospective study of over 3000 middle-aged male nonmanual workers (Rosenman et al., 1975), and a prospective study of psychological factors and heart disease in Chicago looked at 2000 men only (Persky, 1987). The pattern of morbidity in heart disease and cancer in women in some countries is approaching that of men. Smoking is now increasing in young women in the UK, whereas the number of men smoking has decreased (Jarvis, 1994). Women live longer than men but have higher rates of mental and physical illness. They consult physicians more frequently, have more surgical procedures, have higher prescription rates, and take more over-the-counter medicines. These behavior patterns may be reflections of illness behavior rather than physical morbidity and there is some evidence that women consult for more minor illnesses than men (McCormick, Rosenbaum, & Fleming, 1990). Women are more likely than men to receive psychiatric care, whether measured by inpatient admissions, general practice consultations, prescription of psychotropic drugs, or rates of ECT (Ussher, 1991). In community studies, women are found to more likely to be depressed than men. The epidemiological evidence is based on diagnostic psychiatric interviews or screening scales and it

Reproductive issues in psychology cross many disciplinary boundaries. Medicine, sociology, anthropology, and social policy all have relevance to reproduction and are important in the lives of both men and women. Reproductive events such as menarche, the first sexual relationship, pregnancy, or the birth of the first child all have considerable psychological impact on individuals and their families. The epidemiology of reproductive issues has been widely researched. Most of the general population comes into contact with the medical profession in the context of reproductive issues, and their health and behavior can be monitored. There have been studies on the incidence, prevalence, and etiological factors of infertility, sexual problems, and postnatal mental illness. Reproductive issues are relevant to all of us throughout our lives, and this chapter takes a lifespan approach. Life is sometimes taken to be cradle to the grave, but it has also been described as being ªsperm to worm.º For example, the mother's future maternal behavior may be influenced by the circumstance of the conception or events during pregnancy (hence, parent craft classes). The consequences of reproductive and obstetric events persist throughout life. Family members mainly care for elderly people and the implication of changes in family patterns will influence health care into the twenty-first century. Some reproductive events have psychological significance that go beyond the scope of this chapter. Sexual abuse in childhood may influence sexual relationships, sexual behavior, and parenting. A psychodynamic approach to sexual problems may contribute to understanding and therapy, although many couples may benefit from behavioral therapy approaches. A feminist perspective considers that femininity itself is closely tied to the regulation of sexuality of women; female sexual problems and sexual dysfunction may be defined by male views of female sexuality.

Contraception has been argued that these are based on malebased criteria (Ussher, 1991). Interestingly, the gender differences in psychoses are less clear. Men are more likely to be admitted for alcoholrelated illnesses than women. One explanation for this increased morbidity is the influence of gynecological events. Although the myth of the ªwandering uterusº no longer pertains, there may be a belief that by virtue of their reproductive system, women are psychologically different: the biological determinants usually thought to be hormones and social influences. Two mechanisms can be contrasted. Hormones are held to be responsible for cyclical fluctuations in mood and behavior. This has been described as premenstrual syndrome (PMS), although there is little agreement on definition and the research evidence is full of methodological pitfalls (Choi, 1994). This is considered in more detail in Chapter 8.15, this volume. Alternatively, women are seen as suffering from more material and social deprivation than men. Women are poorer than men, own less wealth, and have occupations of lower status. Deprivation is closely linked to morbidity, and the association is strong for mental illnesses. However, causal relationships have not been established. Depression may both cause and be caused by poverty. The links may be complex. Single parents may be more at risk for depression but also suffer material deprivation and may lack a confiding supportive relationship.

8.16.1.3 The Social Context As more people live longer, more women will require medical care, but more young elderly women will themselves be carers. ªCare in the communityº is being encouraged but women take up the burden of caring for the elderly. Social support comes from family and the community (Scambler, 1997). Mortality may be related to the degree of social support (House, Robbins, & Metzner, 1982). For example, mortality is related to the level of social support for men but not for women. The relationships are nonlinear, that is, low levels are disadvantageous but high levels give no advantage over middle levels of support. Social support could be related to economic factors related to health such as diet or housing. Some health behaviors may be enhanced if there is social support. Adherence to drug therapy may be greater if there is a family member to remind the patient. The buffer theory suggests that social support may protect against physiological stress (Pearlin, Mullen, Semple, & Skaff, 1990). Differences in social support between the sexes may occur because of definitions of social

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networks. The extent of social networks may not reflect their quality. Carroll, Niven, and Sheffield (1993) suggest that, as social networks of women expand (in part because of increased work outside the home), the demands on them as expected providers of care and support may increase. This may impose extra strain incumbent on increased helping and giving. Women may more often be the providers of social support and there are increasing numbers of women living alone as a result of widowhood, single state, or divorce (Carroll, Niven, & Sheffield, 1993). 8.16.1.4 Reproductive Issues and Health Psychological and physical health and their interaction are influenced by sexuality and fertility. An apparently unrelated disease syndrome or health problem may have been affected by previous reproductive events. Its management may depend on the stage of the reproductive career. Decisions about hysterectomy may depend on whether the couple have as many children as they want. Reaction to the diagnosis of HIV infection may be particularly problematic if it is made during pregnancy. The use of psychotropic drugs in the management of postnatal mental illness will be influenced by breast-feeding. Reproductive changes over the life span particularly affect women, and therefore this chapter focuses on women's health. Men's health may also be greatly influenced by reproductive issues and will be considered in context, that is, in contraceptive choice and infertility problems. 8.16.2 CONTRACEPTION 8.16.2.1 Current Contraceptive Use The birth rate in the Western world has fallen dramatically since the 1940s (Scambler, 1997). It is not clear to what extent this is because of the increase in education of women, relative affluence, parental choice, or provision of contraceptive advice and supplies. In the European Union the fertility rate measured in births per 1000 women fell from 2.4 in 1970 to 1.5 in 1992. In 1993, 39% of women between 16 and 35 used the pill. Contraceptive use is shown in Table 1 (Social Trends, 1995). The evidence for a contraceptive career (Lindemann, 1977) suggests that young people use condoms or no method at all in their first sexual encounters (Abraham & Sheeran, 1994). With increasing sexual and contraceptive experience they move to oral contraceptives. After the birth of their first child, they change to intrauterine device (IUD) and, after their family

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Table 1 Contraceptive use in 1993 in the United Kingdom (Social Trends, 1995).

Method Oral contraceptive pill Condom Hysterectomy Vasectomy/sterilization IUD Withdrawal Other

Percentage of users aged 16±49 years 25 17 12 12 5 3 3

is considered to be complete, they choose either male or female sterilization. Oddens (1996), in a population survey of contraceptive use in the UK and Germany, found that patterns of contraception use were closely related to variables such as age, parity, marital status, and intention to have children. Age and the desire to have children are the major factors associated with contraceptive choice. The decline in the use of oral contraceptives with age has been related to perceptions of health risk. In 1989 a ªpill scareº in Germany associated certain pills with an increased risk of thromboembolism and this was followed by a fall in the number of oral contraceptive users. This happened again in the UK in October 1995 (Martin, Hilton, & Kerry, 1997). A comparison of the major reasons given for choosing different contraceptives is given in Table 2.

8.16.2.2 Oral Contraception Guillebaud (1991) estimated that 70 million women worldwide take the oral contraceptive pill every day. Over 90% of women aged 35 in 1987/88 in the West of Scotland had used the oral contraceptive pill at one time (Hunt, 1990). Oral contraceptives tend to be the first choice of contraception, although there has been a fall in their popularity in the UK, accompanying a rise in the use of condoms (Social Trends, 1995). Oral contraceptives have been thought of as the gold standard of contraception. They are easy to use, very effective, safe, inexpensive, and readily available. They do not interfere with the act of sexual intercourse and give women control over their fertility. However, they are not without some disadvantages. Side effects reported in the early high oestrogen oral contraceptive pills included reduced sexual interest and depression (Guillebaud, 1991). Condon, Need, Fitzsimmons, and Lucy (1995) carried out a retrospective study of 145 women and found that nearly half reported side effects and most changes in well-being were

perceived as negative. It is difficult to carry out good prospective studies of pill users because of ethical difficulties and high attrition rates. Women who have side effects may stop using the pill, and those who continue and become long-term users are less likely to report side effects. Women who take the pill probably do so because it is very important to them to have a very safe form of contraception, and they may be more likely to tolerate side effects for the sake of a high level of protection (Guillebaud, 1991). Women who use oral contraceptives may differ in their sexual behavior from those using other methods. They may wish to avoid interference with the act of sexual intercourse. The evidence for a direct psychological effect of the pill is weak. The most common psychological side effects are depression and loss of libido. Bancroft and Sartorius (1990) in a literature review conclude that oral contraceptives decrease premenstrual symptoms and suggest that a small group of women, number unknown, are adversely affected. In a study of readers of a monthly women's magazine, Warner and Bancroft (1990) asked about the level of well-being and sexual interest in ªthe week before the period,º ªduring the period,º ªthe week after the period,º and ªother timesº or ªnever.º Women taking the pill were less likely to report highs and lows in well-being overall than nonpill taking women. They were more likely to report high sexual interest ªduring the periodº or ªbefore,º but this did not relate to changes in well-being. These findings suggest that there may be a direct effect of the pill on sexuality, independent of its effects on mood. Bancroft (1988) suggests that oral contraceptives may have an adverse effect on mood initially but some women stabilize, whereas other women will change their brand of pill or abandon oral contraceptives altogether.

8.16.2.3 Emergency Contraception Hormonal postcoital contraception can prevent pregnancy in nearly 100% of cases, and yet few women presenting for termination of pregnancy have attempted to use this form of contraception (Smith, Gurney, Aboulela, & Templeton, 1996). George et al. (1994) found in a study of women attending a general practice surgery that the greater level of awareness of emergency contraception was associated with previous use of barrier contraception, young age group, parity, and previous emergency contraception enquiry. Smith et al. (1996) carried out a population-based survey of 1214 women in Grampian, Scotland (65% response rate). They found that although most women (94%) were aware of emergency contraception, only 39%

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Contraception

Table 2 Motives for choosing contraceptive method currently used (percentage). More than one answer could be given. Germany, n = 1064; UK, n = 967. Oral contraception Reason Reliability Nondisturbance of sex life Easy to use Menstrual problems Medical advice Infrequent intercourse Health concerns Partner involvement Problems with former method

Condom/ diaphragm

Sterilization (vasectomy and laparascopic)

IUD

Germany

UK

Germany

UK

Germany

UK

Germany

UK

94 62 51 33 21 2 1 2 3

88 65 69 29 12 1 2 0 7

34 18 27 0 4 26 36 23 30

45 8 40 1 7 15 32 11 37

66 83 41 3 43 21 21 0 39

69 48 47 1 39 2 11 0 40

52 20 2 4 32 0 34 15 33

64 38 7 1 14 2 18 12 16

Source: Oddens et al. (1994a, 1994b).

knew the correct timing for its use. Two pills need to be taken 12 hours apart within 72 hours of unprotected sexual intercourse. The morningafter pill may have had a negative image in the media and there is debate about the advisability of deregulation (Glasier, 1993). Only 13% referred to it as being a form of abortion or gave a moral aspect as a reason for being opposed to increasing advertising. The so-called ªonce a month pillº (the antiprogesterone, RU486) is taken at about the time of the expected menses and induces menstrual-like bleeding and/or abortion. In a survey of attitudes in Scotland, Romania, and Slovenia it was found that 72%, 81%, and 94% of women, respectively, felt positive to the idea of a pill which inhibited ovulation. Over 50% thought that a pill which inhibited or interfered with implantation was an acceptable idea. A pill which was taken only if menstruation was delayed by one or two days was acceptable by only 24% in Scotland, but 80% in Romania, and 80% in Slovenia. This suggests that attitudes to abortion, availability of contraception, and religious beliefs are likely to be important (Rimmer et al., 1992).

8.16.2.4 Sterilization Male or female sterilization is the most widely used method of contraception worldwide. Vasectomies in men and laparoscopic sterilization in women are safe and effective. However, sterilization operations are effectively irreversible and so the decision to be sterilized means the couple need to be very sure that they will not want more children.

8.16.2.4.1 Vasectomy Vasectomy is a simple minor surgical procedure that takes about 15 minutes to perform (Hargreave, 1994). A small opening is made in the scrotum and the vas deferens that carries the sperm from the testes to the urethra is severed. The procedure is carried out under sterile conditions and under local anesthetic. It usually takes place in outpatient clinics. The patient is usually advised to rest for one or two hours in the clinic, and avoid hard physical work or strenuous exercise for the next few days. Infertility may take up to 10 weeks to achieve depending on the frequency of ejaculation. It is one of the most effective methods of contraception and there are very few side effects. Studies on the long-term effect of vasectomy have found no evidence of adverse psychological effects. Retrospective studies, for example, Cliquet, Thiery, Staelens, and Lambert (1981) report that less than 5% have problems such as decreased libido and depression. However, most studies did not include control groups, and studies carried out in the 1970s used nonstandardized assessments, heterogeneous groups, and were mostly retrospective. Regret may lead to requests for reversal, and these usually follow remarriage after divorce, death of one or more children, change in family circumstances, or psychological problems related to infertility. The operation can be reversed but may be successful in only 50% of cases. Some men are reluctant to undergo an operation on their genitals. Men are potentially capable of fathering children into their sixties, and some men do not want to end their fertility prematurely. The decision to be sterilized needs to be considered

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carefully and counseling is often given in order to help the couple decide which partner should undergo the operation (Hunter, 1994). 8.16.2.4.2 Laparoscopic sterilization Laparoscopic sterilization in women involves tying, cutting, or more often clipping, the fallopian tubes that transport the eggs from the ovary to the uterus. It is a simple and effective surgical procedure, involves one post-operative check, has few side effects, and has a low failure rate. It leaves only two small scars and is a very safe surgical procedure. In a retrospective study of over 500 patients, only 2% complained about physical problems (Lawson, Cole, & Templeton, 1979). It is very difficult to repair fallopian tubes successfully, but very few women regret that they have had the operation. Lambers, TrimbosKemprer, and van Hall (1984) identified the factors associated with regret following sterilization as being lack of freedom of choice in the decision-making process; a belief that the sterilization operation would solve other problems; an inability to cope with loss of fertility; and a strong adherence to a sex role identity that was linked to reproductive capacity. Regret rates of up to 15% were reported in early studies, but prospective studies have found much lower rates of nearer 5% (Alder, 1984). There is some evidence that young women may be more likely to regret sterilization, but this is probably because there is an increased risk of marital breakdown associated with early marriages. In a retrospective study (Alder et al., 1981), interviews were carried out with a sample of 45 women who had been sterilized and a matched group of women whose partners had had a vasectomy. It was found that women who had been sterilized reported more menstrual changes both positive and negative than those whose husbands had had a vasectomy. Six women expressed some regret. These consisted of two whose housing conditions had improved, one whose marriage had broken down, one because of a perceived loss of femininity, one who wanted more children, and one because of menstrual problems that began after she had stopped taking the oral contraceptive pill. A prospective study of 115 Chinese women followed up over a year (Tang & Chung, 1997) found that there was no adverse effect on sexual adjustment and that their mental health measured by the General Health Questionairre (GHQ) (Goldberg, 1978) significantly improved. The regret rate after one year was 3.4% (Tang & Chung, 1997). Women requesting sterilization appear to have no higher rates of psychiatric disorder than

the general population (Cooper, Gath, Rose, & Fieldsend, 1982). In a prospective study of 200 women who were interviewed preoperatively, and at six and 18 months postoperatively, the number of psychiatric cases assessed using the Present State Examination (PSE) fell from 10.5% preoperatively to 4.7% at six months and 9.3% at 18 months. The PSE is a very robust standardized psychiatric diagnostic interview. Only 6.7% of women became psychiatric cases for the first time, which was the same as in the general population. They found that the frequency of sexual intercourse had remained unchanged over the period of the study in nearly half, fallen in just over a quarter, and increased in just under a quarter. Sexual satisfaction improved, possibly because of the removal of fear of pregnancy. There are cultural factors which may influence the reaction to sterilization in men and women, and postpartum sterilization may be followed by a higher rate of physical and psychological problems than sterilization at least three months after delivery (Oates & Gath, 1989). 8.16.2.5 Other Contraceptive Methods The IUD is mainly used by parous women and confers good protection. Like the pill it does not interfere with sexual activity. No adverse reports on mood or sexuality have been reported with the use of IUDs (Bancroft, 1988). Since the 1980s there has been an increase in the use of condoms, but few new methods of contraception have been developed recently, possibly because of fear of potential litigation. Female condoms have been introduced and appear to be acceptable (McCabe, Golub, & Lee, 1997). The male pill is another possible development, but there is some doubt about whether women would trust men to take it regularly (Guillebaud, 1991). In a report based on surveys in 1992, Oddens (1996) suggests that attitudes towards the perceived medical nature of some contraceptive methods (oral contraceptives, sterilization, and IUDs) influence contraceptive choice. 8.16.2.6 Models of Contraceptive Choice Lindemann (1977) described a three-stage model of a contraceptive career in women. In the first ªnaturalº stage, sexual intercourse is relatively rare and unplanned. A woman does not perceive herself as a sexual being and she neither uses contraception nor takes responsibility for it. In the second ªpeer prescriptionº stage, sexual activity is more frequent. There is a moderate acceptance of sexuality, and she may

Infertility seek information from friends. In the third ªexpert stageº she accepts her sexuality and becomes willing to seek contraceptive advice. The career model was supported for women but not for men in a meta-analysis of adolescent contraceptive use (Whitley & Schofield, 1986). Men and women may differ in their relative influence on the choice of contraceptive method. It has been assumed that women primarily influence contraceptive behavior within marriage and much family planning advice is directed at women. One of the few research studies on couples' contraceptive choice studied 40 couples over a four-year period (Miller & Pasta, 1996). They distinguished between method-choice and method-use in decisionmaking. Method-choice is about continuing with the present method or changing to a new one. Method-use is the actual use of the selected method, for example, taking the oral contraceptive pill daily or inserting a diaphragm. They found that husbands and wives appeared to have equal influence on method-choice but intentions depend on their own preference. This suggests that the final choice is based on sharing information and preferences, perhaps on a costbenefit basis. Social cognition models have been used with varying degrees of success to predict contraceptive use (e.g., Galavotti et al., 1995). The transtheoretical model of behavior change (Prochaska & DiClemente, 1984) suggests that people go through a series of stages in adopting a new behavior: precontemplation, contemplation, preparation, action, and maintenance. Grimely, Prochaska, Velicer, and Prochaska (1995) tested this model on 248 American college students and found that it could predict patterns of condom use. Mahoney, Thombs, and Ford (1995) tested the health belief model in college students in relation to condom use and HIV infection. Sporadic users differed from both consistent and nonusers in the number of sex partners in the previous year and frequency of drunkenness during sexual intercourse, but only perceived susceptibility to infection and self-efficacy differed between the groups. In a meta-analysis of over 130 studies of contraceptive use (Whitely & Schofield, 1986), contraceptive use was strongly associated with perceived risk of pregnancy. Social cognition models have attempted to predict condom use (Scheeran & Abraham, 1996), but in a longitudinal study of condom use over one year among 16- and 18-year-olds, Health Belief Mode variables were not found to predict condom use (Scheeran & Abraham, 1996). The choice of contraceptive method may depend on the perceived attributes of different contraceptive methods. Harvey, Beckman, and

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Murray (1991) compared 330 vaginal sponge users with 330 oral contraceptive or diaphragm users drawn at random from the same geographical areas and interviewed over the telephone. Effectiveness and safety were rated most highly. Each user group emphasised those attributes that characterised their chosen method. Convenience of use and interference with sexual activity were the least emphasised. The relative undesirability of other methods (e.g., side effects of the pill) was important. This suggests that the choice of a method of contraception is a rational decision-making process. However, if the method requires an action such as putting on a condom (possibly in an emotionally charged sexual interaction), the actual behavior may not match the intention. The role of perceived behavioral control suggested in the theory of planned behavior is also likely to be important in negotiation of contraceptive use (Conner & Norman, 1996). 8.16.3 INFERTILITY 8.16.3.1 The Experience of Subfertility Some couples choose to remain childless, and increasing numbers of couples delay the birth of their first child. The proportion of women who never have children appears to be increasing. It is expected that over a third of women born in 1967 will be childless at the age of 30 (Social Trends, 1995). A young couple may be expected to have children after a few years of marriage and their families and friends may well begin to ask them about their family plans or to assume that they are childless by choice and to isolate them for being selfish. Campbell (1985) suggested that in Western society, parenthood is perceived as having high status. Society may assume that for women, bearing children is a natural expression of femininity and that for men having children is a duty. The research evidence for a link between intentions to have children and fertility is unclear (Miller & Pasta, 1995). In reported studies, intentions have been assumed to mean wanting any children at all, wanting more children, or wanting children within a specified time period. Pregnancy, not behavior, is often used as an outcome measure. The category of pregnant women may include women who have unplanned pregnancies and exclude those who would have become pregnant but are subfertile. In their study of nearly 400 couples they found that child-timing intentions followed by childbearing intentions were the most important factors in predicting attempts to conceive. In a small qualitative study, Jones and Hunter (1996) used discourse analysis to describe the

390

Reproductive and Obstetric Issues

experience of infertility and question the assumption that it is necessarily stressful. However, men and women can have very intense desires for children, and this has been recognized in folklore. Many stories focus on the longing for a child which is accomplished in some magical way, such as The Gingerbread Man or Tom Thumb. There may be conditions attached as in the story of Rapunzel. In this story the couple must surrender their child to a witch who proceeds to lock her in a high tower. Most couples use contraception when they first establish sexual relationships and make a conscious decision to stop using contraception in order to have children. It is then assumed that pregnancy will result from unprotected intercourse. After a year with regular intercourse but no conception, many couples become concerned and anxious about their fertility. About 10±15% of couples are involuntarily infertile and childlessness can occur in couples who have never had children (primary infertility), and in those who have already had children (secondary infertility). It is not known how many couples find that they do not conceive but do not seek medical help. Many causes lie within the reproductive system of the woman, but male factors account for about a quarter of couples with subfertility. Sexual problems associated with conditions such as diabetes may well reduce the chances of conception as well as excessive use of alcohol or drug abuse. Psychiatric illnesses such as anorexia nervosa are associated with infertility. Recent suggestions that the sperm count may be falling in men have given rise to anxiety about future conception rates (Irvine & Cawood, 1996). In her novel The children of men, James (1972) describes a world in which there are no new births and people take desperate steps to try to cope with their lack of fertility.

8.16.3.2 Unexplained Infertility In about one-quarter of couples seeking investigation, the infertility problem will be unexplained, although this depends on the length of time of investigation, and the extent to which the couple is prepared to undergo prolonged and invasive investigations. Estimates of unexplained infertility vary across clinics, but reported rates range from 6 to 60% (Templeton & Penney, 1982). In the absence of any anatomical, physiological, or endocrinological dysfunction it is tempting to attribute the failure to conceive to psychological causes. Sexual problems in men such as impotence and retrograde ejaculation (when the semen is not fully expelled) will reduce fertility. There have

been some reports of sexual inhibitions leading to inability to ejaculate within the vagina, but these are uncommon (Irvine & Cawood, 1996). A number of studies have attempted to compare the characteristics of patients with apparent organic infertility to those with unexplained infertility. These are difficult because the extent of unexplained infertility may reflect the sophistication of the infertility investigations. These can be very invasive and some couples may not wish to comply with requests for postcoital semen samples. Edelmann and Connolly (1989) reviewed studies between 1972 and 1983 and concluded that there were no differences in personality characteristics. However, O'Moore and Harrison (1991) found that stress-related factors distinguished couples with unexplained infertility and couples who were normally fertile. They found significantly higher scores of anxiety, measured by the State Trait Anxiety Inventory (STAI), in infertile women compared with controls. They suggest that stress may raise anxiety levels which influence hormone levels. Prolactin is the most likely candidate. Levels of prolactin can be raised by stressful stimuli but the picture is unclear. Harper, Lenton, and Cooke (1985) found a positive correlation between prolactin levels and stress measured by an adjective check list in 20 couples attending an infertility clinic. They also found a positive correlation between STAI state, but not trait anxiety, and plasma prolactin.

8.16.3.3 Stress and Infertility Edelmann and Golombok (1989) argue for a link between stress and failure to conceive, but point out that single stressful events do not necessarily inhibit conception. Rape is highly stressful but may still result in conception. It seems unlikely that much infertility often has a ªpsychogenicº origin, but psychological factors may have some effect. Demyttenaere, Nifs, Steeno, Koninckx, and Evers-Kiebooms (1988) found that initial trait anxiety levels were related to the number of treatment cycles necessary for conception by donor insemination. Counseling may reduce the anxiety and guilt associated with failure to conceive, but even without treatment a proportion will conceive. Hull et al. (1985) found that 56% of women conceived after one year and 72% after two years. Bell (1981) suggests that the stress of infertility investigations themselves may contribute to failure to conceive. Connolly, Edelmann, and Cooke (1987) found that the emotional well-being of couples was affected by prolonged periods of clinical investigation and these were greater if

Infertility the cause of the infertility lay with the man. In a study of 20 women undergoing attempts to conceive by in vitro fertilization in an early program, it was found that they were generally positive about the very stressful and invasive procedures (Alder & Templeton, 1985). Even though they were unsuccessful in conceiving, they thought that it was their only chance, and some felt that they could then begin to accept their childlessness because they had made an effort. Harrison, Callan, and Hennessey (1987) found in a sample of 500 male partners of women undergoing infertility treatment that there were lower sperm concentrations in pretreatment semen samples compared with those given on the day of treatment. It may be assumed by both medical staff and lay people that women may be more upset if they cannot bear children, but this may be culturally and psychologically determined. Lampman and Dowling-Guyer (1995) gave six scenarios describing couples with different family situations to over 200 undergraduate students. They rated the scenarios on characteristics of the couples and their relationships. The results showed negative ratings of voluntary childlessness but less so towards involuntary childlessness. 8.16.3.4 Consequences of Diagnosis and Treatment 8.16.3.4.1 Distress Berg and Wilson (1995) looked at the pattern of distress in 104 couples with primary infertility attending for infertility investigations. Forty percent of men and 49% of women met caseness criteria on the SCL-90-R scale (Derogatis, 1977). In a third of couples both were not distressed, in 18% the male only, in 22% the female only, and in 27% both partners were distressed. Edelmann and Connolly (1996) assessed sex-role type (Bem, 1974) on psychological functioning in a sample of 130 couples presenting with primary infertility but before diagnosis. Masculine men were the least anxious, but there were no relationships between anxiety and sex-role type in women. Depressive symptoms may be associated with infertility but the infertility may also be associated with the use of antidepressant drug therapy (Lapane, Zeirler, Lasater, Stein, et al., 1995). Recognition of the problem and the feeling that something is being done may be very reassuring. Couples who have difficulty in conceiving probably discuss their reasons for having children and think through their reproductive choices in a way that most couples do not.

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Of course, facing a problem can bring couples together, and Raval, Slade, Buck, and Lieberman (1987) found a reduction in marital and sexual problems after attending discussions about sexual performance and the perceived association between virility and fertility offered by an infertility clinic. Burns (1995) reviews the extent of sexual problems among infertile couples and suggests that nonconsummation may be under-reported. 8.16.3.4.2 Grief The discovery that conception does not occur on demand and that pregnancies cannot be planned to order may be a shock to modern young women who have been used to controlling their fertility by the use of contraception. Women's sense of identity and personal relationships may be affected. It has been argued that medical intervention for diagnosis and treatment can result in guilt and shame for women who seek treatment for infertility because they see themselves as defective (Whiteford & Gonzalez 1995). Pfeffer and Woollett (1983) describe the emotional reaction to infertility and the pressures of medical investigations. For those that want children but are unable to have them, grief can be very intense. Their pattern of grief may resemble that described for bereavement (Kubler Ross, 1969). Their initial reaction to the diagnosis may be shock and disbelief. Pfeffer and Woollett, who had themselves experienced infertility investigations, suggest that the couple should be told the results of the tests together and given time to absorb and return to ask questions later. Denial may result in rejection of the clinic's findings and a renewed search for medical advice. 8.16.3.5 Sexuality and Infertility Some couples become so obsessed with monitoring their basal temperature, frequency, and timing of sexual intercourse that their sexual relationships suffer (Bell & Alder, 1994). They may feel very guilty about their feelings and may resent other women who are pregnant or who have as many children as they want. Their feelings of anger may be directed at themselves, perhaps for a previous termination, venereal disease, or premarital promiscuity. The angry feelings may also be directed at the infertile partner, so disrupting the sexual relationship. Paradoxically, some women report feeling guilty if their partners rather than themselves are responsible for their difficulties in conception (Alder, 1984). Anger may also be directed at the health professionals when

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treatment is unsuccessful. Infertility patients are extraordinarily compliant and clinicians find that they will often put up with the most invasive procedures and lengthy operations if there is even a small chance of success. Sexuality may be adversely affected following the diagnosis of infertility, and women and men may resent the constraints of timing of intercourse to optimize the chances of conception. Women may express more grief and distress about the lack of ability to conceive, and may feel that their femininity is threatened. There may be a greater adverse effect on male sexuality if the infertility problem is of male origin, and men are more likely to deny that there is a problem (Alder, 1984).

medical team that carried out the insemination. Some couples want to deny the existence of the donors but a study of the motivations and attitudes of semen donors in New Zealand suggests that donors themselves are interested in the future of their offspring (Daniels, 1989). Twenty-three semen donors completed an anonymous questionnaire about their motivation and attitudes to donor insemination. Almost all were interested in the outcome of their donations although most had not enquired. Most of them said that they thought about their offspring. Fifteen said they would be happy for the children to trace them at age 18.

8.16.3.6 Reproductive Technology

A very significant breakthrough came in 1978 with the birth of the first ªtest tube baby.º Since then in vitro fertilization (IVF) has been used extensively, and more than 40 000 babies are estimated to have been born as a result of IVF worldwide. The procedure carries a low success rate (22% in women under age 38 in a London hospital between 1988±1995; Power, 1997), but it may be the only way in which women who have damaged fallopian tubes can bear children. Couples who conceive by IVF are not typical of the general population. They may have had intensive and prolonged infertility investigations and treatment and may be very anxious about the outcome of the pregnancy. Johnston, Shaw, and Bird (1987) found that couples entering an IVF program overestimated their chances of success. At the time the published success rate of having a live baby was as low as 8%, but over half the sample rated their chances as over 30%. They are likely to be older and highly motivated to become parents. They appear to have as good or better marital relationships than comparison groups. This may reflect a high level of commitment to marriage and the demands of infertility treatment, and IVF may foster communications. However, those that take part in psychological studies may feel that they need to assert their suitability as parents (McMahon, Ungerer, Beaurepaire, Pennant, & Saunders, 1995). IVF treatment is expensive and Woollett, Dosanjh-Matawala, and Hadlow (1991) point out that couples may become more anxious because of the costs of private infertility treatment and its restricted availability. There are concerns about the future of reproductive technology and in the UK treatment is regulated by law. Shaw, Johnston, and Shaw (1988) showed that about half of 118 couples waiting for IVF or embryo transfer (ET) treatment in 1986 desired counseling and the offer of counseling is now mandatory. The general

8.16.3.6.1 Donor insemination The opportunities for treatment for infertile couples have been increased by advances in reproductive technology. Artificial insemination by a donor is used in couples where the man is infertile but the woman ovulates normally. Semen from an anonymous donor is inseminated into the vagina of the fertile woman. If she conceives she will have a child who carries half of her genes and half of those of the donor. The pregnancy proceeds normally and the couple need not tell anyone that the conception did not occur in the usual way. The couples may be counseled against keeping the circumstances of the conception secret from the child. In an interview study, it was found that out of 20 couples receiving donor insemination (DI), seven wives and 10 husbands would never tell a child that it was conceived by DI (E. M. Alder, 1984). Snowden and Snowden (1984) argue strongly for openness and suggest that children should be told the full facts of their conception when they are considered old enough to understand. In the past, donors have remained anonymous but a Swedish law in 1995 gave those born by DI the right to know the identity of the donor when they become mature. This legislation was followed by a decline in the number of DI births although it is not clear whether this was because of the reaction of health professionals to legislation, or to a decline in the number of donors. An open approach is also advocated in New Zealand, but by a voluntary code (Daniels & Lewis, 1996). Follow-up studies of DI couples and their children have been difficult to carry out because of the secrecy involved. No doubt part of this is because of the stigma surrounding male infertility and its association with virility. Many couples prefer to raise the children as their own and without any further contact with the

8.16.3.6.2 In vitro fertilization

Miscarriage and Abortion public may be sympathetic to the problems of those with infertility problems. In an early study, Alder, Cook, Davidson, West, and Bancroft (1986) surveyed nearly 2000 women attending a family planning clinic and found that the majority were in favor of research into in vitro fertilization and ET. 8.16.3.6.3 Surrogacy A surrogacy arrangement is an undertaking given by a woman (the surrogate mother) to bear a child for another person or couple (the commissioning parents), the latter proposing to undertake the future care of the child (Blyth, 1995). Conception can occur by insemination of the surrogate mother by the commissioning father's sperm, or by sexual intercourse for the purposes of conception. ªHostº surrogate mothers have a fertilized egg implanted into the uterus and the embryo will be the genetic offspring of the commissioning parents. There may be legal control over surrogacy arrangements, particularly financial arrangements. Currently, commercial agencies are not allowed to operate in the UK. There is still controversy and debate about the moral and ethical issues. The case of ªBaby Mº in the 1980s in the USA involved a commissioning couple who contracted with a surrogate mother. She then gave birth to a baby which she refused to hand over. Eventually, after legal battles, custody of the child was given to the commissioning couple. This raised a number of questions including the motives of surrogate mothers, mother±child bonding relationships (she breast-fed for three months), and the rights of the grandmothers. The psychological and social issues are discussed by Schwartz (1991). In a qualitative study, Blyth (1995) interviewed 20 commissioning couples who were members of a self-help group (childlessness overcome through surrogacy, COTS). Most of them knew about surrogacy from the media, and the idea was usually initiated by the wife. A constant anxiety for the commissioning couples was that the surrogate might change her mind. Most commissioning parents expected to be present at the birth. All of them believed that the child should be told the full truth of its genetic and biological origins. Blyth describes the shift in attitudes of the medical profession and compares the openness now recognized in adoption with increasing openness in surrogacy. 8.16.3.7 Adoption Adoption can be difficult because of the shortage of babies, and the selection procedures are very rigorous. The principle that the best

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interest of the child is paramount is held by most of the legal systems in most countries. Changes in approaches that have occurred since the 1970s have been towards more openness about the process. Open adoption is where the birth parents and the adopting parents know each other and maintain a relationship with each other. It has the advantages of increased feelings of control and open communication and maintenance of self-identity. However, there are risks of threatening the adopted parents' confidence in parenting and ambivalence about contact with birth parents (Demick & Wapner, 1988). The implications for the family are discussed by Humphrey and Humphrey (1988) and Schwartz (1991). There may be many barriers to adoption such as marital status, age of the partner, previous medical history, or other social criteria. These are in spite of the evidence that single women do raise children successfully on their own, that older parents have no more problems than younger parents, and that disability does not preclude successful (however defined) parenting. Perhaps because of the shortage of babies offered for adoption together with societal norms, couples who have difficulty in conceiving and bearing their own children seek medical intervention. 8.16.4 MISCARRIAGE AND ABORTION 8.16.4.1 Miscarriage 8.16.4.1.1 Spontaneous abortion Miscarriage is defined as the spontaneous loss of a pregnancy within the first 24 weeks of gestation. Most miscarriages are caused by genetic malformation of the fetus, but they may also be caused by incompetence of the cervix, hormone deficiencies, uterine abnormalities, or infections. About 20% of pregnancies are lost by 24 weeks. There is probably a much higher level of undiagnosed loss than recorded in hospital statistics, and this may remain unrecognized. In the UK there is no need to register the birth if the pregnancy is lost before 24 weeks, and the miscarrying woman may not be referred to a maternity ward. Miscarriage may be treated entirely as a gynecological event and women are admitted for removal of the products of conception either medically or surgically. The psychological effects of the loss of early pregnancy may be unrecognized. Clinicians may assume that the pregnancy is not thought of as a baby and that there is no need to mourn the loss (Iles, 1989). Women probably only stay in hospital for a short while, and medical and nursing staff may not be aware of later distress. There may be a

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reluctance to talk about the event to others. It may be perceived as ªnature's wayº or as ªbeing for the best.º Miscarriage carries the double ªsocial tabooº of being both a gynecological event and a death. The introduction of home pregnancy kits may mean that women become aware that they are pregnant early and in the privacy of their own home. They do not need to acknowledge it to medical staff, and can choose those in whom they confide. This may mean that social terminations can take place early, but may also mean that more miscarriages are recognized as such. The widespread use of ultrasound scans early in pregnancy means that women may become aware that they are pregnant at an early stage in pregnancy and at a time when there is a relatively high risk of miscarriage. They may also identify themselves as carrying a baby rather than a fetus because they have seen the picture from the ultrasonic scan. 8.16.4.1.2 Grief and loss In retrospective interview studies, grief reactions similar to those following stillbirth have been found (Friedman & Gath, 1989). The literature on bereavement suggests that in any loss followed by grief and mourning, resolution may take some time (Parkes, 1985). Leppert and Pahlka (1984) described grief in 22 women who had had a miscarriage. The grief did not resolve until three to four months after the loss. Prettyman, Cordle, and Cooke (1993) found that 41% of women were anxious one week after miscarriage and 32% after 12 weeks. Janssen, Cuisinier, de Graaw, and Hoogduin (1997), in a study of women who had had pregnancy loss in the Netherlands, found that grief intensity was higher in women who had been pregnant longer, had preloss neurotic personalities, and did not have other living children. There can be a great sense of loss of a future life but women may also be mourning the loss self-esteem and their status as a future mother. Jackman, McFee, and Turner (1991) used semistructured home interviews to assess 27 women who had had a previous miscarriage and attended hospital. Half were found to be ªcasesº measured by the GHQ-30 scale (Goldberg, 1972). Grief can be considered normal but in a study of 67 women admitted to hospital for spontaneous abortion (Friedman & Gath, 1989), 84% were diagnosed as being ªcasesº using the PSE (Wing, Cooper, & Sartorius, 1974). Those who were more likely to show psychiatric morbidity were those who were single, had a previous psychiatric history, were high on scores of neuroticism, and had had previous obstetric problems.

8.16.4.1.3 Postmiscarriage care Iles (1989) suggests that psychiatric morbidity could be reduced by advising women not to become pregnant too soon after miscarriage. A new pregnancy may inhibit the completion of mourning for the baby that was lost. Medical advice is usually to delay a further pregnancy for up to six months but many parents disregard this advice (Davis, Stewart, & Harmon, 1989). If the grief is unresolved the woman may remain emotionallydetachedinasubsequentpregnancy, so as to protect herself in case the pregnancy fails again. It is suggested that the mother may continue to be detached after the birth and remain unresponsive to the new baby, or alternatively over-react and become over protective. They suggest that in order to reduce the risks of adverse reactions, women (i) should not necessarily be nursed apart from other women because this could lower still further their self-esteem; (ii) should be assisted to comprehend the reality of the loss, particularly in the absence of a physical presence to mourn. Only 4/27 women in the study by Jackman et al. (1991) saw the physical remains, and only two were consulted about a burial. The reality of the loss also needs to be explained to the woman's family; (iii) need to be given as much information as possible and to be reassured that they are unlikely to have been responsible for the loss of their pregnancy; and (iv) need someone to listen to their experience and with whom they can share their sense of guilt and failure. (i) Psychological consequences Results based on retrospective accounts can be difficult to interpret, but of course prospective studies on miscarriage are difficult to do. Cuisinier et al. (1996) surveyed over 2000 women recruited from a Dutch magazine for expectant and new parents. 221 women lost a singleton through miscarriage, stillbirth, or neonatal death, and were followed up on four occasions at six-month intervals by a postal questionnaire. 193 miscarried within the first 16 weeks of pregnancy and the women were assessed on a number of standardized questionnaires. Grief was assessed by the perinatal grief scale (PGS; Potvin, Latvin, & Toedler, 1989), but feelings about future pregnancies, contraceptive use, and intentions to conceive were not reported. Most (86%) conceived again within 18 months. Of those who became pregnant within six months, only 3% reported that they saw the baby as a replacement child. The responses to the questionnaire were analyzed by regression analysis

Miscarriage and Abortion and it was found that a new pregnancy and birth of a new child significantly lessened grief, while grief significantly intensified following a new pregnancy loss. They also suggest that the speediness of the new pregnancy appears to reduce grief to some extent. They found little indication of severe maternal psychopathology likely to interfere with a healthy mother±child relationship. However, they did not use a standardized psychiatric interview, the data were collected by post, and the sample of readers may not be representative. These authors, and Davis et al. (1989), suggest that the topic of a new pregnancy should be discussed with the couples and they should be helped to make their own informed decisions and given subsequent support. (ii) The male partner Few studies have considered the effect of miscarriage on the male partner. Women may be more ready to cry and express their loss than men, and men may be seen as supporting the woman in her loss rather than grieving themselves. If father±infant ªbondingº takes place after birth then it would be expected that men would not become attached to the fetus and that the duration of the pregnancy would not contribute to the extent of the grief. Johnson and Puddifoot (1996) described the response of male partners. They interviewed an opportunity sample of 126 stable partners of women who had recently miscarried. The scores on the PGS and the impact of events scale were similar to those found in women. They found a very similar reaction to the loss that has been described in women. The duration of the pregnancy and seeing the ultrasound scan were associated with an increasing level of grief in men on all subscales of the PGS. (iii) Miscarriage after IVF Loss of pregnancy following IVF may be particularly problematic. If the eggs are fertilized and the embryo is successfully transferred, women may feel that they are already pregnant. They may believe that they are pregnant early in gestation and be treated by others as being pregnant. Greenfield, Diamond, and DeCherney (1988) describe the grief response following failure to become pregnant during an IVF cycle as being analogous to the reaction that women experience after miscarriage. 8.16.4.2 Abortion Abortion (social termination of pregnancy) was legalized in the UK by the 1967 UK

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Abortion Act, but abortion is still controversial and open to legal disputes in different countries. The Abortion Act legalized termination of pregnancy ªif the continuation of the pregnancy would involve risk to the life of, or injury to the physical or mental health of the pregnant woman or to any existing children of her family, greater than if the pregnancy were terminated.º In 1990, The Human Fertilisation and Embryo Act 1990 amended the 1967 Act to limit the gestation to 24 weeks, where formerly it had been limited to 26 weeks. Adler et al. (1990) reviewed psychological responses to abortion in the USA. Most descriptive studies found a low incidence of severe negative responses after abortion. Two studies (Athanasiou, Oppel, Michaelson, Unger, & Yager, 1973; Zabin, Hirsch, & Emerson, 1989) compared those who had abortions with those who gave birth at term and neither found adverse effects of abortion. Distress is highest before abortion and decreases afterwards. Later levels of distress were related to difficulties in making the decision. However, Adler et al. point out that there are methodological problems of sample selection, no baseline data, short followup time, and lack of control for ªwantednessº of the pregnancy. 8.16.4.2.1 Psychological consequences The psychological effects of abortion have been much disputed. It has been suggested that women who have terminations before their first baby may resolve their feelings adequately at the time, but when they come to have a baby later they view the termination differently and may have a resurgence of guilt (Riley, 1995). It is difficult to carry out research into the psychological effects of abortions because it is not known how women would have felt if they had not had the abortion and continued with the pregnancy. Abortions that are carried out for medical reasons as a consequence of prenatal diagnosis or screening tests may be very different from those that are carried out because of lack of social support. Women who have tests in pregnancy such as alphafetoprotein (AFP) screening for neural defects or amniocentesis for Down's syndrome may be faced with the decision to have a relatively late termination. Attitudes towards abortion may influence the uptake of prenatal screening (Marteau et al., 1992). Green and Statham (1996) describe the experience of women undergoing an abortion for a fetal abnormality as a distressing event. Both parents may experience guilt about the decision and loss of self-esteem because of the conception of a handicapped child. The implications of genetic testing in pregnancy are

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complex and the rapidly expanding range of genetic testing raises many issues that need to be addressed (Marteau & Richards, 1996).

acceptance, the more negative the attitudes to femininity. The results confirmed the distinction between levels of general self-acceptance and self-acceptance as a new mother.

8.16.5 PREGNANCY 8.16.5.1 The Impact of Pregnancy

8.16.5.3 Antenatal Classes

For women, pregnancy is a time of considerable biological and psychological changes. When a woman becomes pregnant and delivers her first baby she may be admitted into hospital for the first time in her life. It may be the most significant interaction with the medical profession that she ever has. From the medical point of view it is an opportunity for formal screening and health checks. Psychological problems may be identified at this stage, but of course there are normal emotional changes occurring during pregnancy. Both men and women undergo psychological and social changes and the transition to parenthood is a major life event.

As families get smaller, less cumulative wisdom may be provided by family members and more by health professionals and the media. Antenatal classes are routinely offered to new parents in the UK and elsewhere. They attempt to increase knowledge and decrease anxiety about labor and infant care. Evaluation of these is difficult because they are offered routinely. It would be unethical to allocate women randomly to classes or nonclasses, although this was done in an early study (Huttell, Mitchell, Fischer, & Meyer, 1972) and showed a positive effect on birth outcome. There are socioeconomic differences between attenders and nonattenders. In a small study, Michie, Marteau, and Kidd (1992a) attempted to increase attendance at antenatal clinics by changing women's perceptions of the clinics. They sent out a letter to every second woman who said that they did not intend to attend the classes, but found that there was no difference in the response compared with those who had not had the letter. They conclude that increasing attendance may need a more powerful intervention. Hillier and Slade (1989) compared women choosing to attend either hospital or community classes. They assessed the women at their first antenatal class and again after their last class. The antenatal classes, which are fairly typical of classes offered routinely in the UK, consisted of eight weekly sessions, each lasting approximately two hours. They included one hour of teaching relaxation, breathing, and physical exercises to prepare for labor, and one hour for teaching and group discussion. Topics included self-care during pregnancy, labor, the first few weeks postpartum, and a tour of the maternity unit and delivery suite. As expected, knowledge levels rose, and anxiety levels fell but the changes were not significantly correlated at either the first or last assessment. Knowledge levels were related to social class at the initial assessment but not at the final assessment. This suggests that the effect of the classes was to reduce the differences related to social background and this confirmed the finding by Michie, Marteau, and Kidd (1992b) who tested the ability of Fishbein and Ajzen's theory of reasoned action (see Chapter 8.15, this volume) to predict antenatal attendance in a study of over 500 women. They found that the women's intentions to attend predicted their behavior and that perceptions of the

8.16.5.2 Transition to Parenthood Pregnancy is the beginning of the transition to parenthood, although it could be argued that if a couple stop using contraception in order to conceive, they have already begun the transition. As well as the emotional changes that occur during pregnancy, there are also considerable social changes. Relationships with the couples' own parents will change, and their place in the extended family changes (especially if their baby is the first of a new generation). During pregnancy women adjust to a new identity, and this may be harder for some than others. Breen (1975) described how women come to terms with themselves as new mothers. They have to consider how they will function as mothers. Women having their first baby may have a concept of ideal motherhood. Many women may have doubts about their ability to be ªgoodº mothers. Dimitrovsky, DavidFuchs, and Itskowitz (1989) investigated the relationships of self-ideal discrepancies and attitudes towards pregnancy. The sample were 92 middle-class primiparae who were given a semantic differential scale (Osgood, 1952) to measure their level of self-acceptance; the maternal attitudes to pregnancy instrument (Blaw, Wekowitz, & Cohen, 1964) and a measure of attitudes toward femininity, the objective social perception inventory (Kipper, Zigler-Shani, Serr, & Insler, 1977). They found no difference in the scores until the last two months of pregnancy when there was an increase in negative attitudes to femininity. However, scores on the maternal attitudes scale did not change. The more negative the self-

Pregnancy father's attitudes were important. Walker and Erdman (1984) found that antenatal class attendance eliminated the differences in confidence and knowledge between primiparous and multiparous women. Noncompleters were more likely to have poorer educational qualifications, and to have attended their first antenatal classes later in pregnancy. Antenatal classes give a limited input into the educational support for pregnant women. A different approach has been taken by Oakley and colleagues (Oakley, 1992). The value of social support in promoting health has been well documented in other contexts. The Social Support and Pregnancy Outcome study (SSPO) was a randomized controlled trial of social support intervention in pregnancy conducted at four centers in England in 1986±1988. Five hundred and nine mothers with a history of low birthweight babies were recruited. Half were offered a social support intervention consisting of a program of home visits and 24-hour contact with a midwife, and half had routine care. The intervention group had fewer low birthweight babies, fewer antenatal hospital admissions, nonspontaneous labor, and deliveries.

8.16.5.4 Psychological and Social Changes Couples expecting their first child may reflect on their own experience as children and seek out the history of their own infancy. In terms of reproductive life events, pregnancy may be equally problematic for fathers. The expectant father may be a figure of fun, as portrayed in the media, but many men become closely involved with the progress of the pregnancy. Young men tend to have had less experience of babies than young women, and are less likely to have been to classes on parenthood at school than women. In a study of fathers, Lewis (1986) found that few fathers accompanied their wives to the antenatal clinic or attended parent craft classes. The parents of the expectant couple may take on a renewed significance in their lives. Anderson, Fleming, and Steiner (1994) surveyed 30 women during pregnancy and then followed them up at eight weeks postpartum. They were asked about issues of pain, body image, attitudes towards parenting and mood during the third trimester of pregnancy, and the early postpartum period. Depressed mood (measured by the BDI) was worse during pregnancy than after the birth. Body image and pain tolerance were positively correlated with high scores on the BDI and on depressed mood (MAACL-D, Zuckerman & Lubin, 1965). Later in pregnancy the woman may give up work and this may change her social status.

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She may miss the social contacts, the structure and routine of work, and feel isolated from her former colleagues. Changes in body image as she increases in size may reawaken fears of being fat (Strang & Sullivan, 1985). Towards the end of pregnancy both parents focus on the impending birth, and this will include the pain associated with childbirth. There are wellrecognized changes in mood during pregnancy. ªThree months dreary, three months cheery, and three months wearyº is a traditional saying that probably reflects the experience of many mothers. During the first trimester some women are nauseous and feel tired. They may be anxious about the implications of being pregnant, and unsure of the future. Women who have had previous problems of infertility, previous miscarriages, or who have delayed their childbearing may be particularly anxious. By the second trimester most women will have had their pregnancy confirmed and become overtly ªexpecting.º They begin to make plans about relationships, employment, and housing. The fetus takes on an identity, and may even be given a nickname. The issues of antenatal screening become pertinent. They will be aware that their own health behavior could affect the health of their baby and may give up or reduce their smoking and alcohol intake. There is probably only a small increase in risk of mental illness during pregnancy (Oates, 1989), and episodes are often related to previous psychiatric history. The risk of developing a major mental illness (manic depressive illness or schizophrenia) is much lower during pregnancy than at other times in a woman's life. Depressive illness in the last trimester of pregnancy is related to severe postnatal depression. Oates (1989) argues for close cooperation between obstetricians and psychiatrists in the management of major mental illness in pregnancy, and suggests specific approaches for women on medication and at risk.

8.16.5.5 Changes in Sexuality At the beginning of pregnancy, physical and psychological changes start to affect sexuality. There are physical changes in muscle tone, size, and shape of the body. Weight gain may be considerable and back pain is not uncommon. Sleep is often disturbed, especially when there is pressure on the bladder in the night, and sometimes pregnant women experience overwhelming fatigue. The change in role in the family may affect sexual feelings and there may be conflicts between image of self as a lover and potential mother (Alder, 1994; Reamy & White, 1987).

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Most studies of changes in sexual activity during pregnancy have found a gradual decline over successive months, and this is followed by slow return to prepregnancy levels over the first postnatal year. Frolich et al. (1990) found a significant decline in sexuality toward the end of pregnancy and this was not related to marital status, age, or parity. In a prospective study of middle class women in London, Robson, Brant, and Kumar (1981) found little change in sexual activity during pregnancy until the third trimester. Those reporting little or no pleasure from sex before pregnancy were much more likely to have stopped having intercourse in the first trimester. Only 40% said that they found sex enjoyable in the third trimester and only 26% had orgasm. The incidence of sexual problems is difficult to estimate but 8±15% may have difficulty in achieving orgasm (Bancroft, 1989). However, this is not necessarily related to satisfaction with the sexual relationship. Masters and Johnson (1966) found that although women had been advised to avoid sexual intercourse during pregnancy, only 21 out of 71 husbands understood, agreed, or honored the advice. Today, most women are more likely to be advised to continue with sexual activity as long as it remains comfortable.

8.16.5.6 Teenage Pregnancy High conception rates in teenagers could be due to lack of knowledge about contraception, difficulties of access to contraception, unavailability of contraception at the time of sexual intercourse, barriers to the use of contraception, or even the desire to become pregnant. It can be assumed that most teenagers know that unprotected intercourse carries a risk of becoming pregnant, but they may underestimate the extent of that risk. There is no single reason why teenagers become pregnant and it may not be simply a lack of information or access to contraception (Woodcock, Stenner, & Ingham, 1992). Contraception may not be used the first time they have intercourse. Johnson (1994) found that of those who had had intercourse before age 16, almost half the women and over half the men reported not using contraception the first time that they had intercourse. Most research studies have concentrated on access to and knowledge of contraception and on teenage sexual behavior in investigating factors associated with teenage pregnancy (MacAlpine, Abraham, & Davies, 1995). A number of studies have considered attitudes to sexuality, changing patterns of sexual behavior, use of contraception, effect of deprivation, provision of family planning

services, and sex education (SNAP, 1994). All of these factors contribute to the chances of becoming pregnant. Pregnancies could also result from positive attitudes towards pregnancy and childbearing even though the pregnancy may be later reported as being unplanned at the time of sexual intercourse. Having babies when young may be seen as conforming to a desirable social norm (Phoenix, 1989). Sutherland (1997) suggests that young women may choose to become pregnant because it demonstrates their independence, feel that it shows devotion to their boyfriend, they desire something of their own to love, they have no employment prospects, or they are worried about later infertility. These feelings need to be interpreted in the context of the young person's cultural context, and for some young people a pregnancy in late teens is a positive event.

8.16.6 THE POSTNATAL PERIOD 8.16.6.1 Changes after the Birth The biopsychosocial model can be well illustrated by the changes to parents during the first postnatal year (Holden, 1991; Kumar & Brockington, 1988; Oates, 1989). Physical changes in the mother following the pregnancy and delivery, the effects of breastfeeding, lack of sleep, interrupted sleep, and general fatigue are all physical factors that may affect mood and well-being. The psychological changes of role, the emotional experience of being parents for the first time, and the altered dynamics in the family all make demands on the new couple. The life events of childbirth, caring for a new member of the family, and change in work role may all act as stressors. The birth of the first child may be followed rapidly by a change in financial circumstances and moving house. Even though family sizes are often small, and more women are in employment, having children is still significant in economic, psychological, and health terms. It has been suggested that maternal morbidity after delivery is extensive and under-recognized. Glazener et al. (1995) carried out a questionnaire survey of a 20% random sample of women delivering in one week (n=1249) at two weeks, eight weeks, and 18 months after delivery, with a response rate of 90%. Psychological problems reported included tiredness (85%, 87%, and 76%) and tearfulness/depression (16%, 21%, and 17%). These were not related to parity or method of delivery.

The Postnatal Period 8.16.6.2 Postnatal Change in Mood In the first 10 days after birth a new mother may experience a greater range of emotions than at any other time of life. She may be ecstatically happy, worried, and anxious; feel loved and esteemed; tearful and confused; she may be very excited and terribly tired (Oates, 1989) The first three days are sometimes known as ªthe pinksº and about the fourth or fifth day she may experience ªthe blues.º The blues are short episodes of emotional ups and downs, and are experienced by the majority of first-time mothers. The causes of the blues are not clear. The blues should not be confused with postnatal depression which is a ªmorbid and persistent depressed mood, usually commencing six to twelve weeks after deliveryº (Cox, 1984, p 840). It can be diagnosed using psychiatric diagnostic criteria such as DSM-III or DSMIV, but the somatic symptoms sometimes associated with depression such as sleep disturbance have to be considered carefully. Postnatal depression probably occurs in about 9±13% of women (O' Hara & Zekowski, 1988), and the more severe postpartum psychosis occurs in about two in 1000 deliveries (Kumar, 1989). The causes and treatment of postnatal depression have been extensively described by Cox, Holden, and Sagovsky (1994) and Riley (1995), and reviewed in a meta-analysis by O'Hara and Swain (1996). A meta-analysis of 59 studies (O'Hara & Swain, 1996) included studies which (i) reported statistical relationships between postpartum depression and psychosocial variables, (ii) assessed the variables during pregnancy or delivery, (iii) recruited by random or quasirandom sampling, and (iv) assessed depression at least two weeks postpartum. Fifty-nine studies were included although the method of searching was not described. They found an overall prevalence rate of 0.128 (95% CI 0.123±0.134). Postnatal depression is not therefore a major problem in numerical terms and the incidence may not be much greater than that found in the general population. However, the context is very different. The presence of a new baby makes depression particularly significant, not least because expectations of fulfillment and happiness are high. There is thus some evidence of a slight rise in depression in the puerperium and some suggestion that it differs from depression at other times of life. There are likely to be several research approaches to understanding that are likely to develop in the next few years. There are considerable advances in understanding of the biological causes. There are changes in brain metabolism that take place around childbirth,

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possibly in response to the dramatic changes in hormone levels. The links are difficult to establish because all women experience physiological changes during childbirth but not all become depressed. We know that sex steroids have an effect on serotonin function. They alter the levels of 5-HT1a receptors and have specific effects on dopamine transmission (Wieck, 1996). There are also peripheral effects of changing estrogen levels. Lactating women have low levels of circulating estrogen and these may be related to vaginal dryness and dysparunia (painful intercourse) after childbirth. It is possible that estrogen levels may also affect mood but although many women and their doctors may believe that changes in mood and sexuality are all due to hormone changes, the evidence is unclear (Alder, 1994). It might seem obvious that obstetric problems would be related to postnatal depression and there have been a large number of studies that have tried to relate obstetric intervention to later depression. Dimatteo et al. (1996) carried out a meta-analysis of 358 papers comparing women with either cesarean or vaginal delivery. They found relatively few differences, although they found that those who had cesarean deliveries had a less positive reaction to the infant at six weeks, had less tactile stimulation, caretaking and intimate play with the baby, and there was a nonsignificant trend in risk of postnatal depression. The psychosocial argument for postnatal depression has focused on social and psychological risks and vulnerability factors. O'Hara and Swain (1996) in their meta-analysis found that postnatal depression was predicted by poor marital relationships, past psychiatric history, low levels of social support, and stressful life events. They found no association with age, marital status, level of education, or number of children. It is interesting that the significant predictors are probably already known to health visitors. In a recent review, Lee (1997) argues for a social construction of postnatal depression and suggests that for the majority of women their problems lie in the social demands of motherhood and not in any individual physiological or psychological deficit. However, she ignores the physical changes in the postnatal period as described above, and the discussion on the parents' relationship does not discuss changes in sexuality. With so much media interest it might be expected that women's understanding of postnatal depression would be relatively high. Whitton, Warner, and Appleby (1996) recruited 78 mothers into a treatment trial for postnatal depression (Appleby, Warner, Whitton, & Faragher, 1997), and asked them about their

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current symptoms and attitudes to treatment. Nearly all (97%) reported that they had been feeling worse than usual but only 25 (32%) believed that they were suffering from postnatal depression, even though they had reached research diagnostic criteria (Spitzer, Endicott, & Robins, 1978) for depression. The most common reasons that they gave to explain how they were feeling were tiredness (33%), family problems (17%), the baby (9%), or other children (7%). Over 80% had not reported their symptoms to any health professional. Counseling has been a major advance in treatment. In a randomized controlled trial, Holden, Sagovky, and Cox (1989) showed that nondirective counseling given in up to eight visits of 30 minutes was effective in alleviating postnatal depression. Recovery took place in 69% of those counseled compared with 38% of those receiving routine care. This has led to the advocacy of listening visits that can be carried out by health visitors. In a major study, Cooper and Murray (1995) found no difference between nondirective counseling, psychotherapy, and cognitive-behavioral therapy. Appleby et al. (1997) carried out a randomized controlled trial of fluoxetine or placebo plus one or six sessions of cognitive-behavioral counseling. It could be argued that to offer cognitive-behavioral therapy in one session is a contradiction in terms but the results were very positive. There were highly significant improvements in all four treatment groups. Fluoxetine was significantly better than placebo and six sessions of counseling were better than one. There was no significant interaction between counseling and fluoxetine. They concluded that both drug therapy and counseling were effective but there was no advantage in receiving both.

8.16.6.3 Postnatal Depression and Development of the Infant Gotlib and Whiffen (1989) reported a relationship between maternal depression and low scores on the Bayley Scales of Mental Development in infants of two months. The influence of depression on the development of the child could be mediated in a number of different ways (Murray & Cooper, 1996). Depression disrupts normal communication and interaction between the mother and her baby. If the mother does not communicate and stimulate the baby, she reduces its opportunity to learn early communication skills. Prolonged exposure to the symptoms of maternal depression results in learned dysfunctional behavior. The model presented to the child will be of a noncommunicating and withdrawn adult and children easily

imitate adults' behavior (Cooper & Murray, 1997). Alternatively, social factors could explain variations in child development. The depression could be related to some other factor such as social deprivation or abuse in the family. Field, Healy, Goldstein, and Gutherz (1990) assessed infant behavior in depressed, disadvantaged mothers and found that their infants tended to be withdrawn and lacked positive affect. Murray, Fiori-Cowley, Hooper, and Cooper (1996) compared healthy children of a sample of 29 mothers from a maternity hospital who were depressed (RDC) with 20 children of control mothers who were not depressed. They observed face-to-face interactions at two months and they found few differences between the two groups. However, there was some effect on older 18-month infants. Murray and Cooper (1996) suggest that the most likely mechanism is impaired pattern of communication occurring between the mother and child in the context of depression, rather than the child's exposure to depression per se. The effect is likely to be an interaction, because an uncommunicative child may affect the mother's behavior towards it. Alder and Thome (1994) found that those mothers scoring high on the Edinburgh Postnatal Depression Scale (Cox, Holden, & Sagovsky, 1987) were also more likely to report infant difficulties. Having a difficult infant could also increase the likelihood of becoming depressed, or at least feeling fatigued and low in maternal self-efficacy. Pop et al. (1995) found an incidence of postpartum depression of 21% in their sample of 293 women using RDC (Spitzer, Endicott, & Robins, 1978). In their logistic regression analysis, only major depression contributed significantly to intelligence quotient (measured in five-year old children by three scales of the McCarthy Scales of Children's Abilities, MSCA), with an odds ratio of 7.0 (95% CI = 1.6±43, P = 0.04). 8.16.6.4 Breast-feeding 8.16.6.4.1 Breast-feeding as a health behavior Breast-feeding can be regarded as a health behavior in the sense that it has a direct effect on health. Antibodies from the mother are passed through the breast milk to the infant, and the composition of human breast milk may be superior to artificial formula feed. Infant feeding behavior has been analyzed using social cognition models but breast-feeding is a complex behavior pattern involving relationships as well as health beliefs (Alder, 1989). Breastfeeding benefits the health of the baby (Howie, Forsyth, Ogston, Clark, & Florey, 1990),

The Postnatal Period although it is unusual in that it may have positive benefits for the child but has costs for the mother. Breast-feeding can be painful, physically tiring, and emotionally demanding; it is also very satisfying and fulfilling. Mothers are encouraged to breast-feed, and most first-time mothers attempt to breast-feed. In the UK, the continuation rates are very low and only about 30% of mothers are breastfeeding at three months postpartum. The incidence is strongly related to socioeconomic status (White, Freeth, & O'Brien, 1992), and in the UK mothers from lower socioeconomic groups are less likely to breast-feed. The situation is different in developing countries and urban mothers may be more likely to use formula feeds (Foster, Lader, & Cheeseborough, 1997). The effect of the method of feeding on the development of the child could result from either the milk itself (breast milk or formula) or from the feeding behavior, or both. In early reports of an association between breast-feeding and intelligence, the association was confounded with socioeconomic factors. Florey, Leech, and Blackhall (1995) found that children who were breast-fed on discharge from hospital had an average value on the Bayley scales of between four and six points higher than formula-fed children. Experimental trials of infant feeding in healthy infants are not possible, but Morely, Cole, Powell, and Lucas (1988) investigated the effect of breast milk given to preterm children by bottle. Children of mothers who chose to provide breast milk for their preterm infants in addition to formula were found to have an eight-point increase on the Bayley scales compared with those receiving formula only. However, those mothers choosing to provide breast milk might be different in their social characteristics. After controlling for socioeconomic factors, the difference was still 4.3 points, and these differences were maintained at 7.5±8 years of age when assessed by the Weschler Intelligence Test. However, Doyle, Rickards, Kelly, Ford, and Callanan (1992) collected data in a prospective study of low birthweight babies and controlled for social factors including social class, maternal education, age of mother, and gender of baby. They found no significant differences in IQ scores of seven-year-old children between those who had been given expressed breast milk and those who had formula only. Children who had received direct breast-feeding had higher IQ scores, which suggests that breast-feeding may have a direct effect on the child or an indirect effect via the behavior of the mother. The behavior of the infant when breast-fed is very different from that of the formula-fed baby

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not only in the sucking pattern. Wright (1981) found that breast-fed infants have different feeding patterns from formula-fed babies. Breast-fed babies at two months have the largest size of feed in the morning and the feed size decreases during the day. Bottle-fed babies tend to have constant-sized feeds and mothers may attempt to encourage the baby to finish the bottle. As night feeds are dropped, breast-fed babies go on to take larger feeds at the end of the day. Wright (1988) suggested that this is an example of anticipatory learning on the part of breast-fed infants. They have more control over the pace and duration of breast-feeding, and this may increase their expectations of mastery. The opportunity to learn (in the context of a biologically important behavior) is not available to formula-fed babies. They tend to be offered the same size of formula at each feed although appetite changes over the day, and mothers may well attempt to control the amount of milk consumed. 8.16.6.4.2 Breast-feeding and the mother Breast-feeding mothers feed more often and more often in the night than formula-feeding mothers (Elias, Nicolson, Brora, & Johnston, 1986; Romito, 1988). Although breast-feeding mothers may be more fatigued, less sexually active, and report more pain with intercourse, there appears to be no relationship with ratings of clinical depression (Paykel, Emms, Fletcher, & Rassaby, 1980). It is possible that the influence of breast-feeding on depression, whether hormonal or social, is small, that psychiatric diagnoses of depression do not identify postpartum distress, that there are too many confounding variables that protect breast-feeding mothers from depression, or that negative associations have suffered from reporting bias. Being depressed may affect the progress of breast-feeding. Tamminen (1989), in a crosssectional study in Finland, surveyed four groups of mothers: (group 1 in late pregnancy (n = 10), group 2 just after delivery (n = 17), group 3 with babies 2±4 months (n = 30), and group 4 with babies 6±12 months (n = 33). Most of the delivered mothers were currently breast-feeding (group 2, 90%, group 3, 97%, group 4, 50%). Eight percent of mothers were depressed and they reported more breast-feeding difficulties than nondepressed women. Successful breastfeeding can have a positive influence on their mood, whereas nonsuccessful breast-feeding may have a negative influence on mood. If breast-feeding and depression are interrelated then this could be an indirect route for the effect of breast-feeding on infant development.

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8.16.6.4.3 Breast-feeding and sexuality Breast-feeding mothers may be more fatigued and are less interested in sexual activity (Alder & Bancroft, 1988). Breast-feeding mothers, whose babies persisted in waking up for a night feed, took longer to resume sexual intercourse with their partners than those who slept through the night (Alder & Bancroft, 1988). There may be psychological differences between those who persist in breast-feeding for several months, those who never attempt breast-feeding, and those who begin breast-feeding in hospital, but discontinue when they go home. Some women may give up breast-feeding in order to resume an active sex life, because they are more sexually interested or feel the need to resume sexual activity for the sake of the relationship. Some women who discontinue may be inhibited about their bodies and dislike physical contact. The relationship between breast-feeding and sexuality has been investigated in a number of studies (Alder & Bancroft 1988; Alder, Cook, Davidson, West, & Bancroft, 1986), but it is a very complex issue (Alder, 1989). The effects of breast-feeding on sexuality could be a direct effect of endocrine changes on the central nervous system mediated in some way not yet understood. There has been little progress in establishing an endocrinological basis for changes in sexual interest, although Alder et al. (1986) found that lactating women with reduced sexual interest after delivery had lower testosterone levels than those with no reduction in interest. There could be a direct effect of the lowered level of circulating oestrogen on the vaginal epithelium, vaginal dryness, and possible effects of perineal pain could inhibit sexual intercourse. Alder et al. (1986) found that more perineal pain was reported in breast-feeding women. Fatigue may play a part. Breast-feeding women are more likely to have infants that wake in the night and they persist for longer. Glazener (1997) found that women who were breastfeeding were more likely to report a lack of interest in intercourse than those who were bottle feeding at eight weeks, but not at 12±18 months. This difference held even when controlled for tiredness and depression. 8.16.7 THE OLDER MAN AND WOMAN It may seem that reproductive events are only relevant to the reproductive years, but the impact of reproduction lasts well into old age. The age at which women are capable of bearing children has now been extended beyond the menopause. The age of birth of the first child may have increased in Western countries but

there is no evidence of a decline in parenting ability with age. Berryman (1991) concluded that older mothers were well adjusted and coped well with later childbearing. The menopause is discussed in Chapter 8.15, this volume. Men experience a gradual decline in androgen function in later life. There may be direct effects of endocrine changes on health conditions such as cardiovascular disease or prostrate hyperplasia, or indirectly on sexual function as part of the aging process. Osteoporosis in women is clearly related to decline in estrogen levels and there is a well-established relationship between bone mineral density and fractures. The social and psychological consequences of fractures in old age and consequent loss of mobility and independence pose a challenge to the health professions as the number of elderly increase as a proportion of the population. In men the increase in fractures rises in the late seventies, whereas for women there is a gradual rise following the menopause (Donaldson, Cook, & Thomson, 1990). There have been suggestions that estrogens and androgens, whose levels decline with age, influence cognitive functioning. Experimental studies show that estrogen and androgen therapy in women and testosterone treatment in men have cognitive effects (Christiansen, 1996; Sherwin, 1988).

8.16.8 PROFESSIONAL ISSUES Psychologists may be directly involved with reproductive issues in, for example, abortion counseling, or indirectly involved when the reproductive status of the man or woman is relevant to the presentation of the problem or its management. An understanding of basic reproductive physiology is fundamental to understanding the influence of reproductive and obstetric issues on psychological health. For instance, breast-feeding is controlled by a complex hormonal mechanism. In order to understand the changes that occur in mid-age it is necessary to understand the changes in the ovarian cycle that occur in the menopause. The practice of medicine is closely involved with reproductive issues, and pregnancy and childbirth may be the first occasion on which there is any lengthy contact with the medical profession. Medical intervention moves into the most intimate and private areas of people's lives. Direct medical intervention takes place during childbirth. Medical control over prescribing oral contraception may influence sexual behavior. Cervical screening and breast screening take place in a medical context but they have sexual and psychological implications.

References Much of the research interest in contraceptive use has come from clinicians concerned with infectious disease and the transmission of HIV infection (Chapter 8.15, this volume). However, the incidence of pregnancies in young teenagers has also focused attention on contraceptive use in young people. Health psychologists may be involved in planning interventions. Preparation for childbirth is widely practiced and relaxation techniques are learned by many women in antenatal classes. The environment of special baby units has been shown to influence the behavior of the babies and the stress on medical staff and parents can be modified by using principles of health psychology (Padden & Glenn, 1997). Social cognition models that are so widely used in health psychology have been applied to reproductive issues such as uptake of breast screening, contraceptive behavior, screening for genetic disorders, or prenatal diagnosis. General health issues may have special relevance in relation to obstetrics. Smoking and alcohol use in pregnancy may affect the health of the fetus. Health behaviors may be modified because of the reproductive context. Reasons why people do not exercise during pregnancy are different from reasons for not exercising in adolescence or old age. The concept of loss has been explored in studies of miscarriage and stillbirth. At a time when we expect to celebrate new life, it is particularly difficult to cope with loss and bereavement. The grief process will be influenced by the reproductive context. It has been suggested that couples with fertility problems may go through a grief process or mourning for the children they may never have. Reproductive issues have attracted attention from health psychologists although often in clinical contexts or in attempts to explain and predict health behavior. Broome and Wallace (1984) made an early attempt to address the inter-relationships of psychology and reproductive issues and Niven and Walker (1996) have taken a broad approach to psychological aspects of reproduction. The influence of reproduction continues throughout life and pervades all aspects of life. Psychologists, clinical and health, will benefit from considering its implications for health. 8.16.9 REFERENCES Abraham, S. C. S., & Sheeran, P. (1994). Modelling and modifying young heterosexual's HIV-preventive behaviour; a review of theories, findings and educational implications. Patient Education and Counselling, 23, 173±186. Adler, N. E., David, H. P., Major, B. N., Roth, S. H., Ruddo, N. F., & Wyatt, G. E. (1990). Psychological responses after abortion. Science, 248, 41±44.

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Evers-Kiebooms, G. (1988). Anxiety and conception rates in donor insemination. Journal of Psychosomatic Obstetrics and Gynaecology, 8, 175±181. Derogatis, L. R. (1977). The SCL-90-R manual. A step in the validation of a new self-report scale. British Journal of Psychiatry, 128, 280±290. Dimatteo, M. R., Lepper, H. S., Damush, T. M., Morton, S. C., Carney, M. F., Pearson, M., & Kahn, K. L. (1996). Cesarean childbirth and psychosocial outcomes a meta analysis. Health Psychology, 15, 303±314. Dimitrovsky, L., David-Fuchs, M., & Itskowitz, R. (1989). Self-acceptance and attitudes towards pregnancy and femininity among primiparae. Journal of Reproductive and Infant Psychology 7, 203±210. Donaldson, L. J., Cook, A., & Thomson, R. G. (1990). Incidence of fractures in a geographically defined population. Journal of Epidemiology and Community Health, 44, 241±245. Doyle, L. W., Rickards, A., Kelly, E. A., Ford, G. W., & Callanan, C. (1992). Breastfeeding and Intelligence. Lancet, 339, 744±745. Edelmann, R. J., & Connolly, K. J. (1996). Sex role and emotional functioning in infertile couples: Some further evidence. Journal of Reproductive and Infant Psychology, 14, 113±119. Edelmann, R. J. & Golombok, S. (1989). Stress and reproductive failure. Journal of Reproductive and Infant Psychology, 7, 79±93. Elias, M., Nicolson, N., Brora, C., & Johnston, J. (1986). Sleep/wake patterns of breastfed infants in the first 2 years of life. Pediatrics, 77, 322±329. Field, T., Healy, B., Goldstein, S., & Gutherz, M. (1990). Behavior-state matching and synchrony in mother infant interactions of non depressed versus depressed dyads. Developmental Psychology, 26, 7±14. Florey, C. du V., Leech, A. M., & Blackhall, A. (1995). Infant feeding and mental and motor development at 18 months of age in first born singletons. International Journal of Epidemiology, 24(Suppl.1), S21±S26. Foster, K., Lader, D., & Cheeseborough, S. (1997). Infant feeding 1995. London: The Stationery Office. Frohlich, E. P., Herz, C., van der Merwe, F. J., van Tonder, D. M., Booysen, J. P. M., & Becker, P. J. (1990). Sexuality during pregnancy and early puerperium and its perception by the pregnant and puerperal woman. Journal of Psychosomatic Obstetrics and Gynaecology, 11, 73±80. Friedman, T. (1989). Infertility and assisted reproduction. Bailliere's Clinical Obstetrics and Gynaecology, 3, 751±767. Friedman, T. (1989). The psychiatric consequences of spontaneous abortion. British Journal of Psychiatry, 146, 55±61. Galavotti, C., Cabral, R. J., Lansky, A., Grimely, D. M., Riley, G. E., & Prochaska, J. (1995). Validation of measures of condom use and other contraceptive use among women at high risk for HIV infection and unintended pregnancy. Health Psychology, 14, 570±578. George, J., Turner, J., Cooke, E., Hennessy, E., Savage, W., Julian, P., & Cochrane, R. (1994). Women's knowledge of emergency contraception. British Journal of General Practice, 44, 451±454. Glasier, A. (1993). Emergency contraception: Time for deregulation? British Journal of Obstetrics and Gynaecology, 100, 611±612. Glazener, C. M. A. (1997). Sexual function after childbirth: Women's experiences, persistent morbidity and lack of professional recognition. British Journal of Obstetrics and Gynaecology, 104, 330±335. Glazener, C. M. A., Abdalla, M., Stroud, P., Naji, S., Templeton, A., & Russell, I. T. (1995). Postnatal maternal morbidity; extent, causes, prevention and treatment. British Journal of Obstetrics and Gynaecology, 102, 282±287.

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Oddens, B. J., Visser, A. P., Vemer, H. M., Everaerd, W. T. A. M., & Lehert, P. (1994a). Contraceptive use and attitudes in Great Britian. Contraception, 49, 73±86. Oddens, B. J., Visser, A. P., Vemer, H. M. E., Everaerd, W. T. A. M. (1994b). Contraceptives and attitudes in reunified Germany. European Journal of Obstetrics and Gynaecology and Reproductive Biology, 57, 3201±3208. O'Hara, M. W., & Swain, A. M. (1996). Rates and risks of postpartum depression: A meta-analysis. International Review of Psychiatry, 8, 37±54. O'Hara, M. W., & Zekoski, E. M. (1988). Post partum depression: Causes and consequences, a comprehensive review. In R. Kumar & I. F. Brockington (Eds.), Motherhood and mental illness 2. London: Wright. O'Moore, M. A., & Harrison, R. F. (1991). Anxiety and reproductive failure: Experiences from a Dublin infertility clinic. The Irish Journal of Psychology, 12, 276±285. Padden, T., & Glenn, S. (1997). Maternal experiences of preterm birth and neonatal intensive care. Journal of Reproductive and Infant Psychology, 15, 121±139. Parkes, C. M. (1985). Bereavement. British Journal of Psychiatry, 146, 11±17. Paykel, E. S., Emms, E. M., Fletcher, J., & Rassaby, E. S. (1980). Life events and social support in puerperal depression. British Journal of Psychiatry, 136, 339±346. Pearlin, L. I., Mullen, J. T., Semple, S., & Skaff, M. B. (1990). Caregiving and the stress process: an overview of concepts and their measurement. The Gerontologist, 30, 583±594. Persky, V. W., Kempthornerawson, J., & Shekelle, R. B. (1987). Personality and risk of cancer 20-year follow up of the Western Electric study. Psychosomatic Medicine, 49, 435±449. Pfeffer, N., & Woollett, A. (1983). The experience of infertility. London: Virago. Pheonix, A. (1989). Influences on previous contraceptive use /non use in pregnant 16±19 year olds. Journal of Reproductive and Infant Psychology, 7, 211±225. Pop, V. J., de Rooy, H. A., Vader, H. L., et al. (1991). Postpartum thyroid dysfunction and depression in an unselected population. New England Journal of Medicine, 324, 1815±1816. Pop, V. J., de Vries, E., van Baar, A. L., Waelkens, J. J., deRooy, H. A., Horsten, M., Donkers, M. M., Komproe, I. H., van Son, M. M., & Vader, H. L. (1995). Maternal thyroid peroxidase antibodies during pregnancy: A marker of impaired child development? Journal of Clinical Endocrinology and Metabolism, 3561±3566. Potvin, L., Lasker, J., & Toedter, L. (1989). Measuring grief: A short version of the Perinatal Grief scale. Journal of Psychosomatic Behavioural Assessment, 11, 29±45. Power, M. (1997). Fertility problems. In G. Andrews (Ed.), Women's sexual health. London: Balliere Tindall. Prettyman, R. J., Cordle, C. J., & Cook, G. D. (1993). A three-month follow up of psychological morbidity after early miscarriage. British Journal of Medical Psychology, 66, 363±372. Prochaska, J. O., & DiClemente, C. C. (1984). The transtheoretical approach: Crossing traditional boundaries of change. Homewood, IL: Dow Jones Irwin. Raval, H., Slade, P., Buck, P., & Lieberman, B. E. (1987). The impact of infertility on emotions and the marital and sexual relationships. Journal of Reproductive and Infant Psychology, 5, 221±234. Reamy, K. J., & White, S. E. (1987). Sexuality in the puerperium: A review. Archives of Sexual Behavior, 16, 165±186. Riley, D. (1995). Perinatal mental health: A source book for health professionals. Oxford: Radcliffe Medical Press. Rimmer, C., Horga, M., Cerar, V., Alder, E. M., Baird, D. T., & Glasier A. (1992). Do women want a once-a-month pill. Human Reproduction, 7, 608±611. Robson, K. M., Brant, H. A., & Kumar, R. (1981).

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.17 Genetic Disorders HEIDI A. HAMANN and ROBERT T. CROYLE University of Utah, Salt Lake City, UT, USA 8.17.1 OVERVIEW OF GENETIC DISORDERS

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8.17.1.1 Biological View of Genetic Disorders 8.17.1.2 Age of Onset and Course of Genetic Disease 8.17.1.3 Symptoms, Prognosis, and Treatment 8.17.2 IMPACT OF THE CONDITION ON PERSON, FAMILY, AND SOCIETY 8.17.2.1 Intrapersonal, Family, and Public Reactions to the Individual with a Genetic Disease 8.17.2.1.1 Person 8.17.2.1.2 Family 8.17.2.1.3 Society 8.17.2.2 Reproductive Issues 8.17.3 PSYCHOLOGICAL ASPECTS OF GENETIC SCREENING AND TESTING

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8.17.3.1 Informed Consent and Protocol Procedures 8.17.3.2 Factors Influencing Participation in Testing 8.17.3.3 Genetic Screening 8.17.3.3.1 Newborn genetic screening 8.17.3.3.2 Prenatal genetic screening and testing 8.17.3.3.3 Carrier testing 8.17.3.4 Predictive Testing 8.17.3.4.1 Huntington's disease 8.17.3.4.2 Cancer susceptibility 8.17.4 PSYCHOLOGICAL INTERVENTIONS 8.17.4.1 8.17.4.2 8.17.4.3 8.17.4.4

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Support Groups Individual Therapy Family Therapy Psychological Intervention Within the Medical Setting

8.17.5 PROFESSIONAL ISSUES

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8.17.5.1 Role of the Genetic Counselor 8.17.5.2 Role of the Psychologist 8.17.6 CONCLUSIONS

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8.17.7 REFERENCES

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person's hereditary information (Thompson, McInnes, & Willard, 1991). Although the term genetic disorder can be defined in a variety of ways, the labels genetic disorder and genetic disease are used here to refer to hereditary conditions that usually (but not always) pose unusual physical or psychological challenges for an individual's quality or duration of life. This

8.17.1 OVERVIEW OF GENETIC DISORDERS This chapter focuses on the psychological aspects of a specific type of chronic illness: genetic disorders. The label ªgenetic disorderº describes a heterogeneous group of conditions that are at least partially caused by changes in a 409

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definition intends to capture some common psychological themes associated with these disorders while respecting the fact that each person's interpretation of his or her genetic status can be extremely variable. Genes are the specific units of hereditary information found in almost every cell of the body, and are carried on structures known as chromosomes (Mange & Mange, 1990). In a genetic disease, either specific genes are changed (mutated) or there is extra or missing chromosomal material (Thompson et al., 1991). Genetic disorders pose unique demands for the medical practitioner, including the need to assess genetic risk and to inform patients about genetic testing. However, the issue of hereditary transmission in genetic disorders not only raises medical concerns, it also raises important psychological concerns. This chapter focuses on the predominant psychological issues in genetic disease and on the very timely topic of psychological issues in genetic testing.

8.17.1.1 Biological View of Genetic Disorders Before psychologists can understand the psychological sequelae of genetic disease, it is important that they have basic knowledge about the mechanism of transmission. In reproduction, genes are passed from parents to offspring; therefore, children inherit half of their genetic material from their mothers and half from their fathers (Nora, 1994). Accordingly, a person with a disease-causing gene mutation may pass that mutation to their children. Some gene mutations, however, occur in an individual without being found in either of the individual's parents; in this case, the disease-causing mutation usually occurred in either the sperm or egg of a parent. For example, in Down's syndrome, a mistake in chromosome replication in the sperm or egg cell causes an individual to have extra chromosomal material, even if both parents had normal numbers of chromosomes (Korf, 1996). Therefore, a disease does not necessarily need to be inherited from a parent in order to be classified as genetic. This means that there are two ways to contract a genetic disease: disease-contributing mutations or chromosome aberrations may either be passed from a parent (inherited) or formed newly in that individual (de novo). However, once a gene is mutated or chromosome material is added or subtracted, and this genetic change exists in the reproductive cells of an individual, there is the possibility the genetic change may be passed on to future offspring (Harper, 1993). It is a popular, but misguided, perception that every genetic disorder is caused by a single gene

acting in isolation. Although it is true that some genetic disorders are influenced by mutations in one gene (single-gene disorders), many others are influenced by mutations in many genes (polygenic disorders). Furthermore, the expression and severity of all genetic disorders are mediated by the environment in some manner, be it nutrition, toxins, the prenatal environment, or the gene's own cellular environment. Diseases that have a combination of genetic and environmental components are often termed multifactorial conditions (Harper, 1993). 8.17.1.2 Age of Onset and Course of Genetic Disease Although many genetic conditions have similar biological etiologies and mechanisms of inheritance, the age of onset and course of the conditions are very diverse. In Down's syndrome, the physical manifestations of downslanting eyes, epicanthal eye folds, and low-set ears are usually apparent at birth (Thompson et al., 1991). However, in neurofibromatosis type 1, the characteristic cafe au lait spots on the skin may not be present until early childhood (Viskochil, 1995). Adult onset is a feature of Huntington's disease, a disease in which many affected individuals first exhibit jerky, uncoordinated movements between the ages of 30 and 50 years (Huntington Society of Canada, 1993). Considerable variability in age of onset and disease course characterizes many of the heritable adult cancer syndromes. For example, some women with a mutation in the BRCA1 gene contract breast or ovarian cancer in their early 30s, whereas others are not affected until their 70s. Some BRCA1 mutation carriers will never contract cancer. Even among those who carry the same cancer susceptibility mutation and contract cancer, the course of the disease can vary substantially (Gould, 1997). 8.17.1.3 Symptoms, Prognosis, and Treatment As with the age of onset and course of disease, information about symptoms, prognosis, and treatments also differ depending upon the specific condition. Many genetic disorders are associated with varying degrees of mental retardation, although some are associated with normal levels of intelligence. Some genetic disorders carry physically distinguishing features, but others may not be apparent to the casual observer. Almost all genetic disorders shorten a person's life span, but they do so in varying degrees. Whereas individuals with achondroplasia (a form of dwarfism) may have long, relatively healthy lives into late adulthood,

Impact of the Condition on Person, Family, and Society infants with a chromosomal disorder called trisomy 13 have such severe malformations that most die within the first year of life (Thompson et al., 1991). New treatments, however, promise to improve the prognosis and quality of life for many individuals with genetic disorders. For example, new respiratory drugs for cystic fibrosis have lengthened the average life span from less than 20 years to over 30 years (ASHG, 1992). Unfortunately, medical treatments can be costly, time-consuming, and sometimes painful. Because there are no cures for most genetic conditions, once a treatment or surveillance program is initiated it is usually continued for life. Therefore, compliance and adherence to medical follow-up and treatment are significant issues for an individual with a genetic disorder. 8.17.2 IMPACT OF THE CONDITION ON PERSON, FAMILY, AND SOCIETY There is a wide range of psychological issues that may be associated with having a genetic predisposition or condition. Many of the issues are similar to those found in people with other chronic illnesses. However, the hereditary etiology of most genetic disorders creates unique psychological issues rarely encountered in persons with nongenetic chronic illnesses. This section focuses on the psychological issues that may be especially salient, or completely unique, among people affected by genetic conditions. 8.17.2.1 Intrapersonal, Family, and Public Reactions to the Individual with a Genetic Disease 8.17.2.1.1 Person A genetic disorder can have critical effects on an individual's self-perception and self-esteem (Kessler, 1979). For most people, health is considered an integral part of the self. Therefore, when one has a chronic illness, it can severely threaten the integrity of the self. One way that individuals attempt to maintain the self concept in the face of disease is by projecting the illness externally (Shapiro, 1983). Distancing the self from the illness facilitates the maintenance of the self concept, because the disease is viewed as ego-alien, an enemy to be conquered (Kessler, 1979). For individuals with genetic disorders, however, it may prove extremely difficult to project the genetic disorder outward and distance the self from it. Genetic disease is at least partially caused internally, and the disease-causing enemy is literally one's own genetic material in every cell of the body. As a result, the self concept of a person with a genetic disorder may

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be intrinsically bound with the view of the disorder (Kessler, 1979). This inability to distance the self from a negatively viewed disorder may affect self-esteem, leading to feelings of unworthiness. Individuals may feel that since their genes are defective, they are defective as well (Weiss, 1981). Furthermore, since most disease-causing genetic changes are present from birth and are permanent, this feeling of defectiveness may continue throughout a person's lifetime (Schild & Black, 1984). 8.17.2.1.2 Family Genetic disorders are unique in the fact that every individual diagnosis becomes a family diagnosis. After the diagnosis of a genetic disorder in one individual, family members may discover that they themselves are mildly affected by the disorder, are at risk of developing it, and/ or may potentially pass it to their offspring (Schild & Black, 1984). The family diagnosis can have a significant impact on family relationships and communication. One parent may blame the other for carrying a gene that has adversely affected their children. Siblings may compare their genetic status with each other and attach values of worth to each other as a result of their status. Traditional family roles may be radically altered as one or more individuals give up or take on new responsibilities to compensate for the presence of the genetic disorder in other family members (Weiss, 1981). Another familial issue unique to genetic disease involves the transmission of information about the condition between family members. Not only is there biological inheritance of a genetic condition, there is also a kind of psychological inheritance attached to it. Just as a disease-related gene may be passed from parent to child, representations of the disease and its consequences may be inherited too. This type of psychological inheritance uniquely colors and shapes a person's experience with the condition (Cullinan, 1989). In one family, a member with achondroplasia may be shunned and considered someone of whom to be ashamed. Family members with the condition may be encouraged to integrate into the taller culture as much as possible and not share details of their condition with others. They are stigmatized and marginalized within their own families, and the condition, in effect, becomes a sort of family secret. In another family the condition may be seen as completely normal and worthy of frank discussion. Because family attitudes toward the genetic condition play a critical role in psychological adjustment, clinicians should always explore and discuss these beliefs with their clients.

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Since more than one individual in a family is often affected with a given condition, the burden of care for the rest of the family becomes greater than usual. Some parents may find themselves caring for two sons with Duchenne muscular dystrophy, a progressive muscle weakening disease, at one time. A woman at risk of a predisposing breast cancer gene mutation may be the primary caretaker for her mother and sister, both stricken with breast cancer. As if being a caregiver to multiple persons within the family were not difficult enough, individuals who are not affected can experience survivor guilt. The sense of relief over being spared of the disease can be experienced as a secret not to be shared with affected relatives. This ambivalence has been reported, for example, by individuals who test negative for Huntington's disease when a sibling tests positive (Tibben et al., 1994), and a similar dilemma may occur among unaffected members of families with inherited cancer syndromes (Baty et al., 1997). 8.17.2.1.3 Society Societal reactions to the person with a genetic disorder may be stigmatizing. Because many genetic conditions have physical or behavioral manifestations, the affected individual is often quite noticeable to others. Furthermore, since most genetic conditions are relatively rare, the lay public is often unfamiliar with and unaccustomed to seeing affected individuals. The combination of these two factors can lead people to stare at, laugh at, marginalize, and shun an individual with a genetic disorder. For individuals with neurofibromatosis type 1, the physical features of pigmented cafe au lait spots and raised neurofibromas seem unusual and unsightly to others when seen for the first time. Individuals with physically stigmatizing genetic disorders may already have issues of insecurity and feelings of unattractiveness with which to deal, so the public's tendency to turn away, laugh, or make cruel and hurtful remarks can exacerbate these issues substantially (Lynch, Lynch, & Lynch, 1979). When affected individuals enter the initial stages of their disease, public recognition of the changes can be especially hurtful. For example, a middle-aged person who is entering the initial stages of Huntington's disease often shows uncontrollable jerky movements. These symptoms can be troubling and embarrassing for the individual, not only because of their public impact, but also because each movement symbolizes to the individual that he or she has an incurable degenerative disease (Wexler, 1979). Unaffected family members also experience shame from public

stigmatization. Some parents of newborns with Down's syndrome report that not only do they have to deal with conflicting emotions about their newborn baby, they must continuously deal with others' insensitive reactions (Kelly, 1977). Some people simply avoid public situations in order to avoid scrutiny.

8.17.2.2 Reproductive Issues For many parents of a chronically ill child, guilt is a common emotion. In the face of a seemingly unexplainable eventÐan innocent child struck with a serious illnessÐparents often stop to wonder if their actions somehow caused the disease. In the context of genetic disorders, guilt and shame regarding inheritance are extremely common and sometimes debilitating emotions (Kessler, 1979). Some parents feel guilty for passing defective genes to their children, even after it is explained to them that the process was determined by chance. Others see the condition as a challenge from God to test their faith and perseverance (Kushner, 1981). An individual with a genetic condition may experience mixed emotions about the chance that his or her child will be affected. On the one hand, a person with a genetic condition does not want their children to experience a disease that will disadvantage them; on the other hand, the condition may be deeply integrated into the parent's concept of self and family. As a result, it is not uncommon for deaf parents to express some relief when they learn that their newborn is deaf as well (Harper, 1993). Even when neither parent is affected and the disease is unexpected, a genetic disease can stimulate guilt and shame in parents. The tendency for ill individuals to search for the causes of their disease is magnified in genetic disease, parents will often blame themselves as the cause of the disorder (Kelly, 1977). Some women analyze their entire pregnancies, chastising themselves for a single glass of wine or a few cigarettes. Despite a clinician's careful explanation that de novo mutations and chromosome aberrations are almost always caused by chance, parents may continue to believe in self-causation. Among expectant parents, some degree of fear concerning the possibility of health problems is common. For people who know that a child is at increased risk of a genetic disorder, this fear may be overwhelming (Kessler, 1979). Normally enjoyable events such as ultrasounds and fetal heartbeat checks become agonizing indicators of the baby's status. For some diseases it is possible to screen or test prenatally, and as explained further in Section 8.17.3 the

Psychological Aspects of Genetic Screening and Testing decision-making process and the waiting periods can cause significant distress for some people (Marteau, 1992). Many genetic conditions carry with them an increased risk of infertility (Harper, 1993), and this fact may also complicate attitudes about childbearing. When a person is infertile it can significantly affect that person's self-concept and self-esteem. For persons affected with a genetic condition who already have conflicting attitudes toward child bearing, they may see it as a message that they should not have children and think more negatively about themselves. Some individuals may never have been told by their health care professional about the possibility of infertility, because the health care professional made the erroneous assumption that childbearing would never be an issue. In and of itself, infertility can be a significant stressor to an individual. However, when the phenomenon of genetic disease is added, these effects can be exacerbated. Even for parents who made a well-informed decision to proceed with a high-risk pregnancy, and are able to reconcile their own feelings of guilt, the responses of others may create shameful feelings (Weiss & Mackta, 1996). Family members, friends, or even complete strangers may make comments such as ªHow can you bring children into this world knowing they will be at such a disadvantage?º For persons themselves affected with a genetic disease, such public pressure to forego childbearing may also deeply undermine their own feelings of self-worth. To the person with an integrated sense of disease and person, a public denouncement of the condition is also perceived as a denouncement of the person, a very personal form of eugenics. In contrast, within some communities of people with a high prevalence of genetic conditions, there may be pressure to have children in order to keep the ranks strong. The religious and cultural context of reproductive decisions can further complicate the ability of parents to make decisions that balance needs for autonomy and social acceptance (Punales-Morejon & Penchaszadeh, 1992).

8.17.3 PSYCHOLOGICAL ASPECTS OF GENETIC SCREENING AND TESTING Recent advances in human genetics and molecular biology have allowed the identification of a rapidly increasing number of diseasesusceptibility genes and the development of tests to detect the presence of mutations in these genes. These developments allow genetic coun-

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selors and medical geneticists to provide genetic information to allow informed decision-making about reproductive issues, risk modification, and disease management. Different screening programs and testing protocols have been developed in an attempt to systematize the dissemination of genetic information. The emerging abundance of genetic screening and testing programs has prompted studies on the psychological impact of genetic screening and testing. Although this body of literature is growing, much of this research is in its infancy. This section focuses on research that explores the psychological impact of testing and the psychological sequelae associated with learning one's genetic risk of a given disease. In addition, psychological issues important for further research and clinical intervention are outlined.

8.17.3.1 Informed Consent and Protocol Procedures Screening for some genetic conditions, such as phenylketonuria (PKU), is performed through a blood test in many newborns. Although sometimes refused, it is considered fairly routine, and often involves a short informed consent procedure (Natowicz & Alper, 1991). However, genetic testing for other genetic conditions often involves a lengthy informed consent procedure. A person following the accepted protocol for Huntington's disease testing, for example, will have an initial information appointment with a genetic counselor and/or medical geneticist, an appointment with a neurologist to rule out any signs of the disorder, an appointment with a mental health professional to discuss any psychological issues that may effect testing, an appointment for the blood draw, a follow-up appointment to learn the results, and periodic follow-ups with various physicians depending upon the test results (University of Michigan Medical Center, 1994). The informed consent standards for most genetic conditions are rigorous because there is a great deal for patients to consider before getting tested, including possible psychological effects and insurance risks (Geller et al., 1997). Newly developed tests are often performed under the umbrella of a research protocol. Even when tests are offered clinically, there should be a well-defined protocol and a thorough informed consent and patient education process. In both research and clinical situations, the informed consent and patient education protocol may include multiple visits before testing is actually performed. Despite the endorsement of these standards by many relevant professional organizations, recent evaluations of clinical genetic testing

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suggest that many physicians do not comply with them (Giardiello et al., 1997).

8.17.3.2 Factors Influencing Participation in Testing How does an individual decide whether or not to get tested for a disease-susceptibility mutation? This question is one that psychologists have been interested in since genetic testing first became available. Initial surveys of people at risk of various genetic diseases and of the population at large showed that the majority of individuals in both groups indicated interest in genetic testing. However, as more genetic tests have become available, studies have shown that a much lower percentage actually utilize testing. One example of this phenomenon is illustrated by experiences with Huntington's disease (HD) testing. As predictive tests for HD became available in the late 1980s, researchers surveyed at-risk individuals to see whether they may be interested in testing. Various studies showed that on average, approximately 70% of respondents indicated that they would take a predictive HD test if it were available (Kessler, Field, Worth, & Mosbarger, 1987; Markel, Young, & Penney, 1987; Mastromauro, Myers, & Berkman, 1987). However, in the 5±7 years following the initial availability of predictive HD testing, only about 25% of the at-risk population had been tested (Quaid, 1997; Tyler, Ball, & Crawford, 1992). When asked why they did not seek testing, at-risk individuals indicated that the desire to avoid threatening information was the most important reason for not seeking testing (Quaid & Morris, 1993). Interestingly enough, in this study the burdensome nature of the test was listed as the least important reason not to be tested. Therefore, it is not test complexity barriers that prevents people from being tested; instead, the motivations to forego testing often involve the desire to avoid potentially negative news. It seems that once people are faced with the reality of actual testing, they may reevaluate their initial interest in the test. Research on predicted vs. actual uptake for other genetic conditions have not shown such dramatic results as that for HD. For prenatal genetic testing, there appears to be a stronger link between attitudes and behaviors (Croyle & Lerman, 1995). This phenomenon can be explained in that pregnancy has a strict time course so the option of postponing prenatal testing is not available. In prenatal situations people do not have time to ruminate about the possibility of negative news. In addition, although HD has no effective treatment, for

some people pregnancy termination is a viable option for dealing with a positive test result. These individuals may therefore be more motivated to seek testing, because they foresee a possible alternative should a test result indicate that a fetus has a known genetic mutation. In other arenas, such as breast and ovarian cancer susceptibility, tests have been in existence for a relatively short amount of time, so it is not possible to determine the rate of uptake in the general population. However, initial reports regarding known at-risk individuals have shown greater uptake of testing than in HD (Croyle, Smith, Botkin, Baty, & Nash, 1997; Lerman et al., 1996; Patenaude et al., 1996). Croyle et al. (1997) reported that of the first 213 study respondents, 84% expressed interest in participating in BRCA1 testing. Lerman et al. (1996) found that 60% of participants who completed the baseline interview were tested for BRCA1 and requested their test results. They also reported that the number of first-degree relatives with breast cancer, baseline knowledge, and perceived importance of the test were all positively related to utilization of testing. Qualitative data reported by many of the same investigators indicated that concerns about risks to children and concern about surveillance and prevention also were important reasons for being tested (Lynch et al., 1997). This suggests that the more people perceive that prevention and treatment for the disease is possible, the more motivated they will be to seek testing. 8.17.3.3 Genetic Screening 8.17.3.3.1 Newborn genetic screening Newborn screening for such conditions as PKU is the most common and most established type of genetic screening (Thompson et al., 1991). In many states of the USA these screens are performed on every newborn. Very little has been written about the psychological effects of routine newborn screening, perhaps because it is perceived to cause few stress-provoking responses for parents. Many parents are not even aware that these screening procedures are performed and are relieved to know that there are no detected problems. Obviously the news can be traumatic for those who discover through routine newborn screening that their child has a rare genetic disorder. They may feel shocked, frightened, and surprised. However, it is thought that the test procedure itself is usually not associated with significant distress, and since most parents do not even realize what is being tested for, pretest anxiety is seldom an issue.

Psychological Aspects of Genetic Screening and Testing 8.17.3.3.2 Prenatal genetic screening and testing Other types of screening are performed by taking a maternal blood sample in pregnancy and checking the levels of maternal serum afetoprotein (MSAFP). Fetuses of women with high or low MSAFP results are considered at increased risk of chromosome abnormalities or neural tube defects, depending upon the MSAFP level (Harper, 1993; Merkatz, Nitowski, Macri, & Johnson, 1984). Women with abnormal MSAFP results are often offered ultrasound and/or amniocentesis (Green & Statham, 1996). Ultrasound is a noninvasive technique used to visualize fetal structures, whereas amniocentesis is an invasive technique used to directly test the fetal chromosomes and fetal AFP level (Harper, 1993). In amniocentesis, a needle is inserted into the abdomen and a small amount of the amniotic fluid is withdrawn. This procedure is usually done after 14 weeks gestation. An amniocentesis has a small risk of miscarriage, usually from 0.25% to 1%, with rates differing from center to center (Medical Research Council Working Party on Amniocentesis, 1976; Tabor, Madsen, Obel, Philip, Bang, & Norgard-Peterson, 1986; United States Institute of Child Health and Human Development Study Group, 1976). As women get older they have increased risks for having fetuses with chromosome abnormalities. Thus, many women over a certain age (usually 35) are offered amniocentesis or another type of prenatal testing called chorionic villus sampling (CVS). CVS is a procedure usually performed at 10±13 weeks gestation, in which, depending on the chorionic position, a catheter is inserted into the vagina or a needle is inserted into the abdomen and a small sample of the chorion is withdrawn. Unlike amniocentesis which detects both chromosome abnormalities and fetal AFP levels, CVS detects only chromosome abnormalities (Thompson et al., 1991). At 0.5±1%, the risk of miscarriage with CVS is also slightly higher than the risk of amniocentesis (Brambati, Lanzani, & Tului, 1990; Canadian Collaborative CVS±Amniocentesis Clinical Trial Group, 1989). Studies have shown that women with abnormal MSAFP results tend to show increased anxiety after learning their results (Robinson, Hibbard, & Lawrence, 1984). Although some studies have shown that this anxiety was maintained even after amniocentesis showed a definitive normal result (Marteau et al., 1988), others have found that this level of anxiety tended to decrease when amniocentesis showed a definitive normal result (Tabor & Jonsson, 1987). Most studies following women over 35 who have amniocenteses show that, although

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anxiety was high before and immediately following the amniocentesis, it dropped significantly once normal test results were learned (Croyle & Lerman, 1995). Coping styles can also influence a woman's reaction to prenatal testing. Women who tend to cope by monitoring or seeking information have been shown to have higher levels of distress prior to screening, immediately after screening, and after receipt of results, than those who tend to avoid information (Phipps & Zinn, 1986). Thus, although the thoughts of having an amniocentesis can be troubling, for most women good news from it will significantly reduce their anxiety. Most studies have not shown evidence to support the notion that prenatal screening causes significant distress. Many studies that explored the psychological effects of prenatal screening involved cases in which the fetus was at low risk and the majority of results were normal. For individuals who discover through prenatal testing that a fetus is affected with a genetic disease, the distress is often overwhelming. Once faced with this dilemma, they must decide whether to continue with the pregnancy or terminate it (Green & Statham, 1996). For women who decide to continue it, they go through the pregnancy knowing that the fetus is affected, and often view their pregnancy as different than most, because they must plan for a life with a disabled child. The stress, immediately acute, can turn into an underlying chronic strain of anticipation for this known, but unchangeable event. However, when the child is born these parents are more prepared for the event and may be able to cope with it more effectively. Those individuals who plan to terminate the pregnancy are also faced with stressors. Termination of a fetus because of a genetic disease is situationally and psychologically unique from other types of fetal losses. It is unlike an elective termination in the fact that the pregnancy was very much wanted. However, it is also distinct from a miscarriage or stillbirth because there was some element of choice involved in the process (Jorgensen, Uddenberg, & Ursing; 1985). A woman who discovers through amniocentesis that her fetus has a genetic disorder may be over 20 weeks gestation when she receives the news. If she decides to terminate the pregnancy she will most likely have to go through a lengthy, and possibly distressing, induced delivery. At this time she will also be showing her pregnancy and will have to explain her situation to others. Couples who terminate a pregnancy after finding out that it has a genetic condition may tell others it was a miscarriage rather than explain the true situation. This secrecy about the situation can cause or exacerbate intense feelings of shame and

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guilt. These couples also face mourning and grief over the loss of a wanted pregnancy (Blumberg, Golbus, & Hanson, 1975; Green & Statham, 1996). Furthermore, they may have fears about the possible recurrence of the event and face future childbearing with fear and indecision. In fact, studies have shown that of those women contemplating amniocenteses, women with previous chromosome abnormalities had significantly higher levels of distress than others (Beeson & Golbus, 1979). 8.17.3.3.3 Carrier testing For some recessive conditions it is possible that an individual may not be affected with a condition but could be a carrier of it. In these cases, the child of two carrier parents is at risk of a given genetic disorder even though neither of the individuals has the disorder. Individuals from ethnic groups known to have higher susceptibilities to certain recessive conditions, such as sickle cell anemia, Tay±Sachs or cystic fibrosis (CF), or who have an affected relative, can have carrier testing (Thompson et al., 1991). Some carriers may deal with increased concern about childbearing, along with concerns about self-esteem and self-worth after they discover their genetic status (Massarick & Koback, 1981). Research focusing on carrier screening programs for CF in the UK has shown that carriers show small increases in anxiety after testing but do not appear to have concerns after 6 months (Watson, Mayall, Lamb, Chapple, & Williamson, 1992). Other studies have shown that most individuals appreciate finding out their carrier status and tend not to stigmatize themselves (Childs, Gordis, Kaback, & Kazazian, 1976). Therefore, although carrier testing may produce negative effects for some, for other individuals it seems to be a relief-provoking experience that creates the perception of increased control over reproductive decisionmaking. 8.17.3.4 Predictive Testing Predictive testing is the newest addition to the realm of genetic testing and screening, and has many potential psychological issues associated with it. Predictive testing differs from other types of genetic testing in that the purpose is to find one's risk of developing a genetic disease later in life as opposed to discovering the status of one's progeny. Predictive testing can also indirectly provide information about one's children and one's parents. Thus, for some, conflict arises if some family members wish to be tested while others do not.

8.17.3.4.1 Huntington's disease The first research that explored potential psychological effects of predictive testing came in the realm of HD testing. HD testing is discussed in some depth because it is one of the most thoroughly studied contexts for genetic testing. HD is a late-onset, progressive neurological disease with no effective treatment or cure. It is a rare condition, but those individuals with an affected parent are at 50% risk of having the gene mutation and developing the disease. Virtually everyone with the gene mutation will develop the disease at some point in their lives, although the age of onset is variable (Huntington Society of Canada, 1993). When testing for HD was first initiated, the HD gene had not been isolated, but the area around the gene on the chromosome had been delineated enough for the test to be done through a technique called linkage (Gusella et al., 1983). The important aspect of this type of test is that several family members are required to give blood samples in order to compare chromosome regions between affected and unaffected individuals, and these linkage methods are not 100% accurate. In the early 1990s the gene was isolated. (Huntington's Disease Collaborative Research Group, 1993). and a predictive test was developed that was able to directly determine whether an individual had a mutation without requiring the blood of the individual's family members. In addition, this test increased the accuracy of prediction to over 99% (Huntington Society of Canada, 1993). When a linkage test for HD first became available, there was fear about the potentially devastating effects of discovering that one was a gene carrier. Many were concerned that when people found themselves to be gene carriers the risk of severe depression and suicide would be overwhelming. The concern was justified, as suicide rates in people diagnosed with HD are four times that of the general population (Farrer, 1986) and in one study 29% of the respondents, all of whom were at 50% risk of HD, indicated that they would have suicidal ideations should they test positive for the condition (Mastromauro et al., 1987). In 1986 researchers in British Columbia initiated a pilot study designed to track those who decided to be tested for the HD gene mutation. In this protocol, and subsequent others, individuals who desired testing went through intensive information sessions about HD. In addition, these participants were given a battery of psychological measures before genetic testing, immediately following testing, and during subsequent follow-ups. The pretesting found that those who initially registered for

Psychological Aspects of Genetic Screening and Testing testing were not psychologically different from the population at large (Bloch, Fahy, Fox, & Hayden, 1989). However, it was thought that these early self-selected participants may have better overall adjustment than others at risk of the disease. In a different study, Codori, Hanson, and Brandt (1994) found that a greater number of test-decliners than test-acceptors list the fear of emotional reactions as a significant factor in the decision-making process. They concluded that people who choose testing are psychologically self-selected for better adjustment. British Columbia researchers also found that 33% of their subjects indicated that they would consider suicide had they a positive result (Bloch et al., 1989). One of the 51 participants was found to have early signs of HD and had a severe suicidal reaction (Lam et al., 1988). A more comprehensive report of the British Columbia data reported that in the 7±10 day follow-up, individuals who tested at increased risk for HD showed increased levels of distress, whereas individuals who tested at decreased risk had decreased levels of distress. However, these distress differences decreased after 6 months, and after 12 months the two groups did not differ significantly in their distress levels. Furthermore, after 12 months both groups showed significant drops in their distress levels (Wiggins et al., 1992). Therefore, it appears that in this pilot group, individuals who tested at increased risk for the gene mutation experienced initial distress immediately after finding out their test results, but within a year were able to deal with the news and integrate it into their lives. This finding has held in subsequent studies of individuals with an identified HD gene mutation, indicating that in general, the news of a positive carrier status, although upsetting in the short term, does not appear to have longterm distressing effects for most participants. One important point is that in all of these studies, individuals who decide to be tested undergo intensive genetic information sessions, are given strategies to deal with potential negative emotional reactions, undergo initial psychological evaluation, and receive follow-up medical and psychological care. These services have been viewed as beneficial not only by the health care professionals, but also by the HD community in general. In fact, when HD testing became available on a wider basis, it was the Huntington's Disease Society of America, an organization made up of primarily HD carriers and family members, that recommended a structured protocol for those who desired to be tested (Huntington's Disease Society of America, 1994). There are certain sites in the USA that offer HD testing through this protocol, which includes initial genetic counsel-

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ing, a neurological evaluation, and a psychological evaluation, before anyone can proceed with testing (University of Michigan Medical Center, 1994). Studies of people after testing indicate that most are glad they had the opportunity to learn what they did through the protocol, and studies of individuals who decline testing indicate that the burden of the procedure is an infrequently endorsed reason for not getting tested (Quaid & Morris, 1993). In the British Columbia study, plus other subsequent studies, one surprising result was the long-term reaction of individuals who tested negative for a mutation in the HD gene. On average, these individuals experienced shortterm relief, demonstrated by decreases in measures of distress and depression. However, after the initial euphoria, most of these individuals returned to normal levels of distress and some even experienced increased levels of distress in the long term. These individuals had to readjust their life plans and views to include life without the disease. Many had lived their lives under the assumption that they would develop HD, and now had to redefine themselves to include longer, healthier lives. For some of these individuals there was also the phenomenon of survivor guilt with which to deal. Some had seen their siblings test positive while they tested negative, and had to face the guilt of the ªWhy not me?º question. For some, too, they felt unable to express the joy that they felt to their families because other members had tested positive. In a study by Huggins et al. (1992), it was reported that approximately 10% of those individuals who received test results indicating a decreased HD risk needed additional counseling to help them cope with their status. Another interesting feature of the British Columbia study was that individuals who did not find out their HD status, either because they chose not to take the test or had uninformative tests through linkage analysis, were the people who fared the worst psychologically (Wiggins et al., 1992). This result suggests that the uncertainty reduction provided by the test, regardless of the results themselves, lends some psychological benefit. People who choose not to get tested may have problems reconciling their decision with the life of uncertainty that they face, whereas people who follow through with testing and who are then unable to get results feel frustrated. These people committed to a hard decision, but were unfulfilled by any indication of certainty. Since the initial studies, others have filled in some of the gaps about who does well, who does poorly, and why they do so after testing. Tibben et al. (1993) found that carriers showed more intrusive thoughts than noncarriers without

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showing increased levels of overt hopelessness. The researchers attributed this finding to possible minimization or denial of problems. This finding shows that on the surface, carriers may appear to be adjusting well but there is a possibility of underlying distress. They also found that certain individual differences were important in reactions to test results. The more intrusive HD-related feelings and avoidance of HD-related situations before testing, the greater the chance of these feelings being there 6 months after testing for individuals who tested positive. They also found that individuals who avoided HD-related situations at pretesting were more likely to do so after testing, and that pessimistic individuals were more likely to avoid HDrelated situations, be dissatisfied with their social support, and become depressive or suicidal after testing (Tibben et al., 1993). Bloch, Adam, Wiggins, Huggins, and Hayden (1992) found that psychological preparedness was an important component of psychological reactions. Those who had prepared themselves psychologically for potential bad news seemed more ready to cope with the information. In addition, those who sought out social support did better than those who isolated themselves. Other studies have explored the reactions of family members, including spouses, to the results. Quaid and Wesson (1995) found that prior to testing, spouses of at-risk individuals were significantly more depressed than their partners. Furthermore, couples in which one individual was found to be at increased risk of HD had higher measures of distress at 3 and 6 month follow-ups than their lower-risk counterparts (Quaid and Wesson, 1995). The HD findings support the need for psychosocial resources for those who are contemplating HD testing. Psychological baseline measures and initial psychological interviews help to identify people who may not have the psychological resources at that time to deal with discovering their status. Some have argued that the use of these baseline measures and interviews are paternalistic and should not be used to screen out people (Wilke, 1995). However, as described previously, research has shown that they can be helpful indicators (Bloch et al., 1989; Huggins et al., 1992; Lam et al., 1988). It is our opinion that psychological measures and interviews should be used responsibly and not function to abandon unsuitable research subjects. If questionnaires or interviews indicate that an individual has high levels of distress or insufficient coping resources, then counseling should be offered to help the individual deal with the distress and possibly obtain the coping skills needed to deal with a test result. Furthermore, the presence of mental

illness at a previous point in one's life should not necessarily preclude one from getting testing. In the past, individuals who have been previously diagnosed with psychiatric disorders, but have since been treated, have been allowed to proceed with testing (Quaid, 1992). Psychological resources are also important for the individuals after testing in order to help them cope with unexpected results, circumstances, and emotions. The need for this support is often underestimated by physicians. As indicated by research, even individuals with a negative result may require additional counseling (Huggins et al., 1992). Furthermore, psychological intervention is important for spouses, children, and other relatives of those tested. They may be the people most overlooked in these situations, but are the people left as caretakers and left to mourn after the affected person dies (Kessler, 1993). 8.17.3.4.2 Cancer susceptibility One of the largest efforts in genetic research since the mid-1980s has focused on identifying gene mutations that predispose individuals to certain types of cancer. Many of these cancers, such as Li±Fraumeni syndrome, retinoblastomatous, and Wilms' tumor, are quite rare. However, in recent years, predisposing genes to more common types of cancer have been identified. Two broad categories of cancers that have drawn attention are colon cancer and breast cancer. Hereditary colon cancer comes in two main forms: an early childhood-onset (familial adenomatous polyposis), and a more common teenage-to adult-onset hereditary nonpolyposis colon cancer (HNPCC). There are multiple genes and multiple mutations known to contribute to HNPCC, but there are also families with clearly hereditary colon cancer in which no known mutations have been found, so it is thought that other unknown genes and/or mutations play a role in colon cancer (Croyle & Lerman, 1993; Vernon et al., 1997). For years, clinicians had noted that breast and/or ovarian cancers appeared to run in families. It has been estimated that 6±19% of all cases of breast cancer can be attributed to a family history of the disease (Colditz et al., 1993; Slatery & Kerber, 1993). In 1994, the BRCA1 gene was identified; mutations in this gene predispose women to breast and ovarian cancer (Miki et al., 1994). Shortly after that, another predisposing gene, BRCA2, was identified (Wooster et al., 1995). It is estimated that females with an identified mutation in BRCA1 have an 87% lifetime risk of developing breast cancer and a 44% lifetime risk of developing ovarian cancer (Ford, Easton, Bishop, Narod,

Psychological Aspects of Genetic Screening and Testing Goldgar, & Breast Cancer Linkage Consortium, 1994). Mutations in the BRCA2 gene give males a 6% risk of developing breast cancer by age 70 and females an 87% risk of breast cancer plus a moderately increased risk of ovarian cancer (Hoskins et al., 1995). Recent research has found that over 2% of Ashkenazi Jewish individuals carry mutations in BRCA1 or BRCA2 genes. However, interestingly, the risks of developing cancer for Ashkenazi Jewish individuals who have certain BRCA1 or BRCA2 mutations is less than previous estimates of high-risk individuals (Struewing et al., 1997). Findings of this nature underscore the role of modifying factors in determining whether a BRCA mutation will cause cancer in a given individual (Healy, 1997). The identification of these genes has made it possible to identify some individuals who will be at increased risk of developing cancer. However, these genes are not completely predictive of cancer, they are merely predisposing factors. Unlike HD in which a person with an identified mutation has over 99% chance of getting the disease sometime in the person's lifetime, a person with an identified cancer predisposing mutation has anywhere from 50% to 90% chance of developing cancer by age 70 (Croyle & Lerman, 1995). Therefore, unlike genetic conditions that have fairly straightforward inheritance patterns, most common cancers are true multifactorial diseases. Thus, from the procedural end, for the genetic counselor or other health professional explaining a person's genetic risk, cancer counseling can be quite complex. Most risk estimates are based on empirical data, so when a cancer predisposing mutation is just recently discovered, there is little data upon which to base a risk estimate. Therefore, cancer risk counseling is a dynamic process; as more research is done, risk estimates continue to change. As detailed previously, studies have shown that the desire to reduce uncertainty is one of the main reasons individuals give for wanting to go through with genetic testing. A great deal of uncertainty remains, however, for individuals found not to have an identifiable cancer-related mutation. A negative test result may mean that the individual has the population risk for the disease; thus the chance of disease cannot be completely eliminated by the negative result. Furthermore, especially for newly identified genes, not every disease-susceptibility mutation has been identified. Therefore, a person without a known mutation in the family, who is told that an identifiable mutation was not found, may be tested at a later date and be found to have a newly identified mutation. Thus, test participants who do not experience uncertainty

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reduction may be disappointed. In fact, data from the HD model have shown that it was those individuals whose uncertainty was not reduced who fared the poorest psychologically. Several large prospective studies of the psychological impact of cancer genetic testing were initiated in the 1990s. One such study showed that although BRCA1 noncarriers showed significant reductions in depressive symptoms and functional impairment as opposed to carriers and decliners of testing at a 1 month follow-up, mutation carriers did not show increases in depression and functional impairment from baseline to follow-up (Lerman et al., 1996). In another study, mutation carriers were found at a 1±2 week follow-up to manifest more symptoms of test-related distress and general distress than noncarriers (Croyle et al., 1997). All participants, regardless of their carrier status, had significant declines in anxiety between the pretest and 1±2 week follow-up. Preliminary studies show that, similar to HD, in the short term after testing noncarriers are relieved at their status, whereas carriers are somewhat distressed. However, the overall declines in distress levels pre- and post-testing show that even among carriers, the mere fact of testing decreases anxiety. One way to interpret this finding is by theorizing that the act of testing reduces perceived uncertainty, thus reducing anxiety, even if the results are less than certain. It is important to remember, however, that both of these studies took place under research protocols including extensive genetic education, counseling, and psychosocial support. What remains to be seen is whether these outcomes change as the test is offered in non-research settings to people from families without a previously identified gene mutation. If one believes that the issue of certainty is a critical component in genetic testing, then one could hypothesize that those individuals with a greater need for certainty will be more inclined to seek testing when they perceive it to satisfy their needs. This has been demonstrated by Croyle et al. (1995), who showed that individuals with a high need for certainty were less interested in a BRCA1 test when the information that breast cancer affects one in nine women regardless of genetic status was included than when this information was omitted. Another cause of uncertainty in gene mutation carriers is that of deciding treatment prevention, and surveillance options. Unlike HD in which there are no effective treatments or cures, some cancers have proven surveillance, prevention, and treatments. Studies have shown that a low-fat, high-fiber diet can help prevent colon cancer, but it is unclear whether a low-fat diet can help prevent breast cancer as well. In

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colon cancer, periodic colonoscopies have been shown to be effective in detecting early-stage polyps which can then be removed (Newcomb, Norfleet, & Storer, 1992; Winawer et al., 1993). If an advanced tumor is detected in the colon, a colectomy (removal of the colon), although not always a comfortable choice, can effectively stop spread of the cancer. In breast cancer, the merits of surveillance techniques such as breast self-exam (BSE) and mammograms remain controversial, but they are still recommended by most physicians (Olufunmilayo et al., 1997). Women who discover through genetic testing that they are at increased risk of breast and ovarian cancer are faced with choices regarding BSE, mammographies, prophylactic mastectomies, and prophylactic oopherectomies (Schrag, Kuntz, Garber, & Weeks, 1997). All of these choices can create a feeling of confusion and uncertainty, and psychological support and counseling throughout the decision-making process can be helpful. Research suggests that addressing distress related to cancer risk may also reduce maladaptive health behaviors. A study by Kash, Holland, Halper, & Miller (1992) showed that increased cancer anxiety decreased regular clinical examinations in women with a significant family history of breast cancer. High anxiety also predicted poor adherence to monthly self-breast examinations. In addition to the need for certainty, psychological preparedness has also been shown to be related to anxiety in cancer susceptibility genetic testing. Marteau et al. (1988) found that individuals who were previously unaware of their genetic risk were more likely to be in distress after testing. People who are not aware of their genetic risk are not able to prepare themselves psychologically, and as a result, have a harder time dealing with risk notification. Croyle et al. (1997) found that mutation carriers who had never had cancer or cancer-related surgery showed more distress than those who had had cancer or cancer-related surgery. The researchers explain the finding as that the women who already had cancer may have been less surprised at their result. In addition, because they had experienced cancer-related distress in the past they were able to put the genetic test into the context of this perspective. The concept that lack of psychological preparedness may correlate with high anxiety levels is an important one to consider as new protocols are developed for clinical cancer susceptibility testing. As testing becomes more widespread, there is a greater likelihood that people may be tested in clinical settings with insufficient informed consent and education. In these scenarios individuals are likely to be ill-prepared for bad news and may experience increased

levels of anxiety. This possibility emphasizes the importance of developing protocols that provide sufficient genetic information about the risk of being a carrier, and the psychological resources to help the patient negotiate personal and family implications of test results. It is important for clinicians to assess family and social support networks prior to genetic testing. The lack of social support has been shown to be associated with higher levels of distress after receiving test results (Kash et al., 1992) Furthermore, the prospect of testing can stimulate unresolved grief in members of families with inherited cancer syndromes. The psychological impact of previous disease in the family can shape family members' beliefs about biomedical science and what medicine has to offer. Because family members who died of cancer might have been subjected to outdated treatments, it is important to explore the extent to which family members' views of the disease and its treatment are shaped by these prior experiences. As with HD testing, psychological intervention is proving to be an important need for some individuals who undergo cancer susceptibility testing. Validated screening tools to assess a person's level of anxiety and depression are used in many research protocols to help identify individuals who need more extensive counseling than that provided by the genetic counselor or medical geneticist.

8.17.4 PSYCHOLOGICAL INTERVENTIONS It is quite common for people affected by genetic disease to have ongoing relationships with physicians who treat their physical symptoms and help them maintain their physical health. However, it is not as common for them to seek help for psychological issues concerning their genetic condition. In the USA, the specialized field of genetic counseling grew partly out of the recognition that psychological issues related to genetic disease were important to acknowledge (Kessler, 1992). Nevertheless, most genetic counseling training programs in the USA focus on the teaching of genetic science rather than psychological issues and treatment techniques. In Europe, medical or clinical psychologists are often relied on to provide psychological counseling, with genetics information being provided by a physician with specialized training in medical genetics. In their meetings with clients, medical geneticists and genetic counselors are able to explore some of the psychosocial issues associated with genetic conditions and testing.

Psychological Interventions However, these clinicians may not have an ongoing relationship with their clients, so it may not be possible for them to explore psychological issues in depth. For individuals who are affected by a genetic condition, considering genetic testing, or dealing with genetic results, regular, ongoing psychological intervention can be very helpful (Schild & Black, 1984). 8.17.4.1 Support Groups Support groups represent the first type of psychological intervention designed to meet the needs of individuals affected by genetic disease. Historically, many support groups were formed by individuals affected by particular genetic diseases to fill the void of psychosocial services that addressed the needs of this population. Before becoming involved with a specialized support group, individuals with rare genetic conditions may never have encountered someone else with the same condition. For individuals who feel self-conscious and stigmatized by their conditions in most public situations, participation in a support group can be a liberating and comforting experience (Weiss & Mackta, 1996). Genetic disease support groups allow individuals to share their feelings about aspects of their genetic condition and help each other anticipate psychological challenges. Support groups can be especially helpful for individuals going through certain life tasks that are affected by their particular genetic disease (Weiss & Mackta, 1996). For example, teenagers with cystic fibrosis may find it helpful to talk with one another about what it is like to be limited in their physical activities, how they tell their friends about their condition, and how they deal with an emerging sexuality in the face of the disease. Support groups can also prove helpful for individuals close to a person with a genetic condition. The spouse of an individual affected with HD has been referred to as a forgotten person (Kessler, 1993). They may spend so much of their time caring for their affected spouse that they often neglect their own emotional needs. A support group allows caregivers to voice their fears about their spouse's deterioration, their worry about their children's risk, and their frustration at the increasing medical costs, all in an environment that does not make them feel as if they are being selfish for having such concerns. Couples who have lost a child to a genetic condition or who have terminated a pregnancy after an abnormal prenatal test can also benefit by going through the grieving process with others who have been in similar situations. Especially for couples who

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have terminated a pregnancy because of a genetic condition and are fearful of telling others, a forum of honesty and openness without judgment is extremely welcome. Although support groups are helpful for many, they are not appropriate forums for everyone affected by a genetic condition. Some groups emphasize political advocacy, a role that some might wish to avoid. For an individual struggling with the initial acceptance of her diagnosis, a support group with advanced-stage patients may cause this individual to distance herself from the others because she does not want to admit that she is similar to them. Peer-led groups can sometimes disseminate inaccurate medical information. Furthermore, although the ideal support group is a caring, supportive, and nurturing environment, not all of them function in this way. Support groups may not be beneficial if there is too wide a variety of conditions, beliefs, or goals represented (Weiss & Mackta, 1996). For example, a general pregnancy-loss support group may not be the best place for couples who have terminated a pregnancy because of a genetic condition. In a group such as this, they may be judged by others because they chose to terminate instead of miscarrying their pregnancy. Furthermore, a couple who decided to terminate a fetus because an amniocentesis showed Down's syndrome may be condemned by another group member who believes that only life-threatening conditions are justified terminations. Finally, if they are populated by individuals with the need to constantly talk about themselves, support groups can turn into competitions for floor time where nobody actually listens to each other. A person who attends an unrewarding support group may need to find another one more suited to their needs or pursue some other form of psychological intervention. 8.17.4.2 Individual Therapy Individual therapy may be a more appropriate type of psychological intervention for individuals who do not find comfort in the support group environment. Others may use it in conjunction with a support group to talk about some of their more private or in-depth issues. For an individual coping with a genetic disease, individual therapy can allow the person to discuss the physical and psychological difficulties of the disease and work on selfesteem issues. For an individual considering genetic testing, individual therapy can serve as a forum for a discussion about the possible pros and cons of each decision, along with preparing the individual for each possible outcome. A person dealing with the results of a genetic test

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may pursue individual therapy in order to talk about feelings of depression, suicidal ideations, or guilt associated with the test result. Individual therapy may not be the most appropriate mode for some, however. As described earlier in this chapter, families and society influence a person's interpretation of and coping strategy for a genetic disease. By focusing mainly on the intrapsychic processes, individual therapy may not be able to address many of the interpersonal factors involved in coping within the family context. Clinicians who provide individual counseling must also be responsible for educating themselves about the disease and its medical implications. Close collaboration with a medical geneticist or genetic counselor is recommended. 8.17.4.3 Family Therapy As previously described, one of the unique features of genetic conditions is that they may be inherited biologically from parent to child. The psychological interpretation given to a genetic disease is also inherited through the family. Since family dynamics regarding the disease are crucial to how the disease is interpreted in a given family, family therapy may be especially helpful for families affected by a genetic disease. In therapy, family members can discuss ways in which each other affect the coping process. Persons in the family with the disease may feel stigmatized or infantized, so family therapy gives them a forum to discuss these feelings. Individuals in the family without the disease sometimes feel ignored or burdened with care. Family therapy allows these individuals to have a voice when they may not have necessarily felt they had one before. When family members who have a differing genetic status become involved in family therapy there may, however, be a conflict of interest. It may be difficult to negotiate different goals and concerns of various family members with a genetic disease and without the disease. In families affected by HD, the psychological needs of those who have tested positive for a gene mutation, those who have tested negative, and those who have chosen not to be tested may be too diverse to be addressed in family therapy. Ideally, family members should be provided with opportunities to discuss psychosocial and decision-making issues both within and outside of the family context. 8.17.4.4

Psychological Intervention Within the Medical Setting

Recent research has focused on psychological intervention for high-risk individuals within the

traditional medical care setting. A study by Lerman et al. (1995) evaluated a standardized protocol for individualized risk assessment and counseling for first-degree relatives of breast cancer patients. Previous studies had shown that the majority of women with family histories of breast cancer significantly overestimate their risk of cancer and have higher levels of anxiety. High levels of anxiety have been associated in some studies with decreased adherence to mammography (Lerman, Daly, Sands et al., 1993) and fewer clinical and self-breast exams (Kash et al., 1992). Lerman et al. (1995) found that the women who received risk counseling were more likely to have an accurate estimation of their cancer risk. However, among those women with high levels of anxiety at baseline, risk counseling did not improve their risk comprehension. Lerman and her colleagues concluded that, to be effective, cancer risk counseling should address the issues of cancerrelated anxiety (Lerman et al., 1995). Gagnon et al. (1996) found that women who attended structured surveillance programs showed significant improvement in their perceived risk comprehension and reductions in their anxiety levels, but found no change in performance of breast self-exam. Lloyd et al. (1996) conducted a retrospective study comparing women with family histories of breast cancer who had received genetic counseling with controls who had no family history of cancer. They found that after genetic counseling, women with family histories of cancer had more cancer-related distress than the control group, and concluded that the finding suggests that these women have significant anxieties that are not alleviated through the process of genetic counseling. Although this research is in the preliminary stages, it suggests that traditional risk counseling (genetic education) may not be effective in alleviating anxiety for women at increased cancer risk, thus highlighting the need to supplement these services with psychological counseling. 8.17.5 PROFESSIONAL ISSUES 8.17.5.1 Role of the Genetic Counselor In the USA, genetic counselors are health professionals usually trained with a 2 year postgraduate masters degree (Thompson et al., 1991). They provide genetic education and psychosocial support for individuals affected by genetic disease or who are considering genetic testing (Fraser, 1974). Genetic counselors often juggle duties of giving genetic information and providing psychological support. They are trained to give information to

References help a person make an informed decision, but do so in a way that is as nondirective as possible (Harper, 1993). Physicians who are trained in medical genetics often use a similar approach. Because genetic counselors and medical geneticists focus on knowledge acquisition and informed decision-making as a goal for their patients, clinical psychologists can focus on the broader meaning and implications of genetic tests results or genetic disease. 8.17.5.2 Role of the Psychologist There are many ways in which psychologists can complement the medical services received by individuals who are affected by a genetic condition. In academic settings a common role is the development of evaluation or research protocols concerning the psychological impact of genetic disease, genetic counseling, and genetic testing. When new genetic tests are introduced into clinical practice, psychologists are often called upon to conduct psychiatric screening or baseline assessments of test participants. Screening for depression is especially important, given research suggesting that depression is relatively common among individuals who attend specialized clinics for genetic risk evaluation (Robinson et al., 1997). For psychologists working in a hospital or other medical setting, individuals with genetic conditions may be referred for assessment or therapy, and psychologists can play a role in the development of referral criteria. Neuropsychological assessment is commonly utilized for genetic conditions that affect nervous system functioning, and psychologists can help educate genetic counselors in the appropriate interpretation of these findings. Psychologists also encounter grief and bereavement issues in parents who have lost a child to a genetic disorder, couples who terminated a pregnancy based upon genetic findings, or a person who has lost a family member to a hereditary disease. Finally, psychology professionals may be called upon to be facilitators for genetic support groups. In all of these roles, it is critical that psychologists have at least a basic familiarity with the medical features of the disease and the surveillance or treatment options available. 8.17.6 CONCLUSIONS The rapid pace of advances in genetic science and clinical genetics suggests that clinical psychologists will encounter patients with genetics-related disorders and concerns more frequently. In many medical settings, the role of the clinical psychologist in genetics services has

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yet to be established. In Europe, where genetic testing tends to be centralized within academic medical research centers, it may be easier for psychologists to establish and maintain a role in providing support services to patients. In the USA, where competitive forces encourage biotechnology companies to market genetic testing laboratory services to community physicians, there are fewer incentives to provide the comprehensive quality of care that psychologists can help to provide. By informing themselves about the distinctive concerns and challenges faced by individuals at-risk of or affected by genetic disease, psychologists stand a better chance of filling an important role in application of the new genetics to patients and their families. 8.17.7 REFERENCES ASHG Ad Hoc Committee on Cystic Fibrosis Carrier Screening (1992). Statement of the American Society of Human Genetics on Cystic Fibrosis carrier screening. American Journal of Human Genetics, 51, 1443±1444. Baty, B. J., Venne, V. L., McDonald, J., Croyle, R. T., Halls, C., Nash, J. E., & Botkin, J. R. (1997). BRCA1 testing: Genetic counseling protocol development and counseling issues. Journal of Genetic Counseling, 6, 223±244. Beeson, D., & Golbus, M. S. (1979). Anxiety engendered by amniocentesis. Birth Defects: Orginal Article Series, 15, 191±197. Bloch, M. Adam, S., Wiggins, S., Huggins, M., & Hayden, M. R. (1992). Predictive testing for Huntington disease in Canada: the experience of those receiving an increased risk. American Journal of Medical Genetics, 42(4), 499±507. Bloch, M., Fahy, M., Fox, S., & Hayden, M. R. (1989). Predictive testing for Huntington disease: II. Demographic characteristics, life-style patterns, attitudes, and psychosocial assessments of the first fifty-one test candidates. American Journal of Medical Genetics, 32, 217±224. Blumberg, B. D., Golbus, M. S., & Hanson, K. H. (1975). The psychological sequelae of abortion performed for a genetic indication. American Journal of Obstetrics and Gynecology, 122, 799±808. Brambati, B., Lanzani, A., & Tului, L. (1990) Transabdominal and transcervical chrorionic villuis sampling: Efficiency and risk evaluation of 2,411 cases. American Journal of Medical Genetics, 35, 160±164. Canadian Collaborative CVS±Amniocentesis Clinical Trial Group (1989). Multicentre randomised clinical trial of chorionic villus sampling and amniocentesis: First report. Lancet, 1, 1±6. Childs, B., Gordis, L., Kaback, M. M., & Kazazian, H. H., Jr. (1976). Tay-Sachs screening: Social and psychological impact. American Journal of Human Genetics, 28, 550±558. Codori, A. M., Hanson, R., & Brandt, J. (1994). Selfselection in predictive testing for Huntington's disease (see comments). American Journal of Medical Genetics, 54(3), 167±173. Colditz, G. A., Willett, W. C., Hunter, D. J., Stampfer, M. J., Manson, J. E., & Hennekens, C. H. (1993). Family history, age, and risk of breast cancer: Prospective data from the Nurses' Health Study. Journal of the American Medical Association, 270, 338±343.

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Croyle, R. T., & Lerman, C. (1993). Interest in genetic testing for colon cancer susceptibility: cognitve and emotional correlates. Preventive Medicine, 22, 284±292. Croyle, R. T., & Lerman, C. (1995). Psychological impacts of genetic testing. In R. T. Croyle (Ed.), Psychosocial effects of screening for disease prevention and detection. New York: Oxford University Press. Croyle, R. T., Dutson, D. S., Tran, V. T., & Sun, Y.-C. (1995). Need for certainty and interest in genetic testing. Women's Health: Research on Gender, Behavior, and Policy, 1, 329±339. Croyle, R. T., Smith, K. R., Botkin, J. R., Baty, B., & Nash, J. (1997). Psychological responses to BRCA1 mutation testing: Preliminary findings. Health Psychology, 16(1), 63±72. Cullinan, A. L. (1989). Psychological impact of genetic disease on individual. family, and societal systems. Genetic disease: The unwanted inheritance. New York: Haworth Press. Farrer, L. A. (1986). Suicide and attempted suicide in Huntington disease: Implications for preclinical testing of persons at risk. American Journal of Medical Genetics, 24, 305±311. Ford, D., Easton, D. F., Bishop, D. T., Narod, S. A., Goldgar, D. E., & Breast Cancer Linkage Consortium. (1994). Risks of cancer ion BRCA1-mutation carriers. Lancet, 343, 692±695. Fraser, F. C. (1974). Genetic counseling. American Journal of Human Genetics, 26, 636±659. Gagnon, P., Massie, M. J., Kash, K. M., Gronert, M., Heerdt, A. S., Brown, K., Sullivan, M. D., & Borgen, P. (1996). Perception of breast cancer risk and psychological distress in women attending a surveillance program. PsychoOncology, 5, 259±269. Geller, G., Botkin, J. R., Green, M. J., Press, N., Biesecker, B. B., Wilfond, B., Grana, G., Daly, M. B., Schneider, K., & Kahn, M. J. E. (1997). Journal of the American Medical Association, 277(18), 1467±1474. Giardiello, F. M., Brensinger, J. D., Petersen, G. M., Luce, M. C., Hylind, L. M., Bacon, J. A., Booker, S. V., Parker, R. D., & Hamilton, S. R. (1997). The use and interpretation of commercial APC gene testing for Familial Adenomatous Polyposis. The New England Journal of Medicine, 336(12), 823±827. Gould, R. L. (1997). Cancer and genetics: Answering your patients' question. Huntington, NY: PRR Inc. Green, J., & Statham, H. (1996). Psychosocial aspects of prenatal screening and diagnosis. In T. Marteau & M. Richards (Eds.)., The troubled helix: Social and psychological implications of the new human genetics. Cambridge, UK: Cambridge University Press. Gusella, J. F., Wexler, N. S., Conneally, P. M., Naylor, S. L., Anderson, M. A., Tanzi, R. E., Watkins, P. C., Ottina, K., Wallace, M. R., Sakaguchi, A. Y., Young, A. B., Shoulson, I., Bonilla, E., & Martin, J. B. (1983). A polymorphic DNA marker genetically linked to Huntington's disease. Nature, 306, 234±238. Harper, P. S. (1993). Practical genetic counseling. Oxford, UK: Butterworth-Heinemann. Healy, B. (1997). BRCA genesÐBookmaking, fortunetelling, and medical care. The New England Journal of Medicine, 336(20), 1448±1449. Hoskins, K. F., Stopfer, J. E., Calzone, K. A., Merajver, S. D., Rebbeck, T. R., Garber, J. E., & Weber, B. L. (1995). Assessment and counseling for women with a family history of breast cancer: A guide for clinicians. Journal of the American Medical Association, 273(7), 577±585. Huggins, M., Bloch, M., Wiggins, S., Adam, S., Suchowersky, O., Trew, M., Klimek, M., Greenberg, C. R., Eleff, M., Thompson, L. P., Knight, J., MacLeod, P., Girard, K., Theilman, J., Hedrick, A., & Hayden, M. R. (1992). Predictive testing for Huntington disease in Canada: adverse effects and unexpected results in those

receiving a decreased risk. American Journal of Medical Genetics, 42(4), 508±515. Huntington's Disease Collaberative Research Group (1993). A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington's disease chromosomes. Cell, 72, 971±983. Huntington's Disease Society of America (1994). Huntington's disease (HD): Facts at a glance (Brochure). New York: Author. Huntington Society of Canada (1993). Predictive testing for Huntington's disease (Brochure). Cambridge, ON: Author. Jorgensen, C., Uddenberg, N., & Ursing, Z. (1985). Ultrasound diagnosis of fetal malformation in the second trimester: the psychological reactions of the women. Journal of Psychosomatic Obstetrics and Gynecology, 4, 31±40. Kash, K. M., Holland, J. C., Halper, M. S., & Miller, D. G. (1992). Psychological distress and surveillance behaviors of women with a family history of breast cancer. Journal of the National Cancer Institute, 84(1), 24±30. Kelly, P. T. (1977). Dealing with dilemma: A manual for genetic counselors. New York: Springer. Kessler, S. (1979). The psychological foundations of genetic counseling. In S. Kessler (Ed.), Genetic counseling: psychological dimensions. New York: Academic Press. Kessler, S. (1992). Process issues in genetic counseling. In G. Evers-Kiebooms, J-P. Fryns, J-J. Cassiman, & H. Van den Berghe (Eds.), Psychosocial aspects of genetic counseling. New York: Wiley-Liss. Kessler, S. (1993). Forgotten person in the Huntington disease family. American Journal of Medical Genetics, 48, 145±150. Kessler, S., Field, T., Worth, L., & Mosbarger, H. (1987). Attitudes of persons at risk for Huntington disease toward predictive testing. American Journal of Medical Genetics, 26(2), 259±70. Korf, B. R. (1996). Human genetics: A problem-based approach. Cambridge, MA: Blackwell Science. Kushner, H. (1981). When bad things happen to good people. New York: Schocken Books. Lam, R. W., Bloch, M., Jones, B. D., Marcus, A. M., Fox, S., Amman, W., & Hayden, M. R. (1988). Psychiatric morbidity associated with early clinical diagnosis of Huntington disease in a predictive testing program. Journal of Clinical Psychiatry, 49(11), 444±447. Lerman, C., Daly, M., Sands, C., Balshem, A., Lustbader, E., Heggan, T., Goldstein, L., James, J., & Engstrom, P. (1993). Mammography adherence and psychological distress among women at risk for breast cancer. Journal of the National Cancer Institute, 85, 1074±1080. Lerman, C., Lustbader, E., Rimer, B., Daly, M., Miller, S., Sands, C., & Balshem, A. (1995). Effects of individualized breast cancer risk counseling: A randomized trial. Journal of the National Cancer Institute, 87(4), 286±292. Lerman, C., Narod, S., Schulman, K., Hughes, C., GomezCaminero, A., Bonney, G., Gold, K., Trock, B., Main, D., Lynch, J., Fulmore, C., Snyder, C., Lemon, S. J., Conway, T., Tonin, P., Lenoir, G., & Lynch, H. (1996). BRCA1 testing in families with hereditary breast-ovarian cancer: Prospective study of patient decision making and outcomes. Journal of the American Medical Association, 275(24), 1885±1892. Lloyd, S., Watson, M., Waites, B., Meyer, L., Eeles, R., Ebbs, S., & Tylee, A. (1996). Familial breast cancer: a controlled study of risk perception, psychological morbidity and health beliefs in women attending for genetic counselling. British Journal of Cancer, 74, 482±487. Lynch, H. T., Lemon, S. J., Durham, C., Tinley, S. T., Connolly, C., Lynch, J. F., Surdam, J., Orinion, E., Slominski-Caster, S., Watson, P., Lerman, C., Tonin, P., Lenoir, G., Serova, O., & Narod, S. (1997). A descriptive study of BRCA1 testing and reactions to disclosure of test results. Cancer, 79(11), 2219±2228.

References Lynch, H. T., Lynch, P. M., & Lynch, J. F. (1979) Genetic counseling and cancer. In S. Kessler (Ed.), Genetic counseling: psychological dimensions. New York: Academic Press. Mange, A. P. & Mange, E. J. (1990). Genetics: Human aspects. Sunderland, MA: Sinauer Associates. Markel, D. S., Young, A. B., & Penney, J. B. (1987). Atrisk person's attitudes toward presymptomatic and prenatal testing of Huntington's disease in Michigan. American Journal of Medical Genetics, 26(2), 295±305. Marteau, T. M. (1992). Psychological implications of genetic screening. In G. Evers-Kiebooms, J-P. Fryns, JJ. Cassiman, & H. Van den Berghe (Eds.), Psychosocial aspects of genetic counselling. New York: Wiley-Liss. Marteau, T. M., Kidd, J., Cook, R., Johnston, M., Michie, S., Shaw, R. W., & Slack, J. (1988). Screening for Down's syndrome (letter). British Medical Journal, 297, 1469. Massarick, F., & Kaback, M. M. (1981). Genetic disease control: A social psychological approach. Beverly Hills, CA: Sage. Mastromauro, C., Myers, R. H., & Berkman, B. (1987). Attitudes toward presymptomatic testing in Huntington's disease. American Journal of Medical Genetics, 26(2), 271±282. Medical Research Council Working Party on Amniocentesis (1976). An assessment of the hazards of amniocentesis. British Journal of Obstetrics and Gynaecology, 85, 1±14. Merkatz, I. R., Nitowski, H. M., Macri, J. N., & Johnson, W. E. (1984). An association between low maternal serum alpha feto-protein and fetal chromosome abnormalities. American Journal of Obstetrics and Gynecology, 148, 866±894. Miki, Y., Swensen, J., Shattuck-Eidens, D., Futreal, P. A., Harshman, K., Tavtigian, S., Liu, Q., Cochran, C., Bennett, L. M., Ding, W., Bell, R., Rosenthal, J., Hussey, C., Tanh, T., McClure, M., Frye, C., Hattier, T., Phelps, R., Haugen-Strano, A., Katcher, H., Yakumo, K., Gholami, Z., Shaffer, D., Stone, S., Bayer, S., Wray, C., Bogden, R., Dayanath, P., Ward, J., Tonin, P., Narod, S., Bristow, P. K., Norris, F. H., Helvering, L., Morrison, P., Rosteck, P., Lai, M., Barrett, J. C., Lewis, C., Neuhausen, S., Cannon-Albright, L., Goldgar, D., Wiseman, R., Kamb, A., & Skolnick, M. H. (1994). A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1. Science, 266, 66±71. Natowicz, M. R. & Alper, J. S. (1991). Genetic screening: Triumphs, problems, and controversies. Journal of Public Health Policy, Winter, 475±491. Newcomb, P. A., Norfleet, N. G., & Storer, B. E. (1992). Screening sigmoidoscopy and colorectal cancer mortality. Journal of the National Cancer Institute, 84, 1572±1575. Nora, J. J. (1994). Medical genetics: Principles and practice. Malvern, PA: Lea & Febiger. Olufunmilayo, O. I., Blackwood, A., Cummings, S., Daly, M. B., Davies, J. G., Dragon, L., Garber, J. E., Lichter, A. S., Lynch, P., Offit, K., Peterson, G. M., Thigpen, T. J., Tomlinson, G., Strauss-Tranin, A., Weber, B. L., & Wells, S. A. (1997). Resource document for curriculum development in cancer genetics education. Unpublished manuscript, American Society of Clinical Oncology. Patenaude, A. F., Schneider, K. A., Kieffer, S. A., Calzone, K. A., Stopfer, J. E., Basili, L. A., Weber, B. L., & Garber, J. E. (1996). Acceptance of invitations for p53 and BRCA1 predisposition testing: factors influencing potential utilization of cancer genetic testing. PsychoOncology, 5, 241±250. Phipps, S., & Zinn, A. B. (1986). Psychological response to amniocentesis: II. Effects of coping style. American Journal of Medical Genetics, 25, 143±148. Punales-Morejon, D., & Penchaszadeh, V. B. (1992).

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Psychosocial aspects of genetic counseling: Cross-cultural issues. In G. Evers-Kiebooms, J-P. Fryns, J-J. Cassiman, & H. Van den Berghe (Eds.), Psychosocial aspects of genetic counseling. New York: Wiley-Liss. Quaid, K. A. (1992). Presymptomatic testing for Huntington disease: Recommendations for counseling. Journal of Genetic Counseling, 1, 277±302. Quaid, K. A., & Morris, M. (1993). Reluctance to undergo predictive testing: the case of Huntington disease. American Journal of Medical Genetics, 45(1), 41±45. Quaid, K. A., & Wesson, M. K. (1995). Exploration of the effects of predictive testing for Huntington disease on intimate relationships. American Journal of Medical Genetics, 57(1), 46±51. Robinson, J. O., Hibbard, B. M., & Laurence, K. M. (1984). Anxiety during a crisis: emotional effects of screening for neural tube defects. Journal of Psychosomatic Research, 28(2), 163±169. Robinson, G. E., Rosen, B. P., Bradley, L. N., Rockert, W. G., Carr, M. L., Cole, D. E. C., & Murphy, K. J. (1997). Psychological impact of screening for familial ovarian cancer: Reactions to initial assessment. Gynecologic Oncology, 65, 197±205. Rosenfeld, D. L. (1984). Infertility. In A. E. H. Emery & I. Pullen (Eds.), Psychological aspects of genetic counselling. London: Academic Press. Schild, S. & Black, R. B. (1984). Social work and genetics: A guide for practice. New York: Haworth Press. Schrag, D., Kuntz, K. M., Garber, J. E., & Weeks, J. C. (1997). Decision analysisÐEffects of prophylactic mastectomy and oophorectomy on life expectancy among women with BRCA1 or BRCA2 mutations. The New England Journal of Medicine, 336(20), 1465±1471. Shapiro, J. (1983). Family reactions and coping strategies in response to the physically ill or handicapped child: A review. Social Science Medicine, 17, 913±931. Slattery, M. L. & Kerber, R. A. (1993). A comprehensive evaluation of family history and breast cancer risk: The Utah population database. Journal of the American Medical Association, 270, 1563±1568. Struewing, J. P., Hartge, P., Wacholder, S., Baker, S. M., Berlin, M., McAdams, M., Timmerman, M. M., Brody, L. C., & Tucker, M. A. (1997). The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. The New England Journal of Medicine, 336(20), 1401±1408. Tabor, A., & Jonsson, M. H. (1987). Psychological impact of amniocentesis in low risk women. Prenatal Diagnosis, 7, 443±449. Tabor, A., Madsen, M., Obel, E. B., Philip, J., Bang, J., & Norgaard-Pedersen, B. (1986). Randomised controlled trial of genetic amniocentesis in 4606 low-risk women. Lancet, 1, 1287±1293. Thompson, M. W., McInnes, R. R., & Willard, H. F. (1991). Genetics in medicine. Philadelphia: W. B. Saunders. Tibben, A., Duivenvoorden, H. J., Niermeijer, M. F., Vegter-van der Vlis, M., Roos, R. A. C., & Verhage, F. (1994). Psychological effects of presymptomatic DNA testing for Huntington's disease in the Dutch Program. Psychosomatic Medicine, 56, 526±532. Tibben, A., Duivenvoorden, H. J., Vegter van der Vlis, M., Niermeijer, M. F., Frets, P. G., van de Kamp, J. J., Roos, R. A., Rooijmans, H. G., & Verhage, F. (1993). Presymptomatic DNA testing for Huntington disease: identifying the need for psychological intervention. American Journal of Medical Genetics, 48(3), 137±144. Tyler, A., Ball, D., & Crauford, D. (1992). Presymptomatic testing for Huntington's disease in the United Kingdom. British Medical Journal, 304, 1593±1596. United States Institute of Child Health and Human Development Study Group (1976). Journal of the

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.18 Arthritis JULIE H. BARLOW Coventry University, UK 8.18.1 INTRODUCTION

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8.18.2 DISEASE CHARACTERISTICS AND TREATMENT

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8.18.2.1 8.18.2.2 8.18.2.3 8.18.2.4

Osteoarthritis Rheumatoid Arthritis Ankylosing Spondylitis Juvenile Chronic Arthritis/Juvenile Rheumatoid Arthritis

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8.18.3 THE ROLE OF PSYCHOLOGICAL FACTORS IN ONSET AND COURSE OF DISEASE

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8.18.4 PSYCHOLOGICAL ASPECTS OF SYMPTOMS, DIAGNOSIS, AND TREATMENT

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8.18.5 IMPACT ON PERSON AND FAMILY

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8.18.5.1 8.18.5.2 8.18.5.3 8.18.5.4

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Psychological Impact Children with JCA Social Impact: Family Social Impact: Society

8.18.6 ADHERENCE

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Information and Instruction Cognitive Behavioral Interventions Self-management Interventions Interventions in JCA Effectiveness of Psychological Interventions

8.18.8 PROFESSIONAL ISSUES

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8.18.9 CONCLUSIONS AND FUTURE ISSUES

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8.18.10 REFERENCES

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disability in the UK (Badley & Tennant, 1993) and is linked to increased rates of mortality (Pincus & Callahan, 1993). Most forms of arthritis follow an unpredictable course of exacerbations and remissions, resulting in varying degrees of physical deformity. Prognosis is uncertain, and, since there is no cure, treatment is ameliorative aiming to alleviate inflammation, reduce pain, and preserve or improve function. Arthritis comprises over 200 different chronic diseases involving the joints and/or connective tissues, the most prevalent forms being osteoarthritis, rheumatoid arthritis

8.18.1 INTRODUCTION Arthritis is one of the most common chronic conditions, affecting millions of people worldwide. In the USA, prevalence rates of selfreported arthritis are projected to increase from 15% (37.9 million) in 1990 to 18.2% (59.4 million) by 2020 (Helmick, Lawrence, Pollard, Lloyd, & Heyse, 1995) with older people, women, and those with less education or lower incomes being at greater risk. Although not considered a major public health problem, arthritis is the largest single cause of physical 427

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and, ankylosing spondylitis in adults (Taal, Seydel, Rasker, & Weigman, 1993) and juvenile chronic arthritis (JCA) in children. Other forms of arthritis (e.g., systemic lupus erythematosus, scleroderma, Sjogren's syndrome, psoriatic arthritis, gout) are less common. Medical assessment and evaluation of the patient includes clinical history, a physical examination, and laboratory tests. The pain of arthritis is the most frequent factor causing patients to seek health care. Characteristics, such as location, quantity, intensity, nature, and the course of pain can assist diagnosis. Other symptoms of arthritis include stiffness, limited motion, fatigue, weakness, and swollen joints. The latter can be assessed by inspection or by direct palpation of the joint. A count of the number of swollen joints provides an indication of the amount of inflamed tissue. Use of diaries could prove a useful adjunct to traditional methods of pain assessment (e.g., visual analogue scales) and can incorporate ratings of stiffness, fatigue, and mood. General laboratory tests can help to determine whether arthritis, and its treatment, have affected major body systems. For example, a full blood count may reveal the presence of anemia, a common feature of arthritis. In rheumatoid arthritis (RA), 80% of patients will test positive for rheumatoid factor, an antibody directed against immunoglobulin. Rheumatoid factor is associated with increased disease severity, the development of erosions, extra-articular manifestation, and greater disability (Harris, 1993). Synovial fluid aspiration and examination can aid diagnosis of joint pain. Levels of acute phase reactants (e.g., C-reactive protein, erythrocyte sedimentation rate) are used to monitor disease activity. Radiography, or X rays, are helpful both diagnostically and in monitoring disease progression. Other imaging techniques include ultrasonography, computed tomography, and magnetic resonance imaging. The most widely used system of disease classification for prevalence and incidence studies is based on relevant sets of criteria published by the American Rheumatism Association (ARA). For example, the ARA (1987) criteria for RA include morning stiffness, arthritis of hand joints, serum rheumatoid factor, and radiographic changes. 8.18.2 DISEASE CHARACTERISTICS AND TREATMENT 8.18.2.1 Osteoarthritis Osteoarthritis (OA) is generally acknowledged to be the most prevalent form of arthritis, particularly among older people. Prevalence

rates vary according to the reporting methods used, the age and gender of study participants, and the number of joints studied. Early epidemiological studies in the UK, using radiographic change as the detection criterion, found that almost everyone aged 65 and over had OA in at least one joint (Lawrence, Bremmer, & Bier, 1966). Since the proportion of older people in the population is rising, increasing numbers of older adults will develop OA. The condition is characterized by progressive loss of articular cartilage and secondary reactions in bone causing joint pain and stiffness, particularly at the start of movement. Bony enlargement of affected joints can occur and mobility can become progressively restricted. Hutton (1995) suggests that since there is no treatment that can influence disease progression, clinical management should be based on principles of logic and not doing harm. Control of pain is through lowtoxicity analgesia, and although considered a noninflammatory condition, anti-inflammatory drugs are often prescribed. Exercise, splinting, and use of aids (e.g., walking stick) can assist mobility. Outcome for people with severe hip or knee OA can be improved with joint replacement. Most people with OA remain under the care of a general practitioner, and are only referred to hospital-based clinics when problems become severe (e.g., need for hip replacement). Comorbidity is common among older people. 8.18.2.2 Rheumatoid Arthritis RA, affects approximately 1% of the population (Schumaker, 1988), manifests between the ages of 20 and 50, and is more prevalent among women, with a ratio (women to men) of 3:1 (Anderson, Bradley, Young, McDanial, & Wise, 1985). The precise etiology of RA remains largely unknown, and although a hereditary predisposition (i.e., an association with the human leukocyte antigen, HLA-DR4), has been established, it is poorly understood (Hazes & Silman, 1990). In RA, the synovial membrane becomes thickened and inflamed, eventually resulting in degeneration of the cartilage and ultimately the joint. Primary symptoms are persistent pain, stiffness, swollen joints, and fatigue, anemia is common. RA is a systemic condition, therefore people can feel generally unwell in addition to experiencing problems with specific joints. Typically, joints in the hands and feet are affected, thus leading to impaired physical functioning and difficulty in performing activities of daily living. The economic impact of disability of resulting from RA in England for the year 1992 has been estimated at ƒ1256 billion (McIntosh, 1996).

The Role of Psychological Factors in Onset and Course of Disease Most people with inflammatory arthritis, including those with RA, will be prescribed nonsteroidal anti-inflammatory drugs (NSAIDs) as first-line drug treatment. Second-line drugs may be used if NSAIDs fail to control symptoms. People with RA are advised to carry out regular, gentle exercise and to learn when to rest inflamed joints. Splints may be used in attempts to prevent permanent joint deformity. Finally, where joints become damaged beyond repair, joint replacement may be necessary to relieve pain and to improve function. People with RA often require long-term monitoring and care by specialized rheumatology clinics. 8.18.2.3 Ankylosing Spondylitis Ankylosing spondylitis (AS) is characterized by an early age of onset (under 40) and is one of the few rheumatic diseases to exhibit a male predominance, with reported ratios in the region of 3 men:1 woman (Kahn & van der Linden, 1990). The etiology of AS remains unknown, although an association with the antigen HLA-B27 was identified over 20 years ago (Brewerton, Caffrey, & Hart, 1973). The disease affects mainly the spine and sacroiliac joints, although other parts of the body (e.g. hips, shoulders, knees, eyes) can become involved. Gradual fusion of affected joints in the spine results in progressive functional impairment and the development of a typical hunched posture. Treatment is two-fold, consisting of medication and therapeutic exercise. The aim of medication is to reduce pain and inflammation. Performance of regular strengthening and stretching exercises is advised in order to maintain mobility of affected joints, to improve or maintain posture, and to achieve general fitness. After diagnosis, some patients continue to be monitored in hospital-based clinics, while others may be referred back to community-based medical practitioners for long-term healthcare. People with AS can be referred to a physiotherapy department for advice on home exercise activities and may also receive a short course of hydrotherapy, although such treatment is dependent upon the availability of local facilities. 8.18.2.4 Juvenile Chronic Arthritis/Juvenile Rheumatoid Arthritis Contrary to the general belief that arthritis is a condition of ªold age,º some forms of arthritis begin in childhood. JCA is defined as an inflammatory arthritis with onset prior to a child's 16th birthday (Munthe, 1990). The condition is categorized into three subgroups:

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systemic onset disease, characterized by fever and a rash; pauciarticular disease, four or fewer joints affected in the absence of systemic features; and polyarticular disease where five or more joints are involved in the absence of systemic features. JCA is one of the most common chronic diseases of childhood with prevalence estimates ranging from 0.16 to 1.13 per 1000 children (Benjamin, 1990). JCA is associated with chronic pain, restricted joint mobility, and reduced physical function, placing children at risk of long-term physical disability. JCA is a complex condition requiring complex disease management best achieved by a pediatric rheumatology team (rheumatologists, nurses, physiotherapists, occupational therapists, and psychologists).

8.18.3 THE ROLE OF PSYCHOLOGICAL FACTORS IN ONSET AND COURSE OF DISEASE Early studies implicated personality and stress as predisposing factors leading to the onset of RA (Booth, 1937; Jones, 1909). In a review of the literature, Moos (1964) concluded that people with RA are conforming, conservative, compliant, subservient, depressed, sensitive, inhibited, and anxious. However, evidence of causality is lacking given the methodological problems associated with retrospective studies and the identification of appropriate comparison groups. One attempt to compare the personality characteristics and stress at disease onset of patients with RA and OA failed to find evidence of a generalized, simple, and distinct RA personality (Latman & Walls, 1996), although there were indications that a subgroup of RA patients, characterized by high stress at disease onset, may experience a higher degree of disease severity. Beliefs, deriving from clinical experience and anecdotal evidence, can evolve into stereotypes of ªtypicalº patients and become associated with certain forms of arthritis. For example, compared with RA, people with AS are generally believed to be aggressive, active, less depressed, less emotional, more socially oriented, more highly motivated, and to possess a high pain threshold (Williams, 1989). It is important to note that RA is more predominant in women, with a typical age at onset between 40 and 50 years, whereas AS is more predominant in men, with a typical age at onset between 20 and 30 years. In addition, treatment for AS comprises regular performance of a relatively aggressive exercise regime, while treatment for RA places greater emphasis on the importance of rest during periods of disease exacerbation

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and traditionally positions the patients as passive recipients of care. One attempt to assess the validity of health professionals' beliefs compared patients with RA, AS, and chronic low back pain in terms of sthenia (noncomplaining, active), ambition, and education (Zant, Dekker-Saeys, Van den Burgh, Kolman, & Van der Stadt, 1982). Results showed that although AS patients had a significantly higher education level, they did not differ from the other patient groups or Dutch population norms on sthenia or ambition. Similarly, T. Stiles (personal communication, 1993) found no difference on personality traits between women with AS and either women receiving physical therapy for generalized aches and pains or healthy controls. Many of the characteristics associated with arthritis (e.g., depression) may be reactions to a painful, chronic, and disabling disease, rather than causal factors. Nevertheless, there are indications that stress may trigger disease onset and may influence the course of established disease (Anderson et al., 1985; Lerman, 1987). Links have been established between stress and immune system functioning in people with RA (Bradley, 1989; Wegener, 1991). Using a combination of interviews and blood tests, an investigation of the relationship between life stress and immune parameters among 33 women with RA attending three routine, monthly, clinic checkups showed that stress resulted in negative immune system reactions (Zautra et al., 1989). However, the precise mechanisms involved remain unclear.

8.18.4 PSYCHOLOGICAL ASPECTS OF SYMPTOMS, DIAGNOSIS, AND TREATMENT One difficulty in diagnosing many forms of arthritis is the potential overlap of disease symptomatology with psychological symptomatology. Intermittent pain, fatigue, and sleep disturbance can be symptoms of both arthritis and depression. This can delay the acquisition of a medical label for one's condition, particularly where blood tests are not clear diagnostic indicators. Equally, the overlap of symptoms can work in the opposite direction, masking psychological distress. Hence, some people with arthritis may not receive appropriate psychological care when needed. Poor detection of major depressive disorder occurs when symptoms (e.g., fatigue) are attributed to RA and the possibility of concurrent psychological disorder is not considered (Creed & Ash, 1992). The authors of a study of depression in AS concluded that such oversights are not limited

to RA, but can occur in other forms of arthritis (Barlow, Macey, & Struthers, 1993). A long delay between onset of symptoms and medical diagnosis is a characteristic of AS associated with greater adherence to therapeutic exercise (Barlow & Barefoot, 1996). Thus a potentially negative experience, a long period between onset and medical diagnosis, can have a positive outcome in terms of health behavior. However, this has to be offset against negative aspects such as the impact of being informed that pain, stiffness, and fatigue are ªall in the mindº and do not have an organic cause. During this prediagnostic period people are often considered ªneuroticº (Dekker-Saeys, 1976). The impact of being given such opinions during the delay between onset and diagnosis has not been fully examined. One issue likely to become more salient in the field of arthritis concerns the implications of genetic screening. Hereditary factors have been identified and associated with certain forms of arthritis (e.g., RA, AS), a fact reflected in the concern expressed by adults regarding their decisions to have a family, and anxiety about ªpassing onº arthritis to children and grandchildren (Barlow & Cullen, 1996). 8.18.5 IMPACT ON PERSON AND FAMILY The unpredictable course of disease, allied to an uncertain prognosis, combine with painful, disabling symptoms to pose considerable challenges for people with arthritis. The incurable nature of most forms of arthritis necessitates long-term disease management, including maintenance of complex treatment regimes. Not surprisingly, the impact of this chronic condition is wide ranging and pervades all areas of life, such as psychological well-being (Barlow, Macey, & Struthers, 1993; Creed & Ash, 1992), ability to work (Callahan, Bloch, & Pincus, 1992; Lubeck, 1995), social relationships (Fitzpatrick, Newman, Archer, & Shipley, 1991), and family life (Reisine, 1993). Paralleling the medical literature, psychological studies have tended to focus on people with RA. Thus psychosocial impact is less well documented among OA, AS, and JCA. 8.18.5.1 Psychological Impact Although episodes of psychological distress may be experienced along the way, most people with arthritis appear to achieve a degree of adjustment to the challenge of their disease. Much of the documented work examining psychological impact has focused on depression among people with RA (see Anderson et al.,

Impact on Person and Family 1985; Creed & Ash, 1992; Katz & Yelin, 1993, for reviews). The consensus is that depressive disorders and depressive symptoms are more common among people with RA, with prevalence rates equivalent to those in other clinic samples of people with chronic diseases. For example, a population-based study conducted in the USA reports a prevalence of 20% for depression in RA (Hawley & Wolf, 1993).Using a UK sample and the Hospital Anxiety and Depression Scale (Zigmond & Snaith, 1983), Pincus, Griffith, Pearce, and Isenberg (1996) report a prevalence of 23% compared with 6% among case controls (using a score of 8+ for indicating a possible clinical state), with prevalence decreasing to 15% using a more stringent cut-off point (11+) for determining ªcases.º Odds ratios for depression and anxiety showed that RA patients were twice as likely to be depressed and four times as likely to be anxious. The overlap between symptoms of depression and symptoms of arthritis can be problematic when the purpose of measurement is to identify cases or severity of depression, or to determine prevalence rates. Although the inclusion of somatic items on depression scales can inflate estimates of severity and prevalence in RA, the level of inflation is believed to be modest (Blalock, DeVellis, Brown, & Wallston, 1989). Given the persistence of arthritis pain, it is not surprising that pain has been identified as a correlate of depression in RA (Creed & Ash, 1992) and AS (Barlow et al., 1993). A key issue yet to be resolved concerns the direction of causality. Results from longitudinal studies in RA have been inconsistent. For example, Brown (1990) suggests a causal model in which pain predicts subsequent depression. Nicassio and Wallston (1992) extended this work in a longitudinal study of 242 RA patients, showing that prior pain predicted adverse changes in sleep problems and that the interaction between high sleep problems and high pain were independently associated with depression. In contrast, Parker et al. (1992) found that depression had more influence over pain than vice versa. Appraisals, expectations, and coping strategies have been investigated as potential mediators of pain, psychological well-being, and disability. Feelings of helplessness can arise owing to the uncertain disease course, lack of satisfactory pain control, and the interference of arthritis with daily activities. People with high levels of helplessness tend to report high pain and greater depression. A cross-sectional study of 92 patients with RA, revealed that perceived helplessness mediated the relationship between pain and depression in RA (Smith, Peck, &

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Ward, 1990). This finding has been replicated in a sample of people with OA (Wallston, 1993) and in a multiwave study of patients with RA (Smith & Wallston, 1992). Similarly, longitudinal analyses have demonstrated that both helplessness and pain are significant mediators between disease activity (indicated by joint count) and future physical and psychological disability (Schoenfeld-Smith et al., 1996). Affleck, Tennen, Pfeiffer, and Fifield (1987) found that positive mood and better psychological adjustment were associated with perceived control over symptoms in a cross-sectional analysis based on a combination of interview and questionnaire data. There is consensus that passive, avoidant, emotion-focused coping strategies are related to depression, negative affect, and poor selfesteem, whereas active coping strategies are related to positive affect and decreased depression (Young, 1992). Wishful thinking has been associated with poorer psychological wellbeing, whereas cognitive restructuring and information seeking are associated with better psychological well-being (Felton & Revenson, 1984; Manne & Zautra, 1989). Furthermore, passive coping strategies have been identified as mediators between pain and subsequent depression (Brown, Wallston, & Nicassio, 1989). In three independent samples of RA patients, Zautra et al. (1995) confirmed that coping mediates the relationship between disease variables and positive and negative affect. Using cluster analysis, Newman, Fitzpatrick, Lamb, and Shipley (1990) classified 158 RA patients on the basis of their coping strategies. Interestingly, the largest group (n = 105) did not demonstrate a distinctive coping style, but was found to utilize a range of strategies to limited extents. Although the four groups identified did not differ on demographic, clinical, or laboratory measures, one group (n = 14), characterized by lower levels of pain, stiffness, and disability and greater psychological well-being, tended to use more open and active strategies to cope with the disease. Depression may be a key factor influencing perceptions of disability among people with arthritis. Psychological factors have been shown to be better predictors of disability compared with traditional, medical indicators of disease activity in RA (Katz & Yelin, 1993; McFarlane & Brooks, 1988; Newman, Fitzpatrick, Lamb, & Shipley, 1989; Wright et al., 1996). In a study of knee OA examining the roles of sociodemographic factors, obesity, radiographic evidence, and pain on self-reports of disability (Jordan et al., 1996), results revealed that severity of pain was more important than radiographic evidence in determining disability.

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Taken together, these findings are consistent with anecdotal evidence from health care professionals suggesting that the degree of psychological distress is not always directly related to disease severity or to objective indicators of disability. It is important to note that disability in arthritis is often measured by self-report questionnaires, both for research purposes and screening in clinical settings. Respondents are typically asked to rate their ability to perform a range of daily activities (e.g., dressing, eating). Thus ratings of disability may be influenced by psychological factors such as depression, self-efficacy, or degree of illness acceptance. The role of depression may be one of mediation, whereby higher levels of depression produce a downward bias in perceived ability to perform daily activities, even controlling for objective measures of disease activity. Clearly, longitudinal studies are needed to disentangle the precise nature of causal relationships between pain, depression, and disability.

8.18.5.2 Children with JCA Investigations of psychosocial well-being among children with JCA have produced inconsistent findings. Compared with a control group, children with arthritis are reported to have a more negative self-image and lower than average achievement scores in school (McAnarney, Pless, Satterwhite, & Friedman, 1974). However, these findings have not been replicated in later studies (Billings, Moos, Miller, & Gottieb, 1987; Ungerer, Horgan, Chaitow, & Champion, 1988). In a review of psychosocial factors, Miller (1993) concludes that in general children with rheumatic diseases do not show evidence of psychological or social dysfunction. Similarly, Revenson (1993) maintains that JCA places some, but not all, children at risk of psychosocial problems. Family studies suggest that family cohesion and harmony, few stressful events, and better parental health status are associated with fewer adjustment or behavioral problems among children (Harris, Newcomb, & Gewanter, 1991; Ross et al., 1993; Vandik & Eckblad, 1991; Varni, Wicox, & Hanson, 1988; Wallander & Varni, 1989). The nature of arthritis (pain, fatigue, visible changes to the body) and adherence to complex treatment regimens combine to make children with JCA feel and appear ªdifferentº from their peers (Barlow, Shaw, & Harrison, 1997). In addition, many children meet substantial barriers when attempting to participate in school and leisure activities. The influence of these factors on psychological adjustment has rarely been examined.

8.18.5.3 Social Impact: Family The impact on family dynamics has rarely been addressed, despite the relatively high levels of physical disability associated with arthritis and the nature of that disability, which is likely to interfere with performance of instrumental and nurturant activities. Over 50% of people with RA and OA experience loss in eight life domains including household chores, leisure activities, work, and social relationships (Yelin, Lubeck, Holman, & Epstein, 1987). In large samples of people with RA, the most affected areas of family role functioning were found to be shopping, cleaning, and maintaining family ties (Reisine, Goodenov, & Grady, 1987). The importance of instrumental tasks, such as cooking, has been highlighted by Katz and Yelin (1994), who found that inability to perform valued family activities was related to depression in women with RA. A survey of 240 people with AS has revealed that approximately one-third experience difficulties in parenting (Barlow & Cullen, 1996). The main problem areas centered on breast-feeding, lifting, holding, bathing, and parents' inability to participate in ªrough and tumbleº play and sporting activities. As expected, a gender difference emerged with women reporting more difficulties with babies and toddlers, while men tended to experience more problems in caring for older children over the age of five. Fatigue, pain, restricted mobility, and negative emotional reactions were the main factors detracting from perceptions of successful parenting. Consequently, many people felt deprived of the joys and pleasures of simply being a parent. Feelings of frustration, impatience, anger, irritability, and depression were typically expressed: ªI became irritable due to discomfort and stiffnessº; ªBeing unable to join in physical activities left me feeling very frustratedº; and ªI let my pain control my anger instead of understanding youthful behavior.º The impact of arthritis permeates through other family members with variable effects: some families find they are closer, others report no difference and some report negative effects on family life (Pritchard, 1989). In RA, married people perceived better access to help with instrumental tasks, more physical affection, and expressed feelings of being needed by others, compared with those who were not married (Manne & Zautra, 1989). A comparison of income, social support, and psychological wellbeing among women with RA revealed that widowed or divorced women had a lower income, less potential support, and higher levels of depression and anxiety than women who had never married or those living with a spouse

Impact on Person and Family (Kraaimaat, van Dam-Baggen, & Bijlsma, 1995). Interestingly, pain contributed to depression and anxiety only in women living with a spouse. The effects of social support may not be positive if the nature of the support offered fails to match the needs of the person with arthritis. A close relationship may be a double-edged sword in that positive and negative aspects of such relationships may both assist and detract from coping and adjustment. Nevertheless, social support from family and friends has been associated with less depression (Revenson & Majerovitz, 1991), more life satisfaction (Burckhardt, 1985) and greater self-esteem (Fitzpatrick, Neuman, Lamb, & Shipley, 1988). Revenson (1993) concludes that the relationship between social support and psychological adjustment is robust and consistent across studies. Both the direct-effects and stress-buffering model have been examined in RA, in attempts to determine the mechanism through which social support influences psychological adjustment. Brown, Wallston, and Nicassio (1989) found evidence of both direct and stressbuffering effects on depression in cross-sectional analyses, but only a direct effect longitudinally. Fitzpatrick, Newman, Lamb, and Shipley (1988) revealed that social support was associated with greater self-esteem and lower depression, regardless of level of disability, thus providing support for the direct effects model. Similarly, a study of newly diagnosed RA patients revealed that greater support was associated with less depression, regardless of physician-rated disease severity (Revenson & Majerovitz, 1991). Arthritis can impact on the wellbeing of other family members. For example, the presence of RA can evoke negative consequences among healthy spouses (Reisine, 1993) and negative marital interactions surrounding the wife's illness can determine psychological adjustment of both husband and wife (Manne & Zautra, 1990). The effect on children of having a parent with arthritis has received little attention. However, there are indications that adolescents of parents with RA may have difficulty in maintaining self-esteem (Hirsch, Moos, & Reischl, 1985). Similarly, having a child with arthritis is likely to place an additional strain on the burden of care among parents and has been found to have negative consequences (Timko, Stovel, & Moos, 1992). One cause of psychological distress may be parents' perceived need to monitor their child's condition constantly for symptoms and side effects, combined with fear for their child's future health, career, and happiness (Barlow, Shaw, & Harrison, 1998). The result of prolonged emotional stress on

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parents has not been examined systematically and remains to be fully elucidated. Similarly, the impact of a child's arthritis on siblings and grandparents, and vice versa, has received little attention but may be an important avenue of further inquiry in attempts to understand the factors that promote family coping ability. 8.18.5.4 Social Impact: Society There is a tendency for health-related research to be framed within the medical model of disability, whereby ªthe problemº is considered to be a deficit in adjustment, motivation, or ability of the person with arthritis. This model construes professionals as the experts, who intervene with ªsolutionsº for those lacking in knowledge and expertise. In contrast, the social model of disability suggests that problems derive from the attitudinal, environmental, and organizational barriers faced by people with arthritis (Barlow & Harrison, 1996). Arthritis is generally viewed as a condition associated with old age. This attitude derives from a lack of understanding in society, and is a constant source of frustration for young people and children who are told that they ªcannot have arthritisº because they are ªtoo young.º The effect of such attitudes serves to deny their personal experience and identity. The bodily impact of arthritis can be visible or invisible, as well as permanent or temporary. Social expectations can vary according to the visibility or invisibility of disabilities (Stone, 1995). Hence, it is difficult to explain how one can be relatively free from pain one day, but in agony and unable to move the next. People with invisible or fluctuating arthritis can be accused of being lazy, malingering, or using their condition as an excuse for failing to meet the expectations of others in their social network. When arthritis is visible there is an overwhelming propensity for people to see the arthritis rather than the person, resulting in feelings of being different, marginalization, and exclusion. Young people and children often miss long periods of schooling during times of an arthritis ªflare.º The choice between segregation, if steered down the special needs route, or isolation, if left trying to cope in unsupportive and disabling institutions, is a false dichotomy faced by many young people. Institutional regulations frequently dictate inflexible working or school hours causing difficulties for those who experience fatigue as an integral part of their condition. Fatigue can render the individual unable to muster the intellectual or physical capacity necessary to negotiate a day in education or work.

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Environmental barriers frequently derive from the inappropriate design of physical infrastructures that effectively limit not only access to buildings and public transport, but also freedom of movement once inside. Buses with high steps, the lack of ramps at the entrance to buildings, and the scarcity of disabled toilets are examples of environmental barriers frequently cited by people with arthritis of all ages (Barlow et al., 1997; Williams, Cullen, & Barlow, 1996). Restricted access to buildings and transport have major implications for leisure pursuits and establishing a social life. Everyday activities, such as shopping or going to the cinema, become significant feats of negotiation, endurance, and even risk taking. A positive outlook, self-esteem, and selfconfidence become difficult to maintain. Feelings of isolation, anger, and being different are common (Barlow & Cullen, 1996; Barlow et al., 1997). Finding a relevant peer group, through voluntary organizations or support groups, can enable people with arthritis to feel part of a community, a group with shared experiences and and values (Barlow, Cullen, Davis, & Williams, 1997). Such feelings of belonging can also be engendered by attending psychological interventions based on group formats, which offer the opportunity for participants to meet with similar others and to discuss common concerns.

8.18.6 ADHERENCE As in all chronic diseases, responsibility for the daily management of arthritis gradually shifts from the healthcare team to the individual. Management of home-care regimens is often complex, involving adherence to a range of therapies, including medication, prescribed exercise, splint wearing, clinic attendance, and the avoidance of health risk behaviors. For the person with arthritis, the benefits of behavioral strategies (e.g., exercise, use of splints), may not be evident in the short term, but are necessary to prevent further disability. Complex, long-term therapies are notoriously difficult to maintain, thus it is not surprising that adherence in arthritis is often poor and not only detracts from the individual benefits of various therapies, but on a wider scale, can result in increased health costs. A review of treatment adherence in RA (Bradley, 1989) revealed that rates of cooperation varied from 33% to 78% for medication and from 33% to 66% for therapeutic exercises. Patients' beliefs concerning the efficacy of treatment may be crucial determinants of adherence. The demands placed on individuals

are well illustrated in the context of exercise therapy. Exercising regularly for the remainder of one's life is a daunting prospect for even the most motivated of individuals whatever the age of disease onset, but can be particularly problematic in conditions that begin during adolescence or young adulthood. For example, a young man diagnosed with AS at the age of 20 can expect to carry out over 18 000 exercise sessions by the time he is 70. Regular exercise and monitoring of posture have to become an integral part of everyday life. Psychological interventions can offer a useful means of enhancing adherence and as yet have not been fully exploited in the field of arthritis. 8.18.7 PSYCHOLOGICAL INTERVENTIONS The range of psychological interventions utilized in arthritis is summarized in Table 1; the most common being cognitive behavioral therapy and self-management programs. Interventions can be delivered in individual or group format, in clinic or community settings. 8.18.7.1 Information and Instruction People with arthritis require the necessary knowledge and understanding to make informed decisions concerning treatment options, to adhere to complex regimens and to perform self-care activities. Hence, provision of information is an integral aspect of clinical encounters and often forms the opening section of many interventions. The successful transfer of information not only represents a useful first step in the process of empowering individuals to perceive themselves as capable of controlling their arthritis, but may also go some way towards satisfying patients' desire for information. Kay and Punchak (1988) found that only 46% of patients with RA reported that they had received information about their condition from health professionals. Nevertheless, these patients were keen to find out more about their disease, its management, and drug treatment and believed information on these topics would help them to cope better with their everyday lives. A survey of rheumatology outpatients revealed that 55% had sought further information about their condition outside of the clinic setting (Barlow & Pennington, 1996). People wanted to know more about their condition (e.g., the cause, symptoms) and disease management, particularly self-care. Information-seeking behavior was associated with a diagnosis of RA, being female, and holding educational qualifications.

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Psychological Interventions Table 1 Summary of psychological interventions.

Type of intervention Instruction materials: leaflets, books, videos, computer multimedia programs Cognitive-behavioral therapy Self-management programs

Individual or group format

Location

Individual

Home

Individual or group Group

Hospital or home Community setting

Leaflets offer a means of bridging the gap between the amount of information patients desire and the amount they receive, and can be assimilated in a clinical setting. In addition, leaflets represent a relatively low-level, low-cost method of reaching large numbers of people, although the gatekeeping role adopted by some health professionals serves to limit their potential (Barlow, Bishop, & Pennington, 1996). For example, a survey found that only 41.8% of patients attending rheumatology outpatient clinics recalled receiving an information leaflet (Barlow & Pennington, 1996). Distribution of leaflets was controlled by health professionals, many of whom felt that allowing patients free access may cause more harm than good, despite documented evidence to the contrary (Ong, De Haes, Hoos, & Lammes, 1995; Weinman, 1990). Leaflets are an effective means of improving knowledge among OA patients (Moll, 1986) and patients with mixed diagnoses of arthritis (Maggs, Jubb, & Kemm, 1996). Extending this work, a randomized, controlled study found that leaflets were effective in terms of increasing knowledge, decreasing pain and improving depressed mood among RA patients at three weeks' postintervention (Barlow, Pennington, & Bishop, 1997). Furthermore, there was no evidence that patients found the leaflets worrying. On the contrary, leaflets appeared to have a positive effect on patients' feelings and beliefs, generating a sense of reassurance, reducing isolation, and helping them to come to terms with their condition. A follow-up study has shown that the positive changes on knowledge and depression were maintained at six months. However, it is not clear whether maintenance of such improvements was influenced by participation in a telephone interview following the three week assessment. The optimal time for presenting patients with disease-related information (i.e., at diagnosis, after several years, or at repeated intervals throughout the disease course) has yet to be identified, although there are indications that patients in the early stages of their disease can feel that they are given more information than they can cope with (Lineker, Hughes, & Badley, 1995). Patients' interest in learning more about

RA does not decrease over time (Silvers, Hovel, Weisman, & Mueller, 1985) and increase in knowledge following receipt of written materials appears to be independent of disease duration (Barlow et al., 1997). Thus the common practice of restricting leaflet distribution to the point of diagnosis may be limiting the potential for positive change to those in the early stages of their disease. There is an unwritten assumption that the written word is a universally acceptable medium for communicating health-related information. The effectiveness of alternative educational media, such as audiotapes, videos, the Internet, or computer multimedia programs, remains largely unexplored in the context of arthritis.

8.18.7.2 Cognitive Behavioral Interventions Cognitive behavioral therapy (CBT) for people with arthritis focuses on pain management and comprises three components: a rationale for treatment, training in coping skills, and training for maintenance of coping skills and setbacks (Keefe & Caldwell, 1996). A range of coping skills are introduced, including relaxation, imagery, activity±rest cycling, and cognitive restructuring. Interventions are usually conducted in a group format (i.e., 5±10 people) by clinical psychologists or other suitably qualified health professionals trained in CBT techniques. Sessions typically last for two hours and are delivered on a weekly basis for 6±10 weeks. Cognitive behavioral interventions have been shown to be effective for people with RA. Compared with patients in a social support control group, patients with RA receiving CBT reported significant reductions in pain, pain behavior, anxiety, and depression (Bradley, 1996). Other controlled studies have revealed that CBT is effective in improving coping and function (Applebaum, Blanchar, Hickling, & Alfonso, 1988; Parker et al., 1988). Moreover, such improvements appear to be maintained in the longer term (Bradley et al., 1988), particularly among patients who continue to practice coping skills on a regular basis (Applebaum

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et al., 1988). CBT has been shown to enhance perceived self-efficacy among patients with RA (O'Leary, Shoor, Lorig, & Holman, 1988), the degree of self-efficacy enhancement correlating with the magnitude of improvement on pain, joint inflammation, and psychosocial functioning (e.g., depression). However, generalizability of findings is limited by the relatively small sample (i.e., 15 in the control and intervention groups respectively). Family support has been combined with CBT for people with RA (Radojevic, Nicasio, & Weisman, 1992). Four conditions were contrasted to assess potential benefits: CBT with family support, CBT without family support, family support only, and a no treatment group. The CBT interventions were found to provide more benefits compared with the other two conditions. Few studies have examined the effects of CBT among people with other forms of arthritis. However, there is evidence that CBT is more effective than arthritis education and standard care in reducing pain and psychological distress among people with OA (Keefe et al., 1990). One application of CBT among people with AS revealed improvements in depression and selfefficacy, but failed to show evidence of reduced pain or decreased disease severity (Basler, 1993). Overall, CBT appears to offer benefits to people with arthritis, particularly in relation to improvements in pain, and psychological wellbeing. CBT is often used in combination with education and self-management skills training.

8.18.7.3 Self-management Interventions Recognition of the need for self-management ability among people with arthritis has led to the development of interventions designed to enhance relevant skills and coping strategies. One such intervention, the Arthritis SelfManagement Program (ASMP), was developed for people in North America with mild to moderate arthritis (Lorig & Gonzalez, 1992). The ASMP comprises six weekly sessions of approximately two hours in length delivered in community settings by pairs of lay leaders, most of whom have arthritis. Topics covered include information on the disease process, exercise, cognitive pain management, depression, communication with medical professionals, problem solving, and goal accomplishment. The program draws on the basic tenets of self-efficacy theory (Bandura, 1982) and aims to enhance perceived ability to control various aspects of arthritis through skills mastery, modeling, reinterpretation of symptoms, and persuasion. The ASMP encourages participants to become active agents in the care of their arthritis, able to

select the self-management strategies that best suit their individual needs at a given time. Most studies of self-efficacy in people with arthritis have followed Bandura's (1977, 1982) definition of behavior-specific beliefs tailored to fit narrowly defined situations. Thus selfefficacy is measured in terms of confidence in one's ability to control various aspects of arthritis, such as pain, fatigue, and physical functioning, on a daily basis (Lorig, Chastain, Ung, Shoor, & Holman, 1989). Given equal disease severity, perception of arthritis selfefficacy may differentiate between those who are incapacitated by their disease and those who continue to live full and active lives. Randomized, controlled studies have shown that at four month follow-up, ASMP participants report a reduction in pain, a reduction in depression, and a decreased number of visits to physicians (Lorig & Holman, 1993). Moreover, a longer-term follow-up after four years showed that despite a slight increase in disability, reductions in pain and visits to physicians remained evident and there was a marked increase in self-efficacy (i.e., 17%). Levels of depression remained fairly stable. The ASMP has been successfully delivered and evaluated in controlled trials in Australia (Lindroth, Bauman, Brooks, & Priestly, 1995; Simeoni, Bauman, Stenmarh, & O'Brien, 1995), and also in Scandinavia and Canada, indicating that well-designed psychological interventions can transcend cultural differences. The first evaluation of the ASMP in a UK context (Barlow, Williams, & Wright, 1997) focused on older people with arthritis (i.e., over 55 years of age) using a pre±post-test design. Results showed that after four months, participants demonstrated significant increases in arthritis self-efficacy, positive affect, cognitive symptom management, communication with doctors, exercise, and relaxation. In addition, significant decreases were found in terms of pain, depression, and visits to primary care practitioners. This study extended previous work by including assessment of generalized self-efficacy beliefs in addition to arthritis-specific beliefs. Although generalized trait-like beliefs are relatively stable over time compared with state-like beliefs (Scheier & Carver, 1992), a small improvement on generalized self-efficacy was identified, suggesting that techniques, such as problem solving, may not be confined to managing arthritis. It seems likely that the benefits of attending an ASMP are of a wider-ranging nature than first anticipated and may influence perceived ability to cope with the environmental demands faced in everyday life as an older person with arthritis. Further randomized controlled studies are in progress to determine

Psychological Interventions whether the ASMP holds similar benefits for people of a wider age range in the UK. The effectiveness of a different form of group patient education, Self-Management Courses for People with Ankylosing Spondylitis (SMCAS), was examined in a pre±post-test design with an intervention group and a matched control group receiving standard care (Barlow & Barefoot, 1996). This intervention differs from the ASMP, by its greater emphasis on the promotion of home exercises and self-monitoring, essential aspects of disease management in AS. The SMC-AS was found to benefit participants in terms of enhanced self-efficacy, reduced disease severity, and improved psychological well-being after six months. Although significant increases in the range and frequency of exercise were evident at three weeks, these changes were not maintained over time. A positive association between severity and exercise at baseline suggests that people with greater perceived severity are more likely to adhere to therapeutic exercise. Hence, as group participants began to ªfeel betterº in terms of pain, stiffness, and psychological well-being, motivation to carry out therapeutic exercise may have declined. This intriguing finding warrants further, more detailed, exploration and has implications for the delivery of future interventions. Failure to maintain change over time through self-management interventions has been reported in controlled studies in The Netherlands (Taal et al., 1993) and Australia (Lindroth et al., 1995), where the interventions were delivered by health professionals. In contrast, long-term improvements have been reported following the ASMP delivered by lay leaders in the USA (Lorig & Holman, 1993; summarized in Table 2). It should be noted that the majority of participants in the studies reviewed by Lorig and Holman were women with OA with a mean age of 65 years. Thus it is not clear whether longterm benefits derive from the characteristics of ASMP participants (e.g., OA, age, gender), cultural differences between North Americans and Europeans, or variation in the content and context of delivery of interventions (e.g., community or hospital setting).

8.18.7.4 Interventions in JCA Evidence from the few published studies evaluating psychological interventions for children with JCA suggests this is a promising avenue worthy of greater attention in a field where treatment is ameliorative rather than curative, treatment adherence is poor, and longterm adaptation is essential. Interventions for

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children include CBT, behavioral techniques, summer camps, and family retreats. In the context of pain management, the effectiveness of CBT delivered in a series of individual sessions, was examined among 26 children (Walco, Varni, & Ilowite, 1992). Of the 13 children who completed the program, pain ratings were improved in the short term and at six month follow-up. Using similar methods but with the addition of thermal biofeedback and autogenic exercises (e.g., positive self-statements and relaxing imagery), Lavigne et al. (1992) found improved pain ratings among four of the eight child participants postintervention and at six month follow-up. These findings were confirmed by maternal reports of children's pain and pain behavior. While indicating the potential of CBT for influencing pain management in children, generalizability is limited by the small samples, high attrition rates, and reliance on parametric statistical procedures in small data sets. The efficacy of a parent-managed behavioral (token) reinforcement program designed to improve the medication compliance of a 14year-old boy with juvenile rheumatoid arthrits was examined in a withdrawal (single subject) design (Rapoff, Purviance, & Lindsley, 1988a). Results showed increased compliance, clinical improvements (assessed by a rheumatologist), and improvement on parental ratings of symptoms. In an attempt to reduce the complexity and time-consuming nature of token reinforcement programs, Rapoff, Purniance, and Lindsley (1988b) used more simple behavioral strategies (e.g., self-monitoring and positive verbal feedback) combined with education among three female patients, aged 3, 10, and 13 years. At baseline, medication compliance increased for two patients but showed no change for the third patient. Moreover, for all three patients, compliance had decreased at four month follow-up, suggesting that long-term maintenance may require either continuous intervention or regular monitoring. It should be noted that the high level of compliance achieved by the youngest child may reflect the parents' attitudes to medication more than the beliefs and behaviors of the child. A systematic replication of these techniques with three female patients, two with systemic lupus erythematosus and one with dermatomyositis, showed improved compliance during the intervention and at six month follow-up (Pieper, Rapoff, Purviance, & Lindsley, 1989). The impact of a very different intervention, a summer camp designed to foster independence and to promote disease self-management, was examined among children and young people aged between 7 and 20 in an uncontrolled,

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Arthritis Table 2 Summary of long-term outcomes of controlled, self-management interventions.

Context Tutors Follow-up time Outcomes Pain Disability Depression Visits to physicians Self-efficacy: pain Self-efficacy symptoms: other Internal locus of control

Taal et al. (1993)

Lorig and Holman (1993)

Lindroth et al. (1995)

Hospital-based Health professionals 14 months

Community-based Lay people with arthritis 4 years

Hospital-based Health professionals 5 years

NS NS NS NA NS

+ NS + + +

+ NS NA NA NA

NS NA

+ NA

NA NS

+ = positive change in intervention group, NS = no significant difference between groups, NA = not assessed.

pre±post test design (Stefl, Shear, & Levinson, 1989). Given these aims it is surprising to note that no measures of self-management were included in the assessment battery. Results showed that children's locus of control and selfesteem had significantly improved immediately following the one week camp, but these changes were not maintained at six months. Acknowledging the fact that management of JCA occurs within a family context, Hagglund et al. (1996) examined the efficacy of a three day family retreat held at a ªresortº hotel among 39 families. The retreat included formal educational and therapeutic sessions (e.g., coping with chronic illness, enhancing self-esteem) and family-oriented recreational activities. Caregivers reported that their children's internalizing behavior problems were significantly reduced six months after the retreat and mothers reported reductions in strain on family leisure and occupational functioning at six month follow-up. Mothers' psychological distress remained stable. A number of important methodological limitations were noted, such as the lack of a control group and the difficulty in controling for intervening variables between initial and follow-up assessments. There are indications that psychological interventions may offer benefits to children and their families. However, a number of methodological issues remain to be addressed, such as the small sample sizes, lack of controlled studies, dearth of validated measuring instruments for children, and scarcity of resources available for nonmedical interventions. Furthermore, it has been argued that pain is not always viewed as a prominent issue in JCA (Lavigne et al., 1992). Until such time as psychological well-being, including the subjective experience of pain, is accepted as of equal importance to

physical well-being, psychological interventions for children with JCA will continue to lag behind those for adults. Descriptive studies employing qualitative methodologies may allow greater insight into the experience of JCA from a child's perspective and would provide a useful framework for developing successful interventions in the future.

8.18.7.5 Effectiveness of Psychological Interventions The main benefits of psychological interventions appear to center on promoting positive mood, reducing depression, and fostering confidence in self-management (i.e. self-efficacy). For example, Basler (1993), showed that the main effects of a cognitive-behavioral program were on well-being (e.g., depression) and selfefficacy among people with AS. Similarly, evaluations of the ASMP report positive effects on depression and self-efficacy (Lorig & Holman, 1993). Hence, although levels of disability and pain may remain fairly stable, participants feel better able to cope. The effectiveness of psychological interventions is usually assessed over and above the effects of medical interventions. Contrary to clinical trials, participants are not required to cease their standard treatment for a wash-out period prior to entering the intervention. Washout periods serve to increase the probability of finding a significant effect in clinical trials, while maintenance of medication during an education intervention limits the potential for improvement. A review of arthritis patient education studies (including psychologically based interventions) (Hirano, Laurent, & Lorig, 1994) suggests that clinical studies of the effects of

Conclusions and Future Issues medication alone demonstrate a 20±50% improvement on health status, whereas educational interventions provide an additional 15±30% improvement. A meta-analysis comparing the effects of educational interventions and NSAIDs on pain and functional disability in OA and RA concluded that since most patients in education trials are being treated with medications, the sizes of the effects of these trials represent additional, marginal effects of patient education beyond those achieved by medication alone (Superio-Cabuslay, Ward, & Lorig, 1996). The weighted average effect sizes for pain, disability, and tender joint count in educational interventions were 0.17, 0.03, and 0.34, respectively, compared with 0.66, 0.34, and 0.43 for NSAID trials. Interestingly, the authors found evidence of a publication bias: smaller NSAID trials reporting that little effect or negative effects were not represented in the meta-analysis. Hence, the averaged effect sizes for NSAID trials may be inflated. 8.18.8 PROFESSIONAL ISSUES Few rheumatology units have a resident psychologist dedicated to the care of people with arthritis. Rather, psychological input tends to revolve around provision of remedial help for acute problems or ªproblem patients.º Parker and Wright (1995) argue for an extension of the traditional rheumatological approach to embrace genuine rehabilitation strategies, designed to maximize psychological functioning. Indeed, the interactions between symptoms of arthritis, psychosocial well-being and disability suggest a broader, more holistic approach to healthcare may promote positive outcomes. For example, depression in RA may be alleviated by treatment interventions designed to reduce life stress, enhance self-efficacy, and minimize physical disability (Wright et al., 1996). As knowledge of the psychosocial impact and the effectiveness of psychological interventions continues to grow, the demand for suitably qualified psychologists will escalate accordingly. Availability of adequate resources may be the crucial factor determining whether psychologists are able to take their place in the search to facilitate positive adaptation to the challenge of arthritis. 8.18.9 CONCLUSIONS AND FUTURE ISSUES Clearly, psychology and psychologists are key players in the theater of life with arthritis. The chronic, painful, disabling nature of the condition combined with an unpredictable disease course of exacerbations and remissions,

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necessitates a continuous process of adaptation. In the long term, the majority of people appear to adapt with some degree of success, although many experience feelings of anxiety, depression, loss of control, and helplessness along the way. There is evidence that psychological factors are more important predictors of perceived disability than disease-related variables, such as duration. Further empirical applications of psychological theories are needed to elucidate the complex relationships between disease parameters, behaviors, and emotional wellbeing, including coping ability. Knowledge of psychological factors in RA is accumulating. Most studies of psychological impact have been based on convenience samples of RA patients recruited through rheumatology clinics, who may be those with more severe disease or those experiencing an acute phase (i.e., a flare up). Thus little is known about prevalence or correlates of depression among community-based samples or people with milder arthritis. We need to know more about the psychological well-being of people with other forms of arthritis, such a OA, JCA, or scleroderma. Further knowledge of the psychological profile of people with OA may be particularly important given the aging demographic profile of the population. Similarly, more information on psychological adjustment among ethnic minorities, carers, and other family members is needed. The challenge for psychologists is to discover methods of identifying those likely to experience difficulty, regardless of their arthritis type, and to determine the most effective intervention strategies to aid psychological well-being. The role played by positive well-being has not been extensively examined. Factors promoting positive well-being among people with arthritis may not necessarily be the same as those that serve to reduce negative reactions. The role of humor and positive experiences require further exploration and may help to illuminate ways in which psychologists can help people with arthritis to move forward in attempts to resolve the challenge of arthritis. Psychological assessment and research would be enhanced by the availability of a greater range of reliable measuring instruments, validated for use among children, adolescents, and people with forms of arthritis other than RA. Specific instruments, used in combination with generic psychological measures, would enable comparisons to be made with the general population, acute illness, and other chronic disease groups. Thus, psychologists working in the field of arthritis could apply techniques found to enhance well-being in other healthrelated arenas.

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There is a growing body of evidence demonstrating that psychological interventions are effective in helping people with arthritis to manage and cope better with their condition. Clearly, there is a great need for more psychological interventions, for all people with arthritis, regardless of the degree of severity and regardless of age. Interventions for children and adolescents are rare but appear to have the potential for promoting well-being. Group interventions hold a number of benefits for participants, including the opportunity to share their experiences with similar others in a nonthreatening environment. The potential for information technology to be harnessed as a means of providing psychological support to greater numbers of people remains to be explored. Psychologists and psychological theories have an important contribution to make to the development, delivery, and evaluation of interventions. There is an overwhelming need to persuade the purchasers and providers of services that psychologists have a fundamental role to play in empowering people with arthritis to take control of their lives. ACKNOWLEDGMENT I would like to thank Trudy Brockway for her valuable assistance in preparing this manuscript. 8.18.10 REFERENCES Affleck, G., Tennen, H., Pfeiffer, C., & Fifield, J. (1987). Appraisals of control and predictability in adapting to a chronic disease. Journal of Personality and Social Psychology, 53(2), 273±279. Anderson, K. O., Bradley, L. A., Young, L. D., McDanial, L. K., & Wise, C. M. (1985). Rheumatoid arthritis: Review of psychological factors related to etiology, effects and treatment. Psychological Bulletin, 98, 358±387. Applebaum, K. A., Blanchar, E. B., Hickling, E. J., & Alfonso, M. (1988). Cognitive behavioral treatment of a veteran population with moderate to severe rheumatoid arthritis. Behavior Therapy, 19, 489±502. Badley, E. M., & Tennant, A. (1993). Disablement associated with rheumatic disorders in a British population: Problems with activities of daily living and level of support. British Journal of Rheumatology, 32, 601±608. Bandura, A. (1977). Self efficacy: Toward a unifying theory of behavioral change. Psychological Review, 84, 191±215. Bandura, A. (1982). Self-efficacy mechanism in human agency. American Psychologist, 37(2), 122±147. Barlow, J. H. & Barefoot, J. (1996). Group education for people with arthritis. Patient Education and Counseling, 27, 257±267. Barlow, J. H., Bishop, P. & Pennington, D. C. (1996). How are printed patient educational materials used in outpatient clinics? Insight from rheumatology. Health Education Journal, 55, 275±284. Barlow, J. H., & Cullen, L. (1996). Parenting and ankylosing spondylitis: ªI can't see where my baby is feeding'. Disability, Pregnancy and Parenthood International, 16, 4±5.

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.19 Spinal Cord Injuries PAUL KENNEDY Stoke Mandeville Hospital, Aylesbury, UK 8.19.1 THE INJURY 8.19.1.1 History 8.19.1.2 Spinal Cord 8.19.1.3 Epidemiology 8.19.1.4 Etiology 8.19.1.5 Incidence and Prevalence 8.19.1.6 Rehabilitation Management 8.19.2 PSYCHOLOGICAL IMPACT 8.19.2.1 Emotional Reactions 8.19.2.2 Suicide and Indirect Self-destructive Behavior 8.19.2.3 Neuropsychological Concerns 8.19.2.4 Chronic Pain 8.19.2.5 Secondary Complications 8.19.3 INTERPERSONAL AND SOCIAL ADJUSTMENT 8.19.3.1 Sexual Dysfunction 8.19.3.2 Impact on Relationships 8.19.3.3 Employment After Injury 8.19.4 PSYCHOLOGICAL ADJUSTMENT AND QUALITY OF LIFE

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8.19.5 COPING WITH SPINAL CORD INJURY

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8.19.6 PSYCHOLOGICAL INTERVENTIONS 8.19.6.1 Initial Contact 8.19.6.2 Management of Emotional Concerns 8.19.6.2.1 Intervention methods 8.19.6.2.2 Cognitive-behavioral strategies 8.19.6.2.3 Coping effectiveness training 8.19.6.3 Skills Training 8.19.6.4 Rehabilitation Planning and Adherence 8.19.6.5 Sexual Counseling 8.19.6.6 Chronic Pain Management 8.19.6.7 Biofeedback 8.19.7 PROFESSIONAL ISSUES

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8.19.8 LIFE SPAN AND SOCIETAL RESPONSES

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8.19.9 REFERENCES

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which records 5000-year-old cases of spinal cord injury (Hughes, 1988). An unknown ancient Egyptian physician summed up one of the cases as follows: ªHaving a dislocation in a vertebra of his neck while he is unconscious of his two legs and his two arms, and his urine dribbles. An

8.19.1 THE INJURY 8.19.1.1 History The first descriptions of spinal cord injuries are found in the Edwin Smith Surgical Papyrus 445

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ailment not to be treated.º The first text book devoted exclusively to the spinal cord was written by the Dutch anatomist Gerard Blasius (1625/1692), in Anatomy Medullae Spinalis Et Nervorum. The initial pessimism recorded 5000 years ago, that this was not an ailment to be treated, persisted until 1944 when the first rehabilitation programs were established in Stoke Mandeville Hospital in the UK by Sir Ludwig Guttmann, and in West Roxbury, MA in the USA by Donald Munro. Up until then, 80% of people with this condition died in the first few weeks (Guttmann, 1976). Since the 1940s, both acute and long term survival rates for persons with spinal cord injury have improved dramatically (DeVivo & Stover, 1995). Now, with life expectancy greatly enhanced, and the availability of rehabilitation centres in most developed health care systems, quality issues, rather than basic survival, have become the main concern.

8.19.1.2 Spinal Cord The spinal cord is part of the central nervous system and is the main conveyance for sensory, motor and autonomic neural information. It is encased in the spinal vertebrae and extends from the brain stem to the cauda equina. An injury to the spinal cord occurs when sufficient force causes the cord to be compressed, lacerated or stretched and may be associated with a fracture or fracture-dislocation of the vertebral column and displacement of the intervertebral disks. These injuries are often the consequence of sudden impact as with car accidents and falls. Nontraumatic damage may be caused by pressure on the spinal cord, as in the case of tumors, or an interruption of the blood supply to the spinal cord. Neurological losses will depend upon the completeness and level of the injury. Cervical (neck) injuries may result in tetraplegia (quadriplegia). Injuries to the thoracic, lumbar and sacral levels (upper, middle, and lower back) may result in paraplegia. Fifty-three percent of injuries are neck injuries, and 47% are back injuries (Bedbrook, 1981). A complete injury is one in which all motor and sensory functions are lost below the level of injury as well as the loss of control of visceral functions such as bladder, bowel and sexual functions. In paraplegia, the legs and the lower trunk muscles are impaired, whereas cervical injuries can result in the loss of function in the hands, arms, shoulder and diaphram, as well as the legs and lower trunk. Complete injuries above the seventh cervical segment may preclude the possibility of independent living. Sensory losses

are similar to the area of motor loss and include the loss of touch, pressure, temperature sensation and position sense. The loss of sexual sensation and responsivity, and control of bladder and bowel function, are common to all complete lesions above the sacral roots. Incomplete injuries may result in partial neurological impairment. In the American National SCI data base, Go, DeVivo, and Richards (1995) recorded that the most common discharge neurological category was incomplete tetraplegia (31%) followed by complete paraplegia (26%), complete tetraplegia (22%), incomplete paraplegia (20%), and complete recovery (1%). The spinal cord is part of the central nervous system and, once damaged, nerve cells do not regenerate (Guttmann, 1976). Complications postdischarge include problems associated with pressure ulcers, urinary tract infections, respiratory disorders, muscular spasm, and chronic pain. 8.19.1.3 Epidemiology From the American National SCI data base of over 66 000 people (Go, DeVivo, & Richards, 1995), 82% of the sample were male and 18% female. Kennedy (1995) in a British sample found 81% of admissions to be male and 19% female. Population-based studies have revealed that spinal cord injury occurs most frequently in teenaged persons and young adults aged between 16 and 30 years, the mean age being 30.7, and the most frequently occurring age at injury being 19. Fifty-three percent of people with spinal cord injury are single, 31% are married and 16% are either divorced, separated or widowed (Go, DeVivo, & Richards, 1995). 8.19.1.4 Etiology In general, in most developed economies road traffic accidents account for approximately 50% of spinal cord injuries, approximately 25% are caused by falls and 20% are caused by sporting injuries (Kennedy, 1995; Stover & Fine 1986). Most sporting injuries are caused by diving into the shallow end of a swimming pool. In the USA, a significant proportion of injuries are caused by acts of violence (accounting for almost 17% of injuries). In developing economies, road traffic accidents are less frequent, with increases in agricultural accidents and falls. 8.19.1.5 Incidence and Prevalence The annual incidence of spinal cord injury in the UK, as for most other European countries, is between 10 and 15 per million. In the USA it is

Psychological Impact thought to be nearer 30 per million and in Japan, 27 per million. There are an estimated 40 000 people in the UK and 200 000 people in the USA with spinal cord injuries. Life expectancy estimates vary: for a young person with an incomplete injury the relative survival rate is 69%, but for complete tetraplegics over 50 it is estimated to be 33%. Primary causes of mortality include pneumonia, septicemia, renal failure, and pulmonary emboli which are more common in the first few months post injury. Saturday and Sunday are the high risk days for having a spinal cord injury, particularly during the afternoon, evening and early hours of the morning. Most injuries occur during the months of July, August, and June and are least likely to occur in February and January. 8.19.1.6 Rehabilitation Management Most people are transferred to a specialist spinal cord injury treatment and rehabilitation center shortly after the onset of the disorder. Once the fracture is stabilized either through internal or external fixation, or postural reduction (bedrest), the person begins a period of rehabilitation which can last between three months and one year, depending on the level of injury and the individual's personal circumstances. DeVivo, Whiteneck, and Charles (1995) estimate that rehabilitation costs US$1.9 million (1992 dollars) of direct expenses for a 25-year-old with a complete C4 spinal cord injury. In the American Model Spinal Cord Rehabilitation Centers the overall mean length of stay in acute and rehabilitative care was 3.8 months. An informal internal audit in Stoke Mandeville Hospital between 1995 and 1996 found the overall length of stay for acute management and rehabilitation to be 4.9 months.

8.19.2 PSYCHOLOGICAL IMPACT Given the relatively young age at onset and in terms of potential years of life changed, the spinal cord injury presents a formidable challenge for the individual. It may require major adjustment to physical, psychological and social domains. Much has been said about its devastating nature, but more recently researchers (Kennedy, 1995; Menter & Hudson, 1995) using longitudinal approaches indicate that many survivors of spinal cord injury go on to live satisfying, meaningful and rewarding lives. The extent to which people manage the consequences of their disabilities will depend on internal factors, such as self-efficacy and coping

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styles, and external factors, such as prevailing social attitudes and social support. The social context and associated cultural beliefs underpinning these domains are important given that it is not the specific disability per se which causes most of the individual's difficulty, but existing within physical, psychological and socially disabling environments (Swain, Finkelstein, French, & Oliver, 1993). Following the spinal cord injury, the person has usually survived a life-threatening incident and then has to learn to deal with the changes in their physical needs and concurrently address domestic, social, and vocational issues. The immediate impact of the injury may be compounded by disturbed consciousness because of the brain injury and medication, severe pain, and sensory deprivation. Trieschmann (1988) pointed out that, in the acute phase, psychological disturbance may result from sensory responses to the injury, the hospital environment, and the procedures utilized to enable survival of the person, rather than consideration of the spinal cord injury itself.

8.19.2.1 Emotional Reactions Emotional reactions to a spinal cord injury are typified by increased levels of depression, anxiety (and associated avoidance behaviors), with some indication of temporary increases in anger and hostility. However, negative emotional responses are neither universal or necessary for successful reintegration and rehabilitation. Earlier researchers utilized clinical impressions and empirical studies to construct stage models that account for impact and adjustment. Depression is considered to be a normal part of the adjustment process and is readily observed. Many have held the view that all spinal cord injured patients must at some point suffer from depression (Nagler, 1950; Siller, 1969). Indeed, they suggested that if depression was not observed then they considered the patient was in denial and that for healthy adjustment depression is a stage that must be passed through. These models could consist of two stages (Guttmann, 1976), three stages (Stewart, 1977), four stages (Rigoni, 1977), and five stages (Bracken & Shepard, 1980; Hohmann, 1975). Stages generally include shock, denial, depression, anger, and conflict resolution. These models may have had some utility in recognizing and normalizing emotional reactions. However, there is little empirical validation of the sequence, duration, or existence of the stages, or indeed that they are helpful in fostering adjustment (Morris, 1992; Wortman & Silver, 1989). Furthermore, such

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unrealistic assumptions held by healthcare professionals and the social network may also unnecessarily exacerbate feelings of distress among those who encounter loss and lead to the self-perception that their own responses are inappropriate and abnormal under the circumstances. A brief clinical anecdote may illustrate this point. In 1985 I was approached by a patient who had acquired a complete traumatic spinal cord injury of the fifth cervical segment. He enquired of the possibility of providing him with help to become depressed! He was an Olympic gold medallist and intended to complete his rehabilitation with distinction. He had been told by a counsellor that, as he had not been depressed, this meant he had not ªcome to termsº with his disability. He had spent a number of weeks trying to become depressed without success and my intervention was to endorse and confirm the appropriateness of his effective coping strategies and tell him that depression was not a component of our rehabilitation program. There is no evidence that a pre-injury personality trait exists, or that there is a specific personality characteristic associated with the onset of the spinal cord injury (Fordyce, 1964; Trieschmann, 1988). The Minnesota Multiphasic Personality Inventory (MMPI) has been used in a number of early studies of psychological impact. Boureston and Howard (1965) compared MMPI profiles for persons with spinal cord injuries, multiple sclerosis, and rheumatoid arthritis. They found that those with spinal cord injury had the least emotional distress, the least anxiety, and the least concern with traumatic problems. Taylor (1967) administered the MMPI to a group of persons with spinal cord injury within a month of injury. The profiles were within normal limits with no evidence of marked depression or anxiety. In a small but detailed study of depression, Lawson (1978) followed 10 tetraplegics for their entire rehabilitation, and analyzed staff and patient ratings of depression. Over this period he found the level of depression decreased with time, and that high levels of depression were associated with highly personalized significant events. Fullerton, Harvey, Klein, and Howell (1981) investigated depression in the study of 30 patients. They found that 30% of those followed up developed a depressive disorder after injury. This is a higher incidence than that reported in the general population which is estimated to be about 6% using the same criteria (Weisman, Myers & Harding, 1978). Judd, Stone, Webber, Brown, and Burrows (1989) assessed 71 patients with spinal cord injury in their acute and rehabilitation phases of treatment. Patients completed the Beck depres-

sion inventory (BDI) weekly and a clinician completed the Hamilton rating scale for depression. Fourteen patients (i.e. 20%) met the Diagnostic and statistical manual of mental disorders (3rd ed., DSM-III) criteria for major depressive disorder, a further 13 patients had transient periods of depressed mood, whereas the majority of patients showed no clear evidence of depression. Richards (1986) investigated 36 persons with spinal cord injury at three weeks, three months and at one year following discharge using the BDI and a selfreport questionnaire. Twenty-nine able bodied persons completed the same at similar time intervals. Immediately following discharge, moderately increased depression was found in the spinal cord injury group, but after a year this difference had gone. These studies found that depression, although common, does not necessarily follow the spinal cord injury and tended to be resolved either by the time of discharge, or within a year of discharge. It would appear that the rates of depressive disorder have been found to be between 25% and 30% per sample, less than previous literature suggested but more than the general population. Although most interest in immediate psychological impact in spinal cord injury has focused on depression, other emotional reactions have been investigated. Cook (1979) investigated 118 persons with spinal cord injury less than one year following their injury using the State±Trait Anxiety Inventory (STAI) and the Mini-mult (an abbreviated form of the MMPI). Comparisons with normative data revealed no significant anxious or depressive reactions in the spinal cord injury group. Bracken, Shepard, and Webb (1981) examined 190 patients on discharge from acute hospitalization using a number of specific measures of anger, anxiety, and depression. Although appreciating the limitations in comparing the results of this study with more standardized studies, their results suggested increased levels of anger, anxiety, and depression, which continued following discharge and regulated that these problems would interfere with community integration. Kennedy, Lowe, Grey, and Short (1995) compared a group of 41 patients six weeks post injury with a group of 30 respondents between four and seven years post injury. They found no differences between the group scores on the BDI, the Beck Hopelessness Inventory, the STA, the intrusion subscale of the impact of Events scale and scale 7 (psychological distress) of the Psychosocial Adjustment to Illness scale. In line with previous findings, 34% of the inpatient group and 37% of the post discharge group scored above the clinical cut-off point of 14 on the BDI.

Psychological Impact Hancock, Craig, Dickson, Chang, and Martin (1993) implemented a longitudinal study exploring depression and anxiety as measured by the BDI and the STAI of three time points following injury. They compared 41 spinal cord injured patients with a matched able-body control group. Whereas 25% of the spinal cord injured group were anxious and depressed, only 5% of the control group were anxious and 3% depressed. Trieschmann (1988) critically reviewed the published literature and emphasized the need to adopt a more longitudinal method of enquiry, elaborating on not only aspects of the psychological impact following the injury, but exploring the relationship between psychological well-being, coping strategies, and adjustment. In response to these recommendations, Kennedy (1995) implemented a longitudinal study following up a cohort of traumatic spinal cord injured people from onset of injury through rehabilitation and up to two years post hospital discharge. Respondents were assessed on nine observational periods on measures of depression, hopelessness, anxiety, and general psychological distress. The measures showed no change over time, but some reduction in psychological morbidity was noted following discharge. The mean score for inpatients on depression fell within the mild/ moderately depressed range on the BDI and two years post discharge was found to be within the normal range. However, this longitudinal study also highlighted the relative consistency of those respondents who were initially identified as having problems with anxiety and depression. The number of respondents going above the clinical cut-off scores for depression and anxiety (i.e., BDI greater than 14 or STAI greater than 48) remained fairly stable across the nine observational periods, demonstrating that for this sample a group between a quarter and a third can remain psychologically vulnerable and stressed from onset of injury to community placement two years post discharge. However, it is arguable that this may have overestimated psychological morbidity in that those who responded may represent a more vulnerable subsection of the sample. 8.19.2.2 Suicide and Indirect Self-destructive Behavior In a study of 9135 persons injured between 1974 and 1984, DeVivo, Black, Richards, and Stover (1991) found that 50 people had committed suicide (6.3% of deaths) producing a standard mortality ratio (SMR) of 4.9 (i.e., ratio of observed to expected suicides). They concluded that although suicide occurred more often in the spinal cord injured population, in an

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absolute sense it is a rare event. Those with the highest SMR were those with neurologically complete paraplegia. Charlifue and Gerhart (1991) reviewed 489 deaths in a population of 5200 persons with spinal cord injury and found that 9% of the deaths were caused by suicide. These rates of suicide, as a percentage of total deaths, may underestimate the true scale of the problem in a spinal cord injured population. Persons with spinal cord injury were more likely to die than the general population from a number of medical problems. Charlifue and Gerhart (1991) produced a model predicting 81% of the variance associated with suicide and factors included age (with risk increasing with age), injury from a fall, a complete neurological lesion, history of family fragmentation, alcohol abuse, and social withdrawal. Twenty percent of suicides occur in the first year after injury, and 70% occur between one and five years. In the UK, Charlifue et al. (1996) found that of 909 deaths (between 1943 and 1990) 22 were caused by suicide, producing an SMR of 2.4. Suicide accounts for deaths by direct selfdestructive behavior, but in spinal cord injury self neglect can equally be fatal. Health maintenance following spinal cord injury needs to be disciplined and consistent. Failure to do so may result in problems such as pressure sores or contractures. Wilcox and Stauffer (1972) found that suicide or self-neglect accounted for 43% of the 50 recorded deaths in a group of 423 patients. Nehemkis and Groot (1980) used the term ªindirect self-destructive behaviorº to describe this type of noncompliance. They explored in detail the autopsy protocol of all spinal cord injured patients who died between 1971 and 1976. Of the 52, they found that 49% of the cases were certified as natural, whereas 33% were considered to have an indirect selfdestructive behavioral contribution to the cause of death. Therefore, in summary, the onset of spinal cord injury is associated with elevations in general emotional distress. The sudden onset of the injury is often associated with periods of shock, numbness, disbelief, and denial. Depression and anxiety may emerge as part of a normal and rational response but were neither necessary nor sufficient for effective adjustment. Depression may emerge as part of a normal response to the perceived losses. Anxiety occurs when people believe that their coping strategies are exhausted or are insufficient in dealing with a current or anticipated situation. Adjustment may be further complicated by selfdestructive behavior, but suicide rates are only slightly higher than in the general population, although indirect self-destructive behavior is more common.

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8.19.2.3 Neuropsychological Concerns There is a growing awareness of the need to assess and identify neuropsychological impairment, which complicates adjustment in many chronic health problems (Kelly and Doty, 1995). Reported prevalence figures for neuropsychological deficits in patients with spinal cord injury vary. Estimates of the frequency of cognitive deficits range between 10% and 60% (Davidoff, Roth, & Richards, 1992; Morris, 1992). A variety of factors contribute to this frequency. The most often cited reason is concomitant traumatic brain injury which may be as high as 50% (Davidoff et al., 1988). The long term cognitive effects of alcohol and substance abuse may also contribute to cognitive deficits in this population (Heinemann, Keen, Donohue, & Schnoll, 1988). Deficits are generally diffuse in nature but the specific deficits that hinder rehabilitation include difficulties with attention, speed of information processing, memory, concentration, producing problem solving per judgment, and impaired social appropriateness (Morris, Roth & Davidoff, 1986). 8.19.2.4 Chronic Pain Chronic pain is a prevalent and significant complication of spinal cord injury, the prevalence of which is estimated to be between 25% and 45% (Britell & Mariono, 1991; Kennedy, Frankel, Gardner, & Nuseibeh, 1997.). In a survey completed by Rose, Robinson, Ells, and Cole (1988) 36% of 885 out-patients with spinal cord injury suggested that it was pain severity and not their physical disabilities that prevented them from returning to work. This is a major factor which complicates adjustment and compounds the individual's sense of burden. 8.19.2.5 Secondary Complications People with spinal cord injury have a lifelong risk of developing a pressure ulcer (sore) and Fuher, Garber, Rintala, Clearman, and Hart (1993) estimated the prevalence of pressure sores to be 33%. Yarkony and Heinemann (1995) in their review of 66 000 people with spinal cord injury and managed under the Model System Care program found the prevalence of pressure sores to be 32%. Seekins, Clay, and Ravesloot (1994) investigated the secondary complications in a community sample of adults with physical disabilities, of whom 20% had a spinal cord injury. Significant complications included mobility difficulties, chronic pain, spasticity, bladder and bowel dysfunction, and pressure sores. Ivie and DeVivo (1994) attempted to identify the factors

predicting unplanned hospitalizations post injury. They found that measures of functional assessment (the Functional Independence Measure) rather than neurological impairment were more predictive, and that a greater risk of readmission was found with those who were unemployed. Seekins et al. (1994) suggest three components aimed at prevention and management. The first involved wellness promotion and physical reconditioning, the second included behavioral management procedures to address chronic pain, sleep disturbance, and depression, and the third involved increasing physical access to the resources of the community. 8.19.3 INTERPERSONAL AND SOCIAL ADJUSTMENT 8.19.3.1 Sexual Dysfunction Sexual dysfunction following spinal cord injury has received increased attention since the 1970s. Sipski and Alexander (1992) reviewed this literature and highlighted that between 70% and 93% of males with complete upper motor neuron lesions retain reflex erections, but none sustained psychogenic erections. Ejaculation was noted to occur in 4% of these patients. Of those with lower motor neuron lesions, 26% were able to sustain a psychogenic erection, but none experienced reflex erections. Eighteen percent of this population were able to ejaculate. Therefore, in general, as most are upper motor neuron lesions, men lose the ability to produce a psychogenic erection, while retaining a reflexogenic capacity. Few experience orgasm and most have impairment in the ability to move during intercourse. Despite the increased interest in research, little was known of the physiology of female sexual dysfunction following spinal cord injury other than a vague suggestion that female sexual function is analogous to that in males. However, Sipski, Alexander, and Rosen (1995) report on the first laboratory-controlled analysis of female sexual response and elaborated on the nature of the female reflex vasocongestion. Despite these physiological changes, most women returned to sexual involvement within 12 months of injury (Alexander, Sipski, & Findlay, 1993) and 57% rated post injury sexual relations as satisfying or at least as satisfying as before (Siosteen, Lundqvist, Blomstrand, Sullivan, & Sullivan, 1990). However, the frequency of penis±vagina intercourse decreases with an associated increase in sexual activities, related to areas above the level of the spinal cord injury. Siosteen et al. (1990) found that positive sexual adjustment post injury was most closely related to a higher frequency of intercourse, a will-

Psychological Adjustment and Quality of Life ingness to experiment with alternative modes of sexual expression, and that young people tended to have a better sexual adjustment than older. Fertility is also compromised in males as the result of the neurological impairment and the nerves involved in emission and ejaculation. It also results in diminished concentration and motility of sperm, Linsenmeyer and Perkash (1991). Currently, assistive techniques aimed at producing ejaculates are being developed. After an initial period of amenorrhoea (Comarr, 1966) women remain fertile. 8.19.3.2 Impact on Relationships The buffering role of social support is demonstrated throughout this volume. It is not surprising that the impact of the injury on relationships has been the subject of investigation. However, to date there is much ambiguity and equivocation in the findings. Siller (1969) suggests that divorce rates in pre-injury marriages were higher than in the general population, whereas Abrams (1981) summarized 30 years of the literature relating to marital stability, sexual interaction and marital satisfaction, and concluded that paraplegia does not seriously impair marital functioning. Dijkers and Abela (1993) found that the divorce rate for the first five years post injury was higher than expected given the general population, age, sex, and specific divorce rates. In a British study, Guttmann (1964) concluded that post injury marriages had a better rate of success. However, DeVivo and Fine (1985) followed 276 patients for three years post injury and reported that those patients had significantly fewer marriages and fewer divorces than would be expected according to base rates in the US population. However, these studies cover only the first few years post injury and it is possible that they reflect the acute disruption resulting from the injury and that the trends might not hold over a longer period of time. Crewe and Krause (1988) sent questionnaires to 122 married individuals with spinal cord injury and compared persons in pre-injury marriages and those in post injury marriages. The mean time since injury for the pre-injury marriage group was 13 years, and for the postinjury marriages, 18 years. They obtained basic demographic information and used a modified version of the Life Satisfaction Questionnaire (LSQ) to examine satisfaction and adjustment. They concluded that marriages which survived for years after one partner experiences a spinal cord injury are generally viewed as satisfying and comfortable. Yet when compared with marriages established after the onset of disability, differences do emerge in that couples in

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post injury marriages were more likely to be employed, go out socially, and report higher levels of satisfaction with life. These discrepancies held even when age differences were statistically controlled. In a later study, Crewe and Krause (1992) suggested that it may be that only individuals who are especially likeable, active and well adjusted, succeed in attracting partners, and as a consequence post injury marriages are happier. The US National SCI database contains the most up-to-date and systematically collected data on marital status (Dijkers, Abela, Gans & Gordan, 1995). They concluded that changes in marital status tended to be highest in the earlier years post injury and that over time there is an increase in both divorces and marriages. Marriage failures were most common in the younger age group (16±30). In this study of marital relationships in a cohort of 60 000 people with spinal cord injury, they found that new marriages were less stable than pre-injury marriages. This contradicts previous findings and it may be that those in pre-injury marriages were older than those in post injury marriages. Further analysis is required on this data; controls for age at injury and age at time of divorce are required. 8.19.3.3 Employment After Injury When Guttman was asked to define rehabilitation in a BBC UK television documentary (BBC, 1966), he defined it as ªmaking the individual a tax payer again.º The return to fulltime gainful employment is a useful definition of successful rehabilitation. Re-employment figures after spinal cord injury reported in the literature vary tremendously. Trieschmann (1988) reports a range of return to competitive employment varying between 13% and 48%. Dijkers et al. (1995) in a recent review of the literature gives the following generalization: paraplegics have a higher re-employment rate than tetraplegics; those who are younger are more likely to become employed; pre-injury vocational experiences predict post injury employment; minority groups are less likely to become employed; and involvement in a vocational rehabilitation program makes employment more likely. Creek, Moore, Oliver, Silver, and Zarb (1988) found in Britain that, although 97% of people were employed at the time of the injury, only 50% were in employment at a five year follow-up. 8.19.4 PSYCHOLOGICAL ADJUSTMENT AND QUALITY OF LIFE Trieschmann (1988) described rehabilitation as a life long process of learning to live with a

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disability in one's own environment, suggesting that there is no end point for adjustment and that it should improve over time. Factors which influence adjustment, such as personality characteristics, level of injury, and social support, have been investigated. There is no evidence that psychological well-being and positive adjustment are predicted by the level of injury (Cook, 1979; Kennedy, Lowe, et al., 1995; Kennedy, Gorsuch, & Marsh, 1995). Krause and Crewe (1990) followed a cohort of people with spinal cord injury from 1977 until 1984 and used the LSQ to confirm research findings that quality of life appears to improve over time. The LSQ assesses activity, adjustment, interpersonal satisfaction and economic satisfaction. Positive levels of satisfaction in psychological status were maintained, with increases in marriage rates and hours spent working. Woodrich and Patterson (1983) studied a group of 251 people who ranged from six months to two years post injury and they found a strong positive correlation between time post injury and acceptance of disability (as measured by the Acceptance of Disability Scale (Linkowsky, 1971). They found that females were more accepting than males, younger people were more accepting than older people, and they did not find an association between acceptance of disability and level of injury or ethnic origin. Whiteneck et al. (1992) reviewed the mortality, morbidity, health, functional and psychosocial outcomes of 834 individuals with long term spinal cord injuries. Not surprisingly, they found that functional status declined with the ageing process, and although they found some decline in measures of life satisfaction, 75% of those interviewed rated their current quality of life as either good or excellent on a five-point scale. Decker and Schulz (1985) found that adjustment as measured by the Life Satisfaction Index was positively correlated with their own social support scale. In a mailed survey of 125 persons with spinal cord injury using the Quality of Life Index (QOLI) and the Reciprocal Social Support Scale, Anson, Stanwyck, and Krause (1993) found that increased social support was associated with positive adjustment and decreased secondary complications (i.e., fewer pressure sores and less pain). In general, the main themes from the literature suggest: younger people tend to adjust to it better than older people; an internal locus of control has been shown to predict better adjustment than an external locus (Bracken, Shepard, & Webb, 1981; Shadish, Hickman, & Arrick, 1981); those who believe they were in some way responsible for their injury adjust better than those who believe themselves to be innocent victims (Bulman & Wortman, 1977).

There appears to be contradictory evidence about the role of educational background, Woodrich and Patterson (1983) concluded that the more educated adjusted better; in contrast, Hancock, Craig, Dickson, Chang, and Martin (1993) found no educational effect. In summary then, the evidence suggests that following spinal cord injury the majority of individuals experience a quality of life which is comparable with their able bodied peers and poor psychological adjustment is not an inevitable consequence. Now let us examine the factors associated with coping.

8.19.5 COPING WITH SPINAL CORD INJURY Frank et al. (1987) identified, by cluster analysis, two subgroups differing in coping styles within a group of 53 persons with spinal cord injury. The cluster variables were coping, as measured by the Ways of Coping (WOC) scale (Folkman & Lazarus, 1988), and locus of control as measured by the Multidimensional Health Locus of Control scale (Wallston, Wallston, & DeVellis, 1978). Cluster one tended to use all the coping strategies in the WOC scale to a greater extent than cluster two. However, the general pattern was quite similar. Most used was wishful thinking, followed by problemfocused strategies, with self-blame being the least used. Kennedy, Lowe, et al. (1995) investigated the relationship between depression (using the BDI; Beck & Steer, 1987), anxiety (using the STAI; Speilberger, Gorsuch, Lushene, Vagg & Jacobs, 1983) and social support using the Social Support Questionnaire (Sarason & Sarason, 1986) and coping strategies as measured by Carver, Scheier, and Weintraub's (1989) COPE Questionnaire. They examined two groups of patients, 41 at six weeks post injury and 30 between four and seven years post injury. A series of regression analyses found that the coping strategies explained more of the variance in psychological impact measures than moderating variables such as age, level of injury or social support. The models produced demonstrated an association between increased levels of psychological distress and the use of the coping strategies of behavioral disengagement, alcohol and drug use ideation, and the underutilization of the strategy of acceptance. The post-discharge group used emotional and instrumental social support less often and scored higher on venting emotions and behavioral disengagement. However, there are difficulties in making causal interpretations from this type of crosssectional study. Using a longitudinal design,

Psychological Interventions Buckelew and Hanson (1992) measured coping using the adapted WOC questionnaire (developed from Felton & Revenson, 1984) in 57 persons with spinal cord injury during acute rehabilitation and followed them up five years post discharge. Adjustment was measured by the Acceptance of Disability scale (Linkowski, 1971) and the Symptom Check List-90-R (Derogatis, 1977). This preliminary and methodologically weak study explored the issue of coping strategies and the prediction of adjustment. They found that cognitive restructuring was associated with high levels on acceptance of disability, whereas wish-fulfilling fantasy strategies were associated with low levels. Reidy, Caplan, and Shawaryn (1991) followed up patients between 18 and 24 months post discharge. Using the WOC questionnaire, the BDI and the Multiple Affective Adjective Checklist they found that depression had a strong positive correlation with the use of escape avoidant coping strategies. Positive affective states were positively associated with distancing, seeking social support, positive reappraisal, and planned problem solving. Kennedy (1995) employed a longitudinal methodology to examine psychological impact and coping strategies (using the COPE) following traumatic spinal cord injury. This prospective longitudinal design employed repeated measures to examine coping strategies over time from six weeks post injury to two years post discharge. A remarkably consistent pattern of coping strategies emerged and no significant differences were noted across time. The most frequently used strategies were acceptance, positive interpretation and growth, active coping, planning, and social support; the least used were behavioral disengagement, denial, and alcohol and drug use ideation. Concurrent multiple regression analyses implicated similar coping strategies (acceptance, behavioral disengagement, alcohol and drug use ideation) in models predicting levels of anxiety and depression during hospitalization and after discharge. At six months post injury, using coping strategies (COPE), demographic data (age, sex), and measures of functional status (FIM) as independent variables and depression (as measured by the BDI) as the dependent variable, a model was produced which predicted 83% of the variance in depression. Predictive variables (in order of contribution) included: behavioral disengagement, low acceptance, focusing on and venting emotions, low emotional social support, alcohol and drug use ideation, and low functional independence. The longitudinal methodology employed by this study enabled the exploration of prediction across time. Coping strategies

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assessed at six weeks post injury were found to predict 67% of the variance in depression at one year post discharge. The model here included the use of focusing on and venting emotions, low acceptance and low functional independence. Fifty-seven percent of the anxiety at one year post discharge was predicted by the strategies of focusing on venting emotions, positive reinterpretation and growth (negative coefficient) and restraint coping, all collected at six weeks post injury. These results demonstrate that a significant predictive relationship exists between the coping strategies people use and the level of psychological distress following traumatic spinal cord injury. Again, mediating variables, such as coping, accounted for more variance in emotional adjustment than moderating variables such as age, sex, and level of injury.

8.19.6 PSYCHOLOGICAL INTERVENTIONS Trieschmann (1988), in her review of the literature, commented on the paucity of longitudinal investigations into psychological impact, coping and adjustment. To some extent this need has been met by recent studies such as Kennedy (1995), Krause and Crewe (1990) and Whiteneck et al. (1992). Unfortunately the same cannot be said about the research on psychological interventions with this client group. McAweeney (1996) reviewed the literature of psychological interventions in the rehabilitation of persons with spinal cord injury over the past 20 years. She identified 221 studies and found that the majority (83%) were of quasi-experimental design, 16% employed a repeated measures design and only 1% reported the effect size. She did not dismiss the clinical relevance reported in the quasi-experimental studies, but highlighted the need for randomized controlled trials. However, it is appropriate to recognize the efficacy of established psychological techniques in this population group (Crewe & Krause, 1987; Kennedy, 1991; Trieschmann, 1988). In general, psychological interventions with spinal cord injured people aim to assist in the management of emotional concerns, maximizing the individual's rehabilitative potential, and minimizing general psychosocial disruption. The American Association of Spinal Cord Injury Psychologists and Social Workers (AASCIPSW; 1992) suggested that the psychosocial rehabilitation process should involve a continuity of services from the onset of spinal cord injury, through comprehensive rehabilitation, to follow-up in the community.

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8.19.6.1 Initial Contact Many people who are referred for psychological intervention in the acute rehabilitation phase are either on bed rest or are in the early stages of mobilization. Wanlass, Palmer, and Cook (1992) have described some helpful guidelines for improving the psychologists' bedside manner. These guidelines are particularly important to help manage initial therapeutic resistance. Many patients have an initial focus on medical treatment, physical therapy, and the idea of getting better (Crewe & Krause, 1987), whereas accepting psychological intervention may imply making plans for a future that could include a permanent disability. Wanlass et al. (1992) emphasized the importance of being familiar with the available information on the ward of both medical and social information, and before entering the patient's space, ask their permission to pull up a chair and spend time talking to them. Once you have identified yourself, it is important to inform the patient of your role and the purpose for making contact. It is helpful to emphasize that most people have a normal psychological reaction and that the psychologist is available to help with individual concerns and to foster coping and positive adjustment. Traditional empathic counselling skills are important in facilitating patients' engagement. Discussion should involve individual responses, acknowledgment of feelings and emotional reactions, and exploration of major relationships and the wider social context. 8.19.6.2 Management of Emotional Concerns 8.19.6.2.1 Intervention methods Clinical experience suggests the early provision of supportive counselling, which includes emphasizing that the patient is now safe, normalizing emotional reactions, and listening to the patient's concerns, is beneficial. Taylor and Aspinwall (1990) concluded that such informal interventions can reduce the emotional distress of patients in medical settings. Initially the focus of attention is often the patient, but family support during this period is essential (Padrone, 1994). Once the initial rapport is established and the patient has been supported in expressing their concerns, one can then begin the processes of cognitive restructuring and fostering adjustment. It is important to acknowledge the catastrophic elements, but statements that reinforce self-efficacy and adaptation should be encouraged. At this stage it is important to remember that most people make a successful adjustment to the spinal cord

injury (Kennedy, Gorsuch, & Marsh, 1995; Krause & Crewe, 1990; Trieschmann, 1988) and their quality of life improves over time. Telling patients and their families what to expect considerably alleviates anxiety (Taylor & Aspinwall, 1990) and at this stage they should be informed on the nature of the rehabilitation process. Interventions to manage psychological distress and facilitate adjustment in coping can be applied at a number of levels (Wilson, Kennedy, & Glass, 1994; AASCIPSW, 1992). The first level involves individual assessment and the treatment of specific emotional disorders utilizing individual psychotherapy. The second level incorporates the provision of information regarding adjustment and emotional reactions and the training of staff to enhance psychological awareness and responsiveness. The third level indirectly addresses emotional issues using behavioral techniques in the form of goal planning to enhance engagement in rehabilitation and foster self-efficacy. Fourthly, the application of research findings that can clarify the process of adjustment, help identify maladaptive and adaptive coping strategies and challenge negative beliefs, form the basis of the evidence required to challenge negative beliefs. 8.19.6.2.2 Cognitive-behavioral strategies Cognitive-behavioral approaches have had a remarkable influence in the management of emotional disorders since the mid-1970s (Kendall, Vitousek, & Kane, 1991). More recently, Sharpe et al. (1996) and Speckens et al. (1995) implemented a series of randomized control trials which utilized between six and 16 sessions of cognitive-behavioral therapy to demonstrate the effectiveness in managing problems of chronic fatigue and medical patients with unexplained physical symptoms, respectively. As mentioned, there is no need to replicate the efficacy of cognitive-behavioral therapy with this client group but it is appropriate to elaborate on the main themes and highlight some of the common cognitive distortions. The cognitive-behavioral approach has much to offer in the management of spinal cord injury. There is common concensus on the efficacy of its application to this client group. Crewe and Krause (1987) and Kennedy (1991) describe the applications of cognitive-behavioural therapy with this population. During therapy, thoughts and beliefs about the consequences of the injury are explored. Specific periods of emotional distress are examined; they include the antecedent events, thoughts and beliefs, and emotional and behavioral consequences. These are separated and their

Psychological Interventions interrelationships are discussed. Once specific negative thinking patterns and inferences are identified, related core assumptions are made explicit. By focusing on maladaptive and irrational patterns, negative assumptions about the consequences of the injury can be challenged and people are encouraged to respond to their injury in a rational and realistic fashion. Turk and Salovey (1995) describe the following components of cognitive behavioral interventions for people with diverse chronic diseases and physical impairments. The first component involves reconceptualization which aims to shift a patient from automatic and ineffective responses toward systematic problem solving and planning. Problems and issues are recast in forms amenable to solutions, and therapy aims to foster hope, positive anticipation, and expectations of success. The second component in skills acquisition, fundamental to cognitive-behavioral therapy, is the need to build up the individual's awareness of the relationship between their thoughts, affect, and behavior. The initial focus is to make explicit the internal dialogue and irrational assumptions. The first stage of cognitive restructuring is to monitor these relationships and evaluate their validity and viability. Catastrophic statements such as ªmy life's overº and ªI'm just going through the motions of life,º can be identified and demonstrated as to how they can contribute to the sense of catastrophe and interfere with adaptive coping responses. With individuals who, as a result of motor dysfunction, are unable to physically record their thoughts, therapy focuses on key events in their recent past and the core assumptions that maintain negative thinking. The following case example may give an insight into the specific cognitions involved. John had just finished university and was due to start work as a quantity surveyor when he was injured diving into the shallow end of a swimming pool. He injured his fifth cervical segment which resulted in a complete tetraplegia. He required a powered chair and help with most activities of daily living. Six weeks into his rehabilitation program he began to withdraw and complained of losing his appetite and having difficulty in sleeping. When interviewed it was clear that he was having great difficulty acknowledging the permanence of the paralysis. When we explored the reasons the injury was so difficult to accept, the following themes emerged. He believed he was unable to do anything worthwhile, that he would never be in control of his life again, and that he had now become a problem that needed to be managed. This, in turn, mobilized cognitions associated with previous vulnerabilities and negative self-

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perceptions. These negative predictions, global judgments and selective abstractions were challenged over eight sessions using a variety of cognitive-behavioral strategies. Decatastrophizing began by encouraging John to discuss his concerns and then exploring the basis of his cognitive distortions. We then examined realistically the activities that he was capable of engaging in, which was enhanced by discussing of comparable peers. This was introduced while exploring evidence for and against his negative predictions. We then challenged the belief that you have to be physically independent to be in control and encouraged his engagement in decision making. Throughout, John was able to discuss his emotions, such as his fears about the future and concerns about his losses, but these were balanced by general coping skills training which involved problem solving, reframing and active coping. During this time he increased his engagement, his level of affective distress decreased and assessment of coping strategies indicated an increase in level of acceptance and active coping and a decrease in behavioral disengagement. In summary, this intervention aimed to communicate that this was a situation, that despite its severity could be managed, and that John possessed the capacity to do so. John has since returned to the community, is pursuing full-time education and lives in adapted accommodation with a personal care package funded by the local authority. 8.19.6.2.3 Coping effectiveness training Many aspects of the acquired disability may not be manageable or controllable and, as an adjunct to cognitive-behavioral therapy, elements from cognitive-relational coping interventions are important (Folkman et al., 1991). This model suggests that a relationship exists between the person and the environment which may be cognitively appraised by the individual as personally significant and taxes or exceeds their resources (Lazarus & Folkman, 1984). The process of coping and adjustment is mediated by cognitive appraisal and coping. Coping has two major functions, namely to alter the problem that is causing stress or to regulate the emotional response to the problem. Training in coping effectiveness utilizes cognitive methods to appraise the stressor, and to identify the changeable and unchangeable aspects. When demands are perceived to be amenable to resolution, they are trained to utilize problemfocused coping strategies, whereas in situations where demands are appraised as not changeable, individuals utilize emotion-focused forms of coping.

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Following spinal cord injury, individuals engage a range of coping responses and it is possible to identify those associated with good outcomes. Kennedy (1995) concluded that individuals who were not distressed two years post injury were more likely to employ the coping strategies of acceptance and positive reframing, and less likely to use behavioral disengagement, alcohol and drug use ideation and denial. Therapy aimed at increasing adaptive and decreasing maladaptive strategies may be worth further investigation. A pilot study to explore these issues is currently being implemented by this author. Two other critical components of cognitive, behavioral and coping training include techniques to consolidate skills and to ensure generalization and maintenance post therapy. It is helpful to supplement prevention with patient information booklets and handouts that elaborate on the therapeutic techniques and coping strategies.

8.19.6.3 Skills Training Relaxation training is an important aspect of skills training (Turk & Salovey, 1995). In spinal cord injury Jacobsonean relaxation (muscles tense/relaxed) training is contra-indicated and the focus should be on autogenic relaxation training (Schultz, 1932) and imaging techniques. In addition, general problem-solving skills training, social skills training and assertiveness training have proved to be of benefit (Crewe & Krause, 1987; Dunn, Van Horn, & Herman, 1981; Kennedy, 1989). Dunn et al. (1981) effectively developed a program for enhancing social relationships and interpersonal skills. Components of this skills training program included general assertiveness training, disability and specific social skills training (such as reactions to wheelchairs, bladder and bowel accidents) and behavioral rehearsal of managing difficult social situations. Frank (1992) used a randomized control group design to demonstrate the effectiveness of a personal achievement skills (PAS) program. This was a structured group psychotherapeutic approach, the results of which indicated that the PAS group participants in comparison to the control group improved significantly on measures of self-esteem. Moore (1989) investigated the effectiveness of including a family/significant other as an explicit component in the psychosocial rehabilitation of men with recent onset of spinal cord injuries. Using a two-way mixed analysis of covariance, significant interactions were found which confirmed that including family members

or significant other in the psychosocial rehabilitation programme has a positive effect on personal adjustment as measured by the California Psychological Inventory and Personal Orientation Inventory.

8.19.6.4 Rehabilitation Planning and Adherence Trieschmann and Willems (1980) conceptualize rehabilitation in behavioral terms and Norris-Baker, Stephens, Rintala, and Willems (1981) concluded that behavioral engagement in rehabilitation was the best protective of both medical and behavioral status post discharge. Kennedy, Fisher, and Pearson (1988) in an observational study of a spinal rehabilitation unit concluded that patients spent a considerable proportion of their time in solitary and disengaged behaviors. Patients who utilized behavioral disengagement as a coping strategy have been more likely to be depressed and anxious (Kennedy, 1995). Goal planning is a behavioral intervention strategy which was developed by Houts and Scott (1975) to manage and minimize problems associated with institutionalization and dependency. The main objective of this intervention strategy is to increase patient involvement in decision making, identify needs and strengths rather than disabilities and problems, break down targets into manageable units and specify who will do what, where and when, and the degree of success expected. Locke and Latham (1990) found that strong positive intercorrelations existed between self-efficacy, goal planning, and performance. Kennedy, Walker, and White (1991) describe the effectiveness of goal planning in increasing patient engagement, specifically time spent in therapy and involvement in formal meetings. Kennedy and Swalwall (1995) utilized the system which involves a key worker coordinating fortnightly goal planning meetings that involve members of the rehabilitation team and the patient in setting goals. They developed a Needs Assessment Checklist which comprises over 200 behavioral indicators of needs ranging from activities of daily living, bladder management, and discharge planning. Individual progress is compared with peers and a goal planning action plan is provided to patients. Complex needs are broken into specific behavioral objectives that can be managed within a short timespan (usually two weeks). This system provides an ongoing assessment of engagement and enables the more systematic and contingent delivery of positive social reinforcement. Many patients are initially overwhelmed by their needs and are unable to see progress in rehabilitation

Professional Issues because of their focus on how they were before the injury. Rehabilitation programs are a powerful source of positive reinforcement and goal planning ensures that this occurs on a regular basis. For example, mobility needs are one of the major aspects of rehabilitation, independent transfer to and from a wheelchair is an important goal and weekly targets may begin by building up upper limb strength by attending weight training and lifting 5 kg 60 times. These objective milestones reflect to patients and staff goal attainment, serve as directional indicators of progress, and promote growth and selfefficacy. 8.19.6.5 Sexual Counseling There is general concensus (Alexander, 1991; Kennedy, 1991) that the P-LI-SS-IT (permission, limited information, specific suggestions, intensive therapy) developed by Annon (1974) provides a useful framework for organizing sexual counseling. This model has four levels of intervention, each increasing in sophistication, which allows counselors to structure a program according to their level of competence. Permission giving highlights the legitimacy of continued sexual interest and the need to discuss sexual concerns. Limited information is provided dependant on the patient's ability and level of concern and should be made available to patients on request. Most spinal rehabilitation centers possess a number of handbooks and pamphlets on this issue. Specific suggestions include advice on maintaining an erection, positioning, developing relationships and possible problems. People with more complex sexual difficulties may require more intensive therapy which may focus on sexual behavior, such as Masters and Johnson (1970), sensate focus or on communication. This needs to be provided by people trained in sexual counseling, but all staff should be encouraged to refer patients to suitable therapists. Sex education following spinal cord injury is essential and should be structured around the sexual response cycle and expected changes due to the spinal cord injury, as well as the effects of medication and management of problems such as bowel difficulties and spasm.

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absolution of responsibilities, negative prediction, and expectation of pain. The chronic pain management approaches detailed in Chapter 8.24 of this volume are appropriately applied to this population. Programs should involve relaxation training, ability scheduling, challenging negative predictions and beliefs, distraction, and problem-solving techniques. 8.19.6.7 Biofeedback Biofeedback techniques have been used in physical rehabilitation since the mid-1970s but their use in spinal cord injury has been extremely limited and has had mixed success (Brucker & Bulaeva, 1996). Biofeedback is an operant conditioning technique used to establish learned voluntary control of specific physiological responses. Until recently, the most significant evidence that individuals with complete spinal cord injuries can gain specific control of physiological responses was the work on postural hypotension and learned voluntary control of blood pressure (Brucker & Ince, 1977). Autonomic disregulation occurs in high thoracic and cervical level lesions, and can cause blood to pool in the lower extremeties. In this study, blood pressure feedback over 11 sessions enabled a subject to increase his blood pressure voluntarily by 20 mmHg on command. Electromyograph (EMG) biofeedback has been applied to cervical patients to maximize upper limb function, Brudny et al. (1976). More recently Brucker and Bulaeva (1996) utilized EMG biofeedback procedures to increase voluntary EMG responses from the tricep muscles of over 100 persons with cervical spinal cord injuries C6 and above and greater than one year duration. These results demonstrated the efficacy of biofeedback for increasing voluntary EMG result responses in long term spinal cord injured patients (Figure 1). Gallego, Perez de la Sota, Vardon, and Jaeger-Denavit (1993) used EMG biofeedback of the inspiratory muscles of the upper thorax with 10 tetraplegic patients. Their results supported the clinical use of the EMG biofeedback, increasing thoracic motion and reducing paradoxical breathing. 8.19.7 PROFESSIONAL ISSUES

8.19.6.6 Chronic Pain Management As mentioned, almost 40% of people have a problem with chronic pain following a spinal cord injury. Chronic pain behavior is a function of the interplay between organic and learning factors including avoidance, social discomfort,

Most spinal cord injury rehabilitation units in developed economies have resident clinical psychologists or sessional psychological input. The AASCIPSW (1992) established a taskforce to produce a set of standards for professional services. They recommend a minimum standard

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100 90 80

Normal EMG (%)

70 60

R

L

50 40

R

L

30 20

R

L

10 0

Before initial biofeedback N = 100

After initial biofeedback N = 75

After initial biofeedback N = 75

Figure 1 Percentage of normal EMG scores from the right and left triceps before initial biofeedback treatment and after initial and additional biofeedback treatments (Brucker & Bulaeva, 1996).

of 20 patients to one full-time psychologist. In this document they report on the psychologist's contribution to the psychosocial program that ranges from assessment, through treatment planning and follow-up. They also suggest psychological involvement in team consultation, research, resource dissemination, and inservice staff training. The author has been working with this population since 1984. Most of this time has been spent in direct clinical work (60%). The greatest demand for psychological services has come from patients in the rehabilitation phase but a small and significant proportion of referrals have been received in the acute phase and following discharge. Psychological issues are a core component of the rehabilitation phase. However, some people (estimated 10%) require referral to community psychological services for ongoing support. Adjustment disorder, anxiety and depression are the commonest needs requiring psychological support, but acquired cognitive impairment, psychiatric disorders and chronic pain are significant issues with a small proportion of clients.

8.19.8 LIFE SPAN AND SOCIETAL RESPONSES In the 1960s, many people with severe spinal cord injuries were sent to residential homes following their rehabilitation. These were expensive in terms of resources, staff morale and individual psychological well-being. Now, with longevity only slightly compromised, quality of life issues have become paramount. Psychological interventions have helped individuals to manage emotional concerns, foster engagement in rehabilitation, and challenge some of the negative assumptions about acquired disability. The research previously discussed in this chapter, together with personal and clinical experience, have shown that most people make a positive adjustment and get on with their life goals. Nevertheless, a significant proportion continue to have difficulties and further research is required into identifying those at risk and exploring interventions to minimize their vulnerability. Whiteneck et al. (1992) in a study of over 20 years post injury, found that almost three-quarters of respondents

References rated their current quality of life as either good or excellent on a five-point scale, demonstrating a pattern of increasing quality of life up to the age of 50, and 30 years post injury. Clinical psychology services not only assist the individual in managing their adjustment concerns and acquired disability, but can enhance engagement in rehabilitation and contribute to the challenging of the myths and misconceptions that prevail in our communities about the impact of physical disability. Once a decision has been made to prevent death of the severely injured person at the scene of a trauma, then it could be argued that healthcare providers have a responsibility to follow this decision through to enable access to a quality of life that is commensurate with previously held expectations. The challenge for clinical psychologists is to recognize the urgent need for new directions in research with an emphasis on treatment efficacy based on sound empirical methods. More attention needs to be given to health and rehabilitation outcomes in response to the growing competition for resources. 8.19.9 REFERENCES Abrams, K. (1981). Impact on marriages of adult onset paraplegia. Paraplegia, 19, 253±259. Alexander, C. J. (1991). Psychological assessment and treatment of sexual dysfunctions following spinal cord injury. Journal of the American Paraplegia Society, 14, 127±131. Alexander, C. J., Sipski, M. L., & Findley, T. W. (1993). Sexual activities, desire and satisfaction in males pre- and post-spinal cord injury. Archives of Sexual Behaviour, 22, 217±228. American Association of Spinal Cord Injury Psychologists and Social Workers (1992). Standards (1992). Jackson Heights, NY: Author. Annon, J. S. (1974). The behavioural treatment of sexual problems (Vol. 1). Honolulu, HI: Enabling Systems. Anson, C. A., Stanwyck, D. J., & Krause, J. S. (1993). Social support and health status in spinal cord injury. Paraplegia, 31, 632±638. BBC (1966). Man Alive Documentary: Paraplegics. (Film) TX09-03-66 (Available from BBC, Wood Lane, London, UK). Beck, A. T., & Steer, A. R. (1987). Beck Depression Inventory manual. San Antonio, TX: Psychological Corporation, & Harcourt, Brace and Jovanovich. Bedbrook, G. (Ed.) (1981). The care and management of spinal cord injuries. Heidelberg, Germany: SpringerVerlag. Boureston, N., & Howard, M. (1965). Personality characteristics of three disability groups. Archives of Physical Medicine and Rehabilitation, 46, 626±632. Bracken, M., & Shepard, M. (1980). Coping and adaptation to acute spinal cord injury: A theoretical analysis. Paraplegia, 18, 74±85. Bracken, M., Shepard, M., & Webb, S. (1981). Psychological response to acute spinal cord injury: An epidemiological study. Paraplegia, 19, 271±283. Britell, W. W., & Mariano, A. J. (1991). Chronic pain in spinal cord injury. In N. E. Walsh (Ed.), Physical medicine and rehabilitation; Rehabilitation of chronic pain

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DeVivo, M. J., & Fine, P. R. (1985). Spinal cord injury: Its short-term impact on marital status. Archives of Physical Medicine and Rehabilitation, 66, 501±504. DeVivo, M. J., & Stover, S. L. (1995). Long-term survival and causes of death. In S. L. Stover, J. A. DeLisa, & G. G. Whiteneck (Eds.) Spinal cord injury: Clinical outcomes from the model systems (pp. 289±315). Baltimore: Aspen. DeVivo, M. J., Whiteneck, G. G., & Charles, E. D. (1995). The economic impact of spinal cord injury. In S. L. Stover, J. A. DeLisa, & G. G. Whiteneck (Eds.) Spinal cord injury: Clinical outcomes from the model systems (pp. 234±270). Baltimore: Aspen. Dijkers, M. P., Abela, N. B., Gans, B. M., & Gordon, W. A. (1995). The aftermath of spinal cord injury. In S. L. Stover, J. A. DeLisa, & G. G. Whiteneck (Eds.), Spinal cord injury: Clinical outcomes from the model systems (pp. 185±211). Baltimore: Aspen. Dijkers, M., & Abela, M. (1993). Formal education after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 74, 673. Dunn, M., Van Horn, E., & Herman, S. H. (1981). Social skills and spinal cord injury: A comparison of three training procedures. Behaviour Therapy, 12, 153±164. Felton, B. J., & Revenson, T. A. (1984). Coping with chronic illness: A study of illness controllability and the influence of coping strategies on psychological adjustment. Journal of Consulting and Clinical Psychology, 52, 343±353. Folkman, S., & Lazarus, R. S. (1988). Way of Coping QuestionnaireÐresearch edition. Palo Alto, CA: Consulting Psychologists Press. Folkman, S., Chesney, M., McKusick, L., Ironson, G., Johnson, D. S., & Coates, T. J. (1991). Translating coping theory into an intervention. In J. Eckenrode (Ed.) The social context of coping (pp. 239±260). New York: Plenum. Fordyce, W. (1964). Personality characteristics of men with spinal cord injury as related to manner of onset of disability. Archives of Physical Medicine and Rehabilitation, 45, 321±325. Frank, R. A. (1992). Structured group psychotherapy for individuals with spinal cord injury. Unpublished PhD thesis, Oregon State University. Frank, R. G., Umlauf, R. L., Wonderlich, S. A., Askanazi, G. S., Buckelew, S., & Elliott, T. (1987). Difference in coping styles among persons with spinal cord injury: A cluster analytic approach. Journal of Consulting and Clinical Psychology, 55, 727±731. Fuhrer, M. J., Garber, S. L., Rintala, D. H., Clearman, R., & Hart, K. A. (1993). Pressure ulcers in community resident persons with spinal cord injury: Prevalence and risk factors. Archives of Physical Medicine and Rehabilitation, 74, 1172±1177. Fullerton, D. T., Harvey, R. F., Klein, M. H. & Howell, T. (1981). Psychiatric disorders in patients with spinal cord injuries. Archives of General Psychiatry, 38, 1369±1371. Gallego, J., Perez de la Sota, A., Vardon, G., & JaegerDenavit, O. (1993) Learned activation of thoracic inspiratory muscles in tetraplegics. American Journal of Physical Medicine and Rehabilitation, 72, 312±317. Go, B. K., DeVivo, N. J., & Richards, J. S. (1995). The epidemiology of spinal cord injury. In S. L. Stover, J. A. DeLisa, & G. G. Whiteneck, (Eds.), Spinal cord injury: Clinical outcomes from the model systems. Baltimore: Aspen. Guttmann, L. (1964). Problems in the initial treatment of traumatic tetraplegia. Excerpta Medica, 593±596. Guttmann, L. (1976). Spinal cord injuries: Comprehensive management and Research (2nd ed.). Oxford, UK: Blackwell Scientific. Hancock, K. M., Craig, A. R., Dickson, H. G., Chang, E., & Martin, J. (1993). Anxiety and depression over the first

year of spinal cord injury: A longitudinal study. Paraplegia, 31, 349±357. Heinemann, A. W., Keen, M., Donohue, R., & Schnoll, S. (1988). Alcohol use by persons with recent spinal cord injuries. Archives of Physical Medicine and Rehabilitation, 69, 619±624. Hohmann, G. (1975). Psychological aspects of treatment and rehabilitation of the spinal injured person. Clinical Orthopaedics, 112, 81±88. Houts, P., & Scott, R. (1975). Goal planning with mentally disabled persons: Procedures for developing an individualised client plan. Pennsylvania: Milton Hershey Center. Hughes, J. T. (1988). The Edwin Smith surgical papyrus: An analysis of the first case reports of spinal cord injuries. Paraplegia, 26, 71±82. Ivie, C. S., & DeVivo, M. J. (1994). Predicting unplanned hospitalisations in persons with spinal cord injury. Archives of Pysical Medicine and Rehabilitation, 75, 1182±1188. Judd, F. K., Brown, D. J., & Burrows, G. D. (1991). Depression, disease and disability: Application to patients with traumatic spinal cord injury. Paraplegia, 29, 91±96. Judd, F. K., Stone, J., Webber, J. E., Brown, D. J., & Burrows, G. D. (1989). Depression following spinal cord injury: A prospective in-patient study. British Journal of Psychiatry, 154, 668±671. Kelly, M. P., & Doty, R. E. (1995). Neuropsychological dysfunction: Research and evaluation. In P. M. Nicassio, & T. W. Smith (Eds.), Managing chronic illness: A biopsychosocial prospective (pp. 117±162). Washington, DC: American Psychological Association. Kendall, P. C., Vitousek, K. B., & Kane, M. (1991). Thought and action in psychotherapy: Cognitive-behavioral approaches. In M. Hersen, A. Cazdin, & A. Bellack (Eds.). The clinical psychology handbook (pp. 596±626). New York: Pergamon. Kennedy, P. (1989). Psychological approaches in the management of spinal cord injury. British Journal of Holistic Medicine, 4, 169±176. Kennedy, P. (1991). Counselling with spinal cord injured people. In H. Davis & L. Fallowfield (Eds.). Counselling and communication in healthcare (pp. 129±145). Chichester, UK: Wiley. Kennedy, P. (1995). Psychological aspects of spinal cord injury: Behavioral approaches, emotion and impact in coping strategies, Volume 2. DPhil Thesis, University of Ulster. Kennedy, P., Fisher, K., & Pearson, E. (1988). Ecological evaluation of a rehabilitative environment for spinal cord injured people: Behavioural mapping and feedback. British Journal of Clinical Psychology, 27, 239±246. Kennedy, P., Frankel, H., Gardner, B., & Nuseibeh, I. (1997). Factors associated with acute and chronic pain following traumatic spinal cord injuries. Spinal Cord, 35, 814±817. Kennedy, P., Gorsuch, N., & Marsh, N. (1995). Childhood onset of spinal cord injury: Self-esteem and self-perception. British Journal of Clinical Psychology, 34, 581±588. Kennedy, P., Lowe, R., Grey, N., & Short, E. (1995). Traumatic spinal cord injury and psychological impact: A cross sectional analysis of coping strategies. British Journal of Clinical Psychology, 34, 627±639. Kennedy, P., & Swalwell, E. (1995). Clinical audit of physical rehabilitation. Auditorium, 4, 25±28. Kennedy, P., Walker, L., & White, D. (1991). Ecological evaluation of goal planning and advocacy in a rehabilitative environment for spinal cord injured people. Paraplegia, 29, 197±202. Krause, J. S., & Crewe, N. M. (1990). Long-term prediction of self-reported problems following spinal cord injury. Paraplegia, 28, 186±202. Lawson, N. (1978). Significant events in the rehabilitation

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.20 Traumatic Brain Injury BARBARA A. WILSON Medical Research CouncilÐApplied Psychology Unit, Cambridge, UK 8.20.1 INTRODUCTION

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8.20.2 THE NATURE OF TBI 8.20.2.1 Primary and Secondary Brain Damage 8.20.2.2 How Common are Head Injuries? 8.20.2.3 Recovery from TBI 8.20.2.4 Who is at Risk of TBI? 8.20.2.5 The Impact of TBI on the Family 8.20.3 PROBLEMS FACED BY PEOPLE WITH TBI 8.20.3.1 Motor Problems 8.20.3.2 Sensory Problems 8.20.3.3 Emotional and Social Problems 8.20.3.4 Behavior Problems 8.20.3.5 Cognitive Problems 8.20.4 ASSESSMENT OF PEOPLE WITH TBI 8.20.4.1 Models of Assessment 8.20.4.2 Behavioral Assessment 8.20.5 PRINCIPLES AND PRACTICES OF REHABILITATION 8.20.5.1 Restoration of Function 8.20.5.2 Environmental Restructuring 8.20.5.3 Anatomical Reorganization 8.20.5.4 Using Residual Skills More Efficiently 8.20.5.5 Alternative Solutions 8.20.6 COGNITIVE REHABILITATION 8.20.6.1 Cognitive Retraining 8.20.6.2 Cognitive Neuropsychology 8.20.6.3 Combined Approaches 8.20.6.4 The Holistic Approach 8.20.7 EFFECTIVENESS OF REHABILITATION 8.20.7.1 Clinical Effectiveness 8.20.7.2 Does Rehabilitation Improve Quality of Life? 8.20.7.3 Overall View of Effectiveness 8.20.8 PROFESIONAL ISSUES

465 465 465 465 466 467 468 468 469 469 469 470 470 470 471 473 473 474 474 474 474 476 476 477 479 480 480 480 481 481 481

8.20.9 CONCLUSIONS: AN INTEGRATED APPROACH TO COGNITIVE REHABILITATION

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8.20.10 REFERENCES

482

463

464

Traumatic Brain Injury

Traumatic brain injury (TBI) has been defined as ªan insult to the brain caused by an external force that may produce diminished or altered states of consciousness, which results in impaired cognitive abilities or physical functioningº (National Head Injury Foundation, 1988). The two main types of TBI are closed head injury and penetrating wounds. Closed head injury (CHI) is by far the most common. It is associated with acceleration and deceleration forces that may or may not involve skull fracture. The earliest known scientific document about head injury is believed to be the Edwin Smith Surgical Papyrus found by Smith in Luxor in 1862 (Walsh, 1987). The papyrus is between 2500 and 3000 years old and contains 48 case descriptions of treatment. Eight of these cases refer to head injuries, and it is apparent that the physician recognized that head injury could affect other parts of the body. Evans (1981), discussing the same papyrus, said, ªBleeding from the nose or ears with shudderings (convulsions) are described, together with eye deformity (deviation), shuffling gait and one who does not release the shoulder fork (hemiplegic) posture of the armº (p. 27). Severity of head injury is usually judged by (i) the depth and duration of coma, and (ii) the length of post-traumatic amnesia (PTA). Coma has been defined as ªnot obeying commands, not uttering words, and not opening the eyesº (Jennett & Teasdale, 1981). PTA has been described as ªa period of variable length following closed head trauma during which the patient is confused, disorientated, suffers from retrograde amnesia, and seems to lack the capacity to store and retrieve new informationº (Schacter & Crovitz, 1977). The Glasgow Coma Scale (GCS; Teasdale & Jennett, 1974) is widely used throughout the world to measure the depth and duration of coma. The GCS consists of three sections involving eye opening, verbal, and motor responses (see Table 1). The original 14-point scale of the GCS, later extended to 15 points, provides an uncomplicated and objective measure of coma that is easy to score. Within each section the best possible response is scored 4, 5, or 6, depending on the component being measured and the version of the test employed. The worst possible score for each section is 1, thus even patients who are brain dead score 3. The operational definition often used is that a combined score of 8 or less means the patient is in coma, and 9 or more means the patient is out of coma.

Glasgow Coma Scale.

Table 1

8.20.1 INTRODUCTION Eyes

4 3 2 1

= = = =

Open Spontaneously To verbal command To pain No response

Motor

6 5 4 3 2 1

= = = = = =

Obeys Localizes pain FlexionÐwithdrawal FlexionÐabnormal Extension No response

Verbal

5 4 3 2 1

= = = = =

Oriented + converses Disoriented + converses Inappropriate words Incomprehensible sounds No response

Total 3±15 Source: Teasdale and Jennett (1974).

Although there are some difficulties with this definition (see Watson, Horn, & Curl, 1992; Ponsford, Snow, & Sloan, 1995; Wilson, Shiel, Watson, Horn, & McLellan, 1994 for further discussion), the scale has proved useful in predicting outcome (Klonoff, Costa, & Snow, 1986; Ponsford, Olver, Curran, & Ng, 1995), and enables comparisons to be made from one center to another. The worse the GCS score, the greater the depth of coma and the worse the predicted outcome. Thus a patient with a GCS score of 4 on admission has a poorer prognosis than someone with a GCS of 7 on admission. Severe head injury is, however, often defined as a GCS of 8 or less for at least six hours and a very severe head injury is defined as a GCS score of 8 or less for at least 24 hours. Moderate head injury may be defined as a GCS of 9±12 or a score of 8 or less for less than 6 hours. Mild head injury is a GCS of 13±15 or a coma of less than half an hour. Snow and Ponsford (1995) point out, however, that GCS scores by themselves account for less than a third of the variance in outcome studies. Assessment of PTA is believed to be an even better predictor of outcome than depth and duration of coma (Evans, 1981; Teasdale & Mendelow, 1984). Jennett (1990) classifies PTA of less than 5 minutes as a very mild head injury; 5±60 minutes as mild; 1±14 hours as moderate; 1±7 days as severe; 1±4 weeks as very severe; and more than 4 weeks as extremely severe. Although Jennett says, ªthere is no need to seek a very accurate figure for PTA; what matters is whether it lasted minutes, hours, days or weeksº (p. 4), there are occasions when it would appear useful to have a formal

The Nature of TBI objective measure of PTA. For example, some patients are considered suitable for rehabilitation if they are ªout of PTA.º Other patients remain with persistent memory problems (one of the characteristics of PTA) even when they are no longer confused and disoriented (another characteristic of PTA). Wilson, Baddeley, Shiel, and Patton (1992) attempted to distinguish between PTA and other kinds of memory problems. They compared patients in PTA with (i) patients showing a pure amnesic syndrome, (ii) people with long-standing memory difficulties, and (iii) patients with orthopedic injuries. Although all three of the neurologically impaired groups had difficulty with memory tasks, those patients in PTA were slower on a reaction time task, had poorer verbal fluency, and made more errors on a true/false decision task. Wilson, Evans, Baddeley, Emslie, and Watson (1997) also showed that tests useful for differentiating between groups are not identical to those useful for monitoring recovery. 8.20.2 THE NATURE OF TBI 8.20.2.1 Primary and Secondary Brain Damage Brain damage resulting from traumatic head injury can be due to both primary and secondary causes. Primary damage is that caused directly by the accident or assault, whereas secondary damage is due to complications arising from the first insult (Rose & Johnson, 1996). In the words of Miller, Pentland, and Berrol (1990), ªthe final outcome in any patient who suffers head injury is governed by three groups of factors: the preinjury status of the brain, the total amount of immediate damage done to the brain by the impact of the head injury (primary damage), and the cumulative effect of secondary pathological damage to the already injured brainº (p. 21). Once an accident has occurred, the primary damage is there and has to be managed as well as possible with the resources available. The secondary damage, however, which may result in more permanent disability than the primary, is (at least potentially) preventable. Table 2 illustrates the possible causes of primary and secondary damage (Teasdale & Mendelow, 1984). For further discussion see Miller et al. (1990) and Ponsford (1995). 8.20.2.2 How Common are Head Injuries? There is little doubt that head injuries are common. Jennett (1990) suggests that every year in the USA there are about 7 million head injuries with about 500 000 people admitted to

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hospital. The death rate in the USA is 22±25 per 100 000, more than twice that seen in Britain, Sweden, or Japan (Jennett, 1990). More than two-thirds of people sustaining TBI are under 30 years of age, with over twice as many males as females involved. McMillan and Greenwood (1993) suggest that of those admitted to hospital, 5±7% are considered to have a severe head injury and 10% a moderate head injury. The prevalence of severe head injury is difficult to calculate. Jennett (1990) suggests a figure of 150 markedly disabled persons per 100 000 of the population in the UK, and approximately 400 per 100 000 in the USA. Wade and Langdon Hewer (1987) suggest a prevalence rate of 300 per 100 000 disabled survivors of head injury. This translates to some 174 000 people alive in the UK with a major disability caused by head injury. 8.20.2.3 Recovery from TBI The process of recovery after TBI is not well understood and probably involves different biological processes (Ponsford, 1990, 1995). Changes in the first few minutes, as seen in those with mild head injury, presumably reflect the resolution of temporary dysfunction without accompanying structural damage. Recovery after several days is more likely to be due to temporary structural abnormalities such as oedema and vascular disruption (Jennett, 1990). Recovery after months or years is even less well understood. Finger and Stein (1982) suggest several ways this might be achieved including regeneration, diaschisis, and plasticity. Regeneration in the central nervous system (CNS) may occur even in adults (Kolb, 1995), but there is great uncertainty as to the extent such regeneration leads to clinical and behavioral functional gains. Diaschisis is a term coined by von Monakow (1914, translated by Pribham, 1969). It assumes that damage to a specific area of the brain can result in neural shock or disruption elsewhere in the brain. The secondary neural shock can be adjacent to the site of the primary insult or much further away (Miller, 1984). In any case, the shock follows a particular neural route. Similar, although not identical, is Luria's (1963) theory of inhibition. In inhibition, however, the shock is more diffuse and affects the brain as a whole. Miller (1984) found the evidence for diaschisis unconvincing. Plasticity implies anatomical reorganization based on the idea that undamaged areas of the brain can take on the skills or functions subserved by a damaged area (Wilson, 1989b). Although controversial as an explanation of recovery in adults, such plasticity appears to be widely accepted by the general

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Traumatic Brain Injury Table 2 Causes of primary and secondary brain damage after severe traumatic brain injury. Contusions

(due to rotation)

Diffuse axonal injuries

(due to shearing)

Primary causes

hematomas swelling Intracranial

infection hemorrhage hydrocephalus

Secondary cause respiratory failure + hypoxia Extracranial hypotension Source: Teasdale and Mendelow (1984)

public. MccGwire (1986), for example, writing of her partner who had survived a severe head injury, wrote, ªWe make use of only 10 per cent of our brains . . . º (p. 85). There is no doubt that cerebral plasticity occurs in infants but the extent to which it occurs in adults is unclear. Miller (1984) is somewhat skeptical, although Kolb (1995) feels the skepticism seen among neuroscientists is unfounded and argues that there is increasing evidence for such plasticity. Much of the late ªrecovery,º however, is probably due to functional adaptation (Luria, Naydin, Tsvetkova, & Vinarskaya, 1969) whereby alternative solutions or compensatory strategies are employed to overcome problems and difficulties (Ponsford, Snow, & Sloan, 1995; Wilson, 1989b; Wilson & Patterson, 1990; Wilson & Watson, 1996). Jennett (1990) says, ªWhether recovery is due to restoration of activity in structures that are recovering or to diversion to other pathways, it seems likely that some of the restoration of function is essentially a learning processº (p. 6). The topic of learning and compensation will be discussed later when we consider rehabilitation.

8.20.2.4 Who is at Risk of TBI? A famous quotation by Symonds (1937) states that ªIt's not only the kind of head injury that matters but the kind of headº (p. 1092). As noted earlier, young men between the ages of 15 and 24 years are most at risk of TBI. Approximately 70% of TBIs result from motor

vehicle accidents (Ponsford, 1995). Cycling accidents, falls, and sports injuries account for most of the others. Of 1000 patients with severe head injury in a Scottish study (Bryden, 1989), 58% resulted from road accidents, 7% from assaults, 16% from falls, and 7% from workrelated accidents. Falls account for a greater proportion of head injuries in children and elderly people than they do in young adults (Rimel, Jane, & Bond, 1990). A questionnaire sent to members of the National Head Injuries Association (Headway) reported by Talbott (1989) showed that car accidents accounted for the largest number of accidents and assaults the smallest number. These results are shown in Table 3. Rimel et al. (1990) suggest that TBI from falls and assaults (but not from traffic accidents) is more likely to occur in lower socioeconomic groups, and a greater than average proportion have pre-existing problems such as a history of psychopathology, substance abuse, heavy alcohol consumption, and poor academic performance (Ponsford, 1995). Two of the most successful measures of preventing TBI are using seat belts in cars and wearing a helmet if you are a motor cyclist. Rimel et al. (1990) reported that a study carried out in Virginia showed less than 14% of people involved in car accidents reported wearing seat belts at the time of injury, and only 58% of motor cyclists were wearing helmets. This was despite state law requiring the use of belts and helmets. The authors went on to show that ªIn Britain where there is a compliance rate of well

The Nature of TBI Table 3 A questionnaire study completed by 132 members of the National Head Injury Association. Causes of injury resulting in brain damage.

Cause of injury

Number of patients (%)

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resulted in increased road casualties. Safety measures, air bags, car design, home, work and leisure environments, and education are other areas where changes could result in fewer head injuries. 8.20.2.5 The Impact of TBI on the Family

Car (driver or passenger) Motorcycle (driver or passenger) Cycle (rider) Hit by vehicle Assault Industrial accident Sport Home Other Total

54 20 5 15 3 5 4 9 17 132

(40.9) (15.15) (3.78) (11.36) (2.27) (3.78) (3.03) (6.81) (12.87) (100)

Source: Talbott (1989).

over 90% for several years . . . (there) has been a significant decline in the number of head and facial injuries in car drivers and passengers and also in head injuries among motorcyclistsº (p. 11). Bryden (1989) also discusses the seat belt law (introduced into the UK in 1983) suggesting, however, that this has shifted the pattern of severity of injuries from (i) death to survival with major injury, (ii) major injury to minor injury, and (ii) minor injury to no injury. Barnes (1996) confirms the value of seat belts and safety helmets, saying that there is good evidence these have reduced the number of fatalities and severe injuries. He goes even further when he argues for legislation enforcing the wearing of helmets for bicycle riders. He quotes two studies showing that bicycle riders had a significant reduction in the risk of head injury when wearing protective head gear. This reduction was as much as 63% in one study (Thomas et al., 1994) and 85% in another (Thompson, Rivara, & Thompson, 1989). Drink driving regulations in the UK have significantly reduced head injuries and fatalities (Dunbar, Penttila, & Pikkarainen, 1987), although alcohol would still appear to be heavily involved in TBI. Kraus, Morgenstern, Fife, Conroy, and Nourjah (1989), for example, reported that over 60% of people blood tested for alcohol had a high level (5100 mg%) of blood alcohol. Barnes (1996) discusses other ways TBI can be reduced. He makes a strong argument for increased use of public transport, claiming that a journey made by car is three times more likely to injure a pedestrian than a journey made by bus. He also quotes a study by Allsop and Turner (1986), demonstrating that the removal of subsidies to public transport in London

Families typically receive news of a TBI through a knock on the door by a police officer. They are given news of the road traffic accident and taken to the hospital where their son or daughter, wife or husband is in intensive care. If they are lucky there will be a member of staff to talk to them, to be kind, considerate, and able to provide explanations and information. Sometimes families will be left to their own devices in an intensive ward that will appear frenetic and confusing; the head injured family member will probably be attached to unfamiliar equipment with perhaps a catheter, a tracheostomy tube, and shaved head. Add to this, severe bruising of the face of the injured person, swollen, black, and tightly closed eyes, possibly bleeding and broken limbs encased in splints, it is not hard to see how terrifying the sight is to most families. In the first few days relatives are typically concerned with life and death. Their main desire is to see the loved one survive. The greatest distress is seen at this stage (Oddy, 1995). Stress may, however, remain at a high level indefinitely (Oddy). After the early stages, relatives are typically more concerned with the physical sequelae than with the cognitive or emotional sequelae. Full recovery may still be expected. It is only in the later stages, perhaps two, three, or even more years later that families realize the full extent of the cognitive and emotional problems, and are able to accept that the injured person will not get back to his or her old self. Oddy's (1995) chapter goes into this discussion in more detail. Several studies have noted that it is the cognitive, social, and behavioral sequelae that ultimately cause families most distress and not the physical problems. Condeluci (1985) referred to the former group as the most disabling consequences of head injury. Oddy (1995) states that ªChanges in cognition and emotional responsiveness may alter the core characteristics of the person. Many studies have suggested that it is these changes in personality that cause relatives most distressº (p. 167). An Israeli study by Rosenbaum and Najenson (1976) found that wives of head injured soldiers were more distressed than wives of soldiers with spinal injury. Brooks and McKinlay (1983) also found that distress in relatives was likely to increase over time. Wearing (1992) provides numerous examples of stress on families. She says that

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although the vast majority of brain injured people live with their families, the families themselves have to cope or fail to, largely unsupported. In an excellent chapter Wearing (1992) states: Families are often struck by the marked contrast between the frenetic activity surrounding the crisis of illness or head injury, when a hospital springs into action with emergency lights flashing, and then the long haul afterwards when the brain injured person and the family may be left largely to their own devices. Ironically, the family is typically excluded in the hospital: waiting in the corridor during the consultant's rounds, confined to visiting hours. The doctor is usually a neurologist, neurosurgeon, or general physician whose knowledge may not extend beyond the brain tissue to the consequences of damage and the possibilities of rehabilitation. . . . Yet on discharge, the family may assume all responsibility overnight. (pp. 276±277)

8.20.3 PROBLEMS FACED BY PEOPLE WITH TBI Brain injured people present with a variety of problems, the nature of which depends in part on the site, extent, and severity of the damage and the age at which it occurred. Inappropriate early treatment may also add to resulting problems. Behavioral, motor, sensory, emotional, social, and cognitive problems are common after many kinds of brain injury. Some people may demonstrate all these problems while others demonstrate just one or two. Neuropsychologists may be involved in the treatment of any and all of these different problems. 8.20.3.1 Motor Problems Although motor problems are most likely to be treated by physiotherapists, who are trained to prevent deformities and contractures and to understand how to reteach motor skills, neuropsychologists can assist physiotherapists in encouraging success in rehabilitation in several ways. For example, knowledge of learning theory can be harnessed to improve motor learning as Robertson and Cashman (1991) showed when they improved the walking ability of a stroke patient through providing auditory feedback which increased the number of times the patient placed her heel properly. Their patient was a 29-year-old woman who had sustained several strokes which left her with unilateral neglect and frontal lobe problems. She caused difficulty in her physiotherapy sessions because despite being able to lower her heel to the floor on command, she nevertheless walked

with her left heel off the floor and in an unstable position. Anxious to avoid injury her clinical psychologist and physiotherapist devised a pressure-sensitive switch attached to a buzzer on the patient's belt. The switch was inserted under her left heel, and a walking program implemented. The woman's ability to make contact with her heel on the floor was gradually increased through a process of charting progress and setting goals. Improvements generalized to the patient's everyday life. Carr and Wilson (1983) also used a pressure switch to improve cooperation with a skin-care regime in a man with spinal cord injury and pressure sores. Behavioral assessment and task analysis can be used to measure and understand motor disorders. Wilson and Powell (1994), for example, describe a behavioral treatment program which led to a young head injured woman tolerating physiotherapy exercises. The young woman, severely injured in a road traffic accident, was causing problems in physiotherapy because she refused to do her exercises. She had contractures, that is, shortening of the muscles, which meant she could not straighten her arms and legs. These contractures had developed during her three-month period of coma following the accident. She had also developed ªmyositis ossificansº as a result of the contractures. Myositis ossificans is the name given to a condition in which deposits of calcium accrue on the muscles. These caused the young woman considerable pain when she engaged in certain exercises. Nevertheless, she needed to do these exercises in order to gain sufficient flexibility for her family to manage to get her dressed, get her in and out of the car, and to the toilet. Following a behavioral analysis, it was determined that certain exercises caused her more pain and distress than others. There was one exercise she positively enjoyed. This was head balancing performed to improve head control. The ªPremack principleº (i.e., using a desired activity to reward an undesired activity) was employed together with shaping and positive reinforcement. The young woman was asked to increase the time spent on one ªdifficultº exercise by just a few seconds each day. If she succeeded she was praised and allowed to spend a few minutes on the head balancing exercise. Her success was also recorded on a wall chart. After five sessions on one difficult exercise, the procedure was applied to a second exercise and, later, to a third. The patient gradually tolerated longer at each exercise and her contractures slowly improved. A number of head injured people show good motor recovery if this is measured by functional mobility (McKinlay, Brooks, Bond, Martinage,

Problems Faced by People with TBI & Marshall, 1981) although they may show more subtle motor deficits. Brain stem damage, for example, can lead to difficulty controlling fine movements. Damage to the cerebellum may lead to gross tremor and a staggering gait. Frontal lobe damage may cause difficulty in initiating movements or may result in the poor sequencing of motor movements involved in such tasks as making a cup of coffee or changing bed linen. Focal lesions following, for example, stroke or tumor can lead to permanent and intractable motor impairments. 8.20.3.2 Sensory Problems Sensory impairments are also common after CNS damage. Hemiplegic stroke patients frequently lose sensation in their paralyzed limbs and may, as a consequence, damage themselves by trapping a leg in the spokes of a wheelchair or by burning an arm as a result of leaving it too close to a radiator. Visual sensory deficits are common following stroke, head injury, tumor, and other kinds of brain damage. Some studies have suggested that it is possible to reduce hemianopia in stroke patients (Zihl, 1990), although others have disputed this (Pommerenke & Markowitsch, 1989). Even if reduction of hemianopia is unachievable, hemianopic patients can be taught to compensate for their visual field loss through, for example, improved scanning (Kerkoff, MuÈnbinger, Eberle-Strauss, & StoÈgerer, 1992). It is even possible to reduce other visual deficits such as myopia through treatment procedures. Collins, Ricci, and Burkett (1981) improved the short-sightedness of nonbrain damaged people and Thomas (reported in Wilson, 1991b) achieved the same effect with a young head injured woman whose poor visual acuity resulted from a motor cycle accident. Auditory sensory problems are less frequently encountered, although occasionally head injured people become deaf as a result of the accident. It is sometimes possible to teach these people sign language or another alternative communication system. Typically these programs are implemented by speech and language therapists, although neuropsychologists may also take on such treatment, either alone or working together with the speech and language therapists. Once again, principles from learning theory and other branches of psychology can enhance learning. 8.20.3.3 Emotional and Social Problems Emotional and social difficulties, including fear, anxiety, depression, and social isolation,

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are faced by perhaps the majority of brain injured people. Prigatano (1995) believes that dealing with the emotional effects of brain injury is crucial to rehabilitation success. Depression and anxiety can be expected in about two-thirds of patients with TBI (McKinlay et al., 1981). TBI patients are also likely to face social isolation (Talbott, 1989; Wilson, 1991a). Emotional changes are also seen frequently in stroke patients. Left and right hemisphere strokes tend to cause different emotional problems. Those with right hemisphere lesions are likely to show denial or indifference to their problems (Heilman, Watson, & Bowers, 1983), while those with left hemisphere lesions are more likely to show ªa catastrophic reaction.º Patients with brain stem strokes may well show extreme emotional lability (Ross, 1983). Of course emotional and social problems can also occur for nonorganic reasons such as problems with mobility, financial restrictions, or fear of what might happen in the future. Gainotti (1993) distinguishes three main factors that cause emotional and psychological problems after brain injury. First are neurological factors that provoke disturbances by the disruption of the specific neural mechanisms subserving the regulation and control of emotional and social behavior. Second are psychological or psychodynamic factors involving attitudes towards the disability arising from awareness of the disability and its implications for the patient's quality of life. Third are the consequences of the functional impairment on the patient's social network and social activities. The majority of clinical psychologists and some neuropsychologists are well placed to deal with the emotional and social consequences of brain injury. Anxiety management procedures, cognitive therapy, and other methods for dealing with depression, family therapy, and social skills training can all be applied to brain injured people as well as to those whose mental health problems arise from psychiatric causes.

8.20.3.4 Behavior Problems Behavior problems, frequently seen at some stage in people with severe head injury, may worsen over time if not treated properly (BPS report, 1989). They certainly cause great stress for families and caregivers (Brooks, 1984). Livingston, Brooks, and Bond (1985) report that families of head injured people show twice the level of psychiatric dysfunction than can be expected in the general population.

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A growing awareness of the importance of behavioral management programs is reflected in a number of publications (Alderman & Burgess, 1994; Alderman & Ward, 1991; Hanlon, Clontz, & Thomas, 1993; Wilson, 1991b; Wood, 1988). Common problems associated with severe head injury include yelling and swearing. Less common but more difficult to manage are physical violence and sexually offensive behaviors. Such problems may result in patients being admitted to long-term psychiatric care. Even very severe behavioral disturbance, however, may respond to behavior modification regimes (Alderman & Burgess, 1994; Alderman & Ward, 1991; Eames, 1989; Wood, 1984). Shiel, McLellan, Wilson, Evans, and Pickard (1996) provide some tentative evidence that violent behavior is more likely to occur in TBI patients who do not receive rehabilitation.

8.20.3.5 Cognitive Problems Finally, we address cognitive problems, which almost always occur after severe TBI and frequently follow other causes of brain damage, and are probably of most interest to the majority of clinical neuropsychologists. Disorders of learning and memory, information processing, planning and organizational problems, slowness of intellectual activity, and communication are all common after TBI (Ponsford et al., 1995). Less common are the agnosias, apraxias, and aphasias although these are often found after stroke, hypoxic brain damage, and some tumors. There has been an increasing interest in the management and remediation of cognitive deficits since the early 1980s (Diller & Gordon, 1981; Riddoch & Humphries, 1994; Seron & Deloche, 1989; Trexler, 1982; Uzzell & Gross, 1986; Wilson, 1987). Cognitive rehabilitation programs are now found in many rehabilitation centers. These may be part of the ªholistic programsº of Ben-Yishay (New York) Prigatano (Phoenix), and Christensen (Copenhagen) (see Ben-Yishay & Prigatano, 1990; Christensen, 1994, and Prigatano, 1994 for more detailed descriptions), or specifically tailored to particular cognitive problems such as memory (Wilson, 1995), attention (Sohlberg & Mateer, 1989) executive deficits (Alderman, Fry, & Youngson, 1995; von Cramon & Matthes-von Cramon, 1992), and language (Byng & Coltheart, 1986). Whatever the approach, the aim of cognitive rehabilitation is to enable brain injured people and their families to live with, manage, by-pass, reduce, or come to terms with cognitive deficits resulting from an insult to the brain (Wilson, 1989b). This is achieved through

a process in which brain injured people work together with health service professionals to remediate or alleviate cognitive deficits. Cognitive, emotional, and behavior problems are far more likely to impede return to work or independent living than the more obvious physical problems. Although physical restrictions can indeed be traumatic for the individual concerned, physically handicapped people can and do achieve independence, hold down a job, and make rational decisions about their lives. People with cognitive handicaps, however, may have impaired judgment and be slow to learn new things; they may be unable to remember what they were doing a few minutes ago, and be very slow to process information. As a consequence, they may remain permanently dependent on their families. Many of these are unaware of the extent of their problems and may think they can do things just as well and just as quickly as they were able to do before the brain injury. Such lack of insight is likely to impede rehabilitation efforts. Behavior problems can exacerbate the situation as people with tantrums and poor self-control are not readily tolerated in society. Apathy and indifference reduce the chances of obtaining and holding down a job. Personality changes, mood swings, inappropriate social behavior, concrete thinking, and loss of sense of humor all reduce the chances of successful reintegration into society. 8.20.4 ASSESSMENT OF PEOPLE WITH TBI Assessment of people with brain damage, like any other assessment, is conducted in order to answer questions. The nature of these questions determines the assessment procedure used. In the case of a brain-injured patient it is important to know a patient's cognitive strengths and weaknesses. Is there intellectual impairment? Is speed of processing information slower than one would expect for the patient's age? Is memory functioning affected and if so, which aspects of memory are intact and which impaired? What kind of language (or perceptual or reading) disorder is present? 8.20.4.1 Models of Assessment Before treatment is planned, these questions must be addressed. Formal psychological and neuropsychological tests can usually answer these sorts of questions reasonably well. Formal, standardized tests used by neuropsychologists have been influenced by a number of theoretical approaches. The psychometric approach, for example, is based on statistical

Assessment of People with TBI analysis and includes measures of reliability, validity, and performance of a selected sample of a given population. (See Anastasi, 1982, for a succinct account of the characteristics of psychological tests.) The Wechsler Adult Intelligence Scale (WAIS) and the Wechsler Adult Intelligence Scale-Revised (WAIS-R) (Wechsler, 1955, 1981) are two examples of tests influenced by psychometry. Obviously, when a trained rehabilitation clinician uses a test of this kind, more than a mechanistic documentation of results will be produced. Such a clinician will understand the principles on which the test has been created and the relevance of data collected in support of the instrument's standardization, validity, and reliability. Without such an understanding, it is unlikely that good diagnosis will follow testing. The identification of such neuropsychological syndromes as agnosia and apraxia requires a different form of assessment, in which the examiner must eliminate or exclude explanations for a particular problem. For example, to diagnose the recognition disorder known as visual object agnosia, the examiner must eliminate poor visual acuity and naming disorders as explanations of the failure to recognize objects. Lezak (1995) discusses both theoretical and practical considerations in her comprehensive account of the characteristics of neuropsychological assessment. The development of theoretical models in the field of cognitive psychology has provided a rich source of theoretical support for the assessment of brain-injured people. For example, the working-memory model (Baddeley & Hitch, 1974) has influenced the assessment of neurologically impaired people, particularly those with Alzheimer's disease and other memory disorders. This model has enabled clinicians to assess separately the individual components of working memory, visual and verbal memory, and semantic and episodic memory. Furthermore, the model helps explain or predict such differences as those seen between people with short- and long-term memory deficits. Similarly, a model of reading proposed by Coltheart (1985), suggesting that readers can either use the whole word lexical route or the phonetic route, has led to a more careful and systematic analysis of acquired disorders of reading. (See Wilson, 1987, and Wilson & Patterson, 1990, for a more detailed discussion of these issues.) Localization studies from neuropsychology provide another approach to assessment, whereby the examiner attempts to assess deficits in, for example, the functioning of the right and left hemispheres, the frontal lobes, the temporal lobes, and so forth. The Halstead±Reitan

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battery (Halstead, 1947; Reitan & Davison, 1974) is an example of this approach. The battery was originally used to discriminate among patients with frontal lobe lesions or between frontal patients and normal controls. While these theoretical approaches to assessment offer relatively sophisticated diagnoses of individual patients, they do not, and indeed cannot, address other important issues arising from cognitive and neuropsychological deficits. They cannot, for example, address the effects on patients in terms of how their daily lives will be altered, and how changes after insult will affect the lives of relatives. The enormous personal and social problems confronted by patients and their relatives in their home environments are a major concern for those working with brain injured people. Because these problems are not a primary concern for theorists working in such areas as localization, neuropsychological syndromes, or cognitive psychology, there is the danger of a split developing between theorists and practitioners. Indeed, I believe these different perspectives have led to division between theorists and practitioners in the past. But this division has very little substance and simply requires greater understanding of differences in role and purpose on the part of the protagonists to ensure that theory and practice are mutually supportive whenever this is possible and appropriate.

8.20.4.2 Behavioral Assessment For those working in rehabilitation, behavioral assessment is an approach that is both theoretical and practically applicable to problems encountered in the everyday lives of patients. Behavioral assessment can bridge the gap between diagnosis and treatment in ways that other forms of assessment cannot. It is a major force in rehabilitation precisely because it can address a problem as it affects a patient's well-being. In behavioral assessment one can answer questions such as the following: What problems cause the most distress to a patient's family? How many times does this person ask the same question in the course of a day? Does this person bring a notebook to therapy sessions? Does this person remember to put on wheelchair brakes before transferring to the toilet? When questions like these are answered, a relevant treatment can be implemented. Checklists, interviewing scales, and direct observation can all be used to identify and monitor the everyday implications of neuropsychological impairment (see Wilson, 1987, 1989a, for further discussion). One of the ways

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in which behavioral assessment differs from standardized testing is that it is usually part of the treatment process itself. Behavioral assessment identifies problems for treatment and can evaluate the effectiveness of that treatment. Consequently, the therapist or psychologist continues to assess the patient while treatment is progressing. Treatment can thus be modified or altered in response to information obtained. It is this inherent dynamism that is so useful to the rehabilitator: doors are always kept open, and alternative routes can be tried (i) in order to make life more bearable for the patient, and (ii) to make the behavior of the patient more conducive to tolerable living. I want to emphasize here that there is no one right way to assess a brain-injured patient, and no one discipline can answer all questions arising during rehabilitation. When assessing a particular patient, the clinical neuropsychologist should draw from a number of disciplines and should keep in mind that theoretical principles and models are not necessarily static, but are there to be modified in the light of experience. Above all, good theory is dynamic and can grow as knowledge is extended. Neuropsychologists who continually relate practice to theory and keep up with current academic discussion are likely to find their rehabilitative work is indeed supported by a sturdy theoretical framework. An example of an assessment of an 18-year-old girl with TBI following a horse riding accident is provided to illustrate how psychometric, neuropsychological, and behavioral approaches contributed to (i) better understanding of her problems and (ii) planning for rehabilitation. J was involved in a serious horse riding accident when she was 17 years old. She sustained a very severe head injury and was in coma for 3 months. A few months later, by which time she was 18, J was admitted to a rehabilitation center and underwent a neuropsychological assessment. The first test administered was the WAIS. Results from the verbal subtests suggested that J's IQ was in the average range. It was not possible to estimate her performance IQ because of severe perceptual difficulties. Despite a gross tremor due to cerebellar damage, J had the motor ability to perform the tasks but she was not able to identify the visual stimuli. Furthermore, this difficulty extended to written words. She could not, therefore, do the National Adult Reading Test, a test often given to estimate premorbid ability (Nelson, 1982). We knew that J had been studying for examinations (O-levels) at the time of the accident that suggested that she was probably functioning in the average range before her head injury.

Standardized memory tests indicated normal immediate memory with severely impaired delayed memory for both visual and verbal material. A summary of results from standardized tests (see Figure 1) was presented as a graph in the manner described by Lezak (1979). This was shown to the other staff who could see at a glance where J's main cognitive strengths and weaknesses lay. Further assessment was carried out using other models described above. It became clear during administration of the WAIS that J could not recognize visual stimuli. For example, she thought a picture of a pig (in the picture completion subtest) was a hippopotamus. This difficulty could be due to (i) poor acuity, (ii) a naming disorder, or (iii) an object recognition disorder. Poor acuity was excluded as J could do a number of tests involving eyesight. She could also name to description well, provided the function of the object to be named was described rather than the physical appearance. Furthermore, her vocabulary was good, she just did not know what things looked like. When asked ªWhat is an eagle?,º she replied ªA carnivorous bird,º but when asked ªWhat does an eagle look like?º she said, ªit has four legs, lots of teeth and a long tail.º J turned out to have a visual object agnosia (see Wilson & Davidoff, 1993, for further details). Thus, agnosia was diagnosed by excluding other explanations for her object recognition problem. Cognitive neuropsychological models of reading were employed to try to understand the nature of J's reading deficit. In particular, Coltheart's (1985) dual-route model of reading helped explain that J's problem lay at a very early stage, namely identification of visual stimuli. Later when J had been taught to read again it was possible to see that she had permanent damage to the ªwhole wordº route but was able to use the phonological route, that is, build up words from their sounds. Consequently, J changed from being alexic (totally unable to read) to being surface dyslexic (able to read regular but not irregular words). For a description of her reading program see Wilson (1987). Finally, we needed to know how J's problems manifested themselves in real life. Direct observation was employed to note problems caused by her agnosia. It became clear that J had no major difficulty in structured situations when objects were in ªcontextº and in their right place. She could manage at the toilet, she could feed and wash herself, and could dress herself provided clothes were given one at a time and J was told what they were.

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Principles and Practices of Rehabilitation FUNCTION LEVEL OF Vocabulary Reading Reasoning Arithmetic Perception ABILITY

Visuopractic

Immediate Delayed memory memory

Superior High average Average Low average Borderline Impaired

Figure 1

J's cognitive strengths and weaknesses as identified by standardized tests (adapted from Lezak, 1979).

However, when things were out of context or when there were several choices, J became confused. She once said to a nurse on the ward ªIs this toothpaste?º ªYes,º said the nurse. ªGood,º replied J, ªbecause yesterday I cleaned my teeth with Vaseline and the day before with hair cream.º J also had problems when out for a walk. She thought two dogs across the river were ducks, she could not distinguish cats, dogs, and sheep although she could distinguish people. Sometimes people thought she was stupid for her mistakes but more often they thought she had bad eyesight. Yet it was not her eyes at fault but the interpretation of what she saw. As a result of these different approaches, it was possible to build up a detailed picture of J's cognitive strengths and weaknesses, provide a theoretical explanation of the observed phenomena and plan a coherent rehabilitation program.

8.20.5 PRINCIPLES AND PRACTICES OF REHABILITATION Rehabilitation is a two-way process. Unlike treatment, which is given to a patient, rehabilitation is a process in which the patient, client, or disabled person takes an active part. Professional staff work together with the disabled person to achieve the optimum level of physical, social, psychological, and vocational functioning. The ultimate goal of

rehabilitation is to enable the person with a disability to function as adequately as possible in his or her most appropriate environment. 8.20.5.1 Restoration of Function In the early days and weeks following brain injury, attempts are usually made to restore lost functioning. Thus therapists working with stroke patients who have lost the ability to walk and talk will try to teach the patients to walk and talk again. After a while, however, if restoration of function has not occurred, therapists are likely to adjust their objectives and perhaps concentrate on the goal of wheelchair independence or teach an alternative communication system. Both of these are acceptable approaches to rehabilitation (Diller, 1994). It is not always easy to decide when attempts towards restoration of function should be abandoned. In the early days, weeks, and even months after brain injury, recovery or partial recovery may be rapid. Even though the rate of recovery slows down later, it may nevertheless continue for several years (Robertson & Wilson, in press). It is probable that natural recovery can be enhanced or facilitated through rehabilitation. For example, lesioned animals placed in stimulating, enriched environments show greater recovery than animals left in unstimulating, barren environments (Gentile, Gren, Neiburgs, Schmelzer, & Stein, 1978; Kolb, 1992). Enriched environments also appear to lead to greater

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cortical recovery (Black, Sirevaag, & Greenough, 1987; Mayer, Brown, Dunnett, & Robbins, 1992) Furthermore, Mayer et al. (1992) showed that rats given striatal neural transplants only benefited from transplants when they were also given opportunities for learning. It is likely that enriched environments for humans also lead to greater recovery. Brain injured patients placed in unstimulating rooms are likely to do less well than those receiving rehabilitation. Stimulation has been shown to change cortical activity in brain injured humans. Lindgren, Hagstadius, AÊbjoÈrnsson, and érbñk (1997) gave 14 patients with organic solvent induced encephalopathy a 10-week program of visual imagery training, following which a change in right hemisphere regional blood flow was observed during activation. Hemiplegic stroke patients also show greater recovery when forced to use their weak limb through immobilization of the nonaffected limb (Taub et al., 1993). Attempting to restore lost functioning represents only one aspect of rehabilitation. Teaching or enabling people to compensate for their deficits and psychotherapy to address the emotional problems and enhance self-esteem are others. The provision of counseling, education, and support is yet another. Prigatano (1995), Jackson and Gouvier (1992), and Wilson (1995) address some of these issues. Our concern in this section is compensation, which is a widely used strategy in rehabilitation, particularly when the rate of natural recovery has slowed down or stopped altogether. Compensation can be achieved in several ways. 8.20.5.2 Environmental Restructuring One can avoid or bypass certain problems through restructuring the environment. Compensation is thus achieved by removing the patient's need to function in a particular way and that function is provided by the environment. As an example, consider people who are totally paralyzed from the neck down. With the appropriate equipment they can control their physical environments through a voice-activated control mechanism or by using their mouths to control a stick. Through these mechanisms they can open and close doors and windows, turn the pages of a book, answer the telephone and so forth. The disabled person controls the structured environment through his or her mouth and no longer needs the use of limbs to do this. Similarly, a person with severe intellectual impairments can be enabled to function in a suitably structured environment with signposts, labeling of doors, reminders

from staff, and alarms which alert carers if the person wanders off. ªSmart housesº for people with cognitive deficits are already being designed for people with dementia (Slaven, personal communication) in an attempt to ªdisable the disabling environment.º These environments are controlled by computers, video links, and telephones and they can remind people about toilets, baths, and medication, ensure that showers are the right temperature and turn electrical appliances on and off. 8.20.5.3 Anatomical Reorganization It might be possible to achieve compensation through anatomical reorganization thereby enabling undamaged areas of the brain to take over the function of the damaged area. Although we know this can happen in babies and infants (Kohn & Dennis, 1978), it is often at the expense of other functions (Dennis & Kohn, 1975) and it is less clear to what extent this happens in adults. Robertson and Wilson (in press) consider this in some detail. 8.20.5.4 Using Residual Skills More Efficiently Perhaps the two most important types of compensation in neuropsychological rehabilitation are (i) teaching people to use their residual skills more efficiently, and (ii) finding an alternative way to achieve the desired outcome. In this approach it is assumed that some residual functioning remains. Thus people with amnesia do not lose all memory functioning and can possibly be helped to use what little remains more effectively. This might include allowing extra time to learn new information, making associations between the new information they are trying to remember and old information they already know. Mnemonics, for example, probably work because they allow previously isolated items to become integrated with one another (Bower, 1972). Many of the memory therapy techniques described by Wilson (1987) follow this approach. Rehearsal techniques such as Landauer and Bjork's (1978) method of expanding rehearsal have been employed by Moffat (1989) to teach new words to a woman with nominal aphasia, and by Camp and Schaller (1989) in their work with Alzheimer's patients. In both these studies people were helped to use their residual skills more efficiently. 8.20.5.5 Alternative Solutions Finding an alternative solution to a problem or relying upon an intact cognitive skill to

Principles and Practices of Rehabilitation compensate for one that is damaged is one of the most long-standing procedures in rehabilitation. Zangwill (1947) believed it to be an important approach in rehabilitation and gave as an example of teaching people with a right hemiplegia to use their left hand. Later Luria et al. (1969) described the principle of ªfunctional adaptation,º that is, if you cannot do something one way, find another way to do it. Many of the aids provided by occupational therapists for activities of daily living can be described as functional adaptations. Equipment for disabled people provides an alternative solution to tasks such as dressing, eating, and cooking. This practice also works well in cognitive rehabilitation. Teaching dysphasic people to communicate with sign language (Skelly, 1979) or visual symbols (Gardner, Zurif, Berry, & Baker, 1976), ªtalking booksº for people who are blind and the use of memory aids for people with amnesia are all examples of compensation through finding an alternative solution. Wilson and Watson (1996) discuss the development of compensatory behavior in people with severe memory problems. They also consider which characteristics predict good use of compensations. Age (younger than 30 years at the time of the brain injury), less severe memory deficits, and absence of additional cognitive problems appear to be the most important predictors. These different approaches to rehabilitation are not mutually exclusive and can be used in combination. For example, a memory impaired person may be helped (i) by reorganizing the environment to reduce the load on memory, (ii) by being taught to use external memory aids, that is, use a functional adaptation approach, and (iii) by being encouraged to use residual skills more efficiently when learning new information through employing mnemonics and rehearsal strategies. It should be noted, however, that severely memory impaired people rarely use mnemonics spontaneously. Therapists or relatives typically supply the mnemonics, whose main value is that their use leads to faster learning. Wilson (1992) offers more detailed discussion of the use of mnemonics with memory impaired people. An example of a memory rehabilitation program for a head injured man is provided below. Fred was injured in a road traffic accident when he was 54 years old. He sustained a severe head injury with a coma lasting 10 days. Three months later he was discharged from hospital having made a good physical recovery. His main problem at this stage was his memory. He had virtually no recall of what he had been doing a few minutes earlier. He asked the same questions so often he irritated his wife and son

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almost beyond endurance. He lost his belongings, could not remember where to meet his wife on shopping trips, and had difficulty learning any new information such as new telephone numbers or the name of his granddaughter born during his stay in hospital. Fred was seen as an outpatient for three hours a week. He received individual therapy for the first hour, then after a short break he spent two hours attending a memory group with five other people whose memory problems also resulted from a neurological insult. The individual treatment lasted for 12 weeks and the group sessions for 10 weeks. Fred's wife attended for part of each individual session. She completed a two-week ªmemory diaryº in which she recorded Fred's everyday memory failures. Certain problems appeared very frequently and some of these were selected for treatment. Fred lost his belongings several times a day, particularly his keys, spectacles, and diary. He could not remember where his socks, shirts, and other clothes were kept in the bedroom and became frustrated when he could not find them. He never knew what he was supposed to do each day or where he was going, and he regularly forgot his new telephone number which had changed a few months earlier. A number of strategies were implemented over the following weeks. Fred's wife was helped to arrange the house to make it easier for Fred to find his belongings and also to find his way around. She wrote labels for his chest of drawers and wardrobe so that he could see at a glance where his socks, shirts, and ties were. She tidied his shelves and made boxes for his keys and spectacles. She encouraged Fred to return his keys and spectacles to the same place every time he finished using them. When he took his keys out of the house he was prompted to clip his keyring to his belt so he would not lose his keys. She bought a smaller diary than the one Fred had been using so that Fred could keep it in his pocket. These small adjustments to the environment enabled Fred to be more independent. They also reduced his frustration. Furthermore, he gradually learned to put his keys and spectacles away without prompting. The next step was to teach Fred to use his diary more efficiently. He wore a watch with an alarm. The plan was to set the alarm to sound every hour during waking hours and to teach Fred to check his diary every time the alarm sounded. A few practice sessions were needed first. The alarm sounded and Fred was prompted to look at his diary. It sounded a minute later and he was prompted again. We then set the alarm to sound two minutes later and he was prompted again, although by now he

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was initiating the action himself. In fact through prompting and expanding rehearsal (i.e., gradually increasing the test interval), Fred rapidly learned this easy ªpaired associateº task. As well as checking his diary, it was also important for Fred to record information and to cross off each task or appointment once it was completed. This was also achieved through prompting and then fading out the prompts much in the way described by Kime, Lamb, and Wilson (1996). Fred learned to use his diary through the provision of very close supervision and structure initially and then slowly withdrawing the amount of help required. If Fred had been seen a year or two later we would have considered using NeuroPage, a simple to use but highly effective paging system developed in California (Hersh & Treadgold, 1994) and evaluated in the UK (Wilson, Evans, Emslie, & Malinek, 1997). We then tackled the problem of the new telephone number and the new granddaughter's name. Fred was taught these without too much trouble by using a combination of errorless learning and expanding rehearsal. Errorless learning, originally used with pigeons (Terrace, 1963) and then with learning disabled people (Sidman & Stoddard, 1967), is a method of teaching which avoids trial and error and ensures success at the beginning of the learning process. Baddeley and Wilson (1994) and Wilson, Baddeley, Evans, and Shiel (1994) demonstrated that this method was effective for teaching memory impaired patients new information. Fred was provided with the telephone number written on a card. He was ªtestedº with the number in front of him and in full view for several trials. He then had to repeat the number immediately after removal of the card. After several trials using this method, Fred was tested after two-second delay. After several more trials the delay was increased to four seconds and then eight and so on. At the first sign of hesitation the number was provided for him. We planned to return to an earlier and easier delay if Fred made an error, but fortunately he did not and the new number was learned within the first half hour of a one-hour session. Fred then had to demonstrate generalization of his new knowledge by telephoning his home several times. His new granddaughter's name was taught in a similar way. Fred's wife was also given information and explanations about her husband's problem and what to expect. Her many questions were answered to the best of our ability and she was given some easy to digest literature to read to back up our information and explanations. Written advice was provided on the best way to manage some of Fred's problems.

The main purposes of the group sessions were to reduce Fred's anxiety and increase his opportunities for social interaction (Evans & Wilson, 1992; Wilson & Moffat, 1992). We also hoped he would imitate his peersº use of external aids and have an opportunity to try out his own strategies. Thus, Fred's program incorporated: (i) reorganization of his environment to reduce the load on his memory, (ii) teaching him to use his diary more efficiently, (iii) helping him to use his residual skills through errorless learning and expanding rehearsal, and (iv) reducing anxiety through attendance at a memory group. 8.20.6 COGNITIVE REHABILITATION ªCognitive rehabilitation is a process whereby brain injured people work together with health service professionals to remediate or alleviate cognitive deficits arising from a neurological insultº (Wilson, 1996, p. 637). In the late, 1990s there would appear to be four main approaches to cognitive rehabilitation: (i) those focusing on cognitive retraining through drills and exercises; (ii) those based on models from cognitive neuropsychology; (iii) those combining theory and practice from neuropsychology, cognitive psychology, and behavioral psychology; and (iv) those using a holistic approach by addressing emotional, motivational, and other noncognitive aspects of functioning in addition to cognitive aspects. 8.20.6.1 Cognitive Retraining The cognitive retraining approach seems to rely upon the assumption that it is possible to remediate underlying cognitive deficits (or at least to teach patients how to deal with their cognitive problems) by exercise, practice, and stimulation. It is therefore akin to the ªmental muscleº approach (Harris & Sunderland, 1981) which assumes that appropriate cognitive exercises can improve cognition in the same way that physical exercise can improve physical wellbeing and muscle tone. Such programs typically involve the presentation of patients with a cognitive exercise regime to work through. The exercises are often computerized. Gianutsos (1980) described one such treatment for a woman in her forties who had memory, perceptual, and reading problems following a meningioma and a stroke. Gianutsos reported that in total 23 cognitive rehabilitation sessions were conducted with this patient, both before and after discharge from the hospital to her home. ªThe sessions lasted from 45 minutes to two hours and occurred within a two-month

Cognitive Rehabilitation period, except for a follow-up session five months later. Cognitive retraining was organized around two tasks: (i) memory for short lists of three unrelated words with varying amounts of interference in the recall interval, and (ii) oral reading and recall of paragraphsº (p. 38) Many American programs seem to follow the exercise, stimulation, and practice model, including the original Diller (1976) program in which patients were taken through a series of training models to improve, for example, visual information processing or spatial awareness. Others who use a retraining exercise approach include ParenteÂ, Anderson-ParenteÂ, and Shaw (1989), who developed an ªiconic memory scanningº training to improve ªiconic retentionº; Adamovich, Henderson, and Auerbach (1985) and Sohlberg and Mateer (1989), who describe a range of exercises for improving various cognitive deficits; Lynch (1982), Bracy (1986), Gianutsos and Klitzner (1981) and others describe computerized cognitive retraining programs. There is a distinct lack of evidence that retraining through exercise is effective. Miller (1984) found little evidence of success for the stimulation, exercise, and drilling approach. Wilson (1982) reported no effect of exercise on memory functioning, a finding supported by Glisky (1995). In a fairly comprehensive review of computerized cognitive rehabilitation, Robertson (1990) found no evidence of significant changes in memory, visuoperceptual, or visuospatial functioning as a result of computerized training. Language training programs for highly specific disorders fared a little better although there was no published evidence of more general effectiveness of computerized language training. Only in attention training were there some positive results, although even here the results were contradictory, with some studies reporting positively and others negatively. Since Robertson's (1990) review paper, further computerized attentional training programs have appeared support of the tentative evidence available in the 1980s. Gray, Robertson, Pentland, and Anderson (1992) found that on a number of outcome measures a group of brain injured patients receiving computerized attentional retraining were marginally better than a control group of brain injured patients receiving recreational computerized training. However, six months later the experimental group did significantly better than the control group on two tests of attention, indicating benefits at follow-up that were not apparent at the time of training. Sturm and Willmes (1991) gave computerized training to right and left hemisphere damaged stroke patients. Right

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hemisphere damaged patients showed more pronounced impairments of sustained attention and vigilance, whereas left hemisphere damaged patients were worse on choice reaction tasks. Both groups improved with training on a number of attention functions but not for vigilance. Moreover, the training effects were less pronounced for the right brain damaged group. Just as Robertson reported in 1990, Sturm and Willmes (1991) also found no evidence of generalization to more general cognitive functions or to real life tasks. Despite the lack of evidence, there are still those who believe in the exercise/drilling approach. Gianutsos (1992), for example, said, ªrestoration as a goalº should be pursued ªeven when that goal might be remoteº because patients view it as appropriate (p. 29). Further problems with the retraining through exercising approach, however, include: (i) It fails to address the functional manifestations of cognitive problems as experienced by brain injured patients in real life, that is, it tackles impairments as measured by tests rather than disabilities as measured by problems encountered in everyday life. Learning lists of words or identifying particular stimuli on a computer screen is not, as a rule, of any particular concern to brain injured people. (ii) The approach fails to address generalization problems. The only point to ªcognitive retrainingº would be if improvements on the training tasks generalized to real life, but to date we have no convincing evidence of this. Furthermore, without such evidence it would seem wrong to build in unnecessary steps for brain injured clients, who typically have problems learning, especially when they could be taught directly the information or skills they require for real life functioning. (iii) Emotional, social, and behavioral sequelae of brain injury are ignored yet these can be just as handicapping as cognitive difficulties (McKinlay et al., 1981; Thomsen, 1985). Patients and families are sometimes in danger of exploitation through unscrupulous companies, selling computers and software to people desperately hoping for some improvement in their daily lives. (iv) This approach lacks any theoretical underpinning.

8.20.6.2 Cognitive Neuropsychology Cognitive neuropsychological theoretical approaches use a cognitive model, typically of language or reading, to identify the specific deficit of an individual patient. The deficits are often very precisely identified by the models. The underlying rationale would appear to be that once a deficit can be identified it can be

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treated. In the words of Coltheart (1991), ªOne needs to have in mind a model of how naming is normally achieved before one can begin to seek to understand impairments of naming consequent upon brain damage; and one needs this understanding before one determines what kinds of treatment could be appropriateº (pp. 216±217). In the UK and some other European countries this approach is held in high esteem. Eminent proponents are Coltheart (1991), Colheart, Bates, and Castles (1994), Riddoch and Humphries (1994), Seron, van der Linden, and de Partz (1991), and Mitchum and Berndt (1989, 1995). A typical rehabilitation program within this approach would involve a careful assessment (following one's particular model) to identify the component(s) of the model that are dysfunctional. Having carefully analyzed the deficit ªthe treatment is selected specifically to fit in with the theoretical interpretation of the functional impairmentº (Mitchum & Berndt, 1995, p. 7). The treatment itself, however, typically includes practice at the damaged component of the model. Although we saw earlier that practice is not a good rehabilitation strategy, it would be argued by cognitive neuropsychologists engaged in rehabilitation that the drilling practice and exercising approach fails because it fails to identify the damaged component precisely enough. Even among cognitive neuropsychologists there are critics of this approach. Caramazza (1989) remained unconvinced of the value of models for rehabilitation. Wilson and Patterson (1990) claimed that the recent interest in treatment on the part of neuropsychologists has been almost entirely for the benefit of the scientist rather than the patient. Baddeley (1993) suggests that cognitive neuropsychology has learned a great deal from the study of brain damaged patients over the past 20 years but it is by no means clear that brain damaged patients have benefited from cognitive neuropsychology. One of the major problems with this approach is that while cognitive neuropsychological models are extremely useful in identifying the nature of the deficit, and for explaining observed phenomena, they provide little or no information on ways of treating the deficit (Wilson & Patterson, 1990). In other words, they tell us what to treat but not how to treat. Or, putting it in other terms, this approach can be extremely good at identifying the impairment, but has little or nothing to offer when it comes to treatment of the disability, which is the real business of rehabilitation. These terms come from the conceptual framework developed by the World Health Organization (1980). The framework suggests

classifying the sequelae of brain injury into impairments, disabilities, and handicaps. Impairments can be regarded as damage to physical or mental structures (for example, parietal lobe damage); disabilities refer to the particular problems caused by the impairment (for example, being unable to get from a wheelchair to the toilet because of unilateral neglect and spatial attention difficulties). Handicaps can be seen as problems imposed by society because of someone's disability (for example, a person in a wheelchair is handicapped in a building without wheelchair access but not in a building with wheelchair access). A further limitation is that the theoretical cognitive neuropsychology approach is best suited to patients with relatively pure deficits. Indeed, rehabilitationists adopting models from cognitive neuropsychology typically seek out such patients, and typically report single cases. Of course single cases are invaluable for confirming or disconfirming theories (Shallice, 1979), and as Caramazza (1989) wrote, ªExperimental research with brain damaged patients . . . has had as its explicit goal that of informing theories of normal cognitive functioningº (p. 384). For many cognitive neuropsychologists, the raison d'eÃtre for their interest in rehabilitation is to develop, extend, or modify their models. In clinical practice the majority of brain damaged patients have multiple deficits and for this group theoretical models have been less useful. Because theoretical models tend to focus attention on test performance rather than ways in which cognitively impaired people dysfunction in everyday life, they are like retraining models focusing on impairment rather than disability. Patients rarely want or need to improve scores on tests in the face of far greater demands requiring them to function more efficiently in real life, in family, social, and vocational settings. If the subsequent cognitive rehabilitation offered by the theoretical cognitive neuropsychological approach was successful in terms of these real life needs of patients, then I would have one less objection to them, but so far there is little evidence of this happening. Typically, improvements on test scores are provided as evidence of success rather than some of the more functional measures such as reading for pleasure, greater confidence in using the telephone, or engaging more often in conversation. My opposition is not aimed at the models per se, and indeed, regarded as tools that have enabled us to come to a greater understanding of the nature of a number of cognitive impairments I am deeply appreciative. However, like Caramazza and Hillis (1993), I would

Cognitive Rehabilitation argue that understanding on a theoretical level, although essential, is not a sufficient requirement on its own to address rehabilitation as conceived of by the World Health Organization when they describe it as ªenabling people to achieve optimum social integration.º Cognitive neuropsychological approaches fail to address emotional, social, or behavioral sequelae of brain injury, yet, as we noted earlier, these are often more handicapping than the cognitive if not addressed properly. 8.20.6.3 Combined Approaches The combined approach, involving learning theory, cognitive psychology, and neuropsychology, is perhaps practiced most in the UK, and probably reflects British clinical psychology training. I return to this later in Section 8.20.8. A behavioral approach is usually incorporated into neuropsychological rehabilitation because it provides a structure, a way of analyzing a problem, of assessing everyday manifestations of difficulties, of evaluating the efficacy of treatment, and because there are numerous treatment strategies that can be modified or adapted for brain injured patients (Lincoln, 1978; Wilson, 1987, 1989a, 1991b). Although formal behavior modification programs are used in some centers (e.g., Wood, 1987; Wood & Eames, 1981), many psychologists engaged in cognitive rehabilitation are less inclined to use the more rigid behavioral approaches of Skinner (1953) or Kazdin (1975) and more inclined to use elements such as task analysis and behavioral assessment, together with other strategies such as anxiety management and systematic desensitization. However, behavioral approaches are not in themselves sufficient for our purposes in cognitive rehabilitation. A better understanding of theory and the organization of the brain are required, hence the incorporation of cognitive and neuropsychology into the programs. Ponsford et al. (1995) also use this broad approach in their work in Australia. Wilson (1984, 1987) puts forward the case for the combined approach, although Lincoln (1978) had earlier used behavioral elements in neuropsychological rehabilitation, as indeed had Ince (1976, 1980). Robertson (1988, 1990) also comes from this school although he perhaps emphasizes the cognitive and neuropsychological aspects rather more than the behavioral. The basic principle upon which this approach is based is that the everyday problems of brain injured patients can be reduced. If the patient/ client fails to learn or fails to change, it is the psychologist who is at fault for not finding the

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right strategy. The main strengths of this approach are perhaps its emphasis on monitoring, record keeping, and evaluation of success or failure. One example of this combined approach is provided by Wilson (1988) in the treatment of a woman who sustained severe brain damage in an anesthetic accident. Despite being able to walk and talk, she was, nevertheless, unable to care for herself. She could not feed herself, drink from a cup unaided, dress herself, or manage herself at the toilet. Her problems were due to an extremely disabling apraxia, that is, a disorder of movement that is not due to paralysis, weakness, or failure to understand the task. The woman could manage the individual motor movements required but could not organize these movements into a coherent sequence. Formal assessment demonstrated widespread cognitive impairments across a number of domains. It was hard to explain the pattern of deficits in terms of a theoretical model, so a behavioral approach was adopted in which one goal was selected for treatmentÐdrinking from a cup alone. Detailed observations were carried out when she attempted to drink: she frequently misreached the cup, aiming too far to the right or left or too short or too far; sometimes she found the handle but could not grip and on other occasions she held the very top of the cup so that it was unstable. When she did get hold of the cup, she was often unable to let go of it. The task was broken down into nine steps and each step scored from 1 to 4 depending on the amount of help required (1 = manages this step alone and 4 = needs maximum physical guidance to achieve this step). Taking the woman through these steps enabled her to learn the task within a few trials. The procedure was then employed to teach her other self-care tasks. Thus a neuropsychological syndromeÐ apraxiaÐwas found to coexist with numerous other cognitive deficits. Although hard to find an adequate theoretical interpretation of her pattern of deficits, a behavioral approach enabled her to learn sufficient self care skills to remain outside institutional care. The behavioral approach included: (i) task analysis, (ii) careful behavioral assessment of each step in each task, and (iii) modification of a behavioral teaching strategy, namely chaining, to teach the task. To the outside observer the main problem would appear to be that this approach fails to address the patient's emotional needs. Prigatano (personal communication) says that the approach does not consider the patient's feelings. In practice, this criticism is perhaps more apparent than real, as the patient's concerns and anxieties are frequently addressed.

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Anxiety management strategies, particularly desensitization and relaxation, are commonly employed. In many programs patients are involved in setting their own rehabilitation goals, in monitoring their treatment, and in taking control of their own therapy. Nevertheless, it is true to say that patientsº feelings, emotions, and their self-esteem are not as a rule formally seen as part of their cognitive rehabilitation. Furthermore, it is common practice to focus on one aspect of cognitive dysfunction, such as memory, attention, or reading, rather than address a broader spectrum. 8.20.6.4 The Holistic Approach The ªholisticº approach, pioneered by Diller (1976), Ben-Yishay (1977), and Prigatano et al. (1986), ªconsists of well-integrated interventions that exceed in scope, as well as in kind, those highly specific and circumscribed interventions which are usually subsumed under the term `cognitive remediation' º (Ben-Yishay & Prigatano, 1990, p. 400). Proponents of the ªholisticº approach regard it as futile to separate the cognitive, the psychiatric, and the functional from the affective sequelae of brain injury (Ben-Yishay et al., 1985). Ben-Yishay's model (1985) follows a hierarchy of stages through which the patient must work in rehabilitation and these are: engagement, awareness, mastery, control, acceptance, and identity. Major themes of the daily programs include increased awareness, acceptance and understanding, cognitive remediation, development of compensatory skills, and vocational counseling. The rehabilitation day typically starts with a morning meeting of staff and patients, with the rest of the day structured around individual and small group therapy, together with a further meeting of all staff and clients. The individual sessions include cognitive training, psychotherapy, and other specific therapies as required (e.g., speech and language therapy or relaxation therapy). Group therapy also covers cognitive and psychotherapy, plus special groups as required (e.g., problem solving or communication). A relativesº group may be held once a week, and vocational counseling and work trials are usually included. Clinically, there appears to be little wrong with this approach. It is hard to find irrefutable evidence of its success but it has probably been subjected to more research on efficacy than other approaches (Diller, 1994); and, as Cope (1994) says, ªAlthough none of the outcome research provides definitive proof of rehabilitation efficacy, the sum of many studies . . . provides reasonably convincing evidence that

comprehensive rehabilitation does make a substantial difference in outcome of handicap for TBI (traumatic brain injury) patientsº (p. 218). Good as the holistic programs are, it is probably true to say they can be improved. Incorporating some of the positive aspects from the combined learning theory, cognitive psychology, and neuropsychology programs mentioned earlier might, for example, enhance their clinical effectiveness. Careful task analysis, baselines, monitoring, and the implementation of single case experimental designs should enable us to evaluate more easily the successes and failures. The implementation of theoretical models to (i) identify cognitive strengths and weaknesses, and (ii) explain observed phenomena should extend the boundaries of achievement for cognitive rehabilitation programs. There is increasing evidence that these programs result in less emotional distress, increased self-esteem, and greater productivity for participants than is observed in those patients who do not undergo such treatment (Prigatano et al., 1986, 1994), as well as evidence that these programs are cost-effective (Mehlbye & Larsen, 1994). 8.20.7 EFFECTIVENESS OF REHABILITATION Research into effectiveness can be divided into those studies looking at cost-effectiveness, those looking at clinical effectiveness, and those looking at improvement in the quality of life. In one American study of 145 brain injured patients (Cope, Cole, Hall, & Barkan, 1991), the estimated savings in care costs following rehabilitation for severely brain injured people was over ƒ27 000 per year. A Danish study (Mehlbye & Larsen, 1994) reported that spendings in health and social care for patients attending a nonresidential program were recouped in five years. The costs of not rehabilitating brain injured people are also considerable, given the fact that many are young with a relatively normal life expectancy (Greenwood & McMillan, 1993). In a review of rehabilitation effectiveness, Cope (1994) believed that postacute rehabilitation programs can produce sufficient savings to justify their support on a cost benefit basis. He also suggested that they could be run even more efficiently in the future. 8.20.7.1 Clinical Effectiveness Numerous studies have shown clinical improvement or reduction in disability in handicap

Conclusions: An Integrated Approach to Cognitive Rehabilitation following rehabilitation. One study (Aronow, 1987) showed no difference between a group of brain injured patients receiving rehabilitation and a control group not receiving rehabilitation. However, the group receiving rehabilitation was more impaired to start with, so caught up with the others through rehabilitation. Two studies (Fryer & Haffey, 1987; Mills, Nesbeda, Katz, & Alexander, 1992) found that training in real life activities yielded more positive results than trying to address underlying impairment. Two other studies (Blackerby, 1990; Spivack, Spettell, Ellis, & Ross, 1992) found that high levels of treatment delivered in a relatively short time were associated with better outcome. A followup study of head injured patients (Shiel et al., 1996) found those who received rehabilitation were far less likely to show physical aggression than those who did not. However, it is harder to find evidence directly comparing more than one of the four approaches described in this paper, although an interesting study by Rattok et al. (1992) looked at a comparison of different treatment mixes within a holistic program. They compared the different intensity of treatments for three groups of brain injured patients. All groups achieved the same success rate in terms of employment at six-months follow-up. The groups differed, however, in that those who spent most time in cognitive rehabilitation did better on cognitive tasks, those who spent more time on interpersonal skill training did better on tasks involving interpersonal skills, and those trained on both improved on both.

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evidence that rehabilitation reduces the effect of cognitive, social, and emotional problems, leading to greater independence on the part of the patient, reduction in family stress, and eventual employability for many brain injured people. 8.20.8 PROFESSIONAL ISSUES In order to achieve the skills necessary for the professional psychological tasks described here, neuropsychologists require a basic training in clinical psychology followed by specialization in neuropsychology as in the UK. The clinical psychology training should be generic, with all students spending part of their time working in adult mental health, child services, and learning disability. In addition to these compulsory placements, students choose three of four specialist placements which may include neuropsychology. The academic part of the training would typically include cognitive psychology, neuropsychology, learning theory (and behavior modification), developmental psychology, psychotherapy, abnormal psychology, statistics, and research design. In many courses the basic philosophy is one that recognizes that clinical psychologists are trained to solve health service problems: we are not allowed to say a patient is untestable or untreatable; instead we should use a problem-solving strategy to find a way to assess or treat or refer to the right service/department. Finally, within this tradition, clinical psychologists are expected to be research oriented and to evaluate the efficacy of their intervention programs.

8.20.7.2 Does Rehabilitation Improve Quality of Life? A British study (Johnson, 1987) found the employment rate of brain injured people could be tripled following individualized and intensive work re-entry programs. Prigatano and colleagues (Prigatano et al., 1986) found that patients undergoing treatment were less emotionally distressed than control group patients. More recently Prigatano and colleagues (Prigatano et al., 1994) reported greater productivity in those patients undergoing a holistic rehabilitation program. 8.20.7.3 Overall View of Effectiveness Just a few of the many studies attempting to answer the question ªIs rehabilitation effective?º have been selected. Despite some methodological problems, strong evidence of the overall effectiveness of rehabilitation on general measures of handicap has emerged in the past five years (Cope, 1994). There is mounting

8.20.9 CONCLUSIONS: AN INTEGRATED APPROACH TO COGNITIVE REHABILITATION In the light of the discussion above, and the fact that feelings affect how we think and how we behave, we need to recognize that cognition should not be divorced from emotion, motivation, or other noncognitive functions. Consequently, an integrated program should address not only cognitive functions but also social, emotional, functional, and affective difficulties. Programs should focus on disability, that is, the functional consequences of brain injury, rather than impairment. Effectiveness should not be evaluated by improvements on test results but on functional achievements in everyday life. Cognitive neuropsychologists engaged in rehabilitation should encourage dialogue with other disciplines. We typically conduct diagnostic studies or experiments to elucidate and

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clarify the nature of impairment. Other rehabilitation staff are typically concerned with the remediation of real life problems and in helping brain injured people manage their disabilities. The challenge of those engaged in cognitive rehabilitation is to develop concepts, tools, and terminology to bridge these different interests. We need a broader theoretical spectrum on which to base our rehabilitation programs. Wilson (1984, 1987) argued for the need to combine theoretical models and methodology from neuropsychology, cognitive psychology, and behavioral psychology. Diller (1987) said, ªWhile current accounts of remediation have been criticized as lacking a theoretical base, it might be more accurate to state that remediation must take into account several theoretical basesº (p. 9). More recently, McMillan and Greenwood (1993) said, ªrehabilitation should draw on fields of clinical neuropsychology, behavioral analysis, cognitive retraining and group and individual psychotherapyº (p. 352). We need to strengthen the interaction between theory and clinical observation. Theory can sometimes predict which methods might work but clinical observation is often required to tell us how best to implement the theory. For example, work on errorless learning in the rehabilitation of amnesic patients (Baddeley & Wilson, 1994) grew out of theoretical work on implicit memory. The implementation of errorless learning principles in clinical rehabilitation, however, requires behavioral observation and analysis at an individual patient level (Wilson et al., 1994; Wilson & Evans, 1996). We need to ensure proper evaluation of cognitive rehabilitation programs. Given that patients and therapists cannot be ªblindº to treatment procedures, double-blind randomized control trials are always unlikely to be realized in neuropsychological rehabilitation. Single-blind trials are sometimes possible (Cope, 1994). Even more possible are small group or cohort studies, crossover designs, and single case experimental designs (Wilson, 1997, discusses in some detail research and evaluation in rehabilitation). Research should be at a number of levels of specificity. At the most general level are questions such as ªIs this approach effective?º and ªWhat are the cost consequences of providing and not providing neuropsychological rehabilitation?º These questions are, perhaps, best answered through collaborative research maybe involving a health economist. At a more specific level we need to evaluate different rehabilitation strategies such as the comparison of two (or more) methods to improve attention or teach new information. This is where small group or cohort designs are

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handbook of rehabilitation studies (pp. 161±187). Cambridge, UK: Cambridge University Press. Wilson, B. A., Baddeley, A. D., Evans, J. J., & Shiel, A. (1994). Errorless learning in the rehabilitation of memory impaired people. Neuropsychological Rehabilitation, 4, 307±326. Wilson, B. A., Baddeley, A. D., Shiel, A., & Patton, G. (1992). How does post traumatic amnesia differ from the amnesic syndrome and from chronic memory impairment. Neuropsychological Rehabilitation, 2, 231±243. Wilson, B. A., & Davidoff, J. (1993). Partial recovery from visual object agnosia: A 10 year follow-up study. Cortex, 29, 529±542. Wilson, B. A., & Evans, J. J. (1996). Error free learning in the rehabilitation of individuals with memory impairments. Journal of Head Trauma Rehabilitation, 11, 54±64. Wilson, B. A., Evans, J., Baddeley, A. D., Emslie, H., & Watson, P. (1997, June). Monitoring recovery from post traumatic amnesia. Paper presented at the International Neuropsychological Society, Bergen, Norway. Wilson, B. A., Evans, J. J., Emslie, H., & Malinek, V. (1977). Evaluation of NeuroPage: A new memory aid. Journal of Neurology, Neurosurgery, and Psychiatry, 63, 113±115. Wilson, B. A., & Moffat, N. (1992). The development of group memory therapy. In B. A. Wilson & N. Moffat (Eds.), Clinical management of memory problems (second edition) (pp. 243±273). London: Chapman & Hall. Wilson, B. A., & Patterson, K. E. (1990). Rehabilitation and cognitive neuropsychology: Does cognitive psychology apply? Journal of Applied Cognitive Psychology, 4, 247±260. Wilson, B. A., & Powell, G. E. (1994). Neurological problems: treatment and rehabilitation. In S. J. E. Lindsay & G. E. Powell (Eds.), The handbook of clinical adult psychology (2nd ed., pp. 688±701). London: Routledge. Wilson, B. A., Shiel, A., Watson, M., Horn, S., & McLellan, D. L. (1994). Monitoring behaviour during coma and post traumatic amnesia. In A. L. Christensen & B. Uzzell (Eds.), Progress in the rehabilitation of braininjured people (pp. 85±98). Hillsdale, NJ: Erlbaum. Wilson, B. A., & Watson, P. C. (1996). A practical framework for understanding compensatory behaviour in people with organic memory impairment. Memory, 4, 465±486. Wood, R. Ll. (1984). Behaviour disorders following severe brain injury: Their presentation and psychological management. In D. N. Brooks (Ed.), Closed head injury: Social, psychological and family consequences. Oxford, UK: Oxford University Press. Wood, R. Ll. (1987). Brain injury rehabilitation: A neurobehavioural approach. London: Croom Helm. Wood, R. Ll. (1988). Management of behaviour disorders in a day treatment setting. Journal of Head Trauma Rehabilitation, 3, 53±62. Wood, R. Ll., & Eames, P. G. (1981) Application of behavioral modification of traumatically brain injured adults. In G. Davey (Ed.), Application of conditioning theory. London: Methuen. World Health Organization (1980). International classification of impairments, disabilities and handicaps: A manual of classification relating to the consequences of disease. Geneva, Switzerland: Author. Zangwill, O. L. (1947). Psychological aspects of rehabilitation in cases of brain injury. British Journal of Psychology, 37, 60±69. Zihl, J. (1990). Zur Behandlung von Patienten mit homonymen GesichtsfeldstoÈrungen. Zeitschrift fuÈr Neuropsychologie, 1, 91±98.

Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.21 Epilepsy GUS A. BAKER Walton Hospital, Liverpool, UK and ANN JACOBY University of Newcastle upon Tyne, UK 8.21.1 INTRODUCTION

487

8.21.2 CLASSIFICATION OF SEIZURES AND EPILEPSY

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8.21.3 PROGNOSIS OF EPILEPSY

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8.21.4 MEDICAL AND SURGICAL TREATMENT OF EPILEPSY

489 491

8.21.4.1 Adherence with Medical Treatment for Epilepsy 8.21.5 IMPACT OF EPILEPSY ON PERSON AND FAMILY 8.21.5.1 8.21.5.2 8.21.5.3 8.21.5.4

Impact Impact Impact Impact

492 492 493 494 496

on Physical Function on Psychological Function on Social Function of Epilepsy on Other Family Members

8.21.6 COPING WITH THE IMPACT OF EPILEPSY

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8.21.7 LIFE SPAN ISSUES

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8.21.8 GENDER ISSUES

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8.21.9 PSYCHOLOGICAL INTERVENTIONS IN THE MANAGEMENT OF EPILEPSY

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8.21.9.1 Interventions Relating to Treatment of Seizures 8.21.9.2 Interventions to Reduce the Impact of Epilepsy and Enhance Coping

499 499

8.21.10 CONCLUSION

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8.21.11 REFERENCES

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Febrile seizures (those occurring in young children and associated with a rise in body temperature), anoxic seizures, and seizures provoked by an acute cause such as illness or trauma are not considered to constitute epilepsy; single seizures do not constitute epilepsy; and seizures that occur sporadically probably do not constitute epilepsy. Epilepsy is one of the most common neurological disorders, with an age-adjusted incidence of between 20 and 70 per 100 000 and

8.21.1 INTRODUCTION Seizures are ªan occasional, an excessive, and a disorderly discharge of nerve tissueº (Taylor, 1958), and epilepsy is ªa chronic disorder characterized by recurrent unprovoked seizuresº (Hauser & Annegery, 1993). The emphasis on the recurrent and unprovoked nature of the seizures manifested by epilepsy is important, since not all people who have seizures will be defined as having epilepsy. 487

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Epilepsy

a prevalence of 4±10 per 1000 (Chadwick, 1994). It has been estimated that around 50 million people worldwide have epilepsy. According to Porter (1993), in more than three-quarters of people with epilepsy, seizures begin before the age of 18 years. Though in the majority of cases there is no identifiable cause for epilepsy, it can be the result of virtually any major category of serious disease or disorder of humans, including congenital malformations, infections, tumours, vascular diseases, degenerative diseases, or injury. The main causes of seizures and epilepsy in children and adults are displayed in Table 1.

8.21.2 CLASSIFICATION OF SEIZURES AND EPILEPSY Neurologists attempt to classify both seizure type and epilepsy syndrome for the purposes of treatment. Seizures are fundamentally divided into two groupsÐpartial or generalized (International League Against Epilepsy, 1981). Partial seizures have clinical or electroencaphalographic evidence of a localized onset. Generalized seizures are as a group much more heterogeneous than partial seizures and have no evidence of a localized onset. Partial seizures can be further subdivided into two groupsÐ simple and complex. Simple partial seizures are those attacks which show evidence of a localized onset but during which consciousness or responsiveness is preserved. The discharge is usually confined to a single hemisphere and the symptoms are specific to the affected region of the brain. Commonly patients may experience either a motor event such as jerking of an extremity, or a sensory event such as a bad odor or taste. Complex partial seizures are those attacks which show evidence of a localized onset and in which consciousness is altered. These attacks can be subdivided into frontal, parietal, and occipital complex partial seizures. Complex partial seizures of temporal lobe origin, the most

common, often begin with disturbance of motor function followed by speech disturbance, and automatisms such as lip smacking frequently follow. The attacks usually last less than one minute and are followed by postictal confusion and gradual recovery. Generalized seizures include tonic±clonic, clonic, tonic, atonic, myoclonic, and absence seizures. The most common form of generalized seizures, and that with which most people will be familiar, are generalized tonic±clonic seizures, which have certain well-defined characteristics. During the initial tonic phase, which usually lasts for less than a minute, the muscles of the body contract and the person becomes rigid. If the bladder is full, contraction of the muscles will result in urination. As the muscles in the lungs contract, air is forced out through the vocal cords, so that the person seems to cry out. Breathing may stop for a short time, and the person becomes cyanosed as a result. The tonic phase is followed by the clonic, or jerking, phase, with jerking caused by alternating phases of muscle relaxation and contraction. Tonguebiting sometimes occurs during this phase of the seizure. After a minute or two, the seizure ends, the person relaxes and may then be deeply unconscious and unrouseable, but consciousness normally returns within about five minutes. Arousal from the seizure may be followed by a brief period of confusion and irritability (Chadwick & Usiskin, 1987). Absence seizures begin in childhood or early adolescence and are characterized by unresponsiveness and a variety of associated phenomena. The attacks are short, usually less than 10 seconds and rarely longer than 45 seconds. The onset is paroxysmal and without warning and the cessation is likewise sudden. Myoclonic seizures are a seizure type defined as a quick movement of the muscle which is normally stereotypical and presents as clonic jerking. The clonic seizure is usually a generalized seizure without a tonic phase and the reverse can be said

Table 1 Main causes of seizures in children and adults. Infants and children

Adults

No definite cause determined Birth and neonatal injuries Vascular insults other than above Congenital or metabolic disorders Head injuries Infection Neoplasia Heredity

No definite cause determined Vascular lesions Head trauma Drug or alcohol abuse Neoplasia Infection Heredity

Source: Porter (1993).

Medical and Surgical Treatment of Epilepsy of tonic seizures. Atonic seizures are characterized by a precipitous loss of tone which causes the patient to have a sudden nodding of the head or to fall to the floor. Some people with epilepsy experience partial seizures that subsequently evolve into generalized ones. Epilepsy is more of a group of syndromes than a single disease entity, a syndrome being defined as a disorder characterized by a cluster of signs or symptoms which customarily occur together. Epileptic syndromes classify patients and emphasize the heterogeneity of these complex symptoms. Identification of syndromes is important in terms of predicting the prognosis, selecting the appropriate treatment, and defining the likelihood of identifying an underlying etiology. The most important division is between epilepsy with a recognizable cause (symptomatic) or epilepsy without a recognizable cause (cryptogenic or idiopathic). Other factors also important include: seizure type, age of onset, EEG abnormality, and associated neurological features. The syndromic classification currently used by neurologists was proposed by the International League Against Epilepsy. 8.21.3 PROGNOSIS OF EPILEPSY Sander (1993) has defined the term prognosis, as applied to epilepsy, as meaning the chance of terminal remission once a patient has established a pattern of recurrent seizures. Obtaining evidence about the prognosis of epilepsy has been difficult because of the lack of definitional agreement and methodological inconsistencies between various studies. A recent review reported by Hauser and Headorffer (1990) that the probability of remission is anywhere between 41 and 75%. A community-based study by Annegers, Hauser, and Elveback (1979) following up 457 patients with a history of two or more nonfebrile seizures for a minimum of five years showed that the probability of being in remission lasting five years or more was 61% at 10 years and 70% at 20 years. It is now generally accepted that as many as 70±80% of people who develop epilepsy will achieve a remission, and that remission will in most cases occur shortly after antiepileptic drug treatment is initiated (Sander, 1993). 8.21.4 MEDICAL AND SURGICAL TREATMENT OF EPILEPSY For over a century anticonvulsant drugs have been the mainstream of treatment for individuals with epilepsy. Early drug treatments

489

included the use of extracts from human skulls, hippopotamus testicles, tortoise blood, and pigeon dung as well as a number of herbal remedies such as foxgloves or camomile flowers (Scott, 1993). Therapy reached a somewhat more sophisticated level after the use of bromides was introduced in 1857. Though first synthesized in 1864 barbituric acid, phenobarbitone, was not put into clinical practice until 1912. Phenobarbitone was followed in 1938 by the introduction of phenytoin, carbamazepine in 1954, and sodium valproate in 1974. Recently, a number of drugs have been marketed including vigabatrin, lamotrigine, and gabapentin and a number of others, topirimate, tiagabine, and levetiracetam, are in phased development. The drug prescribed depends largely on the type of epilepsyÐthe aim being to control seizures with the simplest drug regime and the fewest side effects. The majority of patients can be successfully treated by monotherapy, although in some cases polytherapy is required in order to achieve satisfactory seizure control. Though the varied and unpredictable risk of side effects associated with polytherapy has made it unfashionable in the last decade (Brodie, 1992; Shorvon & Reynolds, 1979), the development of new antiepileptic drugs (AEDs) with better defined mechanisms of action may increase its acceptability among clinicians, as they identify combination regimens with synergistic properties. A list of the main anticonvulsants, indications for their use, and their common side effects is given in Table 2. Though the side effects of AEDs are generally minor in patients with less severe epilepsy which is controlled by a single drug, they may impose significant impairments in patients with chronic epilepsy. The frequency with which patients perceive side effects associated with their medication has recently been documented (Baker, Jacoby, Buck, Spalgis, & Morret, 1997). Five thousand members of epilepsy support groups throughout Europe were sent questionnaires through the post which asked them abut their epilepsy, the treatment they had for it and its impact on their day-to-day functioning. They were asked to report any problems or side effects which they felt had been caused by their AED medication and whether they had ªalways or often,º ªsometimes,º ªrarely,º or ªneverº been a problem in the last month. Only 12% of respondents currently on AEDs reported no side effects at all, the remainder reporting at least one. The most commonly experienced side effects were tiredness, memory problems, difficulty concentrating, sleepiness, difficulty thinking clearly, and nervousness or agitation. Table 3 shows, for

490

Epilepsy Table 2 Main antiepileptic drugs, indications for use, and common side effects.

Generic name

UK trade name

Indications for use

Adverse effects

Carbamazepine

Tegratol

Drug of choice: complex partial, tonic±clonic, and simple partial seizures Occasional use: tonic±clonic and partial seizures Drug of choice: status epilepticus

Dose-related: dizziness, double vision, unsteadiness, nausea, and vomiting Dose-related: drowsiness and sedation Dose-related: sedation, inflammation of veins if given intravenously Dose-related: sedation

Clobazam

Frisium

Clonazepam

Rivitol

Diazepam

Valium

Ethosuximide

Zarontin

Phenobarbitone

Prominal

Effective in: tonic±clonic and partial seizures

Phenytoin

Epanutin

Drug of choice: tonic±clonic, simple, and complex partial seizures

Primidone

Mysoline

Occasional use: tonic±clonic and partial seizures

Sodium valproate

Epilim

Drug of choice: all idiopathic generalized epilepsies. Effective in partial and secondary generalized seizures

Drug of choice: status epilepticus Drug of choice: simple absence

Dose-related: nausea, drowsiness, dizziness, unsteadiness, may exacerbate tonic±clonic seizures. Allergic: rashes Dose-related: drowsiness, unsteadiness. Allergic: rashes. Chronic toxicity: tolerance habituation, withdrawal seizures, adverse effects on cognitive functioning Dose-related: drowsiness, unsteadiness, slurred speech, occasionally abnormal movement disorders. Allergic: rashes, swelling of lymph glands, hepatitis. Chronic toxicity: gum swelling, acne, coarsening of facial features, hirsuitism, folate deficiency Dose-related: drowsiness, unsteadiness. Allergic: rashes. Chronic toxicity: tolerance, habituation, withdrawal seizures, adverse effects on cognitive functioning Dose-related: tremor, irritability, restlessness, occasional confusion. Allergic: gastric intolerance, liver damage. Chronic toxicity: weight gain, hair loss

Source: Chadirck and Usiskin (1987).

those respondents on monotherapy only, the percentage reporting each problem according to the antiepileptic medication they were taking. Forty-four percent of respondents said they worried ªa lotº or ªsomeº about the possible side effects of their medication. A third had changed their AED medication at least once in the last year because of associated side effects; 5% had changed medication at least three times. Though AEDs continue to be the mainstay of epilepsy treatment, there is a small but significant proportion of patients with intractable epilepsy for whom surgery is now an available

option. There are a number of different surgical procedures available for intractable epilepsy, including amygdalahippocampectomy (partial removal of the amygdala and the hippocampus), temporal lobectomy (removal of a significant amount of the temporal lobe), corpus callosotomy (partial separation of the two hemispheres), and hemispherectomy (removal of significant amount of one hemisphere of the brain). Around 20% of patients with difficultto-control seizures will prove suitable candidates for epilepsy surgery and pooled studies of the outcome for those operated on show that

491

Medical and Surgical Treatment of Epilepsy Table 3 Subjects' reports of AED* side effects by type of antiepileptic (percentage reporting side effects always, often, or sometimes in the last month; subjects on monotherapy only).

Reported side effect Unsteadiness Tiredness Restlessness Feelings of aggression Nervousness/agitation Headache Hair loss Problems with skin Double/blurred vision Upset stomach Difficulty concentrating Trouble with mouth/gums Shaky hands Weight gain Dizziness Sleepiness Depression Memory problems Disturbed sleep Difficulty thinking clearly Slurred speech

CBZ (n=944) (%)

VPA (n=556) (%)

PHT (n=387) (%)

PB (n=112) (%)

24 54 25 18 27 30 11 19 20 14 41 15 21 19 22 40 23 47 19 35 16

20 49 24 18 31 25 17 15 13 20 38 14 37 36 20 35 26 37 21 30 15

29 55 33 22 37 27 11 20 17 15 45 33 28 17 25 38 28 48 31 40 24

21 45 31 18 31 24 11 20 12 19 33 16 18 23 13 31 19 30 23 28 12

Source: Baker, Jacoby, Buck, Stalgis, and Monnet (1997). CBZ, carbamazepine; VPA, sodium valproate; PHT, phenytoin; PB, phenobarbitone. Figures in brackets are the base numbers on which percentages were calculated, and exclude the small number of respondents who did not answer these questions.

around 70% will become seizure free (Engel, van Ness, Rasmussen, & Ojemann, 1993). This radical clinical improvement in their condition is not always accompanied by immediate psychosocial improvements, as a number of studies have shown (Bladin, 1992; Ferguson & Rayport, 1965; Rausch & Crandell, 1982). This is probably because of the difficulties inherent in adjusting to becoming seizure free after a significant period of time with very frequent and unpredictable seizures. Following surgery, both the patient's expectations and those of his or her family, that he or she will now lead a normal and fulfilling life, are often unattainable in the short term. Rehabilitating patients who have undergone surgery requires the input of a multidisciplinary team, whose aim should be to help the operated individual and their family set realistic goals and make a positive adjustment to their newly-acquired status. 8.21.4.1 Adherence with Medical Treatment for Epilepsy The failure to adhere to prescribed AED regimes has been cited as a common reason for poor seizure control (Chadwick, 1993; Cramer

& Mattson, 1991). Estimates of the level of nonadherence range from around a third of patients admitting to missing medication occasionally (Buck, Baker, Jacoby, Smith, & Chadwick, 1997) to almost two-thirds (Dawson & Jameson, 1971). Nonadherence may be a particular problem in adolescents (Buck et al., 1997; Takaki, Klinokaura, & Aoyama, 1985). It tends to be poorer with polytherapy and may be enhanced by simplifying treatment regimes. Cramer, Scheyer, and Mattson (1990) reported that adherence to AED therapy declined significantly between clinic visits, reflecting what has been dubbed ªwhite-coat compliance,º and indeed a number of studies show that adherence can be improved by increasing the frequency of clinic visits (Wannamaker, Morton, Gross, & Sanders, 1980) and introducing educational programs (Helgeson, Mittan, Tan, & Chayasirisobhon, 1990). The extent to which treatment side effects contribute to nonadherence has been documented in the US Veterans Administration Study (Smith, Mattson, Cramer, Collins, Novelly, Craft, and Veterans Administration Epilepsy Cooperation Study Group, 1987). By the twoyear end point for the study, 85 of the 421

492

Epilepsy

patients originally enrolled had a drug failure because of intolerable side effects. Adhering to treatment regimes is, however, more complex than simply considering the issue of immediate side effects. Patients appear to perform their own cost-benefit analysis of adherence, based on their understanding of their condition and the importance of treatment, and the information they receive not only from their doctor but also from other informal sources such as friends, family, and the media (Trostle, 1988; Trostle, Hauser, & Susser, 1983). Schneider and Conrad (1983) found that patients altered their AED regimes either for the purpose of testing the progress of their epilepsy and whether in fact they still needed to take them, or because they resented being dependent on medication and wanted to reassert control over their condition. Scambler (1989) reported that subjects in his study who reduced or abandoned AED therapy did so either because they were concerned about possible immediate or longer-term side effects, because they recognized that AEDs could only control not cure their condition, and because continuing to take AEDs implied continuing epilepsy and the stigma associated with it. 8.21.5 IMPACT OF EPILEPSY ON PERSON AND FAMILY The World Health Organization (WHO) identifies three distinct concepts as consequences of a chronic condition such as epilepsy: impairment, disability and handicap (WHO, 1980). Seizures, the manifestation of impairment in brain function associated with epilepsy, are only temporarily, even though dramatically, disabling. For the rest of the time, the majority of people with seizures are able to perform their normal activities without any resultant restriction or loss of ability. However, the stigma of epilepsy and associated discrimination can represent significant handicaps for them, for example, in the spheres of occupation and economic self-sufficiency. People with epilepsy are therefore often handicapped, even if not disabled by their condition, and the quality of their lives will be significantly reduced as a result. The impact of epilepsy on individuals who have it can be felt physically, psychologically, and socially. Epilepsy is also known to sometimes have a major impact upon the families of people who have it. 8.21.5.1 Impact on Physical Function At its most extreme, epilepsy is associated with increased mortality (Cockerell et al., 1994; Hauser & Hesdorffer, 1990; Hauser & Kurland,

1975). Though patients who have infrequent seizures have a standardized mortality ratio (SMR) similar to the general population, it is higher in those whose seizures are frequent. Survival is much less for those individuals where a cause for their epilepsy can be identified, and higher mortality has been reported for some types of seizures than for others. Among people who have generalized tonic±clonic seizures, the mortality rate is 1.5±3 times greater than in the general population, whereas among people who have absences or complex partial seizures, the rate is the same (an unsurprising finding given the differing presentations of these different seizures). While increased mortality may be due in some cases to the underlying causes of epilepsy, it is also the case that deaths from accidents and trauma are higher. For example, people with seizures are twice as likely to die from drowning as people without them. There is some evidence that death from suicide is more common among people with epilepsy (Barraclough, 1981; Hawton, Fagg, & Marsack, 1980; Zielinski, 1994), though this is not confirmed by other studies (Cockerell et al., 1994; Hauser, Annegers, & Elveback, 1980). There is a significant literature on the risk of sudden unexpected death (SUD) in people with epilepsy (Annegers, Hauser, & Shirts, 1984; Eamest, Thomas, Eden, & Hossack, 1992; Leestma, Kalelker, Teas, Jay, & Hughes, 1984) and some evidence that the risk of SUD is increased around the time of unusually stressful life events, perhaps as a result of more erratic medication taking at such times. The risk of nonfatal accidents including fractures and burns is also higher for people with epilepsy than others (Buck et al., 1997; Nakken, & Lossius, 1993; Spitz, Towkin, Shantz, & Adler, 1994). Less dramatically, people with epilepsy have to contend with the side effects of antiepileptic medications, which may be both cognitive and physical. Side effects may be more common with polytherapy and are apparently less common with the newer drugsÐthough it has been suggested this is no more than a reflection of the fact that they have been less well investigated (Shorvon, 1987). It has been argued that all major antiepileptic drugs have adverse cognitive effects, including reduced attentiveness, impoverished memory, and mental slowing (McQuire & Trimble, 1990), and that patients with more cognitive impairment also have more psychosocial problems (Dodrill, 1980). In addition, people with epilepsy, particularly those with a more severe disorder or on higher levels of drugs, may experience changes in their physical appearance including weight gain, hirsuitism, thinning of the hair, and gum hyperplasia.

Impact of Epilepsy on Person and Family 8.21.5.2 Impact on Psychological Function Reviewing studies of the psychiatric and psychological outcomes of epilepsy, Fenwick (1987) has estimated that the prevalence of psychiatric morbidity is high, with around a third of people with epilepsy affected. Hermann and Whitman (1986) hypothesize three alternative groups of variables which contribute to psychopathology in people with epilepsy: psychosocial variables such as fear of seizures, perceived stigma and discrimination, degree of adjustment to the diagnosis, other life events, and level of social support; clinical variables such as age of onset, duration of epilepsy, seizure type, and seizure severity; and medication variables including medication type and number. Empirical investigation has so far tended to focus on the role of clinical variables but there is evidence that both antiepileptic medication and psychosocial factors also play an important part in the development of psychopathology (Baker, Jacoby, & Chadwick, 1996; Jacoby, Baker, Steen, Potts, & Chadwick, 1996). Anxiety and depression are the two most common manifestations of psychopathology reported among people with epilepsy. Betts (1981) lists a whole range of ways in which anxiety and depression may be related to epilepsy (Tables 4 and 5). Anxiety is the problem most commonly elicited from patients themselves (Arnston, Drodge, Norton, & Murray, 1986; Collings, 1990; Smith, Baker, Dewey, Jacoby, & Chadwick, 1991). In an unselected population of people with epilepsy ranging from those with complete seizure control to those with longstanding drug-resistant epilepsy, a quarter were identified, using the Hospital Anxiety and Depression Scale (Zigmond & Snaith, 1983), as ªcasesº of anxiety and a further 15% as ªborderline,º and there was a very clear relationship in this population between anxiety and seizure frequency, with the percentage of cases rising from 13% among people who had had no seizures in the last year to 44% among those who were having at least one a month (Jacoby et al., 1996). It has been suggested that protracted anxiety may be the precursor of depression, and the two problems commonly co-exist in epilepsy (Robertson, Trimble, & Townsend, 1987). Depression was the most common reason for admission to hospital for psychiatric care in a study of people with epilepsy (Betts, 1974). In the community study cited above (Jacoby et al., 1996), 9% of subjects were classified as depressed and a further 15% were ªborderlineº and as for anxiety, the percentage of subjects thus classified rose with seizure frequency, from

493

Table 4 Anxiety and epilepsy. 1. Anxiety reaction to acquiring the label of epilepsy 2. Anxiety reaction to the social and family problems of epilepsy 3. Prodromal anxiety before a seizure 4. Anxiety as an aura 5. Anxiety as an ictal experience 6. Anxiety occurring in association with an epileptic psychosis 7. Anxiety occurring in association with epilepsyrelated brain damage 8. True phobic anxiety related to seizures Source: Betts (1981).

Table 5 Depression and epilepsy. 1. Depressive reaction to acquiring the label of epilepsy 2. Depressive reaction to social or family problems of epilepsy 3. Prodromal depressive feelings before a seizure 4. Depressive feelings as an aura 5. Depressive feelings as an ictal state 6. Postictal depressive feelings 7. Depressive twilight state 8. Epileptic depressive delirium 9. Endogenous depression unrelated directly to seizures, but possibly to their decrease in frequency 10. Depressive symptoms occurring in association with other mental illnesses, particularly a paranoid or schizophrenic psychosis Source: Betts (1981).

4% of those currently seizure free to 21% of those with seizures more often than once a month on average. Betts (1981) suggests that depression can be self-reinforcing and its associated sequelae, such as loss of confidence and reduced self-esteem, can be more disabling and longer-lasting than the depression itself. Two other common psychological problems for people with epilepsy are reduced self-esteem and poor sense of mastery. Potential sources of reduced self-esteem are parental overprotection and rejection, educational and occupational underachievement, and perceived stigma and discrimination. However, the relationship between epilepsy and self-esteem has been relatively little researched to date. Collings (1990) compared self-esteem in a UK population of people with epilepsy and age- and sex-matched controls, and found significant differences on 11 out of 20 self-esteem ratings, with people with epilepsy seeing themselves as less valuable, adaptable, dependable, mature, stable, able to

494

Epilepsy

cope with life, successful, well-adjusted, or happy, and more unpredictable and handicapped. An important finding from Collingsº study was that the most important correlate of overall well-being among the epilepsy sample was the degree of discrepancy between their current self-perception and anticipated selfperception without epilepsy. Smith et al. (1991) found patient-perceived seizure severity to be an important predictor of self-esteem among adult patients whose seizures were intractable, raising the question of whether improved seizure control will be accompanied by increased self-esteem. In the same study, Baker, Smith, Dewey, Jacoby, and Chadwick (1993) reported that self-esteem was significantly related to patientsº scores on other psychological dimensions, including anxiety, depression, and sense of mastery. Perhaps because of the unpredictable nature of seizures, people with epilepsy tend to have a poorer sense of mastery than healthy people and a number of authors (Arnston et al., 1986; Baker et al., 1993; Matthews & Barabas, 1981) have shown that sense of mastery is significantly related to other psychological variables. For example, Matthews and Barabas (1981) found that poor sense of mastery in adults with epilepsy was associated with anxiety, poor selfesteem, feelings of helplessness, and an increased risk of suicide. From their study of 15 children with epilepsy, these authors concluded that their perceptions of control could affect their social functioning, their self-concept and their motivation to learn, and may predispose them to anxiety and depression. Similarly, Arnston et al. (1986) showed that a poor sense of mastery in adults with epilepsy was significantly and positively related to anxiety, depression, and a number of somatic symptoms: the more their respondents believed that their health was controlled by forces external to them, the more anxious, depressed, and ill they felt. The role of the family in reducing sense of mastery in a person with epilepsy has been examined by a number of authors. For example, Ziegler (1982) considered the way in which seizures distorted family negotiations relating to a child's competence and autonomy and concluded that other family members, parents in particular, need a way to deal with the feelings of helplessness and loss of control they themselves experience when the affected person begins to have seizures. Since seizures rupture a person's control, Ziegler maintains that the other family members may become reluctant to grant him or her autonomy outside the seizures; their apparently transient effects thus acquire a much deeper significance in negotiations

between the affected person and his/her family, continuing to repattern what has been called ªthe family danceº (Napier & Whitaker, 1978). 8.21.5.3 Impact on Social Function Historically, the social meaning of epilepsy was that it was a disease to be feared and shunned and the treatment of people with epilepsy has throughout history been a reflection of this (Temkin 1971). In ancient and primitive societies, epilepsy was seen as a sign of sin, demonic possession, and madness, and although it is now recognized as a disorder of the brain rather than the soul, the old images of epilepsy to some extent still persist. Certainly many people with epilepsy are only too well aware of its potential for stigma, so that having epilepsy may be seen as worse than having seizures (Scambler, 1989; Schneider & Conrad, 1983). Scambler (1989) makes a distinction between ªenactedº stigma, that is, episodes of discrimination against people with epilepsy and ªfeltº stigma, which he defines as an oppressive fear of enacted stigma. He showed that felt stigma was much more prevalent among people with epilepsy than enacted stigmaÐa finding confirmed in a recent large-scale quantitative study of people with well-controlled epilepsy (Jacoby, 1994). In the latter, only 2% of subjects could recall any actual event of discrimination in the workplace, but 32% felt that epilepsy made it more difficult for them than for people without epilepsy to find employment. The issue of stigma represents an important feature of the management and rehabilitation of people with epilepsy. One way in which the potential for stigma may impact upon people with epilepsy is by reducing the level of their social contacts and activities. Social isolation is frequently the product of anxiety over the possibly hostile reactions of others if a seizure should occur in a public place. However, Mittan (1986) reports that fear for their physical safety also keeps many people isolatedÐmore than a fifth of the people in his study said they were afraid to go out because of the possibility of seizures occurring which might lead to accidents and their most common coping strategy was therefore to stay at home. It has been suggested by Scambler and Hopkins (1980) that such fears lead to a self-denial of opportunities that can, in turn, result in a whole host of problems with personal relationships. These problems in personal relationships are reflected in the lower rates of marriage and fertility reported among people with epilepsy compared with the general population. Lechtenberg (1984) reported that 56% of the men he surveyed and 69% of the women were unmarried, and Collings (1990),

Impact of Epilepsy on Person and Family comparing epilepsy and nonepilepsy samples in the UK, found that 71% of the nonepilepsy group were married, but only 42% of the epilepsy group. There is some evidence that social withdrawal and isolation may also be the product of parental reactions to a diagnosis of epilepsy, which typically involve overprotectiveness (Ferrari, Matthews, & Barabas, 1986; Wolf, Thorbecke, & Even, 1986). Such overprotectiveness may lead parents to limit their child's activities, which in turn renders him or her more socially inept. Children with epilepsy have been shown to have increased levels of dependency and attachment to their parents (Mulder & Surmeijer, 1977; Stores & Piran, 1978). They have also been found to adopt a more passive role in family interactions and a reduced level of involvement in family decision-making (Ritchie, 1981). There is evidence that the parents of children with epilepsy, as well as being overprotective, have lowered expectations about their potential achievements. Ferrari (1989) investigated the expectations and attitudes of parents of children with epilepsy in 21 families and found that mothers had uniformly lower expectations of them than of their healthy siblingsÐtheir children with epilepsy were seen as less reliable, less trusting of others, less adept, more moody, more likely to have emotional problems, and more likely to perform poorly at school. Ferrari concludes that parentsº responses to epilepsy can greatly influence their expectations for their child and play a significant role in their underachievment and adjustment problems. Both under- and unemployment have been shown to be more common in people with epilepsy. One author (Floyd, 1986) has suggested that up to half of all people with epilepsy living in the UK may have experienced problems over their employability, and in the US, pooled data from a number of studies shows unemployment rates for people with epilepsy are twice that for the general population (Hauser & Hedorffer, 1990). Collings (1990) reported that whereas only 14% of a nonepilepsy sample were unemployed, 41% of those with epilepsy were, and long-term unemployment was more common in the sample of people with epilepsyÐ64% of them had been unemployed for more than two years, compared with only 13% of the nonepilepsy group. Elwes, Marshall, Beattie, and Newman (1991) also reported that people with epilepsy experienced significant difficulties in obtaining work, a finding which may in part be attributable to their educational underachievement. Elwes found that respondents in his study were less likely to leave school with any formal qualifica-

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tions or to undergo any subsequent training apprenticeships. A number of clinical features of epilepsy appear related to the likelihood of being employed, including the failure to achieve total seizure control, seizure type, and the presence of multiple neurological or nonneurological handicaps. UK community studies have generally shown that manual occupations are over-represented among people with epilepsy, suggesting that underemployment is also a problem for them. In the US, a study in Rochester, Minnesota, found a lower proportion of people with epilepsy than others employed in professional and managerial occupations and a higher proportion employed in lower-level occupations such as manual labor or machine operation (Trostle, 1987). It has been suggested that the under-representation of people with epilepsy in nonmanual occupations can be accounted for by the theory of ªsocial drift,º which proposes that people who are chronically ill or disabled are unable to maintain their original occupational status and drift downwards to jobs of lower status. This theory was examined by Scambler and Hopkins (1980) who report that among the community sample they followed, they were unable to find any evidence of significant intragenerational drift downwards as a result of their condition: they did find, however, a small but significant association between social class and current employment status which suggested that respondents from working class households were more vulnerable to unemployment. It is important to note that from the point of view of their employability, people with epilepsy are not a homogeneous group. Those with severe epilepsy who may also have associated physical or mental handicaps and behavioral disorders are likely to be unemployable on the open market; those whose seizures are infrequent but not fully controlled should be employable given a suitable job and a sympathetic employer, and those whose epilepsy is controlled or in remission should be employable in any job except one requiring a completely clear history (Espir & Floyd, 1986). One obvious implication of underemployment and unemployment is that it has an impact on a person's financial status. A study addressing this issue was done by Arnston et al. (1986) in the US. The authors noted a marked discrepancy between the educational achievement of the group they studied and their household income, the reported level of which was far below the national average. Clemmons (1983) reported that 50% of a US sample of people with epilepsy were dependent on family or federal subsidy. Other studies which have shown that people with epilepsy generally have

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Epilepsy

lower than average incomes include those by Batzel, Dodrill, and Fraser (1980); Fraser, Clemmons, Trejo, and Temkin (1985); and Dodrill, Breyer, Diamond, Dubinsky, and Geary (1984). There are other broader implications of the reduced employability of people with epilepsy. The Reid Report on people with epilepsy (Central Health Services Council, 1969) highlighted the importance of work in determining not only financial status, but also social status and societal role, aspects of personal satisfaction and self-esteem, sense of purpose and social companionship, and recently, research has indicated that there is a significant relationship employment status and the ability of people with epilepsy to adjust to their condition (Collings, 1990; Hermann, Whitman, Wyler, Anton, & Vanderzwagg, 1990). A number of the studies cited above of the psychosocial status of people with epilepsy focused on prevalent populations of individuals with resistant epilepsy drawn from hospital clinics who represent only between 20±30% of all people with epilepsy. This has biased our understanding of the impact of epilepsy and its treatment, presenting a somewhat gloomy picture. Recently, research has been published which helps to redress the balance. Chaplin, Yepez Lasso, Shorvon, and Floyd (1992) studied an unselected sample of 192 adults aged 17 years and over with a recent diagnosis of epilepsy. They investigated 14 different areas of psychosocial adjustment using a previously developed 42-item scale, and found that problems were experienced by almost all subjects in at least one area. However, in contrast with findings from studies of people with chronic epilepsy, problems in this group of newly diagnosed patients were generally mild (Table 6). There were only four areas where more than 10% of subjects reported severe problems: fear of seizures, fear of stigma in employment, adverse effects on leisure, and lack of energy. Chaplin suggests that the findings that the diagnosis of epilepsy did not of itself seem to lead to high levels of maladjustment calls into question the view that the label ªepilepsyº has a powerful and constant stigmatizing effect, and argues that the fact that adjustment appears, from earlier studies, to be related to seizure frequency, weakens the case for the label's importance. We would suggest that an alternative interpretation is that infrequent seizures reduce the number of potentially discrediting situations but do not remove the ever-present threat of being discredited, and in those with newly diagnosed seizures, the full impact of this recently-acquired status on their identity and aspects of their daily life has yet to be realized.

A recent study of people with well-controlled epilepsy also presents a more positive picture of its psychosocial consequences. The Medical Research Council study of antiepileptic drug withdrawal was a multicenter clinical trial which compared clinical and psychosocial outcomes in groups of patients randomized to slow withdrawal from or continued treatment with antiepileptic medication (MRC Antiepileptic Drug Withdrawal Group, 1991). The study yielded a considerable quantity of information on a large cohort of individuals with epilepsy in remission. To be eligible for the trial, patients had to be seizure free for a minimum of two years and many had been so for considerably longer. In this group, levels of psychosocial distress were low. Respondents emerged as welladjusted to their condition and experiencing few problems because of it. Their psychological profile compared to that of other epilepsy samples and normative populations was positive; rates of employment were comparable with those of the general population; rates of marriage were higher than in groups of people with severe epilepsy and the proportion living alone was the same as in the general population. There was little evidence of social isolation and few people appeared to feel stigmatized by their epilepsy. For the majority epilepsy did not appear to profoundly diminish their ability to function physically, psychologically, or socially (Jacoby, 1992, 1995). The findings from this study are important, because people with wellcontrolled epilepsy represent the largest group of people with epilepsyÐbetween 70 and 80% of all those affected by the condition. 8.21.5.4 Impact of Epilepsy on Other Family Members As well as affecting the physical, psychological, and social status of people with the condition, epilepsy also has implications for other family members. Families of children with epilepsy have been shown to be significantly less cohesive, have lower levels of esteem and communication, and have reduced levels of social support compared with those of children with other chronic conditions (Austin, 1988; Ferrari et al., 1983). The presence of a child with epilepsy in the family appears to have important repercussions for all members, and particularly for mothers and siblings. Rutter, Graham, and Yule (1970) found that having a child with epilepsy was a potent source of distress among their mothers, of whom a fifth in his study had experienced psychiatric problems. Sillanpaa (1973) reported higher rates of divorce among the parents of children with epilepsy. The siblings of children with epilepsy also appear

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Coping with the Impact of Epilepsy Table 6 Percentages of newly diagnosed patients reporting problems in psychosocial adjustment and their severity. Severity of problem Areas of adjustment

None (%)

Mild (%)

Moderate (%)

Severe (%)

Acceptance Fear of seizures Employment Future Travel Social life Leisure Outlook on life Family Medication Medical profession Emotions Isolation Lack of energy

36 20 31 47 71 56 57 51 65 50 63 53 68 57

36 8 28 24 15 15 12 21 19 19 16 25 13 14

20 57 27 28 12 20 21 20 14 27 16 19 17 18

7 15 13 1 2 9 10 8 2 4 4 3 2 11

Source: Chaplin et al. (1992).

to be at greater risk of psychiatric disturbance (Hoare & Kerley, 1991). Finally, Betts (1988) has pointed out that there may be something of a ªcycle of deprivationº in the functioning of families with a member with epilepsy since ªthe child that has had poor parenting as a result of his or her own epilepsy is likely to make a poor parent in turn.º 8.21.6 COPING WITH THE IMPACT OF EPILEPSY The ways in which people with epilepsy cope with its actual or perceived negative impact on their concepts of self and their lives was examined by Schneider and Conrad (1981) in interviews with 80 people, some of whom were experiencing enormous problems in their daily lives because of their diagnosis, others of whom saw it as ªno big thing.º It was interesting that these divergent perceptions of its impact were not a direct function of the medical severity of their condition: people who shared similar seizure experiences and histories nonetheless held very different views about their impact. From the interviews, Schneider and Conrad (1981) were able to develop a typology of the characteristic ways in which their subjects handled and adapted to their condition. The typology distinguishes between two broad forms of adaptation, called by the authors the ªadjustedº and the ªunadjustedº within each of which there are a number of subtypes. One identifiable subtype of adjusted adaptation was the pragmatic type, wherein the predominant

strategy for dealing with epilepsy was to minimize it as much as possible, both to one's self and to others. People who opted for this pragmatic approach, while recognizing the potential for negative reactions, were generally open about their epilepsy with others. In contrast, a second subtype of adjusted adaptation was the secret type, wherein epilepsy was managed by often elaborate procedures to control and conceal information about it. This type of adaptation rested on a belief in the stigmatizing quality of epilepsy and the extent of the secrecy was dependent on the intensity of the perceived stigma. A third adjusted subtype was termed by the authors the quasiliberated, sharing with the pragmatic a straightforward definition of oneself as having epilepsy and broadcasting the fact to others in an attempt to educate them and be free of the burdens of secrecy based on the fear of stigma. A fundamental difference between these adjusted adaptations to epilepsy and the unadjusted adaptations was that whereas the former was characterized by a sense of control, the latter was marked by a sense of being overcome or overwhelmed by epilepsy. The most extreme subtype of this unadjusted adaptation was what the authors called the debilitated subtype wherein epilepsy represented ªan indelible and irrevocable threat to one's worth.º People who were debilitated by their epilepsy were often, it appeared, the partial and unwitting engineers of their own fate, since they allowed their condition to dominate their identity and life, withdrawing into it and away from others.

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Epilepsy

Scambler (1984) applied the typology of adaptation outlined above to the population of people with epilepsy in his London study. He concluded that the subtype of adjusted adaptation referred to as the secret type represented the preferred strategy for the majority of his subjects, though it rarely brought them any lasting peace of mind. The second-choice strategy was that termed by Schneider and Conrad (1981) the pragmatic type, which several of Scambler's subjects reported they resorted to from time to time. Only a tiny percentage had employed the quasiliberated strategy, a finding Scambler attributes to cultural differences in the militancy and organization of the disability movement in the US and Britain. Finally, Scambler found that the debilitated subtype of unadjusted adaptation, as outlined by Schneider and Conrad, was, among the group he studied, a temporary rather than a permanent type of adaptation, enacted only at particular times and in particular circumstances when their status as ªepilepticº became more than usually apparent and threatened the equilibrium of their lives. The adaptation strategies employed by people with epilepsy as a means of reducing its impact are mirrored in other stigmatizing conditions. For example, Link, Mirotznik, and Cullen (1991) studied the way in which people with mental illness try to avoid its negative consequences and reported that secrecy, selective avoidance, or withdrawal from social interaction, and educating or ªpreventive tellingº were common coping strategies. However, it appeared that none of these strategies was fully effective in diminishing the negative impact of their condition on employment or on levels of psychological distress. Scambler (1993) suggests that to fully understand how people cope with epilepsy, five dimensions of coping must be addressed: accommodation, that is, an individual's reaction to the physical properties of epilepsy and the iatrogenic effects of medication; rationalization, that is, the process by which people make sense of their epilepsy; their concept of self; sociability, that is, the quality and extent of the relationships negotiated by the person with epilepsy and significant others; and finally, fulfilment, an individual's sense of achievement which may be expressed in relation to any of his or her social roles and for which epilepsy may constitute a serious obstacle. 8.21.7 LIFE SPAN ISSUES The incidence of epilepsy is highest in childhood and older age. It is the most common neurological problem of childhood, its incidence

being highest in the first decade of life (Hauser & Hesdorffer, 1990). Most childhood epilepsy is benign and will remit in adolescence, but some severe syndromes persist into adulthood; these syndromes are often characterized by significant brain dysfunction and developmental delay (Dreifuss, 1995). There is also a group of syndromes that begin in adolescence, including juvenile absences and juvenile myoclonic epilepsy (Dravet, 1992). The effects of AED medication may be particularly significant in childhood because of their influence on the developing brain and many studies have examined the influence of AEDs on emotional and behavioral problems, cognitive functioning (including impairments of attention, concentration, and memory), and academic performance (Aldenkamp, 1995; Thompson, 1995; Trimble, 1988). It has been shown that children with epilepsy have a relatively more compromised life quality than those with other chronic conditions (Austin, Shelton, Risinger, & McNelis, 1994). The development of epilepsy can have a profound effect on a child's sense of self and this may be particularly significant at adolescence, in part because this is the point when the legal and statutory restrictions imposed by a diagnosis of epilepsy are first felt, and in part because adolescence is a time for consideration of one's identity, sexuality, and independence and epilepsy can severely disrupt this normal development. The incidence of epilepsy is at its lowest between the ages of 20 and 60 and in the majority of adults in this age group it is well controlled. Despite the absence of seizures, such individuals still face the fear of further attacks and the psychosocial consequences of the label of epilepsy. As noted earlier in this chapter, adults with epilepsy have been shown to have poorer psychosocial functioning than the general population (Levin, Banks, & Berg, 1988). They also, like children, have to contend with the side effects of medication and the disruption to daily functioning that occurs as the result of such effects. Epilepsy is the third most common neurological condition of old age after stroke and dementia and Tallis (1993) comments that the onset of the condition can represent a watershed in a person's life, with both immediate and longer-term impact on confidence, independence, and quality of life. Making a diagnosis of epilepsy in older people is more hazardous because seizures sometimes present differently in this age group and the range of potential causes is much wider. The after-effects of seizures may be more prolonged and may often be associated with more serious injury. The central nervous system-related effects of AEDs may further

Psychological Interventions in the Management of Epilepsy exacerbate any existing decline in cognitive function in older people, who are also more likely to be taking other non-AED medications and so face an increased risk of drug interactions (Jones, 1988; Troupin & Johannessen, 1990. Tallis (1993) has described the social effects of epilepsy in older age as embodying a process of ªmarginalization and disempowermentº which can profoundly undermine their concept of self. 8.21.8 GENDER ISSUES Contraception, pregnancy, and parenthood represent a number of concerns for women with epilepsy. While oral contraception remains the most effective form of contraception, it is known to interact with enzyme-inducing AEDs (e.g., phenytoin and carbamazepine) and consequently a contraceptive with a higher dose of estrogen may be required to prevent contraceptive failure. A number of recommendations about the clinical management of women who are pregnant or contemplating pregnancy have been made. These include: consideration of AED withdrawal in women seizure free for at least two years; reduction of polytherapy and use of carbamazepine monotherapy where possible; early screening for neural tube defects and prescription of folic acid supplements; and reassurance about the acceptability of breastfeeding while taking AEDs (Appleton, 1994). 8.21.9 PSYCHOLOGICAL INTERVENTIONS IN THE MANAGEMENT OF EPILEPSY Managing the various psychological and social problems associated with epilepsy is crucial to making a positive adjustment to the condition. Failure to resolve such problems may reduce the affected person's motivation to comply with treatment regimens and impair their ability to make a successful adaptation. Relatively little attention has so far been paid to the contribution of the nonmedical management of epilepsy to dealing with such issues, perhaps as a result of the small number of specialist centers worldwide providing a multidisciplinary approach to its assessment and treatment (Goldstein, 1990). Nonmedical approaches to the management of epilepsy can be divided into two broad categories: those aimed at reducing seizure frequency and those which target the psychological adjustment of the individual with epilepsy. 8.21.9.1 Interventions Relating to Treatment of Seizures A variety of relaxation strategies have been advanced in the management of seizures

499

because of the recognition that anxiety may act as a seizure precipitant and that people with epilepsy are more likely to have increased rates of anxiety when compared with the normal population. Progressive muscle relaxation techniques have been used, with some success, in patients who are able to identify heightened physiological arousal prior to seizure onset and who experience anxiety interictally (Rousseau, Hermann, & Witman, 1985). While there is substantial anecdotal evidence that people with epilepsy will benefit from anxiety management, there are few randomized studies to support the efficacy of anxiety management techniques. Recently, a number of studies have focused on applying a behavioral analysis to the management of seizure activity. These approaches have generally focused upon the antecedants and consequences of the seizure (Goldstein, 1990). Dahl, Melin, and Leissner (1988) have shown that direct manipulation of stimuli which are known to elicit seizures may lead not only to a reduction in seizure behavior but also a reduction in EEG activity. The package of treatment proposed by Dahl and colleagues includes the use of contingent relaxation, symptom discrimination, countermeasures for arousal level, and positive reinforcement for appropriate behavior. Unfortunately, the generalizability of the findings from this study was hampered by the small number of subjects (N=3) and the absence of a control group. Tan and Bruni (1986) in a later study examined the use of cognitive behavioral treatment for the reduction of seizure activity. Their study was conducted over eight weeks and consisted of 2 h weekly sessions involving self-monitoring of stressful events and associated cognitions. Standard cognitive-behavioral treatment, however, produced little change in seizure frequency. Other researchers (Dahl, Melin, & Lund, 1987; Pritchard, Holmstrom, & Giacinto, 1985; Brown & Fenwick, 1989) have used covert desensitization programs with relaxation training and cue-controlled arousal. One example of such an intervention is where the patient was taught to imagine an aura in a relaxed state and then used an arousal technique to stop it. However, this approach has yet to be evaluated in a group study (Goldstein, 1990).

8.21.9.2 Interventions to Reduce the Impact of Epilepsy and Enhance Coping The role of the clinical psychologist in helping people with epilepsy to accept the diagnosis and to self manage their condition is well recognized. Given that people with epilepsy may develop

500

Epilepsy

psychological problems at any stage in their illness career, it is important that a psychological service be routinely available to them in epilepsy outpatient clinics. People with epilepsy should be fully investigated to determine what factors are likely to be important in the development and maintenance of psychological problems associated with their condition. Obviously some problems will be amenable to psychological treatment only, whereas other more severe problems may require pharmacological treatment in addition to psychological therapy. If the epilepsy is long-standing and psychological± behavioral problems have been in existence for a considerable time, individuals may require longterm psychotherapy rather than time-limited behavioral treatments. Cognitive-behavioral therapy involves shaping the way people think, feel and behave and clinical anecdotal evidence suggests that it may be the most appropriate treatment for people with epilepsy. Even though the research evidence for its efficacy in this condition is limited at present, there is evidence for its success in other chronic conditions (Illis, 1994) Some studies have shown that psychoeducational programs are effective in helping patients to self-manage their epilepsy (Helgeson & Mittan, 1990). It is important for people with epilepsy and their families to have a proper understanding of their condition and to demystify any unhelpful beliefs they might have about it (Mittan, 1986). Hills and Baker (1992) demonstrated how possession of accurate information about epilepsy was significantly related to level of well-being; people with epilepsy who were more informed about the management and treatment of their condition perceived themselves as being in more control and subsequently had significantly better psychological profiles than those who were less informed. In this arena too the clinical psychologist has a key role to play, the aim being to help patients minimize the impact of their condition on their daily lives. Interventions aimed at the cognitive level emphasize the importance of providing new information about the illness or its management. Cognitivebehavioral techniques are also implemented to modify the underlying core beliefs that people have about their condition which may be at the root of their psychological impairments. Interestingly, use of group-based cognitive-behavioral therapy in the work of Tan and Bruni (1986) did not significantly reduce seizure frequency but did result in an increase in patients' ratings of their well-being. As well as working with patients themselves, psychologists will be called upon to work with their families, particularly where the epilepsy develops in childhood and adolescence. Fa-

milies have a significant part to play in the way in which the affected person adjusts to their condition. For example, parents may become overprotective of their child with epilepsy when fearful of the risks involved if seizures cannot be completely controlled. They may dominate and prevent the child from gaining normal independence. Conversely, epilepsy may lead to the rejection of the child which in turn may lead to psychological and psychiatric problems for both protagonists. For some families, education and counseling will be sufficient to ameliorate these difficulties; for others more formal family therapy may be necessary. In family therapy, the whole of the family are invited to explore and modify communication systems and behavioral functioning in order to minimize the negative aspects of epilepsy. While there is little evidence of the efficacy of this approach in families with epilepsy, there is substantial evidence of its usefulness in other conditions (Minuchin, 1974). Clinical psychologists are only one part of the multidisciplinary team managing patients with epilepsy, and other team members can also contribute to a positive psychological adjustment. Clinicians need to be circumspect in the timing of communicating a diagnosis of epilepsy, since diagnosis marks the beginning of a protracted and sometimes lifelong process of adjustment. A number of authors have highlighted the role of the hospital clinician in the adjustment process, both through rational drug therapy and through awareness of the possible psychological or psychiatric sequelae of the condition (Hermann & Whitman, 1991; Scambler, 1993) The general practitioner, as the clinician with often the most regular contact with the patient, also has a role to play in providing relevant information regarding the nature and management of epilepsy. Such information should be provided on a regular basis and should be updated, as far as is possible, to keep pace with important developments in the field. The general practitioner is also well-placed to direct people with epilepsy and their families to local and national support groups and to organize practical support, particularly for patients who are severely affected by their condition, such as respite care, home help, and holiday opportunities. Finally, the epilepsy support agencies also have a role in educating and supporting the individual with epilepsy and their family. Information about counseling services and the location of specialist epilepsy centers can be obtained through most of the organizations for people with epilepsy. There are both local and national organizations covering the whole of the UK.

References 8.21.10 CONCLUSION In this chapter, we have tried to provide the reader with an overview of epilepsy and its management, with particular emphasis on the impact it can have on patients' physical, social, and psychological well-being. The ways in which people with epilepsy seek to accommodate its effects on their daily lives have been documented in research, and we have highlighted the means by which clinical psychologists can help to make this accommodation a positive one. The clinical aspects of epilepsy are generally easily managed by present-day treatments, but the psychological aspects may require a significant input from health professionals. We believe that the clinical psychologist can make a considerable contribution to the amelioration of both clinical and, more importantly, nonclinical issues confronting the patient with epilepsy. 8.21.11 REFERENCES Aldenkamp, A. P. (1995). Cognitive side effects of antiepileptic drugs. In A. P. Aldenkamp, (Ed.), Epilepsy in children and adolescents (pp. 161±182). Boca Raton, FL: CRC Press. Annegers, J. F., Hauser, W. A., & Elveback, L. R. (1979). Remission of seizures and relapse in patients with epilepsy. Epilepsia, 20, 729±737. Annegers, J. F., Hauser, W. A., & Shirts, S. B. (1984). Heart disease mortality and morbidity in patients with epilepsy. Epilepsia, 25, 699±704. Appleton, R., (1994). Epilepsy (3rd ed.). London: Martin Dunitz. Arntson, P., Drodge, D., Norton, R., & Murray, E. (1986). The perceived psychosocial consequences of having epilepsy. In S. Whitman & B. Hermann (Eds.), Psychopathology in epilepsy: Social dimensions. New York: Oxford University Press. Austin, J. K. (1988). Childhood epilepsy: child adaption and family resources. Journal of Child and Adolescent Psychiatric Mental Health Nursing, 1, 18±24. Austin, J. K., Shelton, M. S., Risinger, M. W., & McNelis, A. M. (1994). Childhood epilepsy and asthma: comparison of quality of life. Epilepsia, 35, 608±615. Baker, G. A., Smith, D. F., Dewey, M., Jacoby, A., & Chadwick, D. W. (1993). The initial development of a health-related quality of life model as an outcome measure in epilepsy. Epilepsy Research, 16, 65±81. Baker, G. A., Jacoby, A., & Chadwick, D. W. (1996). The associations of psychopathology in epilepsy: a community study. Epilepsy Research, 25, 29±39. Baker, G. A., Jacoby, A., Buck, D., Stalgis, C., & Monnet, D. (1997). Quality of life of people with epilepsy: a European study. Epilepsia, 38, 353±362. Barraclough, B. (1981). Suicide and Epilepsy. In E. H. Reynolds & M. R. Trimble (Eds.), Epilepsy and psychiatry. Edinburgh: Churchill Livingstone. Batzel, L. W., Dodrill, C. B., & Fraser, R. T. (1980). Further validation of the WPSI vocational score: comparisons with other correlates of employment in epilepsy. Epilepsia, 21, 235±242. Betts, T. A. (1974). A follow-up study of a cohort of patients with epilepsy admitted to psychiatric care in an English city. In P. Harris, C. Mawdsley, & H. Berger (Eds.), Epilepsy: Proceedings of the Hans Bergen

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Centenary Symposium. Edinburgh: Churchill Livingstone. Betts, T. A. (1981). Depression, anxiety and epilepsy. In E. H. Reynolds & M. R. Trimble (Eds.), Epilepsy and psychiatry. New York: Churchill Livingstone. Betts, T. (1988). People with epilepsy as parents. In P. Hoare (Ed.), Epilepsy and the family: a Medical Symposium on New Approaches to Family Care. Manchester: Sanofi UK Ltd. Bladin, P. F. (1992). Psychosocial difficulties and outcome after temporal lobectomy. Epilepsia, 33, 898±907. Brodie, M. J. (1992). Drug interactions in epilepsy. Epilepsia, 33, S13±S22. Brown, S. B., & Fenwick, P. B. (1989). Evoked and psychogenic epileptic seizures: 2. Inhibition. Acta Neurologica Scandinavica, 80, 541±547. Buck, D., Baker, G. A., Jacoby, A., Smith, D. F., & Chadwick, D. W. (1997). Patients' experiences of injury as a result of epilepsy. Epilepsia, 38, 439±444. Central Health Services Council. (1969) People with Epilepsy: Report of a Joint Sub-Committee of the Standing Medical Advisory Committee and the Advisory Committee on the Health and Welfare of Handicapped Persons. London: HMSO. Chadwick, D. (1994). Epilepsy. Journal of Neurology, Neurosurgery and Psychiatry, 57, 264±277. Chadwick, D., & Usiskin, S. (1987). Living with epilepsy. London: Macdonald Optima. Chadwick, D. W. (1993). Seizures and epilepsy in adults. In J. Laidlaw, A. Richens, & D. Chadwick (Eds.), A textbook of epilepsy. Edinburgh: Churchill Livingstone. Chaplin, J. E., Yepez Lasso, R., Shorvon, S. D., & Floyd, M. (1992). National general practice study of epilepsy: the social and psychological effects of a recent diagnosis of epilepsy. British Medical Journal, 304, 1416±1418. Clemmons, D. (1983). Relationship of general aptitude test battery scores to successful employment for epileptics in a rehabilitation setting. Epilepsia, 24, 232±237. Cockerell, O. C., Johnson, A. L., Sander, W. A. S., Hart, Y. M., Goodridge, D. M. G., & Shorvon, S. D. (1994). Mortality from epilepsy: results from a prospective population-based study. Lancet, 344, 918±921. Collings, J. A. (1990). Psychosocial well-being and epilepsy: an empirical study. Epilepsia, 31, 418±426. Cramer, J. A., Scheyer, R. D., & Mattson, R. H. (1990). Compliance declines between clinic visits. Archives of Internal Medicine, 150, 1509±1510. Cramer, J. A., & Mattson, R. H. (1991). Monitoring compliance with antiepileptic drug therapy. In J. A. Cramer & B. Spilker (Eds.), Patient compliance in medical practice and clinical trials. New York: Raven Press. Dahl, J., Melin, L., & Lund, L. (1987). Effects of a contingent relaxation treatment program on adults with refractory epileptic seizures. Epilepsia, 28, 125±132. Dahl, J. A., Melin, L., & Leissner, P. (1988). Effects of a behavioural intervention on epileptic behaviour and paroxysmal activity: A systematic replication of three cases of children with intractable epilepsy. Epilepsia, 29, 172±83. Dawson, K. P., & Jamieson, A. (1971). Value of phenytoin estimation in management of childhood epilepsy. Archives of Diseases in Childhood, 46, 386±389. Dodrill, C. B. (1980). Inter-relations between neuropsychological data and social problems in epilepsy. In R. Canger, F. Angeleri, & J. K. Penry (Eds.), Advances in epileptology: XIth Epilepsy International Symposium. New York: Raven Press. Dodrill, C. B., Breyer, D. N., Diamond, M. B., Dubinsky, B. L., & Geary, B. B. (1984). Psychosocial problems among adults with epilepsy. Epilepsia, 25(2), 168±175.

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Dravet, C. (1992). The epilepsies beginning at adolescence. In Anonymous, Epilepsy in Adolescence: Symposium (pp. 15±22). Ruisbroek: Le Monde Medical Magazine. Dreifuss, F. E. (1995). Classification of epilepsies in childhood and adolescence. In A. P. Aldenkamp (Ed.), Epilepsy in children and adolescents (pp. 1±16). Boca Raton, FL: CRC Press. Eamest, M. P., Thomas, G. E., Eden, R. A., & Hossack, K. F. (1992). The sudden unexpected death syndrome in epilepsy: demographic, clinical and post-mortem features. Epilepsia, 33, 310±316. Elwes, R. D., Marshall, J., Beattie, A., & Newman, P. K. (1991). Epilepsy and employment. A community based survey in an area of high unemployment. Journal of Neurology, Neurosurgery and Psychiatry, 54, 200±203. Engel, J., Van Ness, P. C., Rasmussen, T. B., & Ojemann, L. M. (1993). Outcome with respect to epileptic seizures. In J. Engel (Ed.), Surgical treatment of the epilepsies (pp. 609±621). New York: Raven Press. Espir, M., & Floyd, M. (1986). Epilepsy and recruitment. In F. Edwards, M. Espir, & J. Oxley (Eds.), Epilepsy and Employment: a Medical Symposium on Current Problems and Best Practices. London: Royal Society of Medicine Services. Fenwick, P. (1987). Epilepsy and psychiatric disorders. In A. Hopkins (Ed.), Epilepsy. London: Chapman & Hall. Ferguson, S. M., & Rayport, M. (1965). The adjustment to living without epilepsy. Journal of Nervous and Mental Disease, 140, 26±37. Ferrari, M. (1989). Epilepsy and its effects on the family. In B. P. Hermann & M. Seidenberg (Eds.), Childhood epilepsies: neuropsychological, psychosocial and intervention aspects. Chichester: Wiley. Ferrari, M., Matthews, W. S., & Barabas, G. (1983). The family and child with epilepsy. Family Process, 22, 53±59. Floyd, M. (1986). A review of published studies in epilepsy and employment. In F. Edwards, M. Espir, & J. Oxley (Eds.), Epilepsy and Employment: A Medical Symposium on Current Problems and Best Practices. London: Royal Society of Medicine Services. Fraser, R. T., Clemmons, D., Trejo, W., & Temkin, N. R. (1983). Program evaluation in epilepsy rehabilitation. Epilepsia, 24, 734±746. Goldstein, L. H. (1990). Behavioural and cognitivebehavioural treatments for epilepsy: A progress review. British Journal of Clinical Psychology, 29, 257±269. Hauser, W. A., & Hesdorffer, D. C. (1990). Epilepsy: Frequency, causes and consequences. Maryland: Epilepsy Foundation of America. Hauser, W. A., & Annegers, J. F. (1993). Epidemiology of Epilepsy. In J. Laidlaw, A. Richens, & D. Chadwick (Eds.), A textbook of epilepsy. Edinburgh: Churchill Livingstone. Hauser, W. A., Annegers, J. F., & Elveback, L. R. (1980). Mortality in patients with epilepsy. Epilepsia, 21, 339±412. Hauser, W. A., & Kurland, L. T. (1975). The epidemiology of epilepsy in Rochester, Minnesota, 1935 through 1967. Epilepsia, 16, 1±66. Hawton, K., Fagg, J., & Marsack, P. (1980). Association between epilepsy and attempted suicide. Journal of Neurology, Neurosurgery and Psychiatry, 43, 168±170. Helgeson, D. C., Mittan, R., Tan, S. Y., & Chayasirisobhon, S. (1990). Sepulveda epilepsy education: The efficiency of a psychoeducational treatment program in treating medical and psychosocial aspects of epilepsy. Epilepsia, 31, 75±82. Hermann, B. P., & Whitmann, S. (1986). Psychopathology in epilepsy: a multi-etiological model. In S. Whitman & B. P. Hermann (Eds.), Psychopathology in epilepsy: Social dimensions. New York: Oxford University Press. Hermann, B. P., Whitman, S., Wyler, A. R., Anton, M. T., & Vanderzwagg, R. (1990). Psychosocial predictors of

psychopathology in epilepsy. British Journal of Psychiatry, 156, 98±105. Hermann, B. P., & Whitman, S. (1991). Neurobiological, psychosocial and pharmacological factors underlying interictal psychopathology in epilepsy. In D. B. Smith, D. M. Treiman, & M. R. Trimble (Eds.), Advances in neurology Vol. 55. Neurobehavioural problems in epilepsy. New York: Raven Press. Hills, M. D., & Baker, P. G. (1992). Relationships among epilepsy, social stigma, self-esteem and social support. Journal of Epilepsy, 5, 231±238. Hoare, P., & Kerley, S. (1991). Psychosocial adjustment of children with chronic epilepsy and their families. Developmental Medicine and Child Neurology, 33, 201±215. International League Against Epilepsy (1981). Proposal for revised clinical and electroencephalographic classification of epileptic seizures. Epilepsia, 22, 489±501. International League Against Epilepsy (1989). International classification of epilepsies and epileptic syndromes. New York: Raven Press. Illis, L. S. (1994). Neurological rehabilitation. Oxford: Blackwell Scientific. Jacoby, A. (1992). Epilepsy and the quality of everyday life. Findings from a study of people with well-controlled epilepsy. Social Science and Medicine, 43(6) 657±666. Jacoby, A. (1994). Felt versus enacted stigma: a concept revisited. Social Science and Medicine, 38, 269±274. Jacoby, A. (1995). Psychosocial functioning in people with epilepsy in remission and the outcomes of antiepileptic drug withdrawal. Unpublished doctoral dissertation, University of Newcastle upon Tyne, UK. Jacoby, A., Baker, G. A., Steen, N., Potts, P., & Chadwick, D. W. (1996). The clinical course of epilepsy and its psychosocial correlates: findings from a UK community study. Epilepsia, 37, 148±161. Jones, I. (1988). A pharmacist's view of drug compliance in the elderly. In R. Tallis (Ed.), Epilepsy and the elderly (pp. 42±51). Oxford: Alden Press. Lechtenberg, R. (1984). Epilepsy and the family. Cambridge, MA: Harvard University Press. Leestma, J. E., Kalelker, M. B., Teas, S., Jay, F. W., & Hughes, J. R. (1984). Sudden unexpected death associated with seizures: analysis of 66 cases. Epilepsia, 25, 84±88. Levin, R., Banks, S., Berg, B. (1988). Psychosocial dimensions of epilepsy: a review of the literature. Epilepsia, 29, 805±816. Link, B. G., Mirotznik, J., & Cullen, F. T. (1991). The effectiveness of stigma coping orientations: can negative consequences of mental illness labeling be avoided? Journal of Health and Social Behavior, 32, 302±320. Matthews, W. S., & Barabas, G. (1981). Suicide and epilepsy: a review of the literature. Psychosomatics, 22, 515±524. McQuire, A., & Trimble, M.R. (1990). Quality of life in patients with epilepsy: the role of cognitive factors. In D. Chadwick (Ed.), Quality of life and quality of care in epilepsy. London: Royal Society of Medicine Services. Mittan, R. J. (1986). Fear of Seizures. In S. Whitman & B. Hermann (Eds.), Psychopathology in epilepsy: Social dimensions. New York: Oxford University Press. Minuchin, S. (1974). Families and family therapy. London: Tavistock Publications. MRC Antiepileptic Drug Withdrawal Group (1991). A randomised study of antiepileptic drug withdrawal in patients in remission of epilepsy: Medical Research Council Antiepileptic Drug Withdrawal Study Group. Lancet, 337, 1175±1180. Mulder, H. C., & Surrmeijer, T. P. (1977). Families with a child with epilepsy: a sociological contribution. Journal of Biosocial Science, 9, 13±24. Nakken, K. O., & Lossius, R. (1993). Seizure-related injuries in multi-handicapped patients with therapy-

References resistent epilepsy. Epilepsia, 34, 836±840. Napier, A., & Whitaker, C. (1978). The family crucible. New York: Harper and Row. Porter, R. J. (1993). Classification of epileptic seizures and epileptic syndromes. In J. Laidlaw, A. Richens, & D. Chadwick (Eds.), A textbook of epilepsy. Edinburgh: Churchill Livingstone. Pritchard, P. B., III, Holmstrom, V. L., & Giacinto, J. (1985). Self-abatement of complex partial seizures. Annals of Neurology, 18, 265±267. Rausch, R., & Crandall, P. H. (1982). Psychological status related to surgical control of temporal lobe seizures. Epilepsia, 23, 191±202. Ritchie, K. (1981). Interaction in families of epileptic children. Journal of Child Pyschology and Psychiatry and Applied Disciplines, 22, 65±71. Robertson, M. M., Trimble, M. R., & Townsend, H. R. A. (1987). Phenomenology of depression in epilepsy. Epilepsia, 28, 364±372. Rousseau, A., Hermann, B., & Witman, S. (1985). Effects of progressive relaxation on epilepsy: Analysis of a series of cases. Psychological Reports, 57, 1203±1212. Rutter, M., Graham, P., & Yule, W. (1970). A neuropsychiatric study in childhood. In Anonymous, Clinics in developmental medicine Nos. 35/36. London: Spastics International and Heineman Medical. Sander, J. W. A. S. (1993). Some aspects of prognosis in the epilepsies: a review. Epilepsia, 34, 1007±1016. Scambler, G. (1984). Perceiving and coping with stigmatising illness. In R. Fitzpatrick, (Ed.), The experience of illness. London: Tavistock. Scambler, G. (1989). Epilepsy. London: Tavistock. Scambler, G. (1993). Coping with epilepsy. In J. Laidlaw, A. Richens, & D. W. Chadwick (Eds.), A textbook of epilepsy. Edinburgh: Churchill Livingstone. Scambler, G., & Hopkins, A. (1980). Social class, epileptic activity and disadvantage at work. Journal of Epidemiology and Community Health, 34, 129±133. Schneider, J. W., & Conrad, P. (1981). Medical and sociological typologies: the case of epilepsy. Social Science and Medicine, 15A, 211±219. Schneider, J. W., & Conrad, P. (1983). Having epilepsy: the experience and control of illness. Philadelphia: Temple University Press. Scott, D. F. (1993). The history of epileptic therapy: an account of how medication was developed. Carnforth, Lancs: Parthenon. Sillanpaa, M. (1973). Medico-social prognosis of children with epilepsy. Acta Paediatrica Scandinavica, Suppl. 237, 3±104. Shorvon, S. D. & Reynolds, E. H. (1979). Reduction in polypharmacy for epilepsy. British Medical Journal, 2, 1023±1025. Shorvon, S. (1987). The treatment of epilepsy by drugs. In A. Hopkins (Ed.), Epilepsy. London: Chapman & Hall. Smith, D. B., Mattson, R. H., Cramer, J. A., Collins, J. F., Novelly, R. A., Craft, B., & Veterans Administration Epilepsy Cooperative Study Group. (1987). Results of a nationwide Veterans Administration Cooperative study comparing the efficacy and toxicity of carbamazepine, phenobarbitol, phenytoin and primidone. Epilepsia, 28, S50±S58. Smith, D. F., Baker, G. A., Dewey, M., Jacoby, A., & Chadwick, D. W. (1991). Seizure frequency, patient perceived seizure severity and the psychosocial conse-

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quences of intractable epilepsy. Epilepsy Research, 9, 231±241. Spitz, M. C., Towbin, J. A., Shantz, D., & Adler, L. E. (1994). Risk factors for burns as a consequence of seizures in people with epilepsy. Epilepsia, 35, 764±767. Stores, G., & Piran, N. (1978). Dependency of different types of school-children with epilepsy. Psychological Medicine, 8, 441±445. Takaki, S., Kurokawa, T., & Aoyama, T. (1985). Monitoring drug non-compliance in epileptic patients: assessing phenobarbitol plasma levels. Therapeutic Drug Monitoring, 7, 87±91. Tallis, R. (1993). Through a glass darkly: assessing quality of care of elderly people with epilepsy using quality of life measures. In Anonymous, Quality of life and quality of care in epilepsy: Update 1993 (pp. 79±96), London: Royal Society of Medicine Services. Tan, S. Y., & Bruni, J. (1986). Cognitive-behaviour therapy with adult patients with epilepsy: a controlled outcome study. Epilepsia, 27(3) 225±233. Taylor, J. (1958). Selected writings of John Hughlings Jackson. Volume 1 On epilepsy and epileptiform convulsions. New York: Basic Books. Temkin, O. (1971). The falling sickness. Baltimore: Johns Hopkins University Press. Thompson, P. J. (1995). The impact of epilepsy on behaviour and emotional development. In A. P. Aldenkamp (Ed.), Epilepsy in children and adolescents (pp. 239±250). Boca Raton, FL: CRC Press. Trimble, M., R., & Cull, C. (1988) Children of school age: the influence of antiepileptic drugs on behavior and intellect. Epilepsia, 29, 15±19. Trostle, J. A. (1987). Managing epilepsy: A community study of chronic illness in Rochester, Minnesota. Unpublished doctoral dissertation, University of California. Trostle, J. A. (1988). Medical compliance as an ideology. Social Science and Medicine, 27, 1299±1308. Trostle, J. A., Hauser, W. A., & Susser, I. S. (1983). The logic of non-compliance. Culture, Medicine and Psychiatry, 7, 35±36. Troupin, A. S., & Johannessen, S. I. (1990). Epilepsy in the elderly: a pharmacological perspective. In D. B. Smith (Ed.), Epilepsy: current approaches to diagnosis and treatment. New York: Raven Press. Wannamaker, B. B., Morton, W. A., Gross, A. J., & Sanders, S. (1980). Improvements in antiepileptic drug levels following reduction of intervals between clinic visits. Epilepsia, 21, 155±162. Wolf, P., Thorbecke, R., & Even, W. (1986). Social aspects of psychosis in patients with epilepsy. In S. Whitman & B. P. Hermann (Eds.), Psychopathology in epilepsy. New York: Oxford University Press. World Health Organization (WHO) (1980). International classification of impairments, disabilities and handicaps. The consequences of disease. Geneva: World Health Organization. Ziegler, R. G. (1982). Epilepsy: Individual illness, human predicament and family dilemma. Family Relations, 31, 435±444. Zigmond, A. S., & Snaith, R. P. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica, 67, 361±370. Zielinski, J. J. (1974). Epilepsy and mortality rates and cause of death. Epilepsia, 15, 191±201.

Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.22 Sleep Disorders RACHEL MANBER, RICHARD R. BOOTZIN, and DEREK LOEWY University of Arizona, Tucson, AZ, USA 8.22.1 INTRODUCTION

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8.22.1.1 Basic Sleep Physiology 8.22.2 WHAT CAUSES SLEEP DISTURBANCE?

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8.22.2.1 Biological Rhythms 8.22.2.2 Sleep Fragmentation 8.22.2.2.1 Sleep apnea 8.22.2.2.2 Periodic limb movement disorder 8.22.2.3 Substances 8.22.2.4 Hypnotics 8.22.2.4.1 Alcohol 8.22.2.4.2 Stimulants 8.22.2.5 Behavioral, Cognitive, and Environmental Factors 8.22.2.5.1 Behavioral and cognitive factors 8.22.2.5.2 Lifestyle and environmental factors 8.22.3 LIFESPAN ISSUES

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8.22.3.1 Infancy and Childhood 8.22.3.2 Adolescence 8.22.3.3 The Elderly 8.22.4 ASSESSMENT OF SLEEP DISORDERS

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8.22.4.1 Assessment Interview 8.22.4.2 Assessment Techniques 8.22.4.2.1 Polysomnography 8.22.4.2.2 Actigraphy 8.22.4.2.3 Sleep diaries 8.22.4.2.4 Multiple sleep latency test 8.22.5 TREATMENT OF SPECIFIC SLEEP DISORDERS 8.22.5.1 Circadian Rhythm Disorders 8.22.5.2 Primary Insomnia 8.22.5.2.1 Stimulus-control instructions 8.22.5.2.2 Bright light 8.22.5.2.3 Relaxation 8.22.5.2.4 Paradoxical intention 8.22.5.2.5 Sleep restriction 8.22.5.2.6 Cognitive components 8.22.5.3 Treatment of Childhood Sleep Difficulties 8.22.5.4 Parasomnias 8.22.5.5 Sleep Apnea 8.22.5.6 Restless Leg Syndrome and Periodic Limb Movements 8.22.5.7 Narcolepsy 8.22.6 INTERACTIONS WITH OTHER DISORDERS 8.22.6.1 8.22.6.2 8.22.6.3 8.22.6.4

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Alzheimer's Disease Chronic Pain Disorders Acquired Immune Deficiency Disorder Psychiatric Disorders

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Sleep Disorders 8.22.6.4.1 Mood disorders 8.22.6.4.2 Anxiety disorders

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8.22.7 PROFESSIONAL ISSUES

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8.22.8 CONCLUSION

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8.22.9 REFERENCES

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8.22.1 INTRODUCTION Sleep disorders have significant impact on daytime functioning, health, and mood. Epidemiological data indicate that, in comparison to noninsomniacs, insomniacs more frequently report trouble remembering things, difficulty accomplishing needed tasks, and feeling less physically well (National Sleep Foundation, 1991; Silva, Chase, Sartorius, & Roch, 1996). The data also indicate that insomniacs more frequently report having a more negative mood, being less able to enjoy contact with family and friends, and involvement in vehicle accidents in which fatigue was a factor. Daytime sleepiness is a particularly troublesome consequence of poor sleep. A recent Gallop poll (National Sleep Foundation, 1995a) found that about half (52%) of the adults surveyed reported driving while feeling drowsy and about a third (31%) admitted that they have, at some time, dozed off while at the wheel of a vehicle. It is estimated that about 46% of total and 36% of fatal motor vehicle accidents are caused by sleepiness (Leger, 1994). Symptoms of sleep disturbance are often reported by patients receiving psychotherapy. Although these symptoms are frequently viewed by mental health professionals as part of the presenting psychopathology, they appear to be resistant to change. In a study of 854 adult outpatients receiving individual psychodynamic and eclectic psychotherapy at five mental health centers, sleep disturbance symptoms were among the most resistant to change across 52 sessions (Kopta, Howard, Lowry, & Beutler, 1994). For example, the proportion of patients who showed clinically significant improvement in their sleep symptoms after eight psychotherapy sessions was 23%, after 26 sessions was 27%, and after 52 sessions was only 30%. In contrast, interventions that specifically address sleep problems produce clinically significant improvements in sleep. Two meta-analyses of 59 and 66 treatment studies focused on insomnia found that short-term brief therapies varying in length from 4 to 12 weeks produced substantial improvement (Morin, Culbert, & Schwartz, 1994; Murtagh & Greenwood, 1995). There are at least two possible reasons for the discrepancy in treatment response in the two

settings. First, sleep disturbance symptoms are seldom the direct focus of general psychotherapy and specific empirically validated treatments for sleep disturbance are seldom used outside a sleep disorder center. Second, many outcome studies that focus on insomnia include subjects with only primary insomnia, excluding individuals with other sleep disturbances, such as those associated with psychopathology. Nevertheless, the clear implication from these findings is that to change sleep complaints, therapists must focus on sleep and use empirically supported treatments. Because sleep complaints do not change as the result of general psychotherapy, it is important to be well informed on the different sleep disorders and the best ways to assess and treat them. This chapter provides an overview of the most common sleep disorders with an emphasis on psychological aspects of etiology, assessment, and treatment. It is intended to provide information to help the clinical psychologist assess and treat sleep complaints and determine when a referral to a sleep disorder center may be indicated.

8.22.1.1 Basic Sleep Physiology A knowledge of the physiology of normal sleep is essential for understanding sleep disorders. Electroencephalogam (EEG), eye movements (EOG), and chin muscle reactivity (EMG) are the basic elements from which internal organization of sleep is inferred. Normal sleep of an adult is organized into sleep cycles lasting about 90 minutes. Each sleep cycle consists of different sleep stages that are determined primarily by the dominant frequency in the EEG signal. The EEG signal gains amplitude and slows down as one becomes drowsy and progresses through the non-REM stages of sleep from stage one to stage two, to the slow wave (delta) sleep stages (three and four). This process is accompanied by a subjective sense of increase in depth of sleep as measured both by the lengthening of the arousal threshold and by the increase in the percentage of individuals who report being asleep when awakened from a given sleep stage. Rapid eye movement (REM) sleep is the stage of sleep that is most likely to be associated with

What Causes Sleep Disturbance? dreaming. REM sleep is markedly different from stages one through four. Unlike these four non-REM stages, REM sleep is characterized by rapid conjugate eye movements, similar to those occurring during wakefulness. It is also associated with a loss of postural muscle tone (atonia), that protects us from acting out our dreams. This loss of muscle tone is reflected in the flattening of all activity in the mentalis muscles (under the chin) during the transition from non-REM to REM sleep. In addition, REM sleep is associated with significant changes in important regulatory mechanisms including irregular respiration, increased heart rate, and disrupted thermoregulation. These normal regulatory changes are of clinical significance. For example, breathing cessation during sleep is more likely to manifest during REM sleep, when respiration is less regular. The first sleep cycle typically progresses from stage one to stage two to slow wave sleep and might end with a brief REM episode. Later in the night the amount of slow wave sleep within each cycle decreases, and the amount of REM increases. The last sleep cycle typically contains no slow wave sleep and a long REM episode. This relative distribution of sleep stages across the night explains why some disorders, such as those associated with partial and confusional arousal from slow wave sleep, are observed at the first part of the night, whereas other disorders, such as those associated with REM abnormalities are observed during the latter part of the night. 8.22.2 WHAT CAUSES SLEEP DISTURBANCE? Sleep is affected by many aspects of our existence. The biological clocks regulating sleep and wakefulness, our physical and psychological well-being, our lifestyle, and substances we consume all interact with the systems regulating our sleep. These factors and their effects the duration of sleep, its internal organization, and its quality, are discussed below. 8.22.2.1 Biological Rhythms Sleep must be understood within the context of biological rhythms. There is substantial evidence that sleep±wake behavior has an endogenous circadian (daily) rhythm; that is, a daily rhythm that persists in the absence of environmental cues. Under normal conditions, the sleep±wake circadian rhythm is synchronized with other circadian rhythms including core body temperature, cortisol, and melatonin. Core body temperature is used as a means of

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measuring the underlying sleep±wake rhythm. Within the normal range, higher core body temperatures are associated with alertness and lower temperatures are associated with sleep and sleepiness. Circadian rhythm disorders occur when individuals attempt to sleep at times that are inconsistent with their underlying biological clocks. In delayed sleep phase syndrome (DSPS), the sleep±wake circadian rhythm is delayed compared to when the individual attempts to sleep. Individuals with this problem report difficulty falling asleep at a desired bedtime, but have normal sleep if they attempt to sleep a few hours later. Delayed sleep phase individuals commonly identify themselves as ªnight peopleº and report being most alert during the late evening and night hours. This problem is often seen in adolescents and young adults. In contrast, in advanced sleep phase syndrome, sleep occurs at an earlier than desired time and the individual awakens earlier than desired. This problem is often seen in older adults. Bright light significantly affects the circadian sleep±wake rhythm. In the absence of light and other cues regarding the time of day, the endogenous biological rhythm regulating sleep and wakefulness lasts about 25, rather than 24, hours (Moore-Ede, Martin, Sulman, & Fuller, 1982). Under normal circumstances, environmental influences, such as sunlight, sleep, meals, and social activity, entrain the endogenous rhythm to a 24-hour cycle. The combination of bright light during wake and total darkness during sleep is a particularly strong entraining influence and can facilitate adjustment to changes in sleep schedules (Czeisler et al., 1989). Two common environmentally caused circadian rhythm problems are shift work and timezone changes. Because of family and social demands, night shift workers usually attempt to live their days off work on a different schedule than their work days. A disrupted sleep±wake schedule often results in disturbed and shortened sleep, sleepiness on the job, reduced performance levels, and psychological distress due to disruptions in family and social life (Penn & Bootzin, 1990). Shift work coping problems are affected by individual factors as well as factors associated with the work system. For example, adjustment to shift work is more difficult after age 50, for individuals with a history of gastrointestinal complaints, and for workers on rotating rather than on permanent shifts schedules (Monk, 1994). Longer biological rhythms also affect sleep. Seasonal and monthly biological clocks are called infradian rhythms. Seasonal sleep±wake rhythms can be seen in hibernating animals.

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Humans who live in the extreme northern and southern latitudes experience disrupted sleep during seasonal periods of 24-hour darkness and 24-hour sunlight. Individuals with seasonal affective disorder (SAD) also report changes in sleep need and sleep quality with the changing seasons of the year. The biological clock that regulates menstruation is another infradian rhythm that interacts with the sleep±wake system. Both subjective and objective data indicate that sleep is more disturbed and more fragmented premenstrually compared to the more hormonally quiescent preovulatory phase (Manber & Bootzin, 1997; Parry, Mendelson, Duncan, Sack, & Wehr, 1989). Initial evidence suggests an interaction between the daily core body temperature and some of the longer biological rhythms. For example, the amplitude of the temperature rhythm is lower during the premenstrual phase (Lee, 1988), and its phase is advanced during the months of shorter photoperiods in individuals with SAD (Terman, 1994). 8.22.2.2 Sleep Fragmentation Sleep is fragmented when it is disrupted by intermittent arousals. Even when repeated arousals are brief and do not significantly reduce total sleep time, the subjective perception upon awakening in the morning is that sleep was not refreshing. In fact, sleep fragmentation is a better predictor of daytime sleepiness than the amount of total sleep (Carskadon, Brown, & Dement, 1982; Martin, Engleman, Deary, & Douglas, 1996). Sleep experts distinguish between arousals and awakenings. The technical distinction between the two has to do with the length of time that the EEG signal is fast enough to be characterized as ªnonsleep.º The sleeper is usually not aware of arousals or short awakenings. Two common causes of sleep fragmentation are breathing cessation and periodic leg twitches. Both are symptoms of sleep disorders that are discussed next. 8.22.2.2.1 Sleep apnea Sleep apnea is a sleep disorder in which an individual ceases breathing during sleep for brief periods (average duration 10±30 seconds) throughout the night. These events may be due to an obstruction of the upper airway, as is the case in obstructive sleep apnea, or to abnormal functioning of central respiratory mechanisms, as is the case with central sleep apnea. Apnea episodes are frequently associated with arterial oxygen desaturation (hypoxemia). Sleep apnea, in its various forms, can cause significant sleep fragmentation. Although not

all apnic events will result in full awakenings, almost all will be associated with some form of arousal. A patient may experience hundreds of these events each night and consequently might experience severe daytime sleepiness (Roehrs, Zorick, Witting, Conway, & Roth, 1989). Loud snoring is strongly associated with apnea and serves as a diagnostic symptom. Primary snoring, in itself, may also cause fragmentary arousals during sleep. A more recently documented sleep-related breathing disorder is upper airway resistance syndrome (Guilleminault, 1991). This disorder is associated with airway obstruction and breathing cessions that are shorter than 10 seconds but produce microarousals and result in nonrestorative sleep and daytime somnolence. Sleep apnea is more common in men than in women and increases in men with age and in women after menopause. Obesity and the anatomy of the upper airways also contribute to sleep disordered breathing (Isono & Remmers, 1994). Ingestion of central nervous system depressants, such as narcotics, benzodiazepines, and alcohol, can exacerbate sleep apnea (Robinson & Zwillich, 1994).

8.22.2.2.2 Periodic limb movement disorder Periodic limb movement disorder is another common physical cause of sleep fragmentation. In this disorder the limbs, most often the legs, will repeatedly ªtwitchº or ªjerkº while the person is sleeping. Typically, the sufferer is unaware of this activity, and it is usually reported by the bed partner rather than the patient. Periodic limb movements (PLMs) usually cause microarousals, but may also lead to full awakenings. PLMs are commonly associated with complaints of excessive daytime sleepiness. A related phenomenon is restless legs syndrome (RLS) in which the patient may report odd sensations or discomfort in the legs during the day or, most notably, when lying down at bedtime. This discomfort is distinct from a leg cramp and is best described as an uneasy deep sensation. The patient may report having to move or rub the legs or get out of bed and walk about to alleviate the symptoms. Individuals experiencing symptoms of restless legs while awake frequently exhibit PLMs during sleep (Montplaisir, Godbout, Pelletier, & Warnes, 1994). Restless legs may be a symptom of iron deficiency and may also be seen in uremia, pregnancy, diabetes mellitus, rheumatoid arthritis, and polyneuropathy. However, both periodic limb movement disorder and RLS are sleep disorders that are often independent of other medical conditions.

What Causes Sleep Disturbance? 8.22.2.3 Substances Both prescription and nonprescription substances can cause sleep disturbances. The chronic use of drugs, alcohol, and caffeine to induce or to suppress sleepiness may cause adverse effects. Further, many substances taken for other health and lifestyle reasons can affect sleep. 8.22.2.4 Hypnotics The prescription of sedative/hypnotics is the most frequently used treatment for insomnia. About 4.3% of the population use medically prescribed psychoactive medication to promote sleep (i.e., hypnotics, anxiolitics, and antidepressants; Mellinger, Balter, & Uhlenhuth, 1985). Epidemiological studies in the USA report a prevalence of hypnotics of approximately 2.5% (Balter & Uhlenhuth, 1992; Mellinger et al., 1985). The prevalence rates for hypnotic medication are higher in many other countries. For example, the figures of habitual use range from 3.8 to 6.2% in France (Quera-Salva, Orluc, Goldenberg & Guilleminault, 1991) and 6.5% in Israel (Matalon, Yinnon, & Hurwitz, 1990). Of the sedative/hypnotics, sedative benzodiazepines are the most frequently prescribed (Morin & Kwentus, 1988). These drugs have a definite effect on sleep architecture including reduction in sleep latency, decrease in the number of nocturnal awakenings, increase in total sleep time, and decrease in amount of REM and delta sleep. All central nervous system depressants, including benzodiazepines, depress respiration and exacerbate sleep apnea. Hypnotics have a number of other deleterious side effects including drug hangover and, for some drugs, increased sleep disruptions in the latter part of the night. The pharmacological effects of hypnotics depend upon dose, absorption rate, and serum half-life (Greenblatt, 1992; Nicholson, 1994). Hypnotics with long halflives (such as flurazepam) are likely to produce drug hangover and daytime sedation. Hypnotics with short half-lives (such as triazolam) may produce rebound insomnia the very same night the medication is taken. The same side effects and disrupted sleep architecture that Rare associated with hypnotics also apply to benzodiazepine tranquilizers such as diazepam (Valium). The elderly are particularly vulnerable to deleterious side effects of hypnotics because they are more likely to have disorders that can be aggravated by hypnotics, such as respiratory, hepatic, renal, or cardiac disorders. In addition, the period of potential toxicity of hypnotics

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increases with the age-dependent decreases in protein-binding ability, circulation time, and kidney and liver metabolism of the drugs (Albert, 1981). The use of sedative/hypnotics to induce sleep is effective for short-term use, with effects that last from two to four weeks. With continued use, tolerance develops rapidly and larger doses are required to achieve a soporific effect. As dosage is increased to offset tolerance, daytime carryover effects also increase and may include symptoms such as excessive sleepiness, poor motor coordination, visual±motor problems, and late afternoon restlessness (American Sleep Disorder Association [ASDA], 1990). Cessation of sedative/hypnotics results in withdrawal symptoms that include severe insomnia. Withdrawal symptoms promote psychological dependency as the individual becomes convinced that the hypnotics are the only thing preventing sleeplessness night after night. Withdrawal effects are usually stronger with the short half-life hypnotics. With the long half-life hypnotics, there is still medication in the blood stream for days after the insomniac stops taking the medication, producing the equivalent of a tapered withdrawal. During the past few years, zolpidem, a nonbenzodiazepine hypnotic, has been available in the USA. Zolpidem is an imidazopyridine which is related to benzodiazepines but so far has not been shown to have rebound or daytime residual effects (Nicholson, 1994). Zolpidem is a very short half-life medication and is primarily useful for sleep onset problems. However, zolpidem, like all hypnotics, is a central nervous system depressant and may exacerbate other health problems. Antidepressants with sedating properties are often used in the management of insomnia. However, not all antidepressants have beneficial effects on sleep. Tricyclic antidepressants suppress REM sleep and can exacerbate periodic limb movements. Monoamine oxidase (MAO) inhibitors have an even greater suppression of REM (Minot, Luthringer, & Macher, 1993). When REM suppressing agents are discontinued, there is a rebound in REM sleep that is frequently associated with nightmares and intense dreams. Many, but not all, of the new generation antidepressants produce increased physiological arousal during sleep resulting in reduced delta activity and decreased sleep efficiency (Armitage, Trivedi, Rush, & Hoffmann, 1995). Increased physiological arousal and REM suppression are particularly evident in some of the selective serotonin reuptake inhibitors. On the other hand, serotonin receptor modulators, such as Trazodone and Nefazodone, increase sleep continuity and

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do not reduce slow wave sleep (Reynold, Buysse, Nofzingor, & Kupfer, 1995). Nonprescription substances that facilitate sleep include camomile tea, valerian root, tryptophan, and melatonin. None of these substances has been shown to be helpful for persistent insomnia. It should also be emphasized that because these substances are not regulated by the Food and Drug Administration, the consumer cannot be assured of purity. There is substantial current interest in the use of melatonin. While there are promising research results (e.g., Haimov et al., 1995; Zhdanova, Wurtman, Lynch, Morabito, & Matheson, 1995), important questions about dose size and long-term effects have yet to be answered. 8.22.2.4.1 Alcohol The problems associated with hypnotics and tranquilizers are also prevalent with alcohol. Like other central nervous system depressants, alcohol is REM-sleep depriving. Continued use results in tolerance to the alcohol as a sleepinducing agent and sleep fragmentation becomes more prominent. Patients often increase the amount of alcohol or add other sedatives in order to sleep. Some patients will report that they have no sleep disturbance as long as they continue to take substantial amounts of alcohol nightly. Withdrawal from heavy drinking produces a REM rebound effect which is accompanied by restless sleep and nightmares. Sleep fragmentation often persists long after alcohol use is discontinued (Gillin, 1994). Alcohol also exacerbates sleep apnea. An important additional danger is that alcohol potentiates the effects of hypnotics and other depressants. Thus, the combination of alcohol and hypnotics may intensify and prolong deleterious side effects. 8.22.2.4.2 Stimulants The effects of stimulants on sleep include an increase in sleep latency, a decrease in total sleep time, and an increase in spontaneous awakenings (ASDA, 1990; Brown et al., 1995). Substances that have stimulating effects on the central nervous system include caffeine, some prescription mediations, nicotine, cocaine, and amphetamines. Caffeine has a plasma half-life of approximately six hours and as a result its effects can be felt long after it has been ingested. Reducing or eliminating the intake of caffeine, particularly in the afternoon and evening, can reduce its negative effects on sleep. Some prescription medications, such as Ritalin, are prescribed primarily for increasing alertness in disorders of

excessive daytime sleepiness. Other prescription medications, including analgesics, bronchodilators, decongestants, and appetite suppressants, often contain stimulants and disturb sleep architecture as a side-effect of long-term use. Nicotine is another central nervous system stimulant that produces lighter and more fragmented sleep. Cocaine and amphetamines have euphoric and sleep suppressing effects that reinforce their continued use. As tolerance to the alerting and euphoric effects of cocaine and amphetamines increases, higher doses are necessary and greater disturbance in sleep are experienced. Cessation of these drugs, as well as nicotine, may be associated with withdrawal symptoms such as sleepiness, irritability, lassitude, and severe depression (ASDA, 1990; Wetter, Fiore, Baker, & Young, 1995). 8.22.2.5 Behavioral, Cognitive, and Environmental Factors Insomnia may begin with a precipitating event. Stress, disruptive sleep environment, or an abrupt change in sleep schedule are three examples of events that could precipitate insomnia. The interaction between a precipitating event and predisposing and/or maintaining factors determines the extent and the course of insomnia. Predisposing factors explain individual differences in the response to a precipitating event. For example, two individuals with different underlying circadian rhythms might respond differently to a change from a night shift to a day shift. This change in schedule might precipitate insomnia in a ªnight personº yet be a welcome relief for a ªmorning person.º In other words, physiological differences in the sleep±wake rhythm are predisposing factors that might interact with a precipitating event to produce sleep disruptions. Factors that maintain sleep problems could be behavioral, cognitive, or environmental. For example, the strategies one uses to solve or cope with sleep difficulties can sometimes exacerbate the sleep problem and maintain it long after a precipitating event is no longer relevant. 8.22.2.5.1 Behavioral and cognitive factors Behaviors that are inconsistent with the maintenance of good quality sleep and full daytime alertness are referred to collectively as inadequate sleep hygiene. Inadequate sleep hygiene commonly develops when individuals adopt ineffective strategies for coping with their sleep problem. One common strategy for coping with lost sleep is to sleep in until the late morning hours following a rough night. This

Lifespan Issues strategy could lead to irregular sleep±wake schedules that might prolong the sleep difficulties by weakening the underlying sleep±wake rhythm. Another common behavioral strategy to cope with poor sleep at night is to take an extended nap during the day. However, extended afternoon naps are often followed by difficulties initiating sleep at night. Extremely sedentary lifestyles also fall into the category of inadequate sleep hygiene. These behaviors are not likely to provide sufficient entrainment cues to the sleep±wake regulatory system and might consequently be associated with disturbed sleep. Conditioning factors are often involved in the development of sleep problems. For example, operant conditioning might be involved in the development of sleep disturbance in the very young with parental soothing behaviors reinforcing night time calling behaviors by a toddler. Classical conditioning processes could also contribute to disturbed sleep. Many insomniacs engage in activities at bedtime that are incompatible with falling asleep, thus rendering the bed a cue for arousal rather than for sleep (Bootzin & Nicassio, 1978). For some, bedtime is the first available quiet time and it becomes the time to rehash the day's events and make plans for the next day. These activities promote arousal, rather than sleep. In addition, with time, for many insomniacs the bedroom becomes associated with anxiety and frustration about their inability to fall asleep, and worry about how lack of sleep might affect their performance the following day. These individuals often have less difficulty falling asleep while away from home. A common cognitive characteristic of insomniacs is the tendency to overestimate latency to sleep onset and to underestimate total sleep time (Borkovec, Lane, & Vanoot, 1981; Carskadon et al., 1976). The causes of this misperception are not clear. It could be related to excessive worry in bed and increased cognitive arousal (Monroe, 1967) or to hypervigilance to external stimuli during sleep (Anch, Saskin, & Moldofsky, 1989). Alternately, poor time estimation could be related to a compromised ability to distinguish between sleep and wakefulness states (Engle-Friedman, Baker, & Bootzin, 1985). This appears to be the case in approximately 5% of insomniacs. These insomniacs are diagnosed with ªsleep-state misperceptionº because objective sleep measures do not verify their subjective complaints. 8.22.2.5.2 Lifestyle and environmental factors Stress is one of the most common precipitating cause of insomnia. It is usually associated with physiological, cognitive, and emotional

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arousal that, in themselves, contribute to sleep disruptions. Research has demonstrated that compared to normal controls, insomniacs have greater whole body metabolic rates, body temperature, and heart rate both during the day and at night (Bonnet & Aranda, 1995). It is not clear if this heightened arousal is the cause or consequence of poor sleep. In the last decade several investigators have raised the hypothesis that insomnia results from increased central nervous system activation that interferes with the sleep system (Stephanski, Zorick, Roehrs, Young, & Roth, 1988; Bonnet & Arand, 1996). Environmental factors such as noise level, light intensity, room temperature, and safety are important to the quality and continuity of sleep. When these environmental factors are not optimal they often contribute to sleep disruptions though they are seldom the primary cause of insomnia (ASDA, 1990). Sleeping in an environment that is perceived to be unsafe leads to hypervigilance that results in lighter sleep. Noise, particularly unpredictable noise (Sanchez & Bootzin, 1985), decreases both the amount of slow wave sleep and the continuity of sleep. It also increases sleep fragmentation, body movement, and number of stage shifts. In contrast, continuous white noise is often useful for masking noisy sleep environments. An uncomfortable temperature appears to have greater negative effect on measures of sleep continuity than on the ability to fall asleep at bedtime. Sleep is more likely to be disturbed if the temperature changes significantly during REM sleep than if the temperature change occurs during non-REM sleep (Satinoff, 1988). Sleep problems also need to be considered within the family context. Choices about sleep schedules, sleep environments, and other sleep behaviors might depend on the family environment. For example, some insomniacs might be going to bed at times that are not congruent with their own biological clocks because it is important within their family context that they go to bed at the same time their spouse does. Family issues might also influence the sleep environment itself. Concerns about waking up spouses might prolong the time insomniacs might stay in bed worrying about their inability to fall asleep.

8.22.3 LIFESPAN ISSUES The two extreme ends of the lifespan associated with significant changes in organization of sleep. These changes accompanied by corresponding changes in types and prevalence of sleep disorders.

are the are the

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8.22.3.1 Infancy and Childhood During the first few months of life, the diurnal organization of sleep and wakefulness becomes synchronized with the light±dark cycle and with social cues. By six months of age, most infants have one long period of sleep at night and two naps during the day. During toddlerhood, the number of naps is reduced to a single nap a day and by the age of four or five most children do not nap during the day. The average total sleep time decreases from about 14 hours at the end of the first year to about 11 or 12 hours by age five. The internal organization of each sleep episode undergoes significant changes during the first year. During the first few months sleep becomes organized into cycles lasting 50±60 minutes and the time spent in REM within each sleep cycle is reduced and becomes more prevalent in the latter part of the night. Within 10 minutes after sleep onset, the young child descends into slow wave sleep and seldom enters REM sleep before the second sleep cycle. Slow wave sleep is quantitatively and qualitatively different in children. It is characterized by greater amplitude and significantly higher arousal thresholds than in adults. The amount of time spent in slow wave sleep, the amplitude of the brain wave, and the arousal thresholds all decrease from about age 10 onwards (Feinberg, 1989). The most common parental concern about their infant's sleep is the child's difficulty settling into sleep either at bedtime or in the middle of the night. During early childhood, insufficient sleep manifests as hyperactivity and irritability rather than sleepiness. From toddlerhood onward, sleep problems decrease from about 25% at age two to about 10% during the preschool years (Richman, 1987). Sleep disturbances in children have been found to be primarily transient in nature when prospective methodology was used (Strauch & Meier, 1988), but retrospective studies tend to find greater stability of childhood sleep disorders (Hauri & Olmstead, 1980; Richman, Stevenson, & Graham, 1982) Disorders of partial arousal from slow wave sleep, such as sleep walking, night terrors, sleep talking, and nocturnal enuresis, are most prevalent during childhood when slow wave sleep is most abundant. These disorders tend to resolve with age as the amount of slow wave sleep decreases. Nocturnal enuresis is of particular relevance to this age group. It is estimated that 30% of children up to age four may wet their bed at night and that the prevalence declines to 3% by age 12. Although maturation decreases the prevalence of nocturnal enuresis, this decrease is slow. For example,

when left untreated, nocturnal enuresis persists in 85% enuretic children (age eight) and in 84% of enuretic adolescents one year postinitial assessment (Forsythe & Redmond, 1974).

8.22.3.2 Adolescence The internal organization of sleep of an adolescence resembles that of an adult with sleep cycles lasting about 90 minutes. Both the physiological and psychological processes that occur during this period of life have significant effects on sleep. The accumulation of research on the sleep of adolescents suggests that, contrary to societal beliefs, this is a period of high sleep need. Yet survey data indicate a decline in total sleep time from 10 hours in prepubertal children to seven in late puberty. School demands, strong pull for spending time with peers, extracurricular activity, and work for wages, all contribute to delayed bedtimes and to a reduction in total sleep time on school nights (Carskadon, Mancuso, & Rosokiad, 1989). Not surprisingly, increased sleep deprivation during adolescence is accompanied by increased levels of daytime sleepiness. More than half of the adolescents surveyed both in France and in the United States complained of daytime sleepiness (Carskadon & Dement, 1987; Manber et al., 1995a, 1995b; Strauch & Meier, 1988). Objective measures of sleepiness (see Section 8.22.4.2.4) confirm this increase in daytime sleepiness during the second decade of life. Levels of daytime sleepiness in midadolescence, although high, are below the levels seen in patients with disorders of excessive daytime sleepiness. Nevertheless, the impact of chronic mild sleep deprivation on many aspects of adolescentsº life is not trivial (Carskadon & Dement, 1981; Manber & Bootzin, 1991) and is amplified by alcohol and drug abuse and by emotional stress. Irritability, difficulty in sustaining attention, and vulnerability to minor illnesses and injuries could increase with increased sleepiness. The second most common sleep complaint during adolescence is sleep onset insomnia. It is reported by about 12±14% of adolescents (Price, Coates, Thoresen, & Grinstead, 1978; White, Hahn, & Mitler, 1980). It has been suggested that sleep onset insomnia, particularly during adolescence, might actually be a mild form of delayed sleep phase insomnia (Henschel & Lack, 1987). To cope with insufficient sleep on school nights, adolescents typically try to catch up and sleep in during the weekend. This leads to a development of irregular sleep patterns that could weaken the

Assessment of Sleep Disorders underlying biological rhythm regulating sleep and produce a delayed sleep phase problem (Carskadon, Vieira, & Acebo, 1993). Irregular sleep patterns appear to contribute not only to sleep difficulties but also to elevated levels of sleepiness (Billiard, Alperovitch, Perot, & Jammes, 1987; Strauch & Meier, 1988). Two recent studies of sleepy and irregular sleepers suggest that although sleep deprivation is a primary cause of daytime sleepiness, schedule irregularity further exacerbates the problem. In one study, sleepy and irregular sleepers regularized their sleep schedules but suffered sleep loss in the process. These subjects experienced an increase in daytime sleepiness and a concomitant deterioration in daily mood and concentration ratings (Manber & Bootzin, 1991). A second study examined the efficacy of regularizing sleep schedules while preventing sleep deprivation. This study found that a combination of adequate sleep durations with regular nocturnal sleep schedules produced greater improvement in daytime sleepiness than adequate sleep duration alone (Manber, Bootzin, Acebo, & Carskadon, 1996). Thus, to improve sleep and daytime functioning, adolescents should be encouraged to obtain sufficient sleep and to maintain regular sleep schedules.

8.22.3.3 The Elderly The most frequent sleep complaints of older adults are increased frequency and duration of nocturnal awakenings and light sleep. These complaints parallel developmental changes in psychophysiological sleep parameters that occur with advancing age (Bliwise, 1994). One of the most consistent findings associated with aging, documented through polysomnography, is an increase in the frequency of awakenings, particularly during the latter half of the night (e.g., Karacan & Hursch, 1974; Reynolds 1985). Older adults also have more difficulty falling back to sleep than younger individuals (Webb & Campbell, 1980). As a consequence of increased time awake and difficulty falling back to sleep, older adults get less total sleep at night than younger adults. However, because daytime naps increase in frequency with age, the total sleep per 24 hours of the elderly is about equivalent to that of younger individuals. Aging appears to affect both non-REM slow wave sleep and REM sleep. There is a marked reduction in the amount of stages three and four of sleep with little or no stage four sleep in about one-quarter of the population over the age of 60. The reduction in stages three and four results primarily from a reduction in amplitude of the

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EEG waves, so that they do not meet the amplitude criterion for scoring as slow wave sleep (e.g., Feinberg, Koresko, & Heller, 1967). Thus, slow EEG-frequency sleep still occurs in the elderly, but there is a marked loss in EEG amplitude. There are also small decreases in REM sleep with aging. Unlike younger individuals, older adults have REM periods that remain uniform or decrease in duration during the night (Reynolds et al., 1985). Increased REM early in the night's sleep is associated with depression and with the normal advance in the phase of the circadian sleep rhythm with age. In addition, shortened latency to REM sleep and lower amounts of REM have been found to be associated with intellectual decline (Feinberg et al., 1967). It should be emphasized that while there are substantial changes in sleep associated with aging, these changes do not always result in a subjective complaint of sleep disturbance. Changes in slow wave sleep and REM sleep, for example, may not influence judgments about the quality of sleep, while frequent awakenings do (Bonnet & Johnson, 1978). There are gender and age differences among the elderly, particularly related to sustaining sleep and the amount of slow wave sleep obtained. Although there is an age-related decrease in the slow wave sleep of the elderly, aging women appear to have more slow wave sleep than older men (Hoch et al., 1987). For older women, compared with older men, a higher and more stable relationship exists between self-reported soundness of sleep and the polysomnographic variable of slow wave sleep. 8.22.4 ASSESSMENT OF SLEEP DISORDERS 8.22.4.1 Assessment Interview The clinical assessment of sleep disorders begins with a detailed diagnostic intake interview that determines the course of treatment as well as the potential need for further diagnostic procedures such as an all night sleep study (polysomnography). Because a patient's global statement is rarely accurate, it is important to quantify the severity and extent of a presenting sleep problem by systematically exploring the patient's sleep pattern including bedtime, time to sleep onset, time awake after sleep onset, wake±up time, and the degree of variability in these sleep parameters. A careful examination of the multiple causes of sleep disturbance is the central focus of the intake interview. Evaluating the contribution of causal factors such as sleep hygiene, medical and psychiatric histories,

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medications, and other substances, is relatively straightforward. Evaluation of circadian tendencies and of symptoms of sleep apnea or periodic limb movement disorder are less obvious. Circadian tendencies can be assessed by inquiring about the timing of optimal functioning as well as times of day when sleepiness is most pronounced. The clinical assessment of potential sleep apnea is done by inquiring about loud snoring, and witnessed gasping for air or shortness of breath during the night. Sweating, unrefreshing sleep, morning headaches, morning dry mouth, and swelling in the extremities are also important clinical indicators of potential sleep apnea. Physiological features that are potential sources of breathing obstructions also need to be assessed. These include obesity and the structure of the chin, the uvula, and the tongue. A positive clinical indication for sleep disordered breathing needs to be followed up by a polysomnographic assessment of sleep that includes apnea monitoring. The clinical assessment of RLS and PLMs relies on the symptom of an uneasy sensation in the leg while trying to fall asleep that typically triggers the patient to get out of bed and walk. Polysomnography is indicated when clinical symptoms are present. Polysomnography allows quantification of severity of RLS and is important in the diagnosis of periodic limb movement disorder. The impact of poor sleep on daytime functioning, particularly on daytime sleepiness, is an important determinant of diagnosis and treatment course, and therefore needs to be an integral part of the assessment of sleep disorders. The quantification of daytime subjective sleepiness is accomplished by evaluating the tendency to fall asleep in different settings. Unwanted and inappropriately timed daytime sleep episodes often flag the clinician that disorders of excessive daytime sleepiness, such as sleep apnea, need to be ruled out. When reported levels of daytime sleepiness are severe and include frequent unintentional sleep episodes, there needs to be an assessment for narcolepsy. Narcolepsy is a neurological disorder characterized by excessive daytime sleepiness that is typically associated with cataplexy (a sudden spell of weakness, or muscle atonia), and other REM sleep phenomena such as sleep paralysis and hypnagogic hallucination (hallucination occurring at the interface between wakefulness and sleep). Narcolepsy can be assessed both through clinical symptoms and through a special polyomnographic procedure (see also Section 8.22.5.7). In contrast, an inability to nap, even when feeling very tired, is common in insomniacs and should not be

interpreted as optimal alertness but rather as a reflection of the insomniac's difficulty in falling asleep. The assessment of sleep disturbance during infancy and childhood requires attention to a unique set of relational and cultural factors. These include the temperament of the infant, bedtime interaction between parent and child, separation anxiety, difficulties in self soothing, and parental conflict regarding child rearing practices. The potential contribution of allergy to cow's milk to disturbed sleep in the infant needs to be assessed (Kahn et al., 1987), but other aspects of feeding, including amount and method, do not appear to be related to sleep difficulties for most infants. The interview can be more efficient and thorough when it is preceded by a short battery of questionnaires addressing sleep habits, common sleep symptoms, daytime sleepiness, depression, and anxiety. A few existing sleep questionnaires can further illuminate the patientsº attitudes and beliefs about their sleep problem (Morin, 1993), as well as level and type of anticipatory anxiety at bedtime (Bootzin, Shoham, & Kuo, 1994). Because one cannot observe oneself during sleep, input from a significant person in the patient's life is often valuable. This applies particularly to breathing behaviors during sleep and to odd sleep behaviors, such as sleep walking. In addition, information from a significant other is important when the patient does not remember, is unaware, or minimizes the presenting problem. 8.22.4.2 Assessment Techniques 8.22.4.2.1 Polysomnography Polysomnography (PSG) is the most commonly used method for the objective assessment of sleep. In a clinical setting, it includes an overnight monitoring of sleep in the sleep laboratory that includes EEG, EOG, and chin EMG, as well as airflow, respiratory effort, and oximetry to screen for apnea, and leg or arm EMG to test for PLMs. An overnight sleep study can assess the severity of disorders such as sleep apnea, RLS, and PLMs and is part of the diagnostic procedure for narcolepsy. For these disorders, a single night of PSG is usually adequate because the defining characteristics of these disorders are stable (Bootzin et al., 1995). However, sleep parameters that are relevant to the assessment of insomnia are often altered on the first night of sleep in the unfamiliar laboratory environment. This ªfirst night effectº and the great night-to-night variability of insomnia symptoms make it difficult to interpret the results from a single night of

Treatment of Specific Sleep Disorders polysomnography. Consequently, it is generally agreed that polysomnography should not be used in the assessment of insomnia unless a careful history or physical examination suggest the presence of physiological disturbances such as sleep-related breathing disorder or PLM (Reite, Buysse, Reynolds, & Mendelson, 1995). Use of polysomnography is also recommended when the treatment of insomnia is unsuccessful (ASDA, 1995a). Polysomnography is also not an optimal tool in the clinical assessment of disorders that involve events that do not occur nightly, such as sleep walking and night terrors, because they are not likely to be ªcapturedº during the particular night of the study. Recent advancements in sleep medicine include ambulatory or home-monitoring PSGs that are cheaper and reduce the impact of the first night effect. A disadvantage of ambulatory or homemonitoring PSGs is that they can monitor fewer sleep parameters than laboratory studies. 8.22.4.2.2 Actigraphy A wrist actigraph is a movement-detecting device that is worn on the wrist. It provides a portable, longer-term means of assessing variables such as daily rest/activity, sleep±wake cycle, sleep latency, nocturnal arousals and awakenings, and total sleep time. The reliability and validity of actigraphs has been demonstrated in the assessment of sleep variables (Cole & Kripke, 1988) and in the assessment of sleep disorders (Sadeh, Alster, Urbach, & Lavie, 1989). Some actigraphs are equipped with light sensors to quantify the amount of light exposure a patient receives. Others are equipped with a behavioral response capacity to provide a continuous measure of reaction time performance for the assessment of daytime sleepiness. The primary use of actigraphy at present is in research settings. Clinical use of actigraphy is recommended primarily as an adjunct to diagnosis and to the assessment treatment compliance (ASDA, 1995b).

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8.22.4.2.4 Multiple sleep latency test The multiple sleep latency test (MSLT) is the most widely used objective assessment procedure of daytime sleepiness. It consists of a series of four or five nap opportunities given every two hours in the sleep laboratory. The patient lays in a darkened, sound-attenuated room for up to 20 minutes and is instructed to fall asleep. The average latency to sleep onset over all nap opportunities provides an index of sleep propensity. A smaller number reflects greater level of sleepiness. Average latencies of less than five minutes indicate excessive daytime sleepiness. The MSLT is less accurate for assessment of sleepiness in insomniacs because the inability to fall asleep is part of the presenting pathology and is likely to carry over to the nap opportunities. A related but different procedure is the wake maintenance test (WMT) which tests the ability to remain awake during soporific circumstances (Mitler, 1992). It is delivered in a manner similar to MSLT, with one important exception. The patient is seated and instructed to try to maintain wakefulness. It is used for assessment of degree of impairment and treatment efficacy in disorders of excessive day time somnolence. 8.22.5 TREATMENT OF SPECIFIC SLEEP DISORDERS The treatment of sleep disorders is enhanced when a multidisciplinary approach is adopted. Psychological, behavioral, and medical aspects of treatment all contribute to treatment efficacy. Psychology has a central role in the treatment of primary insomnia, insomnia complicated by psychiatric illness, circadian rhythm disorders, nocturnal panic, and substance-induced sleep disorders. Psychological components can also enhance compliance with treatment of sleep apnea and augment treatment of certain parasomnias (see Sections 8.22.5.4 and 8.22.5.5).

8.22.4.2.3 Sleep diaries

8.22.5.1 Circadian Rhythm Disorders

Daily sleep diaries are effective and inexpensive means of obtaining prospective information on sleep±wake behaviors. They are frequently used in the assessment of sleep disorders as well as in the assessment of treatment efficacy and compliance. When completed each morning, sleep diaries correlate highly with PSG variables (Carskadon et al., 1976). With time, patients become better at estimating their sleep behaviors, further increasing the validity of sleep diaries (Franklin, 1981).

Properly timed exposures to bright light (2500±10 000 lux) for a few days to a week is an effective treatment for circadian rhythm disorders that are associated with shift in the phase of the sleep rhythm (Terman, 1994). As a means of comparison, typical indoor room light is less than 500 lux; a few minutes after dawn, sunlight produces about 2500 lux; and, at noon, sunlight is about 100 000 lux. The direction of the shift depends on the timing of the exposure to light. A phase advance is achieved by light exposure in the morning, while a phase delay is

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achieved by light exposure in the evening. In addition to the proper timing of bright light, it is also important to have periods of darkness during which no bright light is allowed. Possible side effects of light therapy include eye irritation and headache. Light therapy should not be used in patients with retinopathies. Individuals with DSPS (Section 8.22.2.1) have no problem with further delaying their rhythm but find it impossible to fall asleep at an earlier time. This observation is the basis for chronotherapy. This consists of delaying bedtime by two to three hours a day until the desired bedtime is reached, usually within 10 days. Best results are obtained when this procedure follows a careful assessment of the factors that might reinforce very late bedtimes and thus reduce motivation for compliance. This assessment is particularly relevant when treating adolescents with a delayed sleep phase who might miss school days because they cannot wake up on time. The procedure is also enhanced when familial factors are taken into account and when close follow-up is in place. It is also possible to combine chronotherapy with a simulation of morning light and evening darkness to strengthen the circadian rhythm during the transition period. To prevent relapse, individuals must maintain a regular sleep schedule upon completion of chronotherapy. Bright light treatment is also effective for circadian rhythm disorders related to shift work. Bright light during night shift work was documented to increase the duration of daytime sleep and to improve alertness on the job. Other methods for enhancing alertness and performance among shift workers have been suggested. The optimal timing of work breaks, social activity during breaks, bright light and other sensory stimulation have the most potential for short-term alerting effects (Penn & Bootzin, 1990). Stress coping techniques, sleep hygiene information, and family counseling have the most potential for addressing the long-term effects of shift work (Penn & Bootzin, 1990). 8.22.5.2 Primary Insomnia The Diagnostic and statistical manual of mental disorders (4th ed.) (DSM-IV) defines primary insomnia as a disorder characterized by difficulty initiating or maintaining sleep, or by a complaint of nonrestorative sleep. A diagnosis of primary insomnia is given only when these symptoms satisfy each of the following three conditions: (i) they are not attributable solely to extrinsic factors or to other sleep or psychiatric disorder; (ii) they cause clinically significant negative daytime sequelae; and (iii) they have

lasted a month or longer. In other words, primary insomnia is defined as insomnia that is attributable primarily to internal mechanisms. Sedative hypnotics are the most common treatment for insomnia in general practice settings and in psychiatric clinics. Even though they are recommended only for short term use, hypnotic medications are frequently prescribed and used long after they have lost their efficacy. A number of effective behavioral interventions for insomnia have been designed and tested alone or in combination. These include stimuluscontrol instructions, sleep restriction, relaxation training, paradoxical intention, cognitive therapy, light therapy, and sleep hygiene education. McClusky, Milby, Switzer, Williams, and Woolens (1991) found that while benzodiazepine hypnotics were more immediately effective, behavioral therapy showed significant improvement within two weeks and proved to be superior to pharmacotherapy at a five-week follow-up. A combination cognitive-behavioral therapy with pharmacotherapy (triazolam) was recently found be superior to triazolam alone on a small sample of insomniacs (Milby et al., 1993). Physiological and psychological dependency complicate the treatment of insomnia in individuals who are chronic users of hypnotic medications. Preliminary results demonstrate that gradual taper in combination with cognitive behavioral components is a promising approach for treatment of insomnia patients with long term use of hypnotic medications (Kirmil-Gray, Eagleston, Thorensen, & Zarcone, 1985; Morin et al., 1994). The important elements of such an intervention include, a very gradual taper, ample support, preparation for rebound insomnia, and an early introduction of effective cognitive behavioral skills for improving sleep. 8.22.5.2.1 Stimulus-control instructions Stimulus-control instructions have become the gold standard of behavioral treatments for insomnia (Bootzin, Epstein, & Wood, 1991; Bootzin & Nicassio, 1978). The instructions are designed to strengthen the bed as a cue for sleep and weaken it as a cue for activities that are not consistent with sleep. Stimulus-control instructions are also designed to strengthen internal cues for sleep and to stabilize the sleep±wake rhythm. These are achieved by instructing patients (i) to go to bed only when tired, (ii) not to use the bedroom for any activity (excluding sexual) other than sleep, (iii) to leave the bed and bedroom when unable to fall asleep, (iv) to wake up at a regular time regardless of how well or how long they slept at night, and (v) to avoid taking naps. Patients do well when the rationale for each instruction is explained as

Treatment of Specific Sleep Disorders they are presented and when the patient's progress and/or difficulties are carefully monitored in daily sleep logs. The goal of the first rule is to help patients become more sensitive to internal cues of sleepiness, and to increase the likelihood that they will fall asleep quickly. The second rule is designed to remove activities that are associated with arousal away from the bedroom. Reflection on the day's activities should be done in a place other than the bedroom. In addition, although good sleepers often read or watch television in bed with no ill effects, this is not the case with insomniacs. This rule is designed to help break maladaptive bedtime routines and replace them by routines that are less likely to interfere with sleep. The third rule is intended to disassociate the bed from frustration about not being able to fall asleep. By using the time out of bed to engage in pleasant relaxing activities, a patient may get a sense of increased control, rather than being a victim to frustration. As a result, the problem becomes more manageable and less distressing, thus breaking the cycle of sleeplessness and frustration. Keeping consistent wake times serves two roles. In the short run it is likely to produce some sleep deprivation that will facilitate sleep onset the following night, thus strengthening the association between the bed and sleep. In the long run, consistent wake times affect the biological clock regulating sleep and wakefulness and help develop a more stable sleep rhythm. The goal of the last rule is to prevent irregular napping that might destabilize the sleep rhythm. A short (less than one hour) nap that takes place daily at around the same time is permissible. Research has shown the stimulus control procedure to be effective both for sleep onset insomnia (e.g., Bootzin, 1984) and for sleep maintenance insomnia (Morin & Azrin, 1987). Improvements in sleep usually begin after a week or two of following stimulus control instructions. Compliance issues need to be carefully examined and addressed for this method to work. For example, some patients become anxious about following these instructions properly and become worried about when to leave the bedroom, and when to return to bed. These patients typically do well when the main ideas behind the intervention are clearly outlined and they have an opportunity to modify the instructions, while staying within the conceptual goals of the instructions. 8.22.5.2.2 Bright light Encouraging results have been reported for the use of bright light with insomniacs. These positive results have been taken as evidence

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that some forms of insomnia are in fact related to small shifts in the phase of the sleep wake rhythm. Morning light has been found to reduce sleep onset latency in sleep onset insomnia (Lack, Wright, & Paynter, 1995). Evening light has been found to delay wake-up time, increase total sleep (Lack & Wright, 1993), and increase sleep efficiency (Campbell, Dawson, & Anderson, 1993) in sleep maintenance insomniacs.

8.22.5.2.3 Relaxation Progressive muscle relaxation training was found to be effective for sleep onset difficulties both for patients with primary insomnia and for patients with sleep-state misperception (Van Oot, Lane, & Borkovec, 1984). This and other relaxation procedures are believed to exert their therapeutic effect by reducing arousal at bedtime. Using meta-analytic techniques, Morin et al. (1994) concluded that cognitive relaxation methods are slightly superior to those targeting physiological arousal.

8.22.5.2.4 Paradoxical intention Paradoxical intention for insomnia instructs the patient to stay awake as long as possible. The instruction is intended to reduce anticipatory anxiety at bedtime (Ascher & Turner, 1980). Some controlled studies found paradoxical intention to be effective for sleep onset insomnia (e.g., Ascher & Turner, 1979; Espie, 1989) and others have not (Lacks, Bertelson, Gans, & Kunkel, 1983; Turner & Ascher, 1982). It has been suggested that symptom prescription, that is, instructing the patient to stay awake, might increase a sense of voluntary control over sleep (Bateson, Jaclson, Haley, & Weakland, 1950), because if one successfully follows the paradoxical intention, one will gain control over sleep by ªnot sleeping.º This will subsequently generalize to a sense of control in the other direction, that is, ªsleeping.º Shoham, Bootzin, Rohrbaugh, and Urry (1995) found that a voice indicator of defiance predicted success with paradoxical intention for sleep.

8.22.5.2.5 Sleep restriction Sleep restriction (Spielman, Saskin, & Thorpy, 1987) is most commonly used for treating insomnia in older adults with poor sleep efficiencies (Hoelscher & Edinger, 1988). Patients are instructed to restrict the time in bed to their estimated total sleep time. Since patients

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tend to underestimate total sleep time, they experience partial sleep deprivation. This initial sleep deprivation helps consolidate sleep and increase sleep efficiency. Patients are then instructed to gradually increase time spent in bed as long as sleep efficiency remains high. With time, increased sense of control and selfefficacy leads to more gains.

8.22.5.2.6 Cognitive components Cognitive components typically target a patient's expectations and attribution styles and are designed to increase a sense of selfefficacy. It is usually used in combination with one or more of the behavioral interventions reviewed above. The basic elements of cognitive treatments of insomnia include setting realistic expectations, decatastrophizing the consequences of a bad night, highlighting small gains, examining and changing maladaptive coping styles, and shifting the patient away from attributions that are inconsistent with good sleep. The efficacy of cognitive-behavioral treatments of insomnia was recently summarized in two meta-analyses. Both analyses concluded that nonpharmacological interventions for insomnia produce reliable and durable clinical benefits that include reduction in latency to sleep onset and increase in total sleep time (Morin et al., 1994; Murtagh & Greenwood, 1995). For example, patients with sleep onset difficulties were better off after treatment than 81% of untreated controls and patients with sleep maintenance problems were better off after treatment than 74% of untreated controls (Morin et al., 1994). The improvements were not only statistically significant but also clinically significant. For example, both studies report that average time to sleep onset was reduced from approximately 60 minutes at baseline to approximately 35 minutes post-treatment. The two studies, however, did not come to the same conclusions regarding the relative efficacy of different nonpharmacological interventions. Morin and his colleagues found stimulus control and sleep restriction to be the two most effective interventions, whereas Murtagh and Greenwood found no differential efficacy when comparing nonpharmacological interventions to each other. The primary reason for this discrepancy is that the authors used different criteria for what studies qualified for inclusion. Although there was a considerable overlap in studies included, there were differences as well. A secondary reason for the discrepancy is that the authors of the two meta-analyses performed somewhat different analyses.

8.22.5.3 Treatment of Childhood Sleep Difficulties The treatments of sleep difficulties during childhood are based on the same basic principles as the treatment of adults, but they need to take into account developmental factors. Behavioral interventions for infant sleep difficulties are based on extinction and stimulus control principles. An important component of treatment is helping parents teach their children to fall asleep on their own so that the presence of the parent does not become a necessary distinguishing stimulus for sleep onset. The treatment typically involves establishing a consistent and relaxing bedtime and discontinuing the active involvement of the caretaker in soothing the child. Discontinuation of parental presence in the room can be accomplished abruptly, or by gradually reducing the length of the time interval in which the caretaker is in the room. Both methods are effective but the abrupt method is more difficult for parents to follow (Ferber, 1985). Efficacy of these treatments is high. An equally effective and more gentle approach is based on the premise that separation anxiety is more central to the problem of sleep initiation than inadequate cues. This method involves temporary ªco-sleeping.º That is, the parent might sleep in the child's bedroom each night for about a week without having any other interaction with the child during the night and gradually decrease his or her presence in the child's bedroom with time (Sadeh, 1994). During childhood, sleep onset difficulties could be manifested as bedtime struggle related to parent±child conflict, fear of the dark, or difficulties settling down. Specific interventions for each of these manifestations need to be applied. Behaviors associated with bedtime struggle can be treated using positive reinforcement or paradoxical intentions, but when the parent±child conflict is present beyond the bedtime period, the treatment needs to focus on the most prominent oppositional domain. In these cases, the resolution of conflict in the most prominent domain commonly leads to improvement in the bedtime difficulty as well (Cashman & McCann, 1988). Fear of the dark can be handled using cognitive rehearsal of appropriate bedtime behavior during the day, followed by reinforcement of appropriate bedtime behavior the following morning (Cashman & McCann, 1988). Self-statements, self-assessment, and self-reinforcement form an effective treatment for night-time fears of older children (Graziano, Mooney, Huber, & Ignasiak, 1979). Children's difficulties settling down can be treated using the same principles that are effective in adults. Stimulus control instructions

Treatment of Specific Sleep Disorders and relaxation procedures modified to suit the child's development (Oaklander, 1981) are most appropriate. 8.22.5.4 Parasomnias This group of sleep disorders is characterized by unusual sleep-related behaviors that are often of great concern to the patient and family members. Some parasomnias, such as sleep walking, night terrors, and sleep talking, are disorders of partial arousal from slow wave sleep and are most common during childhood. This set of parasomnias is considered normal in the very young, in whom slow wave sleep is abundant, and pathological when persisting into adulthood. Other parasomnias occur during REM sleep. The parasomnias require careful differential diagnoses. For example, night terrors, like nightmares and nocturnal panic, are episodes of intense fear associated with a frightening experience. Night terrors can be differentiated from nightmares in several ways. First, night terrors are associated with a fearful situation but lack the elaborate storylike cognition typical of nightmares. Second, nightmares arise during REM sleep and typically occur in the latter half of the sleep period whereas night terrors occur mostly in the first half. Finally, unlike nightmares, night terrors are associated with disorientation and amnesia for the event upon awakening. It is more difficult to differentiate night terrors from nocturnal panic. Both are associated with increased physiological arousal and a feeling of panic. Night terrors, however, usually begin with a loud scream. Another difficult diagnostic issue is the differential diagnosis between sleep walking (somnambulism) and REM behavior disorders (RBD). Both involve unusual sleep behaviors. However, sleep walking occurs early in the night, as a partial arousal from slow wave sleep, and is not associated with enacting thoughts, whereas REM behavior disorders occur during REM sleep and the sleeper reports acting out a dream. The pathology of RBD involves intermittent loss of muscle atonia during REM sleep. These episodes often involve aggression or violence, placing the patient and bed partner at risk of injury. RBD is most prevalent among elderly males and may involve a familial component (ASDA, 1990), whereas sleep walking is more common in childhood. Both disorders need to be differentiated from nocturnal epileptic seizures that are often associated with unusual motor behavior during sleep. The movements associated with sleeprelated seizures may be characterized by unilateral twitching or jerking of the face, arm or

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leg, or appear as nonpurposeful, automatic behaviors such as fidgeting of the hands or lip smacking. A referral to a neurologist can assist in the differential diagnosis between a seizure disorder and RBD. When the unusual sleep behavior is frequent, an all night sleep study might provide a definitive answer because nocturnal seizures are most likely to occur during non-REM sleep and are identifiable in the EEG by well defined ªspike-and-waveº patterns (ASDA, 1990). There are multiple approaches to the treatment of parasomnias that can be combined and individually tailored. Prescription of benzodiazepines is the most common treatment for both REM and non-REM parasomnias (Keefauver & Guilleminault, 1994; Mahowald & Schenck, 1994). Although long-term nightly use of benzodiazepines is not recommended, pharmacotherapy is important when dangerous behaviors are involved and when there is a change in the sleep environment so that the parasomnia might be more dangerous or embarrassing. Injuries related to odd sleep behaviors can be prevented by making the sleep environment safe (e.g., covering glass windows, locking doors and windows, and placing an alarm on the bedroom door). The stress diathesis theory of parasomnia (Moldofsky, Gilbert, Lue, & MacLean, 1995) postulates that the disorder arises as an interaction between a predisposing ªgenetic or constitutional factor,º indicated by childhood onset parasomnia or a family history of parasomnia, and a percipitating triggering event such as psychological distress, unusual sleep schedule, or substance abuse. This theory suggests that relaxation and stress management techniques could be used to reduce the frequency of the events. Hypnosis has been reported efficacious for night terror and sleep walking (Reid, Ahmed, & Levie, 1981). Interventions designed to consolidate and lengthen sleep are important in the treatment of parasomnias because both sleep fragmentation and sleep deprivation exacerbate these disorders (Guilleminaul, Moscovitch, & Leger, 1995). Because sleepers might be confused when awakened, it is best not to arouse an individual from these episodes. Instead, the patient can be gently led back to bed. Treatment of nocturnal enuresis, a parasomnia most common during childhood, includes psychological and pharmacological approaches. A recent review of the outcome literature concluded that: (i) the use of a ªurine alarmº was the most effective method of treatment, (ii) psychological treatment was more effective than pharmacological treatment, and (iii) overall, some form of treatment was better than no treatment (Houts, Berman, & Abramson, 1994).

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Preliminary results indicate that chronic nightmares, considered a parasomnia in the sleep disorders nosology, can be treated with a cognitive-behavioral technique called imagery rehearsal (Krakow, Kellner, Rathak, & Lambert, 1995). The patient is instructed to recall the nightmare in detail, change its content so it is no longer frightening, and visualize the new set of images. 8.22.5.5 Sleep Apnea Continuous positive airway pressure (CPAP) is the most common treatment for sleep apnea. The patient wears a nasal mask that provides air pressure to the upper airways at a level that is individually adjusted. Oxygenation is indicated in some cases. Other treatment approaches for obstructive sleep apnea include surgery, dental appliances, and medications that stimulate breathing. Many of the complex issues associated with the treatment of sleep apnea remain beyond the scope of this chapter and the reader is referred to Berry (1995) for a comprehensive review. Instead, we highlight the potential role of psychology. A common problem with CPAP therapy is a fear reaction to the mask. Although effective treatment of simple phobias exist, we know little about their efficacy in treating the claustrophobic reaction to CPAP in adults. Gradual exposure has been successfully used to help children adjust to the CPAP mask (Rains, 1995). A simple learning-based approach is appropriate when sleep apnea occurs predominantly in a particular sleeping position. It involves structuring the sleep environment so that the undesirable position is avoided. For example, sewing tennis balls to the back of the nightgown can gradually teach the sleeper to avoid the supine position that is most commonly associated with apnea. Weight loss is also relevant in the treatment of sleep apnea, when obesity contributes to the presentation. In a recent review Strobel and Rosen (1996) concluded that all but one of the weight loss studies reviewed demonstrated positive treatment effects. The target symptoms that have improved with weight loss included sleep disordered breathing, sleep quality, cardiovascular and pulmonary functions, and alertness and performance. 8.22.5.6 Restless Leg Syndrome and Periodic Limb Movements The treatment of PLM disorder and RLS is typically pharmacological (see review by Montplaisir et al., 1994). Opioids and benzodiazepines, in particular clonazepam, are effective in reducing arousals associated with PLM,

thus reducing sleep fragmentation and improving sleep quality (Walters et al., 1993). The results concerning clonazepam in treating RLS are less conclusive. Dopaminergic drugs such as L-dopa are effective at reducing the occurrence of PLMs (Kaplan, Allen, Buchholz, & Walters, 1993). Vibratory stimulation is a nonpharmacological treatment of PLMs and RLS that includes 30 minutes of vibratory stimulation to the dorsoflexors of the feet and toes before bedtime. Vibratory stimulation significantly reduces the number of leg movements during sleep (Kovacevic-Ristanovic, Cartwright, & Lloyd, 1991), but is less effective than clonazepam at relieving symptoms of RLS (Montagna, Sassoli de Bianchi, Zucconi, Cirignotta, & Lugaresi, 1984). 8.22.5.7 Narcolepsy Narcolepsy is a neurological disorder of unknown origin that involves a pathology of REM sleep mechanisms. The primary daytime symptom of the disorder is irresistible bouts of sleep or ªsleep attacksº that recur every 2±3 hours. Narcolepsy may be distinguished from other causes of excessive daytime sleepiness by a unique constellation of features which include sleep onset REM periods, cataplexy, and hypnogogic hallucinations. ªSleep paralysis,º a waking state associated with an inability to move, may also occur at sleep onset or at sleep termination. The diagnosis of narcolepsy needs to be confirmed by nocturnal polysomnograph, followed by daytime MSLT. These procedures document both level of sleepiness and presence of a REM episode close to sleep onset. Although the sleep of a narcolepsy patient may be fragmented with frequent awakenings and increased time in stage one, daytime sleepiness is a feature of the disorder and not a consequence of nocturnal sleep fragmentation (Lamphere et al., 1989). The treatment of narcolepsy includes stimulant medications for sleepiness and noradrenergic reuptake blockers for cataplexy, sleep paralysis, and hypnogogic hallucination. Treatment also includes behavioral management. The clinician and the patient are often faced with the challenge of achieving a careful balance between optimal alertness and increased irritability and other peripheral and central side effects of amphetamines. This is particularly relevant when tolerance levels increase and higher doses of medication are needed. An important behavioral treatment component is the prescription for strategically timed short naps. Recommended nap duration is 15±20 minutes with at least three repeated naps because the

Interactions with Other Disorders refractory sleep period after a nap lasts only 90±120 minutes (Guilleminault, 1994). In addition, the large majority of narcoleptic patients are interested in psychotherapy and support groups (Garma & Marchand, 1994) to help them cope with the effects of the disorder on their social and family relationships and other aspects of life. 8.22.6 INTERACTIONS WITH OTHER DISORDERS Many medical and psychiatric disorders are associated with disturbed sleep. Far from being comprehensive, the discussion below focuses on conditions that are likely to be most relevant to clinical psychologists. 8.22.6.1 Alzheimer's Disease There are striking sleep changes in persons with dementia, including frequent nocturnal awakenings and decreased REM sleep. These changes parallel but exceed in magnitude the changes of ªnormal agingº (Prinz et al., 1982). Loss of slow wave sleep and an increase in the amount and frequency of night time wakefulness have been reported at early stages of Alzheimer's disease with significant amounts of daytime sleep emerging with advanced severity (Vitiello, Bliwise, & Prinz, 1992). Controversy exists regarding whether there is a decrease in REM sleep (Bliwise, 1993). The aspect of sleep disturbance most likely to be brought to the attention of the clinician is what has been called sundowning. This describes late afternoon or early evening exacerbation of behavioral disruption and agitation. Sundowning is a complex and poorly defined syndrome. Several treatment approaches have been suggested (Bliwise, 1993). Pharmacological treatments have not been promising since hypnotics have minimal effect and neuroleptics have strong risks for side-effects in older persons. Behavioral treatments include regularly scheduled activities both in the day and during the usual night time awakenings, exposure to bright outdoor light, bright light therapy, and sleep restriction (Bliwise, 1993; Okawa et al., 1991; Satlin, Volicer, Ross, Herz, & Campbell, 1992). 8.22.6.2 Chronic Pain Disorders Chronic pain is a common cause of sleep complaints. In a recent Gallop poll, 53% of all adults surveyed reported they experienced night time pain in the last year and 60% of these night time pain sufferers stated it disturbed their sleep (National Sleep Foundation, 1995b).

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Rheumatological disorders such as osteoarthritis, a degenerative joint disease, are a common cause of insomnia. During the day the joints are kept mobile which helps to maintain flexibility and reduce pain. These joints become stiff at night and sleep may be disturbed by sudden pain when the individual moves or attempts to turn over in bed. Adequate dosage of anti-arthritic medication before bedtime can greatly alleviate the problem. Fibromyalgia is a chronic pain syndrome in which the primary symptom is deep muscle tenderness in the neck and shoulders, forearms, small of the back, and/or the thighs. Along with muscle tenderness, fibromyalgic patients also complain of morning aching, poor appetite, chronic fatigue, sleep disturbance, and nonrestorative sleep. Polysomnographic sleep studies indicate that 60±70% of fibromyalgic patients exhibit alpha-sleep patterns (Moldofsky, Scarisbrick, England, & Smyth, 1975; Russell & Campos, 1986) in which an alpha EEG frequency wave occurs simultaneously with slower EEG waves. Alpha sleep is often found in patients who complain of nonrestorative sleep. It has been proposed that alpha sleep may cause the musculoskeletal symptoms of fibromyalgia (Moldofsky & Scarisbrick, 1976) and that it may be involved more generally in disorders that affect the immune system. Other chronic pain conditions that may precipitate complaints of insomnia include burning foot pain from diabetes and chest and epigastric pain due to angina, reflux esophagitis, or peptic ulcer disease. Cancer patients often exhibit more severely disturbed sleep patterns than either healthy people or other patients with medical conditions. 8.22.6.3 Acquired Immune Deficiency Disorder Approximately one-third of asymptomatic HIV-seropositive individuals report sleep onset or maintenance difficulties (Rothenberg, Zozula, Funesti, & McAuliffe, 1990). Polysomnographic studies indicate increased sleep fragmentation, increased amounts of slow wave sleep, slow wave sleep distributed throughout the night, and an alpha-sleep pattern (Norman, Demirozu, & Chediak, 1990; Norman et al., 1989). Abnormal sleep architecture was evident at a one year follow-up (Norman, Chediak, Kiel, Gazeroglu, & Mendez, 1990). 8.22.6.4 Psychiatric Disorders Sleep is both affected by and affects psychopathology. The complex interaction between sleep and psychopathology is most evident in affective and anxiety disorders. Epidemiological

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data suggest that the incidence of psychiatric disorders in patients complaining of insomnia may be underdiagnosed (Walsh, Moss, & Sugarman, 1994). About 21% of persons reporting serious insomnia met the DSM-III criteria for major depression (Mellinger, Balter, & Uhlenhuth, 1985) and up to 57% suffered from some mental disorder or developed one within one year (Ford & Kramerow, 1989). The high prevalence of psychiatric comorbidity in insomniacs poses a challenge to mental health providers and sleep clinicians alike. Should one treat the psychopathology first and then treat residual sleep symptoms, or should one target the sleep difficulties without waiting to see if treatment of the comorbid psychiatric condition resolves the sleep problem? A recent report on the patterns of symptomatic recovery in psychotherapy indicates that sleep complaints do not change as the result of general psychotherapy (Kopta et al., 1994) and implies that to change sleep complaints, they need to be specifically targeted. 8.22.6.4.1 Mood disorders Sleep onset and sleep maintenance difficulties, as well as early morning awakening, are commonly experienced by patients with major depression. About 90% of depressed patients have some abnormality in their sleep that is most pronounced in endogenous, rather than reactive, depression (Neylan, 1995). The main alteration in sleep architecture of depressed patients is a decrease in latency to first REM episode and increase in REM sleep in the beginning of the night (Kupfer & Reynolds, 1992). It has been suggested that both the increase in REM sleep earlier in the night and the presence of early morning awakenings result from an advance in the sleep±wake rhythm (Schulz & Lund, 1985). A reduction in slow wave sleep is another sleep abnormality associated with depression and it is more pronounced in men than in women (Reynolds et al., 1990). However, these alterations in EEG sleep parameters are not unique to affective disorders (Gillin et al., 1990; Mendelson et al., 1987). Daytime sleepiness and hypersomnolence may also be associated features of depression. Reynolds and Shipley (1985) estimated that 15±20% of depressed patients suffer from hypersomnia rather than insomnia. In these cases, however, the diagnosis was often cyclothymia or bipolar depression. Individuals with major depression tend to spend a greater amount of time in bed, a fact that might contribute to report of daytime somnolence more than any actual increase in the amount of time spent sleeping.

Sleep abnormalities of patients with bipolar disorder are similar to those found in patients with major depression. In addition, for these patients, a manic episode is typically associated with short sleep durations, long sleep latencies, and decreased slow wave sleep (ASDA, 1990). In contrast, the sleep of patients with dysthymia is comparable to normal controls (Arriaga, Rosado, & Paiva, 1990). 8.22.6.4.2 Anxiety disorders Although anxiety can be an important etiological factor in insomnia, the proportion of self-reported insomniacs meeting diagnostic criteria (DSM-III) for anxiety disorders is only about 15% (Tan, Kales, Kales, Soldatos, & Bixler, 1984). Nevertheless, insomniacs frequently (50%) obtain high scores on anxiety scales (Mellinger et al., 1985) and there is a high prevalence (70%) of insomnia among patients with generalized anxiety disorder (Hoehn-Saric & McLeod, 1990). Both patients with generalized anxiety disorders and patients with obsessive-compulsive disorder experience difficulties initiating or maintaining sleep and frequent nocturnal awakenings. Alterations in sleep architecture of both groups of patients include reduction of slow wave sleep and a shortening of latency to the first REM period (Insel et al., 1982; Reynolds, Shaw, Newton, Coble, & Kurfer, 1983). Sleep onset difficulties of patients with obsessive-compulsive disorder are often related to obsessive or compulsive behaviors that focus on sleep, such as checking rituals (Insel et al., 1982). Recurrent disturbing nightmares are considered to be an integral part of post-traumatic stress disorder (PTSD). A closer look at sleep related symptomatology in PTSD reveals that the disorder is associated with a greater number of arousals and awakenings compared with normals and with combat veterans without PTSD (Mellman, Kulick-Bell, Ashlock, & Nolan, 1995). Recurrent awakening in PTSD patients is associated not only with disturbing dreams but, equally as frequent, with startles or panic features (Mellman et al., 1995) and, less frequently, with thrashing movements during sleep. These symptomatic awakenings tend to be associated with REM sleep. In addition to increased number of awakenings, patients with PTSD spend a longer time awake and have lower sleep efficiencies than controls (e.g., Ross, Ball, Sullivan, & Caroff, 1989). About 30±45% of patients with panic disorder report repeated nocturnal panic episodes (Mellman & Uhde, 1990). Nocturnal panic attacks commonly arise out of non-REM sleep stage two and early stage three (Mellman

References & Uhde, 1989). They can also arise from stage one sleep during transition to sleep onset (Hauri, Friedman, & Ravaris, 1989). Patients with predominantly nocturnal panic have relatively little social or occupational disability and exhibit few phobic features (Mellman & Uhde, 1990). 8.22.7

PROFESSIONAL ISSUES

The assessment and treatment of sleep disorders is not the exclusive provinence of any one discipline. Consequently, sleep disorder centers are multidisciplinary and may include professionals from respiratory medicine, neurology, pediatrics, psychiatry, and nursing, in addition to clinical psychology. There are important roles to be played by all professionals and the field of sleep disorders is characterized by a mutual respect of the contributions of other disciplines. The major professional sleep organizations, such as the American Sleep Disorders Association, the Sleep Research Society, and the World Federation of Sleep Research Societies, are all multidisciplinary. In the USA, the American Board of Sleep Medicine certifies clinical psychologists who wish to become Board Certified Sleep Specialists. To be eligible to take the Board examinations, a psychologist, as well as any other individual holding a doctoral degree in a health-related field, needs to have acquired sufficient experience in sleep medicine under the supervision of a diplomate of the American Board of Sleep Medicine, working in a Sleep Disorder Center. Eligibility requirements also include sufficient experience in interpreting polysomnograms. As a practical matter, clinical psychologists dealing with sleep disorders must be prepared to consult with and refer to other professionals, when necessary. For example, the treatment of insomnia may require having the patient gradually withdraw from hypnotics while cognitive-behavioral interventions are being implemented. The consent and supervision provided by the prescribing physician are important to the treatment of the patient as well as to the relationship of the psychologist with the medical community. It is often necessary to consult with the patient's physician during both the assessment and treatment of the sleep problem regarding physical disorders and medications that might contribute to the presenting sleep disturbance. 8.22.8 CONCLUSION This chapter is not, nor could it be, a comprehensive review of the fast growing field of clinical sleep research. In writing this chapter

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References Robinson, R. W., & Zwillich, C. W. (1994). Drugs and sleep respiration. In M. H. Kryger, T. Roth, & W. C. Dement (Eds.), Principles and practices of sleep medicine (pp. 603±620). Philadelphia: Saunders. Roehrs, T., Zorick, F., Wittig, R., Conway, W., & Roth, T. (1989). Predictors of objective level of daytime sleepiness in patients with sleep-related breathing disorders. Chest, 95, 1202±1206. Ross, R. J., Ball, W. A., Sullivan, K. A., & Caroff, S. N. (1989). Sleep disturbance as the hallmark of posttraumatic stress disorder. American Journal of Psychiatry, 146, 679±707. Rothenberg, S., Zozula, R., Funesti, J., & McAuliffe, V. (1990). Sleep habits in asymptomatic HIV-seropositive individuals. Sleep Research, 19, 342. Sadeh, A. (1994). Assessment of intervention for infant night waking: parental reports and activity-based home monitoring. Journal of Consulting and Clinical Psychology, 62, 63±68. Sadeh, A., Alster, J., Urbach, D., & Lavie, P. (1989). Actigraphically based automatic bedtime sleep±wake scoring: Validity and clinical applications. Journal of Ambulatory Monitoring, 2, 209±216. Sanchez, R., & Bootzin, R. R. (1985). A comparison of white noise and music: Effects of predictable and unpredictable sounds on sleep. Sleep Research, 14, 121. Satinoff, E. (1988). Thermal influences on REM sleep. In R. Lydic, & J. Biebuyck (Eds.), Clinical physiology of sleep (pp. 135±144). Bethesda, MD: American Psychological Society. Satlin, A., Volicer, L., Ross, V., Herz, L., & Campbell, S. (1992). Bright light treatment of behavioral and sleep disturbances in patients with Alzheimer's Disease. American Journal of Psychiatry, 149, 1028±1032. Schulz, H., & Lund, R. (1985). On the origin of early REM episodes in the sleep of depressed patients: A comparison of three hypotheses. Psychiatry Research, 16, 65±77. Shoham, V., Bootzin, R. R., Rohrbaugh, M., & Urry, H. (1995). Paradoxical versus relaxation treatment for insomnia: The moderating role of reactance. Sleep Research, 24A, 365. Silva, J. A. C. E., Chase, M., Sartorius N., & Roth, T. (1996). Special report from a symposium held by the World Health Organization and the World Federation of Sleep Research Societies: An overview of insomnias and related disordersÐrecognition, epidemiology, and rational management. Sleep 19, 412±416. Spielman, A. J., Saskin, P., & Thorpy, M. J. (1987). Treatment of chronic insomnia by restriction of time in bed. Sleep, 10, 45±56. Stepanski, E., Zorick, F., Roehrs, T., Young, D., & Roth, T. (1988). Daytime alertness in patients with chronic

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.23 Headache PAUL R. MARTIN University of New England, Armidale, NSW, Australia 8.23.1 INTRODUCTION

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8.23.2 DEFINITION, SYMPTOMS, AND CLASSIFICATION

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8.23.3 FUNCTIONAL MODEL, RISK FACTORS, AND ETIOLOGY

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8.23.3.1 The Functional Model of Headaches 8.23.3.2 Risk Factors for Developing a Headache Disorder 8.23.3.2.1 Predisposing antecedents 8.23.3.2.2 Onset antecedents 8.23.3.2.3 Setting antecedents 8.23.3.2.4 Summary of risk factors 8.23.3.3 Etiology of Headaches 8.23.3.3.1 Immediate antecedents 8.23.3.3.2 Psychophysiological mechanisms 8.23.3.3.3 Immediate reactions of sufferers and significant others 8.23.3.3.4 Summary of etiological factors

532 535 535 536 536 537 537 537 537 538 539

8.23.4 IMPACT OF HEADACHES ON PERSON, FAMILY, AND SOCIETY 8.23.4.1 Impact of Headaches on Individual and Family Functioning 8.23.4.2 Impact of Headaches on Society

539 539 540

8.23.5 EPIDEMIOLOGY, LIFE SPAN, GENDER, AND CULTURAL ISSUES

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8.23.6 MEDICAL DIAGNOSIS, TESTS, AND TREATMENT

542 542 542

8.23.6.1 Medical Assessment 8.23.6.2 Medical Management 8.23.7 PSYCHOLOGICAL ASSESSMENT AND TREATMENT 8.23.7.1 Psychological Assessment 8.23.7.2 Psychological Treatment 8.23.7.2.1 Biofeedback training 8.23.7.2.2 Relaxation training and cognitive coping training 8.23.7.2.3 Group therapy 8.23.7.2.4 Side effects of treatment 8.23.7.2.5 Summary of treatment findings 8.23.8 MINIMAL INTERVENTIONS AND PREVENTION

543 543 544 544 546 546 547 547 547 548 548

8.23.8.1 Minimal Interventions 8.23.8.2 Prevention 8.23.9 ADHERENCE AND PROGNOSIS

549 549 549

8.23.9.1 Adherence 8.23.9.2 Prognosis 8.23.10 PROFESSIONAL ISSUES

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8.23.11 REFERENCES

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Headache

8.23.1 INTRODUCTION Headache roameth over the desert, blowing like the wind, Flashing like lightning, it is loosed above and below: It cutteth off like a reed him who feareth not his god . . . This man it hath struck and Like one with heart disease he staggereth, Like one bereft of reason he is broken.

Writings on headaches go back at least 6000 years. The above quote is from a Mesopotamian poem dating from 4000 to 3000 BC (Friedman, 1972). Descriptions of headaches have been found on the Ebers Papyrus which was transcribed around 1550 BC from earlier sources dating back as far as 3700 BC. It was not until Ancient Greece, however, that Hypocrates distinguished different types of headaches and described several of the well-known features of migraine. One of the earliest classification systems of headaches was developed by the Byzantine, Alexander Trallianus (AD 525±605), and subdivided headaches into three groups according to an ascending scale of severityÐ cephalalgia, cephalea, and hemicrania (Riley, 1932), which is an interesting historical footnote given that some modern writers have proposed severity models to replace taxonomies listing migraine and tension-type headache as distinct entities (Bakal & Kaganov, 1979). The earliest description of headache trigger factors has been attributed to Cornelius Celsus (75 BC to AD 50) who listed drinking wine, ªcrudityº (i.e., dyspepsia), cold, heat of a fire, and the sun. Thomas Willis added other factors to this list in the seventeenth century including sexual activity, overeating, oversleeping, and hunger. Emotional factors did not appear in these lists, however, until Simone-Andre Tissot in the eighteenth century (Diamond & Maliszewski, 1992). Early theories of headaches reflected the prevailing illness models of their time. In many cultures, headaches were viewed as a curse from the gods or a consequence of possession by evil spirits. The Ancient Egyptians, for example, wrote of Tiu, the evil spirit of headache (Diamond & Maliszewski, 1992). When humoral theories had currency in medicine, headaches were conceptualized as arising from an excess of body fluid or humor entering through the gastrointestinal system and irritating the brain. The vomiting of migraine was attributed to an excess of yellow bile (Rose, 1995). Modern theories of headaches, such as the neurogenic and vascular theories, have their origins in the work of physicians from the

seventeenth century onwards. Willis wrote a lecture in 1672 suggesting that the source of pain was not in the brain but rather the nerve fibers being pulled by the distended vessels (Cady & Everett, 1995). It was Harold Wolff and colleagues in the 1930s, however, who developed the vascular theory by arguing for an initial preheadache phase of intracranial vasoconstriction followed by extracranial vasodilatation occurring during the attack (Wolff, 1963). The vascular theory was challenged as early as 1873 by Edward Liveing who argued that migraine resulted from a brain seizure or ªnervous storm.º The suggestion that the origin of headaches was within the central nervous system was the basis for the neurogenic theory of migraine (Cady & Everett, 1995). Theories of headaches have, of course, given rise to their own treatment modalities. Perhaps the earliest treatment for headaches was trepanning, in which demons were released from the head by cutting holes in the skull. Offerings to the gods, magic symbols, and incantations were part of the therapeutic armentarium. Remedies such as wearing a hangman's noose around the head, or moss scraped off the head of a statue on a red string tied around the neck, were offered (Cady & Everett, 1995). Humoral theories gave rise to treatments such as the letting of blood, application of leaches, and purging. Galen was an advocate of ªcounteriritation,º suggesting the application of a live electric fish known as a torpedo to the forehead (Diamond & Maliszewski, 1992). Pharmacological approaches to headaches have a very long history with their roots in the extraordinary concoctions suggested by early healers such as a ninth century English headache tonic consisting of elderberry juice, cow's brain, vinegar, and goat-dung (Cady & Everett, 1995). A significant step forward occurred toward the end of the nineteenth century with the introduction of ergot and ergot derivatives in the treatment of migraine, which constrict distended arteries. The history of psychological approaches is much shorter, although writers as early as Plato advocated comprehensive treatment of the whole person including their soul; and physicians such as William Gowers emphasized the importance of lifestyle modification in the late nineteenth century. Research on psychological treatment of headaches really began in the 1970s, however, stimulated by the evolving biofeedback literature (Martin, 1993). Following Neil Miller's ground-breaking work on learned control of autonomic functioning, researchers saw the potential of biofeedback for training headache sufferers to control physiological pain mechanisms.

Definition, Symptoms, and Classification 8.23.2 DEFINITION, SYMPTOMS, AND CLASSIFICATION Dictionaries usually define headaches as pain in the head and go on to define pain as suffering, anguish, or distress. More technical definitions refine the above by using phrases such as ªpain located above the orbitomeatal lineº (Headache Classification Committee of the International Headache Society, 1988). The pain of headache however, varies qualitatively, as it may, for example, be experienced as throbbing, pulsating, or a steady ache; and quantitatively, as indexed by measures of frequency, intensity, and duration. Headaches are often preceded, accompanied, or followed by other ªsymptomsº including visual auras, nausea, vomiting, photophobia, phonophobia, tinnitus, and vertigo. A consistent assumption of the medical literature is that these pain characteristics and symptoms can be grouped into syndromes and that different syndromes have different physiological mechanisms. A further assumption is that the syndromes can be organized hierarchically into the categories and subcategories of a taxonomy. The previous section briefly mentioned some early attempts at classifying headache, but the system that dominated the field until recently was formulated by a committee of six eminent neurologists in 1962 (Ad Hoc Committee, 1962). This group divided headaches into 15 major categories of which the first two were ªvascular headaches of the migraine typeº and ªmuscle-contraction headache.º These two types occurring on their own or in combination were believed to account for over 90% of all headaches. The Ad Hoc Committee system merely provided brief descriptions of the various headache syndromes and was criticized on both conceptual and empirical grounds (e.g., Martin, 1985). In 1985, the International Headache Society (IHS) set up a committee to develop a new classification system which was published three years later (Headache Classification Committee of the IHS, 1988). The IHS system divides headaches into 13 major categories, the first four of which are considered as primary headache: ªmigraine,º ªtension-type headache,º ªcluster headache,º and ªmiscellaneous headaches unassociated with structural lesions.º The remaining nine categories are considered as secondary headaches and include headaches developing for the first time in close temporal relationship to a possibly causative organic factor. The categories ªmigraineº and ªtension-type headacheº parallel the first two categories of the Ad Hoc Committee's classification, and their subcategories are shown in Table 1. The subcategories of most relevance to

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psychologists are ªmigraine without aura,º ªmigraine with typical aura,º and all types of ªtension-type headache.º In contrast to previous taxonomies, the IHS system provides operational diagnostic criteria for all types of headaches. The criteria are too extensive to list here but the descriptions of the most significant subcategories are provided in Table 2. The system classifies headaches rather than people so that an individual can be diagnosed as suffering from more than one type of headache. The IHS system has gained wide acceptance among headache specialists and has been translated into more than 10 languages. It has been endorsed by all national headache societies represented by the IHS and the World Federation of Neurology. The major principles of the classification have been incorporated into the 10th revision of the International classification of diseases (World Health Organization, 1992). Specialist headache journals, such as Headache and Cephalalgia, expect contributors to use the system. The Chairman of the IHS Classification Committee, Jes Olesen, has summarized the evidence accumulated in support of the system (Olesen & Lipton, 1994; Olesen & Rasmussen, 1995). He has argued that, first, the system has demonstrated applicability in diverse settings (i.e., headache clinics and the general population). Second, the system is exhaustive as the 13th category in the system (ªheadache not classifiableº) is rarely used. Third, few studies have investigated the reliability of the system but those that have show substantial interobserver agreement. Validating the system is problematic as it is not clear what should constitute the critical comparison. One approach taken in some studies has been to compare the IHS system with the Ad Hoc Committee's system, and this has suggested a high correlation between the two classifications. The positive acclaim for the IHS system has been accompanied by a series of criticisms, however, and suggestions for revisions. The most common criticism is that it is too complex for general practice and epidemiological research (e.g., Michel et al., 1993; Solomon, 1994). Parenthetically, it should be noted that the system is described in a volume supplement running to 96 pages in contrast to the Ad Hoc Committee's system which was described in two pages. Other authors have made a similar point in arguing that it is not widely used in everyday medical care (Gobel, 1994; Marcus, Nash, & Turk, 1994). Solomon (1994) has proposed simpler criteria for clinical practice and Michel et al. (1993) have proposed a variation of the IHS system for epidemiological research. Marcus

532

Headache Table 1 First two categories of the classification system of the IHS. 1.

Migraine 1.1 Migraine without aura 1.2 Migraine with aura 1.2.1 Migraine with typical aura 1.2.2 Migraine with prolonged aura 1.2.3 Familial hemiplegic aura 1.2.4 Basilar migraine 1.2.5 Migraine aura without headache 1.2.6 Migraine with acute onset aura 1.3 Ophthalmoplegic migraine 1.4 Retinal migraine 1.5 Childhood periodic syndromes that may be precursors to or associated with migraine 1.5.1 Benign paroxysmal vertigo of childhood 1.5.2 Alternating hemiplegia of childhood 1.6 Complications of migraine 1.6.1 Status migrainous 1.6.2 Migrainous infarction 1.7 Migrainous disorder not fulfilling above criteria 2. Tension-type headache 2.1 Episodic tension-type headache 2.1.1 Episodic tension-type headache associated with disorder of pericranial muscles 2.1.2 Episodic tension-type headache unassociated with disorder of pericranial muscles 2.2 Chronic tension-type headache 2.2.1 Chronic tension-type headache associated with disorder of pericranial muscles 2.2.2 Chronic tension-type headache unassociated with disorder of pericranial muscles 2.3 Headache of the tension type not fulfilling above criteria

et al. (1994) have emphasized the need for educating health care providers in the use of the system. A second criticism that has been leveled at the IHS system by a number of authors is that the criteria are not well suited to diagnosing headaches in children (e.g., Gladstein, Holden, Peralta & Raven, 1993; Seshia & Wolstein, 1995). A third criticism evolved from a study by Michel et al. (1993) that led them to conclude the system had excellent specificity for diagnosing migraine but low sensitivity. The authors went on to argue that this results in the system being appropriate for research investigating the mechanisms or treatment of migraine but not for epidemiological research. A final criticism offered by some researchers is that the system does not adequately classify the daily and near daily headache disorders known as chronic daily headaches (Silberstein, 1994; Silberstein, Lipton, Solomon, & Mathew, 1994).

periodic review and revision; and, in fact, encouraged researchers ªto take an active part in the testing and further development of the classificationº (Headache Classification Committee of the IHS, 1988, p. 19). Questions can be asked, however, about the validity of the assumptions on which classification systems are based, as outlined early in the previous section. Factor analytic studies, for example, have cast doubt on whether migraine and tension-type headache are discrete entities (e.g., Peck & Attfield, 1981; Ziegler, Hassanein, & Hassanein, 1972). Psychophysiological research has suggested that migraine and tensiontype headache may have the same physiological mechanism (e.g., Lichstein et al., 1991; Martin, Marie, & Nathan, 1992). Finally, the two types of headaches do not respond differentially to the various psychological treatment modalities (e.g., Lichstein et al., 1991; Martin, Nathan, Milech, & van Keppel, 1989). 8.23.3.1 The Functional Model of Headaches

8.23.3 FUNCTIONAL MODEL, RISK FACTORS, AND ETIOLOGY The committee that developed the IHS classification system recognized it would need

The above considerations have led to the advocating of exploring alternative ways of conceptualizing primary headaches. One alternative is to approach headaches from a

Functional Model, Risk Factors, and Etiology

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Table 2 Descriptions of the main categories and subcategories of headaches of relevance to psychologists. Migraine without aura Idiopathic, recurring headache disorder manifesting in attacks lasting 4±72 hours. Typical characteristics of headache are unilateral location, pulsating quality, moderate or severe intensity, aggravation by routine physical activity, and associated with nausea and photo- and phonophobia Migraine with typical aura Migraine with an aura consisting of homonymous visual disturbances, hemiparesis or dysphasia, or combinations thereof. Gradual development, duration under one hour and complete reversibility characterize the aura which is associated with headache Episodic tension-type headache Recurrent episodes of headaches lasting minutes to days. The pain is typically pressing/tightening in quality, of mild or moderate intensity, bilateral in location, and does not worsen with routine physical activity. Nausea is absent, but photo- or phonophobia may be present Chronic tension-type headache Headache present for at least 15 days a month during at least six months. The headache is usually pressing/tightening in quality, mild or moderate in severity, bilateral, and does not worsen with routine physical activity. Nausea, photo-, or phonophobia may occur Headache of the tension-type not fulfilling above criteria Headache that is believed to be a form of tension-type headache but does not quite meet the operational diagnostic criteria for any of the forms of tension-type headache

functional rather than a symptomatological perspective in which the emphasis is on understanding the controlling variables of headaches or the variance in headache activity. The key questions are the ªwhyº questions: why does the person suffer from a headache one day rather than another; why does the person suffer from headaches more at this stage of their life than at other stages; why did the person develop a headache problem when they did; and why is the person predisposed to developing a headache disorder? Such questions seem more closely related to etiology than pain characteristics and associated symptoms, and appear to have more management implications, at least from a psychological perspective. A functional model of chronic headaches is represented in Figure 1 (Martin, 1993). In the center of the model are the headaches and associated symptoms, and the underlying physiological mechanisms. The controlling variables are represented as antecedents and consequences. The antecedents are arranged along a temporal continuum grouped into four categories. The immediate antecedents are the stimuli that precipitate or aggravate headaches, and commonly reported triggers include: stress and negative emotions; perceptual phenomena such as flicker, glare, and loud noise; certain foods, alcohol, and hunger; and high temperature and humidity. Setting antecedents are the

lifestyle factors that moderate current vulnerability and provide the psychosocial context in which headaches occur. If headaches are triggered by stress, for example, a full understanding of the problem requires investigation of the sources of stress and stress-moderating variables such as appraisal processes, coping skills, and social support. A dysfunctional marriage serving as a stressor could be viewed as a setting factor for stress-induced headaches as could a deficient social support system. Onset antecedents are the processes or events that result in headaches developing initially or becoming significantly worse. Stressful life events and head or neck trauma are commonly reported events that sufferers associate with the start of their headache disorder. Predisposing antecedents are the constitutional and personality characteristics that account for individual differences in susceptibility. Headaches run in families and genetic factors are considered to play a role. Consequences are included in the model because the reactions of headache sufferers and their significant others often exacerbate the headaches by setting up negative feedback loops with the antecedent factors; and similarly, the long-term consequences of headaches can contribute to a psychosocial context in which headaches thrive. Headaches and their associated symptoms often lead to sufferers feeling

Predisposing factors

Onset factors

Setting factors

Immediate factors

(constitutional and personality characteristics that account for individual differences in susceptibility)

(processes or events that resulted in headaches developing initially or worsening)

(lifestyle or life situation factors that moderate current vulnerability)

(stimuli that precipitate or aggravate headaches)

ANTECEDENTS

PsychoPhysiological mechanisms

Immediate reactions of sufferers

Long-term response of sufferers

(maladaptive reactions that lead to feedback loops)

(maladaptive responses that lead to feedback loops)

Immediate reactions of others

Long-term response of others

(maladaptive reactions that lead to feedback loops)

(maladaptive responses that lead to feedback loops)

Headaches and associated symptoms

HEADACHE PHENOMENA

Figure 1 The functional model of chronic headaches (after Martin, 1993).

CONSEQUENCES

Functional Model, Risk Factors, and Etiology stressed, anxious, and depressed, for example, thus creating a vicious cycle whereby the reactions further exacerbate the problem. The tension resulting from headaches can lead to rows between sufferers and their partners, thereby causing further deterioration in the marital relationship which may be a setting factor for the headaches. Alternatively, partners may respond to headaches by providing attention, support, and sympathy, so that reinforcement may play a role in the maintenance of headaches. After headaches have adversely affected social and recreational activities on a number of occasions, sufferers may withdraw from such activities. Hence, a long-term consequence of headaches may be a reduction in the sufferer's social network, thereby resulting in reduced social support, a setting antecedent for stress-related headaches. The functional model has been developed based on work with adults but has also been applied to children and adolescents (Holden, Gladstein, Trulsen, & Wall, 1994). The book contains examples of patients analyzed according to a functional perspective, and an intervention approach driven by the model (Martin, 1993). The literature relevant to this model will now be reviewed briefly. Predisposing, onset, and setting antecedents will be discussed under the general heading of ªrisk factors for developing a headache disorder,º and immediate antecedents, physiological mechanisms, and immediate reactions will be discussed under the general heading of ªetiology of headaches.º Long-term consequences will be reviewed in the following section on impact of headaches. Because of the feedback loops that characterize chronic headaches, it should be emphasized that the appropriate subsection for discussing research findings is often not clear. Inadequate social support can be viewed as both an antecedent and consequence of headaches, for example. 8.23.3.2 Risk Factors for Developing a Headache Disorder 8.23.3.2.1 Predisposing antecedents Epidemiological studies consistently report that headaches are more prevalent in females than males (e.g., Nikiforow & Hokkanen, 1978). In one study, the gender ratio for migraine was estimated at 2.5:1, and for tension-type headache at 1.4:1 (Rasmussen, Jensen, Schroll, & Olesen, 1992b). Migraine has long been accepted as a famial condition, and in fact many neurologists consider a family history to be a prerequisite for the diagnosis of migraine (Ziegler, 1978).

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Early studies reported concordance rates in excess of 90% (e.g., Allan, 1930) but later studies reported rates as low as 10% (e.g., Waters, 1971). The early findings led a number of authors to suggest that migraine was an inherited disorder. Twin studies have supported a genetic factor, although reported concordance rates have varied from 14% to 100% for monozygotic twins and 0% to 40% for dizygotic twins (Lucas, 1977). The mode of transmission has been a controversial topic with autosomal dominant, autosomal recessive, and multifactorial modes proposed. More recent and better controlled studies support the multifactorial mode (e.g., Kalfakis, Panas, Vassilopoulos, & Malliara-Loulakaki, 1996), and D'Amico, Leone, Macciardi, Valentini, and Bussone (1991) have suggested that it is ªsexlimited.º One approach to inherited predisposition is to consider whether individuals with particular personality traits or profiles are more vulnerable to headaches, since personality is partially genetically determined. For many years it has been argued that headache sufferers tend to have a particular personality profile. HenrykGutt and Rees (1973), for example, characterized a migraine sufferer as ªa tense, driving, obsessional perfectionist with an inflexible personality who maintains a store of bottledup resentments which can neither be expressed nor resolvedº (p. 142). Fewer descriptions of the personality traits associated with tension headache have appeared in the literature, but those that have share much in common with the migraine profile. The literature on personality and headaches is extensive as indicated by a review which tracked down over one hundred studies (Blanchard, Andrasik, & Arena, 1984), but the findings are inconsistent. Some studies report positive findings such as increased neuroticism in migraineurs (Breslau & Andreski, 1995), greater rigidity in tension-type headache sufferers (Passchier, van der Helm-Hylkema, & Orlebeke, 1984a), and higher Type-A scores in headache sufferers (Martin, Nathan, & Milech, 1987); but other studies have found few abnormalities (e.g., Andrasik, Blanchard, Arena, Teders, & Rodichok, 1982; Kohler & Kosanic, 1992). Methodological problems abound in this literature. Philips (1976) has pointed out, for example, that individuals who complain to their doctors have a particular type of personality characterized by extroversion and neuroticism, so that findings from clinical samples cannot be generalized to the headache population as a whole. Another problem relates to measurement artifact as elevated scores on some

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personality tests may result from measuring headache symptomatology rather than psychopathology (Dieter & Swerdlow, 1988). Cluster analytic studies have identified four or five homogeneous subgroups of headache sufferers, some of which are characterized by quite abnormal profiles, such as conversion V (clinically significant elevations on hypochondriasis and hysteria but not depression), and some of which are relatively normal (Rappaport, McAnulty, Waggoner, & Brantley, 1987; Robinson, Geisser, Dieter, & Swerdlow, 1991). This line of research is more consistent with clinical experience which suggests that personality characteristics sometimes play a predisposing role in headaches and sometimes do not. 8.23.3.2.2 Onset antecedents Events and processes that can initiate a headache disorder have received surprisingly little attention in the research literature. Some early studies have reported that the onset of headache problems is associated with stress on approximately 50% of occasions (Henryk-Gutt & Rees, 1973; Howarth, 1965). More recent studies have linked headache onset with particular types of stressful events such as physical and sexual abuse (Domino & Haber, 1987), personal loss (Kaiser & Primavera, 1993), and onset of low back pain (Duckro, Schultz, & Chibnall, 1994). One study has associated headache onset with minor head or neck injury (Weiss, Stern, & Goldberg, 1991). The only other events linked with headache onset are hormonally mediated. Menarche is considered by some to be associated with onset or exacerbation of headaches but others have presented data that they argue do not support this contention (cf. Deubner, 1977; Kudrow, 1978). Oral contraceptives can increase the frequency of migraine headaches (Granella et al., 1993), and pregnancy can be associated with the onset of a headache disorder although, more commonly, pregnancy results in a decrease in headaches (Uknis & Silberstein, 1991). 8.23.3.2.3 Setting antecedents Given that stress is commonly reported to be a precipitator of headaches, frequent exposure to stressors on the one hand, or inadequate personal or social resources for coping with stressors on the other hand, should result in vulnerability to headaches. Exposure to stressors has been investigated both at the levels of major and minor life events. Comparing headache sufferers and controls in terms of major life

events has usually resulted in a finding of no significant difference (e.g., Martin & Theunissen, 1993), but comparisons in terms of minor life events or daily hassles have yielded significant differences (e.g., Spierings, Sorbi, Haimowitz, & Tellegen, 1996). Holm, Holroyd, Hursey, and Penzien (1986) also found that headache sufferers appraised the stressful events they experienced more negatively than did controls. Specifically, headache sufferers perceived the event as having greater impact and themselves as having less control over the event than did controls. In addition, headache sufferers employed less effective coping strategics in their efforts to manage stressful events since they placed more reliance on the relatively ineffective coping strategies of avoidance and self-blame and made less use of social support than did controls. A follow-up study confirmed that sufferers of both migraine and tension-type headache appraised and coped with stressful events differently from headachefree controls (Ehde & Holm, 1992). Two studies comparing headache sufferers and matched nonheadache controls have found headaches to be associated with deficits in perceived social support. Martin and Theunissen (1993) reported differences between headache and control groups in terms of availability and adequacy of both attachment and social integration. Martin and Soon (1993) found headache sufferers were significantly less satisfied with the support available to them and scored lower on all four types of functional support measured in the study. If anxiety and depression can precipitate or aggravate headaches then emotional and mood disorders would provide a psychosocial context for headaches. A number of studies have documented associations between headaches, depression and anxiety. Featherstone (1985) found that depression or anxiety were significantly more commonly diagnosed in headache sufferers than in matched controls. Morrison and Price (1989) reported that 33% of referrals to a migraine clinic met the Diagnostic and Statistical Manual of Mental Disorders, third edition, criteria for affective disorder. A recent study by Marazziti et al. (1995) has gone further to argue that migraine, panic disorder, and some forms of depressive illness are part of the same spectrum. Headaches have been linked to other disorders such as sleep disturbance (e.g., Paiva et al., 1994), eating disorders (e.g., Brewerton & George, 1993), and chronic low back pain (e.g., Duckro et al., 1994). Given that these disorders are likely to be associated with stress and negative emotions, they too could contribute to the psychosocial context of headaches.

Functional Model, Risk Factors, and Etiology 8.23.3.2.4 Summary of risk factors Before listing risk factors for headache disorders, two points need emphasizing. The evidence supporting the risk factors is tenuous as it is based on a small number of studies that have not always produced consistent findings, and it is open to alternative interpretations such as some ªrisk factorsº being a consequence rather than a cause of headaches (e.g., perceptions of deficient social support). Also, the relationships that have been demonstrated are of a low order of magnitude compared with some risk factors for other disorders (e.g., smoking and lung cancer). Having stated these limitations, the following summary is offered: (i) Female gender and family history of headaches are risk factors for headaches, particular migraine. (ii) Personality profiles such as the ªneurotic triadº or ªconversion Vº on the Minesota Multiphasic Personality Inventory, and Type A personality, arguably, constitute risk factors for headaches. (iii) High exposure to stressors, dysfunctional appraisal processes, deficient coping skills, and perceived inadequate social support are risk factors for developing a headache disorder. (iv) Mood and emotional disorders, such as depression and anxiety, are headache risk factors. 8.23.3.3 Etiology of Headaches

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failure feedback, has been used in all three of the studies cited below and has consistently resulted in reported head pain in comparison to control procedures. Other antecedent factors that have been shown to induce headaches include: visual disturbance (subjects have to read small font words from a computer screen while the screen is illuminated by a bright stroboscopic light) (Martin & Teoh, 1997a); noise (exposure to 65 decibels of white noise) (Martin & Todd, 1996); and hunger (food deprivation for 19 hours) (Martin & Seneviratne, 1997). The headache-inducing properties of stress have also been demonstrated in the laboratory in two studies (Gannon, Haynes, Cuevas, & Chavez, 1987; Haynes, Gannon, Bank, Shelton, & Goodwin, 1990). The only other trigger factor to be manipulated has been food. Moffett, Swash, and Scott (1974) investigated the effect of chocolate in migraine by carrying out two separate double-blind studies in migraineurs who had observed that headaches regularly occurred after the ingestion of small amounts of cocoa products. The results suggested that chocolate on its own is rarely a precipitant of migraine. Using a quite different methodology, Medina and Diamond (1978) randomly assigned migraineurs to three dietary regimes involving eating foods reported to be associated with headaches, eating foods not reported to be associated with headaches, and a normal diet control condition. Monitoring headaches over six week periods on each dietary regime revealed no differences in indices of migraine or headache medication.

8.23.3.3.1 Immediate antecedents It has been suggested that ªeverything can produce a migraineº (Blau & Thavapalan, 1988, p. 433) and certainly the list of trigger factors reported in the literature is extensive. One study aimed to simplify the list via factor analysis (Martin, Milech, & Nathan, 1993). This approach resulted in 25 commonly reported precipitants being reduced to five readily interpretable patterns: negative affect (stress, anxiety, depression, and anger); visual disturbance (flicker, glare, and eyestrain); somatic disturbance (sneezing, coughing and pollen); environmental stress (humidity, high temperature, and opposite to relaxation); and consumatory stimuli (alcohol, food, and hunger). Although the list of trigger factors is long, the empirical support for most of the factors is limited. A series of studies has been completed in which the main antecedent factors were manipulated in the laboratory to validate them experimentally as headache triggers. Negative affect, induced by requiring subjects to attempt to solve difficult anagrams accompanied by

8.23.3.3.2 Psychophysiological mechanisms The peripheral physiological mechanism of tension-type headache was considered to be sustained contraction of skeletal muscles around the head, although the IHS classification system divides this group into tension-type headaches caused by pericranial muscle tension, and tension-type headaches caused by unknown factors. In contrast, the peripheral physiological mechanism of migraine was considered to be distended extracranial and intracranial arteries. The paradigm that has been used most extensively to investigate these mechanisms has been to compare headache sufferers and headache-free controls in terms of a number of physiological variables, under various experimental conditions such as rest/relaxation, physical or mental stress, and poststress recovery. The different conditions enable testing a variety of hypotheses relating to the physiological mechanisms of headaches such as whether headache sufferers differ from controls at rest, in response to stress (e.g., exaggerated

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response), or in terms of poststress recovery (e.g., slower recovery). A large literature developed during the late 1970s and 1980s using this approach but a clear picture has not emerged. Considering first the hypothesized muscular mechanism of tensiontype headache, the evidence is mixed, but on balance quite unconvincing. There is little support for the hypothesis that tension-type headache sufferers have generally elevated electromyographic (EMG) levels or are slow to recover following stress (e.g., Andrasik, Blanchard, Arena, Saunders, & Barron, 1982; Martin & Mathews, 1978). The evidence for headache sufferers responding to stress with more muscle tension than nonheadache controls is more promising (e.g., Cohen et al., 1983) but many negative findings have been reported (e.g., Martin & Mathews, 1978). In reviewing this literature, Flor and Turk (1989) reported that among studies they rated as more methodologically sound, compared with studies that were methodologically weaker, a lower proportion supported the muscular hypothesis. Investigations of the vascular mechanism of migraine have also produced inconsistent findings but seem more promising. Comparisons of migraineurs and control subjects at rest suggest some temporal blood flow abnormalities such as increased variability and perhaps elevated cardiovascular arousal as indexed by heart rate and possibly other variables such as diastolic blood pressure and facial skin temperature (e.g., Drummond, 1982; Morley 1985). It is in the area of response to stress that the most impressive findings have occurred, however. Migraineurs show response stereotypy by responding maximally in terms of the cardiovascular system to a variety of stressors (e.g., Cohen, Rickles, & McArthur, 1978). In addition, relative to controls, migraineurs respond to stress with vasodilatation of the temporal artery, possibly preceded by vasoconstriction (e.g., Rojahn & Gerhards, 1986). There is also some tentative evidence that migraineurs are slower to recover from stress (e.g., Gannon, Haynes, Safranek, & Hamilton, 1981). One other paradigm that has been used for investigating physiological mechanisms is to compare headache sufferers when experiencing a headache and when headache-free. Several studies have investigated muscular mechanisms with this approach and produced directly conflicting results. For example, Haynes, Griffin, Mooney, and Parise (1975) found significantly higher forehead EMG during headache periods while Martin and Mathews (1978) reported the reverse. Vascular mechanisms have received less attention but Passchier, van der Helm-Hylkema, and Orlebeke (1984b) reported

that migraineurs experiencing a headache had significantly elevated heart rates relative to headache-free migraineurs. Finally, it should be noted that vascular abnormalities have been found in tension-type headache sufferers (e.g., Lehrer & Murphy, 1991), and muscular abnormalities in migraineurs (e.g., Philips, 1977). Where migraineurs and tension-type headache sufferers have been included in the same study, it has often resulted in no significant differences emerging between them (e.g., Martin et al., 1992).

8.23.3.3.3 Immediate reactions of sufferers and significant others There are a variety of reactions to headaches that are maladaptive in the sense that they are likely to aggravate the disorder. It is known, for example, that pain perception is affected by factors such as anxiety level, focus of attention, and sense of control (Melzack & Wall, 1988). Hence, reactions that are characterized by elevated anxiety, focusing on the headaches, and feelings of loss of control will enhance pain perception. Factor and cluster analytic studies of cognitive and emotional reactions to headaches demonstrate exactly these responses, as common responses include tension, worry, and concern; rumination about the headaches and their causes; and helplessness (e.g., Penzien, Holroyd, Holm & Hursey, 1985; Philips, 1989). In similar vein, as stress and negative affect are the most common precipitators of headaches, any reactions to headaches that are characterized by negative affect will lead to a vicious cycle developing. The findings discussed above provide support for this feedback loop, and additional findings from these studies include reactions such as irritation over environmental difficulties and emotional reactivity (Penzien et al., 1985; Philips, 1989). Philips (1987) has argued that avoidance behavior plays a role in maintaining chronic pain via increased sensitivity to pain-inducing stimuli in the short term and through adversely affecting self-efficacy beliefs pertaining to pain in the long term. This model is based on two types of evidence, one of which is the data showing that a characteristic response to pain is avoidance behavior (e.g., Philips & Hunter, 1981). The other type of evidence comes from a laboratory study in which it was shown that exposure to a pain-provoking stimulus (noise) led to increased tolerance of the stimulus, whereas avoidance of exposure to the stimulus resulted in decreased tolerance (Philips & Jahanshahi, 1985). One study also found that repeated exposure to a headache trigger (flicker,

Impact of Headaches on Person, Family, and Society glare, and eyestrain) resulted in desensitization to the trigger (Martin & Teoh, 1997b). A common response to a headache developing, or even to concern that a headache will develop, is to take medication, sometimes in large quantities. Excessive consumption of medication can exacerbate the headache disorder, however (Rapoport, 1988; Saper, 1987). The IHS classification includes a category ªheadache associated with substances or their withdrawalº and the subcategories ªergotamine induced headacheº and ªanalgesic abuse headache.º Baumgartner, Wessely, Bingol, Maly, and Holzner (1989) claimed that drug-induced headaches are common, accounting for 10%±15% of patients in headache clinics, and some individuals consume extraordinary quantities of medication. A case has been described, for example, of a woman who was taking on average 21 tablets a day and met the criteria for both IHS subcategories (Forsyth & Martin, 1997). Hospitalization for detoxification resulted in spectacularly beneficial results. Finally, a number of authors have suggested that reinforcement or secondary gain play an important role in maintaining headaches in a proportion of cases (e.g., Martin, 1972; Stout, 1984). Unfortunately, this type of claim is extremely difficult to test empirically. Research on how sufferers and significant others react to headaches has indicated that the most common patterns of responses are positive (e.g., stop what you are doing, sit or lie down, take medication) rather than negative (e.g., ignoring, complaining) (Martin, Milech, & Nathan, 1993). Also, cases of headaches in children and adolescents treated successfully using a contingency management approach are consistent with consequences maintaining the disorder (Ramsden, Friedman & Williamson, 1983; Yen & McIntire, 1971). 8.23.3.3.4 Summary of etiological factors The etiology of migraine and tension-type headache is not clear but the following factors seem to be involved. (i) Some form of vascular mechanism probably plays a role in both migraine and tensiontype headache and one feature of this mechanism is distended cranial arteries. (ii) This mechanism can be triggered by a number of factors. The most commonly reported trigger and the one for which there is most supporting evidence is stress and negative affect. Additional trigger factors that have established experimental validity include visual disturbance (flicker, glare, and eyestrain), noise, and hunger. Other factors can probably trigger headaches, such as alcohol, certain foods, and

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particular weather conditions, but the supporting evidence is largely limited to retrospective self-report. (iii) Maladaptive reactions to headaches by the sufferers and significant others can play a role in maintaining headaches via a number of different processes such as creating negative feedback loops and reinforcement. 8.23.4 IMPACT OF HEADACHES ON PERSON, FAMILY, AND SOCIETY The impact of headaches on individuals, families, and the community has received far more attention in the 1990s than previous decades. A recent supplement to Neurology (1994, 44, Supplement 4) was specifically devoted to the impact of migraine. The literature seems driven by two main trends. First, the shift in emphasis in medicine from a focus on reducing mortality to increasing quality of life has led to a series of studies looking at how headaches affect quality of life. Second, concerns about increasing health care costs and the need for developing a costeffective approach to health has led to researchers looking at the costs of providing services to headache sufferers on the one hand (i.e., the direct costs) vs. the economic costs of headaches in terms of absenteeism and reduced work efficiency on the other (i.e., the indirect costs). 8.23.4.1 Impact of Headaches on Individual and Family Functioning As discussed earlier, headaches are often accompanied by a number of symptoms. The majority of migraine sufferers report that pain is the most important symptom however, and a review by Stewart and Lipton (1994) found that across several studies, 57±85% of migraineurs rated their pain intensity as severe or very severe. Daily activities are severely disrupted at the time of a migraine attack as indicated by the number of migraineurs who endorsed the following statements (percentages agreeing with statements are included in parentheses): ªwhen I have one of my migraines/severe headaches, I postpone household choresº (90%); ªI always have to lie down when I have one of my migraines/severe headachesº (76%); ªmy migraines/severe headaches limit my ability to work as carefully as I usually doº (73%) (Clarke, MacMillan, Sondhi, & Wells, 1996). This study also showed that migraine had an impact between attacks as indicated by the following endorsed statements: ªI'm afraid of letting others down because of my migraines/ severe headachesº (66%); ªmy migraines/severe

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headaches interfere with how I get on with members of my family and friendsº (54%). A number of studies have administered quality of life scales to headache sufferers and various comparison groups. Osterhaus, Townsend, Gandek, and Ware (1994), for example, administered to migraineurs in the USA the Medical Outcomes Study (MOS) 36-item ShortForm Health Survey (SF-36) which provides measures on eight scales: physical functioning, role disability due to physical problem, bodily pain, general health, vitality, social functioning, role disability due to emotional problems, and mental health. Scores were adjusted for comorbid conditions. Migraineurs' adjusted scores were substantially and significantly lower on all eight scales than those for a general population sample of comparable age and gender who reported no chronic disease. Compared with other chronic conditions which had been adjusted for age, gender, and comorbidity, migraine appeared comparable to conditions that might otherwise be considered to be more debilitating than migraine. While similar to osteoarthritis and diabetes in physical functioning, scales measuring well-being were significantly lower for migraineurs. Migraine was significantly lower than hypertension on all measures except general health perceptions. Measures of bodily pain, role disability due to physical health and social functioning, discriminated best between migraineurs, disease-free individuals and patients with other chronic conditions. Solomon, Skobieranda, and Gragg (1993) also administered the MOS Short-Form Health Survey to headache sufferers and concluded that patients with chronic headaches have a level of functioning worse than that of patients with such chronic diseases as arthritis, diabetes, depression, and back problems. The only chronic conditions that had similar levels of functional impairment to chronic headaches were myocardial infarction and congestive heart failure. The only disorder with worse levels of patient well-being and functioning was symptomatic HIV infection. The SF-36 has been administered in other countries with similar results (e.g., Essink-Bot, Van Royen, Krabbe, Bonsel, & Rutten, 1995). Also, the impact of headaches on lifestyle, health status, and quality of life has been demonstrated on a number of other instruments such as the Comprehensive Pain Questionnaire (Lacroix & Barbaree, 1990), Nottingham Health Profile (Jenkinson, 1990), and Sickness Impact Profile (Carlsson, Augustinsson, Blomstrand, & Sullivan, 1990). A recent development in this literature is the construction of quality of life questionnaires specific to headache such as

the Migraine-specific Quality of Life Questionnaire (Hartmaier, Santanello, Epstein, & Silberstein, 1995) and the Quality of Life Headache in Youth (Langeveld, Koot, Loonen, HazebroekKampschreur, & Passchier, 1996). Impairment in psychosocial functioning has been demonstrated in children suffering from recurrent headaches as well as adults (Carlsson, Larsson, & Mark, 1996). 8.23.4.2 Impact of Headaches on Society In a review of patterns of health care utilization, Lipton, Stewart, and von Korff (1995) reported that the percentages of migraineurs who had ever consulted a doctor ranged from 56% in Denmark to 66% in the USA and 81% in Canada. Although these proportions are high in every country studied, the majority of migraineurs were not being seen by doctors currently and most migraine sufferers reported that they had never been diagnosed by a doctor. Less information is available on tension-type headache but Rasmussen, Jensen, and Olesen (1992) reported that only 24% of tension-type headache sufferers had ever consulted their general practitioner. Hospitalization for headache is relatively rare. Rasmussen et al. (1992) reported that 2% of all headache sufferers were hospitalized in Denmark, and Stang and Osterhaus (1993) reported that 8% of migraineurs were hospitalized in the USA. The indirect costs of headaches are enormous. Although the majority of headache sufferers claim that they do not take time off work because of their headaches (Clarke et al., 1996), the number of working days lost is still very high. Stang and Osterhaus (1993) estimated that migraineurs in the USA were bedridden for about three million days per month and had an estimated 74.2 million days per year of restricted activity due to migraine. Estimates of the cost of migraine in terms of lost productivity in the USA have ranged from $1.4 to $17 billion per year (Stewart & Lipton, 1994), and have been valued at greater than ƒ600 million per year in the UK (Clarke et al., 1996). Estimates of the direct costs of medical care for headaches are harder to find. Clarke et al. (1996) quoted a figure of ƒ20±30 million per year as the cost of migraine to the National Health Service in the UK. This figure seems particularly low in the context of a study by Osterhaus, Gutterman, and Plachetica (1992) which calculated that the 648 migraineurs who responded to their survey in the USA incurred $529,199 in annual medical expenditure because of their condition. Of course, costs are likely to be lower than one would expect on the basis of the high prevalence rate of headache in the

Epidemiology, Life Span, Gender, and Cultural Issues community (discussed in Section 8.23.5) since migraine is substantially underdiagnosed and undertreated. Certainly, reviewers typically conclude that the indirect costs of headaches far exceed the direct costs (e.g., Lipton et al., 1995) which is often used as an argument for the need for better management. Both types of cost are difficult to estimate but a number of authors have recently suggested improved methods of analysis (e.g., de Lissovoy & Lazarus, 1994). 8.23.5 EPIDEMIOLOGY, LIFE SPAN, GENDER, AND CULTURAL ISSUES Epidemiological studies have produced wildly varying figures for headache prevalence. This is illustrated by a review that selected 24 out of 58 identified population-based studies and reported prevalence rates for migraine ranging from 1.7% to 46.3% in males and from 4.4% to 57.1% in females (Stewart, Simon, Shechter, & Lipton, 1995). This variability is usually attributed to unreliable or inaccurate data and the methodological problems inherent in population-based studies. Studies using the IHS criteria have achieved greater consistency. Rasmussen, Jensen, Schroll, and Olesen (1991), investigating a Danish sample, reported lifetime prevalences for men of 93% for any kind of headache, 8% for migraine, and 69% for tension-type headache. For women, the lifetime prevalences were 99% for all headache, 25% for migraine, and 88% for tension-type headache. In the preceding year, migraine prevalences were 6% in men and 15% in women; the corresponding tension-type headache prevalences were 63% and 86%, respectively. The American Migraine Study reported very similar results for migraine prevalence (Stewart, Lipton, Celentano, & Reed, 1992) as did an epidemiological study conducted in France (Henry et al., 1992). Epidemiological research has identified a number of factors that are related to prevalence. Gender is one such factor as revealed in the above figures, with both migraine and tensiontype headache more common in females. Age is another factor. Headaches are common in childhood (Kristjansdottir & Wahlberg, 1993) and migraine prevalence is about equal in boys and girls prior to puberty (Goldstein & Chen, 1982). Prevalence increases more rapidly in girls than in boys as adolescence approaches. Prevalence increases in both sexes from 12 to 38 years of age before falling steadily to a low rate in later life (Stewart, Linet, Celentano, Van Natta, & Ziegler, 1993). Physician and clinic-based studies suggest that migraine is associated with high intelligence and social class, but this is not supported by

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population-based studies. In the American Migraine Study, migraine prevalence was found to be lower in higher income groups (Lipton & Stewart, 1993), a finding replicated in the National Health Interview Study (Stang & Osterhaus, 1993). In the latter study, prevalence was lowest for middle-income groups, and began to rise in the high-income group. This study relied on self-reports of migraine, however, and that migraine awareness rises with income. It is often suggested that migraine prevalence varies as a function of culture. Haimanot, Seraw, Forsgren, Ekbom, and Ekstedt (1995) reviewed population-based studies from nine countries and calculated one year migraine prevalence rates ranging from 0.7% in China to 29.1% in Thailand. It is not possible to say, however, the degree to which these figures represent differences in prevalence rates among countries or the problems of population-based studies referred to earlier. In the Stewart et al. (1995) review, for example, nine populationbased studies were from a single country (the UK) and yet the reported rates varied from 17.0% to 46.3% in males, and from 23.1% to 57.1% in females. Focusing on more recent studies using IHS criteria does suggest that while at least some countries in Europe and North America have similar rates, as discussed earlier, other countries differ. A study of Greek monks living in an all-male community, for example, reported prevalence rates for migraine of 3.6% and for tension-type headache of 3.3% (Mitsikostas, Thomas, Gatzonis, Ilias, & Papageorgiou, 1994). An Ethiopian study (Haimanot et al., 1995) reported prevalence rates for men of 1.7% for migraine and 1.0% for tension-type headache, and prevalence rates for women of 4.2% for migraine and 2.3% for tension-type headache. These figures are dramatically lower than those reported in other studies using IHS criteria, particularly the figures for tension-type headache. The implication of these findings is that the prevalence of migraine and tension-type headache is higher in developed, Westernized countries than in the developing nations and simpler societies, but given some of the earlier findings, such as the high prevalence of migraine in Thailand, such conclusions await further research. One study suggested that migraine prevalence was increasing in the USA. The Center for Disease Control reported that migraine prevalence increased by 60% between 1981 and 1989 (Morbidity and Mortality Weekly Report, 1991). As the study relied on self-report, such a finding could reflect greater awareness of the disorder.

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With respect to the contribution of epidemiological studies to our understanding of functional characteristics of headaches, there appears to be much overlap in trigger factors across individuals grouped in diverse ways. Migraine and tension-type headache have similar triggers, for example, although some differences exist such as a slightly greater vulnerability to visual stimuli (flicker, glare, eyestrain) in migraineurs (Martin, Milech, & Nathan, 1993). Trigger factors are much the same for males and females except, of course, for hormonally related precipitants (Rasmussen, 1993). Headache triggers reported in studies of childhood headache (e.g., Osterhaus & Passchier, 1992, Spierings & Schellekens, 1991) are similar to those reported in adult studies assuming that one translates predominantly childhood phenomena such as ªdoing homeworkº and ªpreparing for examsº into adult equivalents. Epidemiological studies carried out in different countries consistently report stress as a major factor but other factors appear more culturally bound. For example, alcohol was not listed as a precipitant of headaches in Saudi Arabia (Al-Rajeh, Bademosi, Ismaii, & Awada, 1990), witchcraft seemed a uniquely African precipitant (Levy, 1983), and sauna a rather Scandinavian phenomenon (Nikiforow & Hokkanen, 1978).

usually recommend diagnostic testing which include: the ªfirst or worstº headache; headache with increasing frequency or severity; headache associated with symptoms and signs such as fever, stiff neck, nausea, and vomiting; newonset headache after age 50; and headache associated with cognitive impairment. Neuroimaging is most commonly used to rule out brain tumors. MRI is generally more sensitive than CT scan but the yield for both types of test is low. Reviews show detection rates for tumors of less than one in a hundred scans (e.g., Frishberg, 1994). The electroencephalogram (EEG) for many years was a standard test for the evaluation of headaches, especially in the pre-CT scan era. Experts now argue that EEG is not useful in the routine evaluation of headache (Evans, 1996). A lumbar puncture is recommended in certain circumstances such as where a neurologist is suspicious that a new-onset headache is caused by a subarachnoid hemorrhage. Similarly, cerebral arteriography and magnetic resonance angiography are recommended in specific circumstances associated with subarachnoid hemorrhage. For headaches following minor head injury, skull radiographs are frequently carried out but are probably not justified on a routine basis. 8.23.6.2 Medical Management

8.23.6 MEDICAL DIAGNOSIS, TESTS, AND TREATMENT 8.23.6.1 Medical Assessment Headaches are one of the most common symptoms that neurologists evaluate and although most are caused by primary headache disorders, the differential diagnosis is one of the longest in medicine with over 300 different types and causes (Saper, Silberstein, Gordon, & Hamel, 1993). The causes or types of most headaches can be determined by taking a detailed history supplemented by a general and neurological examination. Experts differ in their opinion with respect to the value of diagnostic testing. Saper et al. (1993) state that ªIn general, we believe that most patients with headache require neurodiagnostic testing. A computed tomographic (CT) scan or magnetic resonance imaging (MRI) should be performed in most patients with headaches severe enough to prompt medical evaluation and treatmentº (p. 8). In contrast, Lance (1993) argues that ªonly a small proportion of headache patients require investigation, other than a careful history and physical examinationº (p. 268). In a review of diagnostic testing, Evans (1996) listed clinical situations in which neurologists

The medical management of primary headache will often incorporate some counseling but the mainstay is pharmacotherapy. Two approaches are differentiated, acute treatment aimed at aborting attacks and prevention or prophylaxis, although there is some overlap in the medications prescribed (Baumel, 1994; Leone, Grazzi, D'Amico, Moschiano, & Bussone, 1995; Schulman, & Silberstein, 1992). Four main types of drug are recommended for the acute treatment of migraine: analgesics, nonsteroidal anti-inflammatory drugs (NSAIDs), ergot derivatives, and sumatriptan. One of the most commonly used drugs for the treatment of acute migraine is aspirin which has both analgesic and anti-inflammatory properties. Migraine attacks can also be managed successfully using paracetamol or codeine. Nausea or vomiting is common during migraine attacks so an antiemetic may also be administered. NSAIDs are probably the preferred treatment for mild to moderately severe attacks of migraine. As for aspirin, controlled trials have demonstrated the efficacy of this approach but both can lead to side effects such as gastrointestinal hemorrhaging. Ergotamine tartrate was the drug of choice for the acute treatment of migraine for many years but recent controlled

Psychological Assessment and Treatment trials have shown that it is effective in no more than 50% of patients. Dihydroergotamine (DHE) is a derivative of ergotamine whose action and side effects are similar to those of ergotamine tartrate but very much milder. It is particularly recommended for acute migraine management when given intravenously or intramuscularly. Both ergotamine and DHE are associated with a range of side effects including nausea, vomiting, abdominal pain, diarrhea, paresthesia, and leg cramps. The newest and perhaps the most effective abortive drug available for migraine therapy is sumatriptan. Sumatriptan has been shown to be more effective than other commonly used antimigraine drugs including ergotamine and aspirin, and is also effective against the nausea and vomiting that accompany a migraine attack. The weakness of sumatriptan is that headache recurs more frequently than with other antimigraine medications. Another drawback is the high cost of the medication. Side effects of sumatriptan include sensation of hotness, chest symptoms, neck pain/stiffness, flushing, and tingling. Five main classes of prophylactic drugs are currently used for migraine: beta-blockers, calcium antagonists, serotonin modulators, NSAIDs, and ergot compounds. A number of beta-blockers have been shown to be effective with migraine of which the most studied is propanolol. A review by Tfelt-Hansen (1986) concluded that propanolol led to an average reduction in migraine pain of 54%. The most common side effects are bradycardia, arterial hypertension, insomnia, asthma, gastrointestinal disturbances, vertigo, weight increase, depression, and bronchospasm. Flunarizine has been shown to be the most effective calcium antagonist (Leone, Grazzi, La Mantia, & Bussone, 1991) and is particularly effective in reducing headache frequency. Side effects include weight gain, depression, somnolence, and parkinsonism. Serotonin modulators include amitriptyline, methysergide, and pizotifen, the latter being the most useful and widely used. The most frequently reported side effects are somnolence, increased appetite, and weight gain, which can seriously limit the drug's usefulness. Several NSAIDs have been shown to prevent migraine in controlled tests. These drugs impact on nausea and vomiting as well as pain. Prolonged prophylaxis with NSAIDs is contraindicated because of their well-known gastric and intestinal effects of ulceration and hemorrhage. DHE has been shown to be an effective prophylactic but is probably less so than betablockers, flunarizine, and pizotifen. Many drugs used in the management of migraine have been discovered serendipitously. The introduction of beta-blockers, for example,

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followed the chance observation that angina patients suffered less migraine when given propanolol. The mechanism of most migraine medications is not known although multiple therapeutic actions are suspected. Combinations of these drugs are contraindicated in some cases, such as using ergotamine and sumatriptan simultaneously, or beta-blockers and calcium antagonists together. The acute treatment of episodic tension-type headache can usually be accomplished effectively with analgesics and NSAIDs, but chronic tension-type headache is more difficult to treat (Biondi & Portuesi, 1994). The most frequently used drug treatments include three classes of drugs: analgesics, anxiolytics, and antidepressants. Treatment by analgesics is often practiced on the basis of self-prescription by the patients themselves. Benzodiazepines, such as diazepam and lorazepam, are the most commonly used anxiolytics. Long-term use can lead to analgesic and anxiolytic abuse and dependence. Caffeine frequently combined with analgesics may also cause dependence. When headaches occur daily the medication of choice is a tricyclic antidepressant (Kunkel, 1991). These drugs are not used for their antidepressant properties but for multiple actions including an effect on serotonergic transmission. Only rarely do the common side effects of tricyclic antidepressants, such as somnolence, dry mouth, weight gain, and blurred vision, constitute a contraindication to therapy at the dosage usually employed in the treatment and prophylaxis of tension-type headache. Adding a beta-blocker such as propanolol is considered to be able to resolve cases in which the tricyclic antidepressant alone is shown to be insufficient (Speed, 1983). Brennum et al. (1996) have argued that sumatriptan is not clinically useful in the management of episodic tension-type headache although at times it differs significantly from placebo. 8.23.7 PSYCHOLOGICAL ASSESSMENT AND TREATMENT 8.23.7.1 Psychological Assessment Medical evaluation necessarily precedes psychological assessment as the latter does not discriminate between primary and secondary headaches. Psychological assessment of headaches usually involves three approaches: interviewing the patient and possibly significant others, self-monitoring, and administration of questionnaires (Martin, 1993). Interviewing is aimed at collecting a number of different types of information including: (i) background details

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that provide a psychosocial and developmental context for understanding the headaches, (ii) headache characteristics and symptoms that enable a diagnosis to be formulated, (iii) functional aspects of headaches that contribute to an understanding of the controlling variables of headaches, and (iv) assessment and treatment history. The specific questions that may be useful to ask at interview have been documented in sources such as the Psychological Assessment of Headache Questionnaire (Martin, 1993) and Headache History Form (Blanchard & Andrasik, 1985). Self-monitoring usually takes two forms. First, headaches are typically recorded using some form of time-sampling approach whereby patients rate their headache intensity periodically and record the ratings on cards. Rating scales have varied from 3 points to 100 points and rating intervals from hourly to daily. Patients often record additional information on the cards, such as medication usage. Attempts to assess the reliability and validity of this approach have not generated very impressive data (Collins & Thompson, 1979; Blanchard, Andrasik, Neff, Jurish, & O'Keefe, 1981), but such records are likely to yield more accurate and detailed information than retrospective reports at interview. An alternative form of self-monitoring is event-sampling whereby patients complete records when specified events occur, such as prior to, during, or immediately after headaches developing. Information required might include what patients are feeling, thinking, and doing, and the situation that they are in, at such times. A number of examples of this approach have been published (e.g., Diamond, 1979; Martin, 1983). Many different types of questionnaire may prove helpful in assessing headaches. Questionnaires specific to headaches include the Headache Scale (Jahanshahi, Hunter, & Philips, 1986), the Headache Assessment Questionnaire (Bakal, 1982), the Headache Self-efficacy Scale (Martin, Holroyd, & Rokicki, 1993), the Headache-specific Locus of Control Scale (Vandecreek & O'Donnell, 1992), and the quality of life questionnaires referred to earlier. Of course, other types of questionnaire are also potentially helpful in assessing headache sufferers, such as questionnaires investigating commonly associated problems (e.g., anxiety and depression), stress-related phenomena (e.g., daily hassles, appraisal, coping, and social support), and personality characteristics. 8.23.7.2 Psychological Treatment The literature on psychological treatment of headaches is very extensive and hence this

review will only be able to summarize key findings. More detailed reviews are available and include Gauthier, Ivers, and Carrier (1996), Holroyd and Penzien (1994), and Martin (1993). Psychological treatments, for which the research literature is limited and no outstanding results have been reported, will be omitted from the review. This includes EEG biofeedback, skin conductance biofeedback, hypnosis, transcendental meditation, operant therapy, and covert positive reinforcement. Before beginning the review, a few comments about terminology are necessary. Different names have been used by various writers for the same or substantially similar treatment techniques. In this review, consistent terminology will be used even when this results in departures from the original labels provided by the authors. The term thermal biofeedback will be used to cover all forms of thermal and temperature biofeedback; BVP (blood volume pulse) biofeedback will be used to include pulse amplitude biofeedback, vasomotor biofeedback, and vasoconstriction training; and cognitive coping training will be used to include cognitive therapy, cognitive-behavioral treatment, stress-coping training, and cognitive skills training. This section is divided into five subsections. The first two cover the main forms of individually administered treatment, namely, biofeedback training; and relaxation training and cognitive coping training. These subsections are followed by consideration of group therapy, side effects of psychological treatment, and a summary of the treatment literature. 8.23.7.2.1 Biofeedback training The main forms of biofeedback training for headaches are EMG biofeedback, thermal biofeedback and BVP biofeedback training. EMG biofeedback has usually been given from the forehead although other sites, such as the neck, have been used. The laboratory training is typically accompanied by instructions to practice at home daily. EMG biofeedback has been combined with other forms of biofeedback and with relaxation training. This type of biofeedback has usually been offered to tension-type headache sufferers but has also been used with migraineurs. Numerous studies have shown EMG biofeedback training to be superior to headache monitoring alone (i.e., no treatment) and to a variety of attention-placebo control conditions such as pseudofeedback (e.g., Budzynski, Stoyva, Adler, & Mullaney, 1973) and pseudotherapy (Holroyd, Andrasik, & Noble, 1980). Comparisons with other forms of psychological

Psychological Assessment and Treatment treatment, such as relaxation training and other forms of biofeedback training, usually fail to reveal significant differences. An exception was a study by Holroyd, Andrasik, and Westbrook (1977) that demonstrated that cognitive coping training was significantly more effective than EMG biofeedback training. An interesting development is a study by Arena, Bruno, Hannah, and Meador (1995) which showed that EMG biofeedback from the trapezius muscle was superior to EMG biofeedback from the traditional forehead site. Meta-analytic reviews suggest that the combination of EMG biofeedback and relaxation training is no more effective than EMG biofeedback training alone (Holroyd & Penzien, 1986). Paiva et al. (1982) compared the effectiveness of EMG biofeedback and diazepam. Improvement in headaches occurred more quickly with diazepam but relapse was a major problem with the pharmacological approach which was not the case for the psychological treatment. A review of long-term follow-up studies by Blanchard (1987) revealed that while maintenance is good up to 12 months, progressive deterioration in treatment gains occurs beyond this point. The mechanism of change with EMG biofeedback training is not clear as numerous studies have failed to find correlations between reductions in EMG and headaches (e.g., Martin & Mathews, 1978). A study by Holroyd et al. (1984) suggested that cognitive mechanisms explained treatment success rather than physiological changes, and that improvement was predicted by changes in self-efficacy and locus of control. Thermal biofeedback training usually involves training subjects to increase the temperature of their hands. Autogenic phrases are usually introduced to assist subjects, and subjects are typically encouraged to practice at home on a daily basis. Thermal biofeedback training has been combined with relaxation training and also with drug therapy. This type of biofeedback has usually been offered to migraineurs but has also been used with tensiontype headache sufferers. A number of studies have shown thermal biofeedback training to be superior to no treatment but comparisons with attentionplacebo control conditions have often failed to reveal significant differences. Reading (1984) could not differentiate between thermal biofeedback and pseudofeedback, for example, and Blanchard, Appelbaum, Nicholson, et al. (1990) reported the same result with pseudomeditation. Comparisons with other forms of psychological treatment, such as relaxation training, have generally led to nonsignificant findings.

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One exception is a study by Elmore and Turksy (1981) which found that BVP biofeedback was superior to thermal biofeedback training. A meta-analytic review concluded that thermal biofeedback plus autogenic training was not significantly more effective than thermal biofeedback alone, although the average improvement associated with the combined treatment was 13% higher than thermal biofeedback alone (Blanchard, Andrasik, Ahles, Teders, & O'Keefe, 1980). Thermal biofeedback training combined with relaxation training has been compared with pharmacological therapy. Mathew (1981) contrasted the psychological approach with ergotamine and found the former approach to be significantly more effective. Thermal biofeedback and relaxation training has been compared with propanolol in a number of trials and a meta-analytic review found that the two approaches produced almost identical results (Holroyd & Penzien, 1990). Mathew combined thermal biofeedback and relaxation training with either propanolol, amitriptyline, or propanolol plus amitriptyline. Amitriptyline did not enhance the effectiveness of the psychological treatment but adding propanolol yielded superior results. The review by Blanchard (1987) suggested that treatment gains achieved with thermal biofeedback training deteriorated after 12 months but other studies have produced more promising results for maintenance (e.g., Lisspers & Ost, 1990b). The mechanism of action of thermal biofeedback is not clear as a number of studies have failed to find a relationship between temperature control and headache change (e.g., Gauthier, Bois, Allaire, & Drolet, 1981). The results of a study by Mizener, Thomas, and Billings (1988) suggested that the Holroyd model of cognitive change might apply to thermal biofeedback as well as EMG biofeedback training. BVP biofeedback training involves providing subjects with feedback of pulse amplitude from the extracranial temporal artery. The aim is for a subject to learn to constrict the artery, thus achieving the same result as that from taking ergotamine. This form of biofeedback training has been used exclusively with migraineurs except for a few early case reports. A number of studies have shown BVP biofeedback training to be significantly superior to headache monitoring. Friar and Beatty (1976) used BVP biofeedback from an irrelevant site as an attention-placebo control condition and demonstrated that BVP biofeedback training from the standard site was significantly more effective for headache relief. Comparisons with other forms of psychological treatment

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have generally failed to find differential effects except for the study by Elmore and Turksy (1981) discussed earlier. Reich (1990) combined BVP biofeedback training with amitriptyline and found shortterm enhancement of the psychological approach. BVP biofeedback alone was superior to the combination of BVP biofeedback and amitriptyline, however, after eight months. Lisspers and Ost (1990b) published a five year follow-up of their BVP biofeedback study and reported good maintenance. The mechanism of action of BVP biofeedback is unclear as some studies have reported a relationship between BVP self-regulation skills and headache reduction (e.g., Lisspers & Ost, 1990a) and others have found no such relationship (Gauthier, Lacroix, Cote, Doyon, & Drolet, 1985). 8.23.7.2.2 Relaxation training and cognitive coping training Relaxation training has usually been in the form of progressive relaxation or autogenic training, and is typically accompanied by instructions to practice at home. It has been used with both migraineurs and tension-type headache sufferers. A number of studies have shown relaxation training to be superior to no treatment, and to a variety of attention-placebo control conditions, such as medication placebo (Cox, Freundlich, & Meyer, 1975) and pseudomeditation (Blanchard, Applebaum, Radnitz et al., 1990). Research has generally failed to find significant differences between relaxation training and various forms of biofeedback training or the combination of the two. One study found a trend for cognitive coping training to be superior to relaxation training (Sorbi & Tellegen, 1986), and another found a trend for enhancing the effectiveness of relaxation training by adding cognitive coping training (Blanchard, Applebaum, Radnitz et al., 1990). Blanchard (1987) concluded that long-term maintenance associated with relaxation training was good for tension-type headache sufferers but not for migraineurs. Since this report, however, Sorbi, Tellegen, and Du Long (1989) have documented good long-term results with migraineurs. The mechanism of relaxation training is not certain, but a study suggested that Holroyd's model of cognitive change might apply to relaxation training as well as EMG biofeedback training (Blanchard, Kim, Hermann, & Steffek, 1993). Two main variations of cognitive coping training have been developed. In the original formulation of this approach, Holroyd et al. (1977) focused on altering maladaptive cogni-

tive responses that were assumed to lead to headaches. In contrast, Bakal, Demjen, and Kaganov (1981) developed a treatment approach that emphasized modifying stress reactions to headaches. Martin's (1993) treatment model combined these two approaches. Cognitive coping training was originally developed for tension-type headache but has also been used for migraine. Studies have shown both variations to be superior to no treatment. Comparisons with attention-placebo control procedures have not been forthcoming but a number of studies have shown cognitive coping training to be equal to, or superior to, other treatments of proven efficacy. As noted earlier, one study reported cognitive coping training to be superior to EMG biofeedback (Holroyd et al., 1977) and another reported favorable results compared with relaxation training (Sorbi & Tellegin, 1986). The efficacy of cognitive coping training has also been demonstrated in a number of single group outcome studies (e.g. Bakal et al., 1981) and series of case studies (e.g., Anderson, Lawrence, & Olson, 1981). Cognitive coping training is associated with good long-term results for both tension-type headache (Blanchard, 1987) and migraine (Sorbi et al., 1989). The mechanism of change is not clear, but Newton and Barbaree (1987) did demonstrate that cognitive coping training leads to positive changes in appraisal and coping, which were correlated with reduction in headache intensity. 8.23.7.2.3 Group therapy The majority of studies on psychological treatment of headaches have used an individual format but a few studies have treated headache sufferers in groups of up to eight patients. Studies have shown group therapy using approaches such as relaxation training (Williamson et al., 1984) and cognitive coping training (Holroyd & Andrasik, 1978) to be superior to no treatment. Where comparisons have been made with attention-placebo control conditions, nonsignificant findings have often eventuated. However, Johnson and Thorn (1989) showed that cognitive coping training was as effective in the group format as the individual format. Holroyd and Andrasik (1978) reported that adding relaxation training to cognitive coping training in a group format did not lead to greater headache reduction than did cognitive coping training alone. Murphy, Lehrer, and Jurish (1990) compared the efficacy of group relaxation training and group cognitive coping training and found the latter to be superior.

Minimal Interventions and Prevention No long-term follow-up studies of group treatment have been reported nor studies of group treatment mechanisms. 8.23.7.2.4 Side effects of treatment A paper by Szajnberg and Diamond (1980) raised the issue of symptom substitution with biofeedback training for headache. These authors interviewed a few individuals who had successfully completed biofeedback training for migraine and reported that 67% experienced some form of ªsymptom substitution,º primarily psychosomatic symptoms or depression, accompanying or following the reduction of headache activity. This paper was criticized on methodological grounds by Haynes and Cuevas (1980), and other studies that have looked for symptom substitution have failed to find support for it (Budzynski et al., 1973). In fact there is much evidence to suggest that contrary to the findings of Szajnberg and Diamond, psychological treatment for headache seems to be associated with a reduction in psychosomatic symptoms generally and many beneficial behavioral, affective, and cognitive changes in addition to headache reduction. Reduction in psychosomatic symptoms with headache treatment has been demonstrated with a number of types of treatment using different measures (e.g., Knapp, 1981). Decreased use of medication following treatment has been reported in investigations of all the major treatment approaches (e.g., Gauthier et al., 1981). Beneficial changes in pain behavior such as avoidance behavior, verbal complaint behavior, and nonverbal behavior has been demonstrated in a number of studies (e.g., Radnitz, Appelbaum, Blanchard, Elliott, & Andrasik, 1988). Improvement in mood states such as depression, anxiety, fatigue, irritability, and anger have been reported (e.g., Martin et al., 1989). Cognitive changes including locus of control, self-efficacy to cope with headaches, perceived control over pain, and increased ability to cope with headaches have been shown in several studies (e.g., Holroyd et al., 1984). A few studies have suggested that psychological treatment for headaches is associated with positive changes in personality such as decreases in hysteria, neuroticism, and somatization (e.g., Janssen, 1983). 8.23.7.2.5 Summary of treatment findings (i) There is now strong evidence available that several psychological treatment approaches are effective in reducing migraine and tension-type headache, and that these gains

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are maintained for at least 12 months. The beneficial effects achieved with these treatments are more than attention-placebo effects. Metaanalytic reviews have calculated average percentage of improvement rates across studies, associated with biofeedback training and relaxation training, varying between 45% and 65%, in contrast to rates associated with placebo procedures varying between 12% and 38%. (ii) In addition to reducing headaches, psychological treatment leads to decreased medication consumption and a range of positive effects in the behavioral, affective, and cognitive domains. (iii) There is evidence to suggest that the treatment gains associated with thermal biofeedback training, BVP biofeedback training, relaxation training, and cognitive coping training are maintained for at least three to six years. Improvement achieved via EMG biofeedback training seems to deteriorate progressively after 12 months, although not back to pretreatment levels. (iv) Comparisons among different forms of psychological treatment have not demonstrated clear superiority of one or more particular approach. Comparisons between psychological and pharmacological approaches have indicated that the former are equal or superior to the latter. (v) There is little evidence available that combining psychological treatment approaches increases effectiveness, or that combining psychological and pharmacological treatments increases effectiveness, with the exception that the combination of thermal biofeedback, relaxation training, and propanolol seems particularly promising. (vi) It is not clear how psychological treatments achieve their effects. EMG biofeedback training, thermal biofeedback training, relaxation training and cognitive coping training may all be mediated by cognitive mechanisms.

8.23.8 MINIMAL INTERVENTIONS AND PREVENTION A series of studies and analyses have repeatedly made the point that current and future mental health and health needs far outstrip the capacities of present delivery systems (e.g., Winett, King, & Altman, 1991). This realization has led some researchers to explore new service delivery systems that are more cost-effective than individually administered treatment. Two such service delivery innovations are minimal interventions and prevention.

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8.23.8.1 Minimal Interventions Minimal interventions involve reducing the contact between therapists and patients by converting therapist-administered programs into largely self-administered programs. This can be accomplished by providing patients with manuals, tape recordings, and biofeedback devices that enable patients to pursue a treatment program at home. Such programs may be entirely self-administered or may be supported by limited contacts with therapists such as occasional visits and phone calls. Most of the therapist-administered programs for headaches have been converted into minimal interventions so that the literature includes home-based versions of relaxation training, cognitive coping training, a combination of these two approaches, relaxation training plus thermal biofeedback training, and a combination of all three approaches. The first published study of a minimal intervention for headaches compared clinicbased EMG biofeedback training and stress management training with a home relaxation program for tension-type headache (Steger & Harper, 1980). Only the clinic-based program was successful in significantly reducing headaches. Other early studies had more success, however. Sherman (1982) provided tension-type headache sufferers with relaxation tapes and all but one subject showed a substantial decrease in headache activity. Kohlenberg and Cahn (1981) contrasted the impact of providing migraineurs with an experimental book that contained instructions for thermal biofeedback training, relaxation and cognitive coping training, and a control book. The experimental book was associated with a 62% decrease in headaches compared with a 14% decrease for the control book. Most of the home-based formats have been compared with no-treatment control conditions and have consistently been shown to be superior (e.g., Appelbaum et al., 1990; Blanchard, Applebaum, Nicholson et al., 1990). Comparisons with attention-placebo control conditions have generally been lacking except for the study by Kohlenberg and Cahn (1981) referred to above. Several studies have compared the homebased format with the clinic-based format and have consistently found no significant differences in effectiveness but large differences in cost-effectiveness in favor of the home-based format (e.g., Blanchard, Andrasik, Appelbaum et al., 1985; Teders et al., 1984). Comparisons among the different approaches to home-based treatment programs have often suggested equal efficacy. One exception is a study by Tobin, Holroyd, Baker, Reynolds, and

Holm (1988) that found the combination of relaxation plus cognitive coping training to be superior to relaxation training alone. A number of studies have compared home-based treatment with drug approaches. Relaxation plus cognitive coping training was shown to be superior to amitriptyline (Holroyd, Nash, Pingel, Cordingley, & Jerome, 1991), and thermal biofeedback plus relaxation training was shown to be equal to ergotamine tartrate (Holroyd et al., 1988). Penzien, Johnson, Carpenter, and Holroyd (1990) reported that the combination of thermal biofeedback, relaxation, and cognitive coping training was equal to propanolol, and Holroyd et al. (1995) found that adding propanolol to thermal biofeedback and relaxation training increased the effectiveness of the package. One study showed good maintenance over two years with thermal biofeedback and relaxation training (Blanchard et al., 1988). No studies have looked at treatment mechanisms of minimal interventions.

8.23.8.2 Prevention The public health field distinguishes three conceptually distinct levels of prevention: (i) primary, reduction of new cases of disorder or promotion of health competencies; (ii) secondary, efforts directed at individuals or groups determined at risk for or showing early signs of disorders; and (iii) tertiary, equivalent to traditional rehabilitation approaches (Burgoyne & Jason, 1991). Writers about the medical management of primary headache talk about prevention in the context of differentiating between medication prescribed for aborting attacks vs. medication prescribed for preventing attacks (see Section 8.23.6.2). Such an approach constitutes tertiary prevention as the disorder has already become established. Writers about the psychological management of primary headaches rarely discuss whether treatment is aimed at coping with headaches or at preventing headaches occurring. A case can be made that most psychological approaches should be beneficial both for countering attacks and preventing attacks. It was suggested in Section 8.23.7.2 that EMG biofeedback, thermal biofeedback, and relaxation training might operate via cognitive changes such as increased self-efficacy and internal locus of control; and that cognitive coping training may operate through increased positive appraisal and coping thoughts. Such cognitive changes should help headache sufferers cope more adequately with headaches but should also help them cope more effectively with stressful situations that could

Adherence and Prognosis trigger headaches. Even if the mechanism of EMG biofeedback, thermal biofeedback, and relaxation training is closer to their rationales, and involves reduced arousal/tension, the same argument could be made for both abortive and preventive beneficial effects. BVP biofeedback training is somewhat different as it aims to promote constriction of the temporal arteries, which according to traditional models of migraine would be advantageous during attacks but not between headaches. Lisspers and Ost (1990a) recognized this fact in a study in which they trained subjects either to constrict the arteries and practice the skill during headaches, or to dilate the arteries and practice the skill during periods of stress (i.e., the preheadache stage). Parenthetically, the former approach proved more successful. Should primary or secondary prevention approaches be developed for headaches? With respect to secondary prevention, adolescent and young adult females with a strong family history of headaches would be an obvious target group, particularly if they scored high on measures of anxiety, depression, and stress. Most psychologists see headache patients for the initial consultation around 15 years after headache onset, by which time the dynamics have become complex owing to reactions to the disorder and reactions to the reactions. Any innovations that prompted earlier referrals to psychologists would seem highly desirable. Primary prevention specifically for headaches appears difficult to justify but any broad-based health enhancement program or stress management program should reduce the incidence of headache disorders. 8.23.9 ADHERENCE AND PROGNOSIS 8.23.9.1 Adherence The issue of adherence has received surprisingly little attention in either the medical or psychological literature on headache. A study by Packard and O'Connell (1986) interviewed 100 patients and concluded that over 50% of headache sufferers failed to adhere properly to drug treatment regimes. Fitzpatrick, Hopkins, and Harvard-Watts (1983) found that one year after starting drug therapy, only 24% of patients reported that they had used headache medication exactly as instructed. In a study of compliance with ergotamine use, Holroyd et al. (1988) found that 70% of patients failed to make optimal use of this medication. Holroyd et al. (1989) attempted to increase adherence with instructions for use of ergotamine by developing a brief adjunctive selfmanagement training program administered by

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an allied health professional. The self-management intervention included one brief face-toface session following a neurologist's prescription of abortive medication, and three telephone calls designed to identify and correct problems with ergotamine use. In a comparison between patients who received standard abortive therapy and patients who received abortive therapy plus the self-management intervention, the latter group attempted to abort a greater percentage of their migraine attacks (70% vs. 40%) and showed larger reductions in headaches (40% vs. 26%). Another problem with medical management that has been addressed is compliance with attending follow-up visits (Spierings & Miree, 1993). This study found that 41% of patients attenting a specialist headache clinic had not complied with the recommended follow-up visit. The most frequently mentioned reasons for noncompliance were dislike of the clinician seen and seeking care elsewhere. With respect to psychological management, drop-out rates are relatively low, averaging around 10±15% (e.g., Martin et al., 1989). More detailed studies pertaining to adherence are largely lacking, however. In one of the few studies in this area, Collins and Thompson (1979) investigated compliance with self-monitoring instructions. Using three objective procedures for detecting inaccurate recording, the results indicated that 40% of subjects were noncompliant. A more subjective measure suggested that this figure was a conservative estimate. Collins and Martin (1980) suggest enhancing recording compliance by reducing the demands of the procedures. While several authors have emphasized the importance of monitoring compliance with instructions for practicing relaxation at home (e.g., Blanchard & Andrasik, 1982), a review by Hillenberg and Collins (1982) reported that only 19% of studies assessed compliance even with self-report measures. Gutkin, Holborn, Walker, and Anderson (1992) evaluated adherence to relaxation home practice instructions using a microcomputer-based method that required the patient to squeeze a hand control when instructed to tense a muscle. Of three patients in the study, the percentages of the time that they met two compliance criteria were 73%, 37%, and 8%. Improvement in headaches was greater with higher compliance. 8.23.9.2 Prognosis The evidence with respect to the natural history of headache disorders is limited. Childhood headaches were once viewed as a transient

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phenomenon that the child would outgrow (Ryan, 1954), but there is increasing evidence from longitudinal studies to suggest that this is not so for the majority of children. Bille (1981), for example, found that 60% of children aged between 7 and 15 years who were diagnosed as suffering from migraine continued to report symptoms into adulthood. Similarly, Joffe, Bakal, and Kaganov (1983) stated that most adult headache sufferers report that their headaches began in childhood. Many studies have reported predictors of success for psychological treatment but results have not always been consistent. A number of studies have reported age to be a significant predictor of treatment success (e.g., Blanchard, Andrasik, Evans, & Hillhouse, 1985). On the other hand, other studies have found a nonsignificant relationship (e.g., Martin et al., 1989), and studies of psychological treatment with the elderly have reported very positive results (Arena, Hannah, Bruno, & Meador, 1991). Diagnosis has failed to predict success for EMG biofeedback training (Bakal & Kaganov, 1977), cognitive coping training (Bakal et al., 1981), self-management training and cognitive therapy (Martin et al., 1989), and relaxation training (Williamson et al., 1984). In contrast, functional characteristics of headaches have emerged as significant predictors of treatment success although only weakly (Martin, Milech, & Nathan 1993). Hence, headaches that were precipitated by negative emotions, and headaches that were followed by the supportive partner reactions of encouraging the sufferer to stop what they were doing and sit or lie down, responded best to psychological treatment. A number of studies have reported that patients who suffer from continuous or near continuous headaches respond less well to psychological treatments than do patients who suffer from episodic headaches (e.g., Blanchard, Appelbaum, Radnitz, Jaccard, & Dentinger, 1989). Similarly, poor response is associated with high levels of pretreatment headache activity (e.g., Jacob, Turner, Szekely, & Eidelman, 1983) and high levels of medication consumption (e.g., Michultka, Blanchard, Appelbaum, Jaccard, & Dentinger, 1989). Presence of depressive symptoms prior to treatment also suggests poor prognosis (e.g., Levine, 1984). Although some studies have reported significant therapist effects, therapist variables such as warmth, empathy, genuineness, competence, and likeability do not predict treatment response (e.g., Martin et al., 1989). Several investigators have found regularity of home relaxation practice to be a significant predictor of treatment success (e.g., Blanchard et al., 1983), and Solbach, Sargent, and Coyne (1989)

reported that quality of home practice was a better predictor than quantity of home practice. 8.23.10 PROFESSIONAL ISSUES This final section will focus on a single issue, namely the relationship between medicine and psychology in the headache field, but will examine the issue as it manifests in a number of different domains. First to be considered will be the question of how headaches should be conceptualized. Medicine approaches the conceptualization of headaches as it does other disorders: a classification system has evolved and the task for practitioners is to formulate a diagnosis. The rationale of this approach is that it leads to the identification of headache mechanisms and consequently suggests the most appropriate treatment. Psychologists have a history of arguing for dimensional over categorical models, and for functional over symptomatological analysis. Although there is evidence pertaining to the problems associated with the current medical conceptualization of primary headaches, psychologists have been curiously reluctant to explore alternatives. Medical researchers have recognized the importance of understanding trigger factors for headaches but have largely ignored other potentially important controlling variables. The reactions to headaches of the sufferers and significant others have received little attention in the medical literature, for example, despite the etiological significance of such reactions. The psychosocial and developmental context in which headaches occur has also received little attention. Integration between taxonomic and functional approaches should be explored. Differential diagnosis between migraine and tension-type headache may be useful for medical practitioners in deciding, for example, between alternative symptomatic medications, such as whether to prescribe sumatriptan. The literature shows, however, that it is of limited value for psychologists. In contrast, research has demonstrated that whether headaches are accompanied by high stress levels has implications for choice of psychological treatments (Sorbi et al., 1989; Tobin et al., 1988), as does whether headaches are accompanied by depression (Martin et al., 1989). Medical investigation of headaches is clearly a necessary part of headache management to differentiate primary and secondary headaches. Self-monitoring has been a major component of psychological assessment for many years, but has received less attention in the medical literature. This situation is changing, however, with medical researchers increasingly advocating the value of self-monitoring.

References Medical practitioners predominantly treat headaches with drugs while psychologists treat headaches with psychological approaches. Evidence pertaining to the efficacy of combining a psychological approach (thermal biofeedback training plus relaxation) with a pharmacological approach (propanolol) suggests the importance of further research investigating combined technologies. Psychological therapy, perhaps involving cognitive coping training, and sumatriptan seems an obvious combination to investigate. Also, psychologists should bring their skills to bear more on the problem of increasing adherence with headache medication. An area in which greater collaboration between psychologists and the medical profession is desirable is the referral of headache sufferers to psychologists. The average referral occurs after headache sufferers have endured headaches for around 15 years. The opportunity for earlier psychological intervention would be advantageous. There are undoubtedly some settings in which psychologists and medical practitioners work together harmoniously and productively in the management of headaches. Overall, however, there seems to be a need for increasing interaction between researchers and practitioners from psychology and medicine. The author's own experience of attending conferences on headaches, for example, is that there are a handful of psychologists among hundreds of medical scientists and practitioners, predominantly neurologists. When medical practitioners look at alternative approaches to drug treatment, they often turn to approaches such as acupuncture and chiropractic despite the lack of research evidence that such approaches are of value in the management of primary headache. Psychologists need to collaborate with medical practitioners but psychology has much to offer medicine in understanding and managing headaches. 8.23.11 REFERENCES Ad Hoc Committee (1962). Classification of headache. Journal of American Medical Association, 179, 717±718. Allan, W. (1930). The inheritance of migraine. Archives of Internal Medicine, 42, 590±599. Al-Rajeh, S., Bademosi, O., Ismaii, H., & Awada, A. (1990). Headache syndromes in the Eastern Province of Saudi Arabia. Headache, 30, 359±362. Anderson, N.B., Lawrence, P.S., & Olson, T.W. (1981). Within-subject analysis of autogenic training and cognitive coping training in the treatment of tension headache pain. Journal of Behavior Therapy and Experimental Psychiatry, 12, 219±223. Andrasik, F., Blanchard, E.B., Arena, J.E., Saunders, N.L., & Barron, K.D. (1982). Psychophysiology of recurrent headache: Methodological issues and new

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Lisspers, J., & Ost, L. G. (1990b). Long-term follow-up of migraine treatment: Do the effects remain up to six years? Behaviour Research and Therapy, 28, 313±322. Lucas, R. N. (1977). Migraine in twins. Journal of Psychosomatic Research, 20, 147±156. Marazziti, D., Toni, C., Pedri, S., Bonuccelli, U., Pavese, N., Nuti, A., Muratorio, A., Cassano, G. B., & Akiskal, H. S. (1995). Headache, panic disorder and depression: Comorbidity or a spectrum? Neuropsychobiology, 31, 125±129. Marcus, D. A., Nash, J. M., & Turk, D. C. (1994). Diagnosing recurring headaches: IHS criteria and beyond. Headache, 34, 329±336. Martin, M. J. (1972). Muscle-contraction headache. Psychosomatics, 13, 16±19. Martin, N. J., Holroyd, K. A., & Rokicki, L. A. (1993). The Headache Self-efficacy Scale: Adaptation to recurrent headaches. Headache, 33, 244±248. Martin, P. R. (1983). Behavioural research on headaches: Current status and future directions. In K. A. Holroyd, B. Schlote, & H. Zenz (Eds.), Perspectives in research on headaches (pp. 204±215). Lewiston, NY: Hogrefe. Martin, P. R. (1985). Classification of headache: The need for a radical revision. Cephalalgia, 5, 1±4. Martin, P. R. (1993). Psychological management of chronic headaches. New York: Guilford Press. Martin, P. R., Marie, G. V., & Nathan, P. R. (1992). Psychophysiological mechanisms of chronic headaches: Investigation using pain induction and pain reduction procedures. Journal of Psychosomatic Research, 36, 132±148. Martin, P. R., & Mathews, A. M. (1978). Tension headaches: Psychophysiological investigation and treatment. Journal of Psychosomatic Research, 23, 389±399. Martin, P. R., Milech, D., & Nathan, P. R. (1993). Towards a functional model of chronic headaches: Investigation of antecedents and consequences. Headache, 33, 461±470. Martin, P. R., Nathan, P. R., & Milech, D. (1987). The Type A behaviour pattern and chronic headaches. Behaviour Change, 4, 33±39. Martin, P. R., Nathan, P. R., Milech, D., & van Keppel, M. (1989). Cognitive therapy vs. self-management training in the treatment of chronic headaches. British Journal of Clinical Psychology, 28, 347±361. Martin, P. R., & Seneviratne, H. M. (1997). Trigger factors of benign recurring headaches: The role of negative affect and hunger. Health Psychology, 16, 1±9. Martin, P. R., & Soon, K. (1993). The relationship between perceived stress, social support and chronic headaches. Headache, 33, 307±314. Martin, P. R., & Teoh, H. J. (1997a). Effect of visual stimuli and a stressor on head pain. Manuscript submitted for publication. Martin, P. R., & Teoh, H. J. (1997b). Headache triggers: To avoid or not to avoid, that is the question. Manuscript submitted for publication. Martin, P. R., & Theunissen, C. (1993). The role of life event stress, coping and social support in chronic headaches. Headache, 33, 301±306. Martin, P. R., & Todd, J. (1996). Effect of noise and a stressor on head pain. Unpublished manuscript. Mathew, N. T. (1981). Prophylaxis of migraine and mixed headache: A randomized controlled study. Headache, 21, 105±109. Medina, J. L., & Diamond, S. (1978). The role of diet in migraine. Headache, 18, 31±34. Melzack, R., & Wall, P. D. (1988). The challenge of pain. Harmondsworth, UK: Penguin. Michel, P., Dartigues, J. F., Henry, P., Tison, S., Auriacombe, S., Brochet, B., Vivares, C. K., Salamon, R., & the GRIM (1993). Validity of the International

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.24 Chronic Pain SHIRLEY PEARCE and ANNE-LISE McDONALD University of East Anglia, Norwich, UK 8.24.1 INTRODUCTION

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8.24.2 WHAT IS PAIN?

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8.24.3 PSYCHOLOGICAL INFLUENCES ON PAIN

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8.24.3.1 8.24.3.2 8.24.3.3 8.24.3.4

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Perception of Control Mood Personality Social and Environmental Factors

8.24.4 CURRENT MODELS OF PAIN

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8.24.4.1 Psychogenic or Organic Pain

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8.24.5 PAIN ASSESSMENT

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8.24.6 ASSESSMENT OF PAIN BEHAVIORS

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8.24.6.1 Direct Observation of Pain Behavior 8.24.6.2 Electromechanical Devices 8.24.6.3 Self-observation

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8.24.7 MEASUREMENT OF THE SUBJECTIVE COMPONENT OF PAIN: MEASURING THE QUALITY AND INTENSITY OF PAIN

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8.24.7.1 Rating Scales 8.24.7.2 McGill Pain Questionnaire 8.24.7.3 Assessment of Mood in Pain Patients 8.24.8 PSYCHOLOGICAL INTERVENTIONS FOR PAIN

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8.24.8.1 Contingency Management 8.24.8.2 Multimethod: Developments Since Fordyce's Work

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8.24.9 COGNITIVE COPING METHODS

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8.24.9.1 Altering Beliefs 8.24.10 EARLY INTERVENTION

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8.24.11 CONCLUSION

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8.24.12 REFERENCES

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are over 50 million trauma injuries, many associated with high levels of pain (Chapman & Turner, 1986) and a further 15 million people being diagnosed with cancer with moderate to severe pain. Of these, 40±45% of patients experience such pain in the very early stages and 60±80% in the advanced stages of disease (Bonica, 1979). In addition to pain associated

8.24.1 INTRODUCTION Pain is the primary symptom for which people seek medical treatment, and estimates suggest that over 70 million (80%) of all consultations to physicians in the USA occur because of pain (National Center for Health Statistics, 1986). In addition, in the USA there 557

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with disease or injury, medical and surgical procedures often produce pain. For example, in 1980 in USA, 23 million surgical procedures were conducted with more than 70% of the individuals undergoing these procedures reporting moderate to severe postoperative pain (Bonica & Benedetti, 1980). It is also important to note that any statistics such as those quoted above will only represent the smallest proportion of pain in the population, since most people endure quite large amounts of pain without seeking medical help (Von Korff, Dworkin, LeResche, & Kruger, 1988). For example, an epidemiological study of pain in adults in Seattle reported a prevalence of recurrent episodes of pain of 37%, with 8% reporting severe persistent pain. Pain is, therefore, a common symptom and experience, and its management presents a tremendous challenge to society, particularly to doctors and other health professionals. The impact of pain is not restricted to the health professions alone, however, since the size of the pain problem, particularly the chronic pain problem, affects all aspects of economic and professional activity. Most investigation of the economic impact of pain has focused on the back pain problem. Back pain alone costs the UK National Health Service (NHS) ƒ480 million per annum, and the cost has risen over recent years. In the USA $60 billion per year are spent on chronic pain problems (Bonica, 1980). The increasing size of the back pain problem led to the commissioning, in the UK, of the Clinical Standards Advisory Group (CSAG) report which attempts to identify the size of the problem and brings together some of the basic costs and existing evidence about effective approaches to management. The CSAG report (CSAG, 1994) estimates a population prevalence for back pain of 16.5 million, resulting in 2.4 million outpatient attendances and 12 million GP consultations. Much of the cost of back pain is contributed to by the relatively small proportion of back pain patients who continue to have back pain after about three months. A significant proportion of these patients will still be disabled by back pain at one year and the management of this long-term chronic group has attracted widespread interest and concern. It should be remembered that these figures represent the impact of back pain alone and, although this pain commonly represents approximately 60% of a pain clinic population, it is by no means the whole problem and the full cost of chronic pain is likely to be substantially greater. Chronic pain has been distinguished from acute pain on the basis of two main variables, function and duration. Definitions based on

function highlight the role of acute pain as a warning signal. The value of chronic pain is less clear, although it may serve to promote the inactivity which is sometimes necessary for successful recovery from serious injury (Bonica, 1977; Wall, 1979). There is little empirical support for a functional distinction between acute and chronic pain, and researchers and clinicians have usually based their working definitions of chronicity on the duration of pain. Pain is usually considered chronic if it persists for longer than six months (Sternbach, 1974). This cutoff of six months has, however, been rather arbitrarily determined, and recent studies looking at the prognosis for acute back pain suggest that three months may be a more appropriate cutoff (The Classification of Chronic Pain, 1986; Volinn, van Koevering, & Loeser, 1991).

8.24.2 WHAT IS PAIN? There have been numerous attempts to define pain and a single, generally accepted, definition has emerged. Melzack and Wall (1988) defined it as an aversive, personal, subjective experience, influenced by cultural learning, the meaning of the situation, attention, and other psychological variables, which disrupts ongoing behavior and motivates the individual to attempt to stop the pain. This multidimensional view of pain is relatively recent and earlier views considered pain as a sensation. Early theories of pain perception, most particularly the specificity theory (Mountcastle, 1974) and the pattern theory (Crue & Carregal, 1975) view pain as primarily a sensory experience, resulting from activity in the peripheral pain receptors (nociceptors). These sensory theories view the experience of pain as a result of stimulation of specific nociceptors that send afferent stimulation to the brain via the pain pathways. This input to the brain, leading to stimulation of pain specific areas of the sensory cortex, was thought to lead to conscious awareness of pain. The intensity of the pain experienced was thought to be closely related to the degree of stimulation of the pain receptors and hence the extent of activity in the pain pathways. This direct line transmission model of pain is now thought to be oversimplistic and Melzack and Wall (1965) brought together a wealth of physiological, anatomical, and psychological evidence which shows that the experience of pain is not directly related to the extent of tissue damage or the level of activity in the pain receptors. As far as psychological factors are concerned, processes such as attention, or the individual's sense of control over the pain

Psychological Influences on Pain stimulus can intervene to determine the extent of the pain and distress associated with a given level of tissue damage. In order to accommodate these findings, Melzack and Wall proposed the ªgate control theoryº of pain in 1965. This essentially provided an anatomical basis for the view that sensory input could be modulated by certain physiological and psychological processes. Input from the peripheral nociceptors was thought to pass through a neural gate in the spinal cord before being transmitted to the brain. This gate may be opened or closed according to the relative activity in small and large afferent fibers, for example touch receptors, as well as the activity in fibers descending from central cortical areas, hence providing a mechanism by which psychological factors can exert an influence over pain perception. The theory is described at length in a number of places (Melzack, 1973; Melzack & Wall, 1988; Wall, 1976) and will not be discussed in detail here. The basic concept of input modulation is now widely accepted and the gate control theory is viewed as one of the most important theoretical advances in recent pain research. It is now clear that any effective model of pain must be multidimensional and provide for the possibility that physical and psychological aspects of pain may not be perfectly related. Examples of the range of psychological factors that influence pain perception are outlined below. 8.24.3 PSYCHOLOGICAL INFLUENCES ON PAIN The range of psychological factors that have been shown to influence the level of pain intensity and distress associated with a given level of tissue damage include the perception of control, mood, personality, social, and environmental factors. 8.24.3.1 Perception of Control Fiske and Taylor (1984) make a distinction between cognitive control, such as distraction or dissociation, and behavioral control where a subject is able to do something to reduce the pain or remove the pain stimulus. For example, evidence that subjects' control over the pain stimulus influenced their experience emerged when Bowers (1968) showed that subjects endure more pain when they are able to turn off the aversive stimulus, even though they often elected not to do so. Presumably the knowledge that they were able to remove themselves from the aversive stimulus enabled them to cope with the pain. Others have confirmed this link

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between pain tolerance and the knowledge that the pain can be controlled. An important practical example of behavioral control of pain is the development of patient controlled analgesia (PCA) in the management of postoperative pain. In PCA, patients self-administer postoperative analgesic via an easily controlled pump injection system. Mackie, Coda, and Hill (1991) showed that patients take less analgesic morphine from a PCA machine than they do if it is administered by a nurse or obtained through continuous infusion. A major report on pain after surgery produced in 1990 by the Royal Colleges of Surgeons and Anaesthetists concluded that PCA results in better pain management, reduced use of opiates, and earlier discharge compared with intramuscular therapy. 8.24.3.2 Mood The interrelationship between depression and pain perception has been the subject of a variety of studies (Gupta, 1986; Pilowsky, 1988; Romano & Turner, 1985; Roy, Thomas, & Matas, 1984). There is still, however, considerable debate over the direction and nature of the relationship. A few studies have suggested that depression may be a cause of chronic pain, where pain is used as a method of expressing or masking of depression (Beutler, Engle, OroBeutler, Daldrup, & Meredith, 1986; Blumer & Heilbronn, 1982). Other studies suggest that pain is more likely to be the cause of the depression and that successful treatment of the pain leads to an improvement in mood (Atkinson, Slater, Patterson, Grant, & Garfin, 1991; Gupta, 1986; Romano & Turner, 1985; Roy, 1985; Widmer & Cadoret, 1978). Waddell and Turk (1992) suggest that it is more useful to regard both depression and anxiety as forms of distress. In their study of the relationship between anxiety and acute and chronic pain, Fordyce and Steger (1979) suggested the relationship for the two types of pain is quite different. Anxiety is experienced by acute pain sufferers but passes with the successful treatment of the pain, whereas in chronic pain, because the treatments often have little effect, patients become more anxious, which can in turn increase pain. 8.24.3.3 Personality In 1959 Engel introduced the concept of a pain-prone personality. This suggested that certain personality types are more likely to have repeated episodes of chronic pain. He characterized the pain-prone personality by

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some specific traits, including: ªexcessive guilt, and a predisposition to use pain to atone for guilt, a strong unfulfilled aggressive drive, a history of suffering and defeat, intolerance of success, the use of pain as a replacement for loss when a relationship is threatened, and a tendency to masochistic sexual developmentº (Horn & Munafo, 1997, p. 82). Although there have been attempts to identify the pain-prone personality there is little empirical evidence to support the model (Horn & Munafo, 1997; Turk & Melzack, 1992). Indeed Sternbach and Timmermans (1975) suggest that so-called personality differences may be a result of the long term experience of pain as much as a cause and that personality difficulties are reduced by the successful treatment of pain. Studies of experimentally induced pain suggest that the personality dimensions of extroversion± introversion and neurotism may affect pain experience. Barnes (1975) showed that extroverts have higher levels of pain tolerance than introverts and Eysenck (1961), in a study of labor pain, found a relationship between extraversion and pain behavior. The practical implications of these relationships between pain and personality are unclear because the opportunities for changing personality traits are limited. 8.24.3.4 Social and Environmental Factors Craig (1986) outlined a number of studies that demonstrated that the behavior of other individuals can influence both subjective and behavioral components of pain. They showed that the presence of a pain-tolerant model significantly increased the pain tolerance of naive subjects exposed to experimentally induced pain. Helman (1990) extended this to outline the role of social learning in pain and concluded that different social and cultural groups respond to pain in different ways depending on their cultural background and learning history. Perhaps the most marked examples of social influences on pain experience are provided by the Indian hook-swinging ceremonies, where in an annual ritual a person (celebrant) is selected to represent the power of the gods. The celebrant has steel hooks inserted under the skin and muscles on his back. Ropes are then used to attach him to a specially adapted cart. They travel to each village where the celebrant blesses the children and crops. After the blessing he swings free on the hooks. The chosen man shows no sign of pain and appears to be in a state of exaltation (Melzack & Wall, 1988). In clinical practice the implications of the social environment of the ward or clinic setting

on patient's experience of pain has received very little attention. For example, very little is known about the impact on a postsurgical patient of being placed in a ward where other patients may be demonstrating significant pain behavior. Craig's (1978) studies on experimentally induced pain would suggest that the patient's pain experience would be increased in the presence of other patients in pain. 8.24.4 CURRENT MODELS OF PAIN For this reason recent models of pain use paradigms more akin to current models of emotion than sensation (Fordyce, 1986; Leventhal, 1984). Fordyce, for example, suggests that pain is a multidimensional experience involving affective and behavioral elements as well as the sensory experience. The relationship between these different components of pain is not linear and, depending on external environmental and internal factors, an individual may perceive a given level of tissue damage as either very painful or relatively painless. This is proposed for all pain, both acute and chronic, but Fordyce argues that, as pain persists, the relative impact of the nociceptive process becomes less important in influencing suffering and pain behaviors while other variables become more predominant. Fordyce, Brockway, Bergman, and Spengler (1986) has argued that this explains the failure of conventional medical and surgical interventions to reduce chronic pain. Fordyce (1978) suggests that activity in the physiological system is perceived at a subjective level both as a sensation (e.g., burning or pricking) and as an unpleasant affect (e.g., distress or discomfort). He further suggests that this negative affect motivates pain behaviors (wincing, taking pills), which are aimed at communicating the pain experience to those around and at reducing the intensity of the pain experience. This view has become known as the three-systems (physiological, subjective, and behavioral) view of pain. The further away from the level of nociception, the more other factors, besides the level of physiological activity, are likely to become implicated in the pain experience. For example, social and cultural variables are likely to influence pain behaviors in chronic pain, perhaps as much as activity in the nociceptive fibers. In Fordyce's view the behavioral consequences of pain will be influenced by environmental contingencies and maintained by operant learning processes, irrespective of the level of the underlying pathology, and he has developed a treatment program based on operant principles, which is discussed later.

Current Models of Pain Karoly (1985) has extended the three-systems model to include two additional factors: (i) lifestyle impact, for example, marital distress or vocational change; and (ii) information processing or central control, for example, coping styles, problem-solving skills, and health beliefs. Philips (1987) outlines a model that considers the nature of the relationship between two of Karoly's response levels. It describes the influence of cognitions on pain behavior. Philips places emphasis on patients' expectations about the effects of their actions and their beliefs about their capacity to control pain episodes. She suggests that if self-efficacy is low, patients avoid activities that might provoke an increase in pain. In this way pain behaviors are viewed as avoidance behaviors that have the effect of maintaining the pain problem. The therapeutic implication of her model is that strategies that increase the patients self-efficacy will lead to increases in behavior and improved quality of life. A model which possibly has greater predictive power is that of Leventhal (1984), which uses very different concepts drawn from an information-processing view of emotion. In common with more recent models of pain, he proposes that the notion of a linear relationship between noxious stimulation and pain intensity must be discarded. Instead he views pain processing as occurring at three hierarchically organized levels. The first involves the activation by a painful stimulus of an innate set of expressive motor reactions to environmental stimuli. Even very young children show specific patterns of facial expressions and it is possible to discriminate between different experiences such as pain, fear and anger with high inter-rater reliability. The second is the automatic encoding in memory of the emotional experience. This leads to the gradual development of a schematic system that which provides a record of the stimulus factors and their associated affective and expressive motor responses. The third level involves conscious beliefs and attitudes, comprising a set of abstract rules about emotional episodes and associated voluntary responses that arise over time, a consequence of selfobservation. A major strength of Leventhal's model is that it suggests that the experience of pain may be stimulated by physiological activation (bottomup processing) or by top-down processing. Leventhal views the experience of pain as being stimulated by the activation of pain schema either as a result of activity at a conscious conceptual level (thoughts, attitudes, or beliefs) or as a result of activity at the expressive motor level (nociception) or both. The nature and process of the experience are therefore the same

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whether the pain is initiated by primarily topdown or bottom-up processes. This is in marked contrast to conventional medical and lay views of pain that perpetuate a psychogenic/organic distinction by considering pain to be either real and caused by organic factors, or not real or imaginary and caused by psychological factors. Having explanations for so-called organic and psychogenic pain within the same conceptual framework is important, and helps redress the view inherent in both lay and medical views of pain that there are two kinds of pain. The history and validity of this distinction are briefly considered because it has marked clinical and practical implications. 8.24.4.1 Psychogenic or Organic Pain Pain, for which no clear physical cause can be identified, has often been labeled psychogenic in origin. It is assumed that patients have some emotional, motivational, or personality problem as the primary cause of their pain behaviors (Fordyce, 1978). For example, Engel (1959) identified a subgroup of patients without detectable lesions who, he suggested, were characterized by excessive guilt feelings, intolerant of personal success, and had family histories featuring pain and aggression. However, there is no clear evidence that these factors play a causal role and indeed there is some suggestion that psychological disturbance may be the result, rather than the cause of chronic pain. For example, although pain patients show higher scores on the hysteria, depression and hypochondriasis scales of the Minnesota Multiphasic Personality Inventory (MMPI), these scores decrease significantly after successful treatment of the chronic pain problem (Sternbach, 1974; Sternbach & Timmermans, 1975). The distinction between organic and psychogenic pain is therefore probably of little value, since it is now recognized that psychological factors play a significant part in all pain. Nevertheless, this deeply entrenched concept does offer medical specialists a convenient label for those patients with unidentified pathology whose pain remains intractable despite the best efforts of practitioners to cure it. There is a concern that some patients labeled psychogenic, and for whom organic disease has been apparently excluded, may indeed have some underlying physical condition that is as yet undetected or unidentified. Either way, the term does little to serve the interests of patients or practitioners, and for the purposes of this chapter no further distinction is made, since the methods described are of equal relevance to the assessment of pain, whether or not organic pathology is identified.

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8.24.5 PAIN ASSESSMENT In view of the multidimensional nature of the experience of pain there are many aspects of both acute and chronic pain that clinicians and researchers may want to assess and the most appropriate methods chosen will be greatly influenced by the purpose for which the assessment is made. If the question to be addressed by the measurement of pain is ªDoes this drug X reduce the intensity of a particular aversive medical procedure, such as wisdom tooth extraction?º then the appropriate measures will be those that focus on assessing pain intensity or distress. If the question is ªIs this multidisciplinary program for chronic pain effective?º then the range of dimensions that will need to be sampled may be much broader and include measures of pain behavior, lifestyle impact, social and marital functioning, as well as the more obvious intensity and affect measures. In practice there are three main issues that clinicians and researchers address in pain assessment: (i) To determine the suitability of a patient for treatment. (ii) To determine the individual patient's strengths and weaknesses so as to match or tailor a treatment program effectively. (iii) To evaluate change during treatment and at follow-up periods. In considering methods appropriate for each assessment question, the measures for the assessment of pain behaviors, pain intensity and distress, pain cognitions, and physiological aspects of pain are described separately. A full review of pain assessment methods can be found in Turk and Melzack (1992). 8.24.6 ASSESSMENT OF PAIN BEHAVIORS The term ªpain behaviorº has been applied to a wide range of different activities. These include demands for medication, verbal complaints of pain, nonverbal responses such as gasping or grimacing, pain-relieving activities (e.g., rubbing or heating an affected location), and gross negative behaviors, such as not getting out of bed and avoiding activities that may exacerbate pain. The measures described in the following sections are aimed at measuring these specific pain behaviors, but it must be remembered that the term pain behaviors in the broadest sense includes Karoly's concept of lifestyle impact, which may require more complex assessment. Marital distress, social interactions, recreational activities, employment status, and domestic arrangements would be included in this category. Many aspects of

such lifestyle impact are incorporated in the widely used Sickness Impact Profile (Bergner, Bobbitt, & Pollard, 1976), adapted for use with chronic back pain patients (Follick, Smith, & Ahern, 1985).

8.24.6.1 Direct Observation of Pain Behavior Observer recordings of pain behavior may be performed in clinical settings as well as in more natural environments. They may be of particular benefit if the purpose of the assessment is to understand environmental influences on pain experience as part of a functional analysis of the pain problem. However, as in all direct observation the influence of the overall environment itself must be taken into account. Some studies use nurse observation in hospital settings. Ward assessments, however, raise the question of the generalizability of the measurements obtained. Aspects of the ward may exacerbate the demonstration of pain, either by means of social influences, such as other patients manifesting pain behaviors, or by nursing staff providing reinforcement of pain behaviors. Hence caution must be applied in generalizing findings from one setting to another. As a method of evaluating progress, however, during an inpatient program, direct observation on the ward may be very useful. Certain very specific pain behaviors are easily recorded by ward staff. For example, where nurses are the only source of drugs, medication intake can be easily recorded, as can requests for medication. Well-behaviors, such as the number of sit-ups achieved in physiotherapy, can also be simply recorded. These are important measures of improvement and should be included among measures of outcome. Field assessment of the home and workplace is also currently being developed, not just as an aid to assessment but in conjunction with homebased management as part of treatment programs aimed to complement institutional management (Cott, Anchel, Goldberg, Fabich, & Parkinson, 1990). Pain behaviors have been recorded by frequency counts during specified intervals. For example, Rybstein-Blinchik (1979) reports frequency counts of both verbal and nonverbal pain behaviors during 30 second observation periods of discussion initiated by the therapist. Inter-rater reliability was high, but the generalizability of the count was reduced by the therapist's presence. In addition, the period of time sampled was very short. This may have limited the value of the measure in terms of evaluating outcome. Repeated time-sampling over longer time periods is likely to provide

Assessment of Pain Behaviors more relevant information. The relative merits of different forms of observation, frequency counts, time sampling, and interval recording are described by Keefe and Williams (1992). No method is perfect, but Hartmann and Wood (1982) emphasize the need to train observers to a criterion level of reliability before starting data collection. Other approaches to direct observation of pain behaviors have involved the use of rating scales. For example, ratings by nurses of the frequency of three different types of pain behavior observed during each shift. More detailed ratings of pain behavior are provided by Richards, who describes the development of a pain behavior scale. Nursing staff were asked to rate the frequency on three-point scales (none, occasional, frequent) of 10 verbal and nonverbal pain behaviors. The time to be sampled was a daily ward round, where the patient interacted with the therapy team in a semistructured interview lasting approximately five minutes. He reports high inter-rater reliability for this measure, and moderate correlations with other measures such as level of physical activity and behavioral improvement during the inpatient-program (Richards, Nepomuceno, Riles, & Suer, 1982). Again, the time period sampled limits the external validity of the measure. In addition, although the use of a three-point rating scale may make the instrument easy to apply, it is also likely to reduce its sensitivity to change. Keefe et al. (1990) describes an observation method aimed specifically at evaluating change during treatment for patients with osteoarthritis in which trained observers keep detailed records of patients positions, level of movement and guarding, rubbing, shifting, rigidity, and joint flexing, which they show to have good reliability and validity and may be generalizable to other clinical populations. Attempts at obtaining measures of pain behaviors in natural settings include asking spouses or peers of patients to record pain behavior (Fordyce, 1976). Unfortunately, a spouse may not be an entirely objective observer. A review of the problem of reactivity in observational measurement suggests that participant observers cannot be assumed to provide reliable data (Harris & Lahey, 1982). 8.24.6.2 Electromechanical Devices The move towards objectivity in the assessment of pain behavior led to the development of a number of rather bizarre electromechanical devices, although methods favored in early studies are not much used today. Cairns, Thomas, Mooney, and Pace (1976) used an

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uptime clock placed above the patient's bed, which recorded the amount of time the patient spent lying down. Although they report this to be a useful measure of uptime, it is presumably dependent on the patients not being able to lie down anywhere else in the ward. Accuracy of recording also requires that patients can be trusted not to play the system by lying on their fellow ward mates' beds! A slightly less problematic measure has been developed by Saunders. This is the pedometer and consists of a recording device worn on the patient's wrist, activated by a microswitch on the leg. It therefore assesses gross movements and gives estimates of walking distance (Saunders, Goldstein, & Stein, 1978).

8.24.6.3 Self-observation Self-observation has the advantage of providing measurements obtained from the patient's natural environment. Furthermore, it gives responsibility for the evaluation of progress directly to the patient. However, it is dependent on patients recording their own behavior accurately, which is often difficult to ensure. Care must be taken in designing self-recording schedules that maximize patient compliance (Collins & Thompson, 1979). Simple targets for self-recording, such as the number of specific exercises achieved and medication intake may provide more reliable information than very detailed measures (Melzack & Wall, 1989). It has been suggested that self-recordings should be used in conjunction with more objective behavioral measures, because discrepancies between the two types of measure may occur. Comparison of observer recordings of the activity of patients with self-monitoring data obtained from the patients themselves show considerable discrepancies. Similar discrepancies have been noted between self-monitoring data and uptime clock recordings (Sanders, 1983). Such discrepancies may reflect some of the complex functional ramifications of pain and its meaning for the patient in a wider social context. For example, many patients, particularly at the start of treatment, may deny awareness of fluctuations in pain intensity in relation to environmental changes. Often the admission that social or interpersonal factors may exacerbate pain is seen as a statement that the pain is not real. Hence discrepancies between measures may provide important information for developing an understanding of the patients problem and should not necessarily be seen as inconvenient inconsistency.

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8.24.7 MEASUREMENT OF THE SUBJECTIVE COMPONENT OF PAIN: MEASURING THE QUALITY AND INTENSITY OF PAIN 8.24.7.1 Rating Scales Rating scales are the most commonly used measure of pain in clinical settings and pain research. They vary according to the number and nature of the anchor points supplied. Examples are numbers, words, or the presentation of visual analogue scales. Verbal rating scales (VRSs) are usually 5 or 6 point scales, such as none±mild±moderate± severe±unbearable±intense (Gracely, McGrath, & Dubner, 1978). VRSs are normally scored by assigning each anchor a score as a function of its rank. The assumption, as with numerical rating scales, is that they can be considered interval scales, whereas in fact they are only ordinal scales. Cross-modality matching techniques have been used to demonstrate that considerable interindividual differences exist in the interpretation of verbal anchors, (mild to one person may mean considerably more pain than to his or her neighbor). Similarly, assumptions that patients within different diagnostic groups may use verbal rating scales in a similar fashion has been disputed using cross-modality matching tasks (Urban, Keefe, & France, 1984). Visual analogue scales (VASs), such as 10 cm lines, suffer from some of the same difficulties although, as with VRSs, they have reasonable validity in that they show positive relationships with other measures of self-report (Jensen, Karoly, & Braver, 1986) and are sensitive to treatment effects (Turner, 1982). Perhaps the easiest scale to administer is the numeral rating scale in which patients are asked to rate their pain from 0 to 10 or 0 to 100, where 0 indicates no pain and the maximum number represents pain as bad as it could be. These measures also demonstrate positive associations with other measures and are sensitive to change. Jensen et al. (1986) report higher levels of compliance than with VASs, probably because they are so simple to use. Jensen et al. also looked at the number of levels actually used on a rating scale. They looked at chronic pain patients' use of a 101 point rating scale in obtaining estimates of the patients least, most, current, and average pain. They also recoded the 101 point scales as first 11 and then 21 point scales and found that little information was lost if 101 scales were collapsed into these smaller number of categories. In addition, examination of the actual responses of patients on the 101 scale suggested that people treated the scale in terms of multiples of 5 or 10. They conclude that

21 or even 10 point scales provide sufficient levels of discrimination for chronic pain patients to describe their pain intensity. Whatever rating scale is used, care must be taken to ensure that the anchors chosen do not confuse pain intensity descriptors with pain affect descriptors, because there is evidence that patient's ratings of pain intensity and pain affect are not always perfectly correlated (Gracely, Dubner, & McGrath, 1979). The importance of assessing both these components of pain separately is clear. If an outcome measure has anchors that could be ambiguous in their interpretation, unreliability of the measure may be introduced by the patient interpreting the question in one way on one occasion and in the other way at a later occasion of measurement. For example, if the scale asks ªHow bad is the pain?º with anchors from ªnot at all badº to ªextremely bad,º the scale could be interpreted to mean either how bad is the pain intensity or how distressing is the pain. Used in different ways on different occasions this scale will become unreliable. Attempts to address this problem include the use of combinations of rating scales. Price, Harkins, and Baker (1987) used separate VAS ratings of the sensory and affective dimensions of pain. Previous research showed that VAS ratings approximated the properties of ratio scales (Price, McGrath, Raffi, & Buckingham, 1983) and were internally consistent (Price & Harkins, 1987). In a comparison of different patient groups, Price et al. (1987) found score profiles consistent with expectations, in that chronic pain patients produced higher affective ratings than either women in labor or volunteers exposed to experimental pain. A second approach has involved using methods of cross-modality matching to validate the distinction between the two scales. Gracely (1980) describes the use of cross-modality matching techniques to develop separate ratio scales for the sensory (intensity) and the affective (distress) aspects. Pharmacological interventions were shown to have differential effects on the two scales. Although these findings concern acute experimentally induced pain rather than chronic pain, they nevertheless demonstrate that reliance on single scales may distort conclusions concerning changes in the subjective component of pain. A further attempt to address this, and to develop related measures of intensity and affective aspects of the pain experience, is the Descriptor Differential scale of Gracely and Kwilosz (1988). This is a multiple item measure in which patients are asked to rate the intensity or affect of their pain as being more or less than the series of 12 descriptors, on a 21 point scale,

Measurement of the Subjective Component of Pain (10 points either side of the verbal descriptor): Intensity (7) . . . . . . . . . .strong . . . . . . . . . .(+) Affect (7) . . . . . . . . . .distressing . . . . . . . . . .(+) A strength of the scale is that the internal consistency of the scale can easily be assessed and it is quickly clear if a subject is using the scale in an unreliable/inconsistent fashion. Unfortunately, in most normal clinical practice, it may be rather time consuming to complete, and since there is, as yet, relatively little information about its properties, the relative sensitivity of the measure in relation to the standard VRS and VAS scales is not yet clear. However, it seems a valuable way forward in obtaining a more thorough measure of pain intensity and affect. A helpful development for the assessment of pain affect is the Pain Discomfort scale described by Jensen, Karoly, and Harris (1991). This is a 10 item questionnaire covering distress and anger responses to pain. 8.24.7.2 McGill Pain Questionnaire The development of the McGill Pain Questionnaire (MPQ) by Melzack and Torgerson (1971) was an important move towards establishing a measure that assessed not just pain intensity but also the affective and motivational qualities of pain. Melzack and Torgerson (1971) started by asking subjects to classify pain adjectives and hence elicited classes of words describing the sensory qualities, the affective qualities, and the evaluative aspects of pain. They then asked groups of physicians, patients, and students to assign intensity values to each pain descriptor and thereby elicited scale values for individual descriptors in each category of pain. The emerging MPQ consisted of 20 categories of words (10 sensory groups, five affective groups, one evaluative, and four miscellaneous). Details of the full questionnaire and its scoring procedures are described by Melzack (1975). It has been extremely widely used and a few examples of its application are provided by Melzack (1983), Reading (1989), and Wilke, Savedra, Holzener, Tesler, and Paul (1990). Evidence of its widespread use is the fact that it has been translated into 12 other languages, including Arabic and Chinese. Three major indices of the MPQ are used to describe the overall pain problem:

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(i) The pain rating index (PRI), based on the rank values of the words chosen by the patient to describe their pain. (ii) The total number of words chosen. (iii) The present pain intensity (PPI), based on an intensity rating 0±5. The reliability of the adjective groupings has been confirmed by Prieto et al. (1980) and Reading, Everitt, and Sledmere (1982). In addition Turk, Rudy, and Saveloy (1985) have studied the internal structure of the questionnaire by using confirmatory factor analysis. Melzack and Katz (1992) and Torgerson (1986) discuss these findings in depth, together with the rationale for using factor analytic methods to delineate the dimensions of the MPQ. The MPQ has been used to differentiate clinical pain and its value in this field is described by Melzack and Katz (1992). Although it is unlikely that any pain descriptor instrument would be used to make differential diagnoses, it is clear from comparisons across different clinical groups that patients with similar diseases or pain syndromes do tend to use similar words to describe their pain experience. Melzack (1987) reported the development of the short form of the McGill (SFMPQ) which aims to be a quicker version, particularly relevant for research administration. It consists of 15 words (11 sensory, four affective) selected on the basis of their frequency of endorsement by patients with a variety of acute intermittent and chronic pains. Patients are asked to rate each adjective on an intensity scale 0 = more to 3 = severe. Melzack shows that the SFMPQ correlates very highly with the major PRI indices of the longer form and is sensitive to traditional therapies, suggesting it may be a valuable clinical and research tool.

8.24.7.3 Assessment of Mood in Pain Patients Assessment of mood in pain patients can be problematic because many of the items of conventional anxiety and depression measures may be answered positively as a result of the pain itself, rather than the person's associated mood. The Beck Depression Inventory (BDI), for example, which is widely used in the assessment of depression, has a number of somatic items (sleep disturbance, fatigue) that may be caused by the pain itself rather than being a function of the associated mood. Hence scores on the BDI may be artificially inflated by this confounding. Indeed this has been borne out by a number of studies with both UK and US pain patients. Williams and Richardson (1993) conducted a factor analysis of the BDI

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scores in their UK chronic pain patient group and identified three factors: sadness about health, self-reproach, and somatic disturbance. The most frequently endorsed items were those loading on the somatic factor and Williams and Richardson suggest that the pattern of relationships between factor scores and measures of pain, mood and cognition, and physical functioning indicate that the use of the total BDI score may give a misleading impression of the supposed affective disturbance in this group of patients. Similar conclusions are arrived at by the results of a factor analysis by Chibnall and Tait (1994) who conclude that the endorsement of somatic items means that the total BDI scores may not in fact indicate affective disturbance but rather be a consequence of the somatic aspects of pain. Attempts to develop measures of mood that are less affected by contamination of endorsement of somatic items have included the Hospital Anxiety and Depression scale (Zigmund & Snaith, 1983) and more recently the Well-being Questionnaire (Pincus, Griffith, Isenberg, & Pearce, 1997).

8.24.8 PSYCHOLOGICAL INTERVENTIONS FOR PAIN Since the late 1970s the increasing awareness of the multidimensional nature of pain has altered the way in which pain has been managed clinically and, particularly in the case of chronic pain, a range of different psychological interventions have been developed. These range from interventions that target a physiological system thought to play a causal role in the pain problem, (e.g., muscle biofeedback for tension headache, pulse volume biofeedback for migraine) through cognitive interventions aimed at teaching pain-coping skills, to operant behavioral measures that aim to modify reinforcing contingencies maintaining pain behavior. There is now considerable evidence that interventions that teach behavioral and cognitive pain coping strategies can be effective in reducing the life-style impact of chronic pain. Numerous reviews now exist (Flor, Fydrich, & Turk, 1992; Jensen, Turner, Romano, & Karoly; 1991; Linton, 1986; Pearce, 1983; Turner & Chapman, 1982a, 1982b; Williams et al., 1993). In clinical practice, there is an increasing number of psychology-led pain management programs on a range of different management strategies, including for example, relaxation training, cognitive skills training, and physical therapy. This chapter describes each of the interventions and considers the evidence for

their efficacy separately. It then considers factors that may influence the overall success of the multimethod programs.

8.24.8.1 Contingency Management The development of contingency management approaches for the treatment of chronic pain derives from Fordyce's view of chronic pain as primarily a behavioral problem. Fordyce considered that, in some cases, pain behaviors can be maintained largely by their reinforcing consequences, rather than by underlying physiological processes or anatomical change. The term pain behaviors is now commonly used to refer to both the learned and unlearned respondent and operant responses that contribute to and comprise chronic illness behaviors. Among the relevant and often discussed environmental variables that may strengthen illness behaviors are: (i) reinforcement of pain behaviors by significant others; (ii) avoidance behaviors in the form of restrictions in work, exercise, and even the most routine of daily activities; (iii) litigation and income protection plans (i.e., income contingent on disability); and (iv) unemployment or the failure to return to work following treatment or recovery. Pain behaviors may be either positively reinforced, for example by social factors, such as attention and concern from family members, or negatively reinforced, for example by avoidance of unwanted responsibilities. There is some experimental support for the underlying theoretical position that pain behaviors and activity levels in chronic pain patients can be controlled by altering reinforcement contingencies. McArthur, Cohen, Gottlieb, Naliboff, and Schandler (1987) review some of the literature dealing with the effect on activity levels of contingent social reinforcement. Others have looked at the influence of family members on chronic pain patients' behavior. For example, Romano et al. (1991) videotaped chronic pain patients and their spouses, as well as healthy controls, performing a series of routine household activities. They found that not only did chronic pain patients show higher levels of verbal and nonverbal pain behaviors, but their spouses showed more solicitous behavior and less facilitative behavior, for example, compliments and praise, than the spouses of control subjects. Although this does not prove that different patterns of spouse behavior play a central role in either causing or maintaining pain behaviors, it does provide support for the view that the environmental context in which chronic pain occurs may be different.

Psychological Interventions for Pain It is this environmental context that operant methods aim to change. The aim of operant programs is to increase the frequency of well behaviors and decrease that of pain behaviors. Reduction in pain intensity is not specified as an aim. Indeed, in clinical practice it is generally explained to the patient that the program is not aiming to remove their pain but rather to help them cope better with it and resume normal activities despite it. There is an underlying assumption that, once the patient is active again and engaged in more distracting activities, attention to the pain sensations will be reduced and hence pain intensity will diminish. The methods used to achieve these aims are described in detail by Fordyce (1976). Briefly, patients are admitted to specialized programs for periods of between two and six weeks. During this time staff give no attention to pain behaviors or requests for analgesics, but provide considerable social reinforcement for targeted well-behaviors. Physical therapy programs are developed to increase patient activity levels. Daily exercise quotas are determined on the basis of patients' initial tolerance levels. Each day the quota is increased so that the patient becomes able to manage significantly more than the initial level. Progress is charted graphically and staff attention, or some other desirable event, is made contingent on successful daily completion of the quota. Reducing levels of medication is also an important aim of the operant programs. This is done by establishing initial drug requirements by putting the patient on a free operant schedule for few days immediately after admission. The amount of medication required is then provided in a strong-tasting masking vehicle called the pain cocktail. The patient is unable to tell from its appearance or taste how strong the concoction is. This pain cocktail is provided on a time contingent rather than pain contingent or PRN basis; the patient has to take it every four hours whether in pain or not. If it is refused, the patient must wait until the next time interval is up before medication is available again. In this way it is assumed that the proposed association between operant pain behavior and medication should be broken. The active ingredients of the pain cocktail are gradually reduced so that by discharge the patient should be consuming only the inert substance. Typically, groups of patients are admitted to behavioral pain management programs, usually conducted in inpatient facilities and of short duration (e.g., four to six weeks). Such programs can produce dramatic results, but have been less successful in producing adequate maintenance on follow-up (Keefe & Gil, 1985). This may suggest that, although activity levels

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may be altered by environmental manipulation, any therapeutic approach based solely on this method is likely to have considerable problems in generalizing beyond the treatment environment.

8.24.8.2 Multimethod: Developments Since Fordyce's Work Although Fordyce's original work revolutionized the approach to the management of longterm pain, relatively few recent psychological interventions have focused exclusively on operant methods. Although many use an operant framework they also include relaxation training, biofeedback, exercise therapy, and intensive education. These multiple ingredients make it difficult to identify the effective components of treatment and the process of change but there is now a clear body of evidence indicating that these multimethod interventions can produce significant improvements in quality of life. One of the early outcome studies is that of Seres and Newman (1976). They describe the progress of 100 patients in a treatment program incorporating operant conditioning along with physical therapy, body mechanics, biofeedback, relaxation training, and education. They reported positive results, showing increases in activity level as a result of the program. Later studies confirm these early positive findings. For example, McArthur et al. (1987) reviewed a large sample of chronic low back-pain patients from admission to a multidisciplinary program through to initial and long-term follow-up over a period of six months to five years following treatment. The therapeutic techniques used on the program included biofeedback, attribution-based psychotherapy, patient-controlled medication reduction, physical reconditioning, vocational counseling, educational presentations, pool and recreational therapy, and assertiveness training. Favorable outcomes were achieved by many of the respondents, and in several of the measures a good degree of stability was observed over the follow-up period, though obviously given the enormous number of components of treatment we have no idea of the effective ingredients A total of 65 studies evaluating the efficacy of multidisciplinary, multimethod treatment centers were identified by Flor et al. (1992) and subjected to a meta-analysis. They report that both within- and between-group effect sizes show multidisciplinary treatments for chronic pain to be superior to no treatment, waiting list controls and conventional medical and surgical treatment or physiotherapy. Most of these

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studies have been conducted in the USA. One of the few UK studies that has drawn strongly from the operant method developed by Fordyce is that of Williams et al. (1993). This is an evaluation of a four week inpatient program delivered by a multidisciplinary team. During the admission, patients are managed in a largely operant culture, with reinforcement for well behaviors and pain-management behaviors, associated with relative lack of attention for pain behaviors. Graded exercise programs are taught but Williams et al. deviate from the strict Fordyce model by also teaching patients cognitive coping strategies. Although the study is not a randomized controlled trial, it does describe the progress of a large number of patients. Two hundred and twelve patients were assessed before and after treatment and at six months follow-up. Patients made significant improvements during treatment on measures of psychological and physical function and these improvements were largely maintained at six month follow-up. As with all treatment outcome studies they experienced problems in identifying all patients at follow-up. Patients who were unavailable for follow-up had higher pretreatment pain scores and poorer physical function, suggesting that the more severe patients may be vulnerable to dropping out and hence more difficult to keep in the treatment program. The approach is, therefore, probably of less value to them. Clearly in the absence of a control group one cannot be certain that the effects are due to treatment, but the results are in line with those reported by the USA studies (Linton, 1986; Malone & Strube, 1988; Phillips, 1987). An Australian study also provides support for the efficacy of cognitive behavioral programs using an operant framework. Peters, Large, and Elkind (1992) compared inpatient pain management with an outpatient version of the treatment. The treatments are unfortunately not directly comparable because the inpatients had significantly greater contact time, whereas the outpatient program had less of an operant component and more emphasis on relaxation and coping skills. Therefore, it is not possible to draw conclusions of the relative benefits of inpatient vs. outpatient treatment. Nevertheless, both treatment groups showed significantly greater reductions in pain intensity ratings and pain behaviors than a no treatment control group, providing general support for the efficacy of such an operant-based approach. The problems in comparing in- and outpatient treatment identified in the Peters et al. (1992) study raise the question of whether operant methods can realistically be applied on an outpatient basis. Controlling environmental

contingencies may be viable on an inpatient basis, but is not easy in outpatient settings. Nevertheless, these basic environmental contingencies at home may be among the most important factors in maintaining the pain problem. There is increasing evidence that family members can influence pain experience and pain behavior and hence should be included in an operant program since they are powerful environmental reinforcing agents. Block, Kremer, and Gaylor (1980) showed that pain patient's ratings of their spouse as solicitous or nonsolicitous were correlated with patient's own pain ratings. Block suggested that the spouse was a discriminative cue for pain behavior and recommended spouse education to remove attention contingent upon pain display. Later studies have corroborated the importance of spouse reinforcement and social support (Flor, Kerns, & Turk, 1987; Paulsen & Altmaier, 1995; Romano et al., 1992). This would suggest that, to be effective, operant methods should more directly tackle the challenge of altering spouse behavior. Although some treatment programs involve significant others to some degree (Pearce & Erskine, 1989) there are very few studies that have extended operant methods into the home setting. Corey, Etlin, and Miller (1987) is an exception. They treated 72 patients by therapists going into the patients home for a six month period. Followup results at 18 months showed that significant lifestyle changes (including vocational status) were largely maintained, with nearly 70% identified as having achieved and maintained vocational goals. Although home based programs are likely to be difficult to organize and costly to implement, they do require further investigation because the longer-term cost effectiveness may outweigh the initial costs of the intervention.

8.24.9 COGNITIVE COPING METHODS Attempts to reduce the impact of pain using cognitive manipulations have been used informally for generations. Adults attempt to distract children after accidents with magic kisses and encouraging them to imagine that they are brave little soldiers. In recent years psychologists have attempted to formalize and extend these phenomena. The term cognitive interventions refers to the growing number of techniques that attempt to influence pain through the medium of thoughts. These may include an individual's attentional processes, images, and self-statements. Fernadez and Turk (1989) summarized the literature and identified six categories of cognitive coping strategies:

Early Intervention (i) pleasant imaginings, for example, thinking of a bunch of flowers or a pleasant day in the country; (ii) rhythmic cognitive activity, for example, counting backwards from 100 in threes; (iii) external focus of attention, for example, counting ceiling tiles; (iv) pain acknowledging, for example, reappraising the nociceptor stimuli objectively, such as concentrating on the dullness or numbness; (v) dramatized coping, for example, imaging your are playing a heroic role in a football game or combatitive setting; and (vi) neutral imaginings, for example, imagining being in a neither arousing nor unpleasant situation, such as watching television or attending a lecture. In evaluating the efficacy of different cognitive coping strategies, Fernadez and Turk report a meta-analysis of 51 studies concluding that, overall, 85% of the investigations showed that cognitive strategies were effective in enhancing pain tolerance for experimental pain or attenuating clinical pain ratings. The relative efficacy of the different categories of coping is harder to elicit, since control subjects are not easily prevented from the spontaneous use of their own coping strategies. Fernadez and Turk conclude, however, that there is more evidence to support imagery strategies being more generally effective, and less evidence for the value of pain acknowledging. It should also be noted that many of the studies of specific coping strategies are conducted on normal subjects exposed to acute pain in laboratory conditions, hence care should be taken in extrapolating these findings to the clinical situation. In practice, because it is so difficult to predict which patients will find particular strategies most helpful, strategies are taught in a menu fashion and patients are encouraged to develop their own repertoire of chosen strategies.

8.24.9.1 Altering Beliefs Chronic pain patients come to treatment with beliefs about their pain that have developed from their own experiences at attempting to manage it and their interactions with doctors and other health professionals. Not surprisingly, they tend to have negative views about the potential success of treatment and their ability to cope. Until the late 1980s there were few methods of assessing pain beliefs, and hence evaluating change in beliefs was difficult. We now have questionnaires by Williams and Thorn (1989), (the Pain Beliefs and Perception Inventory); by Jensen, Karoly, and Huger (1987), (Survey of Pain Attitudes); and by

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Edwards, Pearce, Turner-Stokes, and Jones (1992), (Pain Beliefs Questionnaire). Schwartz, Slater, and Birchler (1994) have also pioneered an assessment of pain beliefs that moves beyond questionnaire assessment and involves videotape presentation of common pain problems. The inclusion of such measures in the evaluation of treatment programs will provide important information on the process of change during interventions, as well as providing a method of assessing changes during the development of the pain problem from an acute to chronic condition. Attention has been directed at people's selfefficacy beliefs and their role in predicting response to treatment. Council, Ahen, Follick, and Kline (1988) found that self-efficacy ratings predicted their performance on physical tasks (e.g., leg raises). Changes in self-efficacy may be an important process factor during multidisciplinary treatments and Jensen, Turner, and Romano (1991) report significant increases in self-efficacy as measured by the Pain SelfEfficacy Questionnaire during the treatment phase of their inpatient program.

8.24.10 EARLY INTERVENTION Throughout the late 1980s and the 1990s, early intervention in the treatment of pain has been increasingly advocated. Although many patients with acute pain will naturally get better with time (LindstroÈm et al., 1992), it is necessary to understand the development of chronicity to decide who would benefit from being treated at an early stage. Thus an important part of the research into the efficacy of early intervention is an understanding of the development and process of chronicity (Linton, Bradley, Jensen, Spangford, & Sundell, 1989). It is, however, difficult to identify individuals who are likely to become chronic pain sufferers. Psychosocial factors have been identified in some studies, although it is not clear if these factors are the cause of or are caused by the pain symptoms (Hellsing, Linton, & Kalvemark, 1994; Von Korff et al., 1990). A few studies have attempted to predict who will become chronic pain sufferers, however, as yet the results of such studies are often conflicting. Philips, Grant, and Berkowitz (1991) in their randomized controlled study into the utility of behavioral counseling for back and neck pain patients (n = 117), found that risk factors for development of chronic pain problems included: main site being upper back or neck; acute pain from injury; and cases where there was a legal involvement. In the same study a model was developed to predict chronic pain

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using stepwise logistic regression. They used a series of measures as dependent variables including: pain intensity; pain quality (sensory, affective); pain behavior (avoidance, complaint); pain evaluation questionnaire; the BDI; the State Trait Anxiety Index; and the Sickness Impact Profile to predict patients likely to develop chronic pain. They measured pain at the acute stage, subchronic stage (three months), and chronic stage (six months). They were able to accurately predict subchronic from acute (75.5%), chronic from subchronic (80%), and chronic from acute (68.1%). This study, although useful, was limited in the number of patients sampled and the choice of dependent variables. Its authors suggested the need for further research. In a pilot study of the evolution of chronic pain, Potter and Jones (1992) found that the presence of depression was significantly associated with the development of chronic pain. They then went on to suggest that if such depression was appropriately treated the likelihood of chronicity may be reduced. They also found a relationship between high pain intensity scores and chronicity. Hellsing et al. (1994) found, in patients with acute back and neck pain, that the development of chronic pain was not dependent on the severity or intensity of the acute pain. However, they found that those patients where active trunk movements provoked pain in several directions, or those with suspected nerve root involvement, had significantly higher risk of developing chronic pain. Lehmann, Spratt, & Lehmann (1993), in their study that attempted to predict long-term disability in back-injured workers, could not identify any predictive outcome measures for the development of chronic pain. They did, however, find a correlation with age and marital status and time until return to work. Coste et al. (1994) found that previous chronic low back pain resulted in a much lower chance of recovery. Other predictive factors included pain when standing or lying, initial disability, and employment and compensation status. This suggests that the development process of chronic pain is still not fully understood and further research is necessary to produce a consensus. Several studies have been conducted to assess the advantages of early interventions (Hellsing et al., 1994; Jankus, Park, Van Keulen, & Weisensel, 1995; Linton, Hellsing, & Andersson, 1993; Mayer et al., 1987; Philips et al., 1991). This research has resulted in two key findings. First, the establishment of a critical time period within which treatment should be initiated, and second, that the advantages seem to be gained only with patients who have not been chronic pain suffers in the past.

The UK CSAG on back pain suggests that delayed access to treatment can contribute to create a chronic pain sufferer. Recommendations were given on the timescale for various treatments including, ªall patients with acute back pain should be referred to and seen by a physical therapist before they are off work for six weeksº (CSAG, 1994, p. 36). This is because of clinical and epidemiological evidence that the duration of the initial episode of back pain is related to chronicity. Hackett, Bundred, Hutton, O'Brien, and Stanley (1993) found that open access to a physiotherapist, either at a health center or a hospital, results in fewer sick listed days than referral to a hospital consultant. Hellsing et al. (1994) also advocate early intervention for acute back and neck pain patients. They recommend that treatment should be completed within three months as this was a critical limit for developing new inactive habits. In a study comparing standard treatment with an early active treatment program Linton et al. (1993) found that the advantages of early intervention were only evident in patients with no history of sick listing for musculoskeletal pain problems. The risk of developing chronic pain was eight times lower in the early activation no-history-of-pain group. This finding was reiterated by Hellsing et al. (1994) where the relative risk for developing chronic pain for patients with previous back/neck problems was six times higher than those not previously sick listed for musculoskeletal problems. Philips et al. (1991) found that patients who received behavioral counseling early within the pain episode were more likely to be pain free at six months. The difference was not statistically significant but, as the intervention was limited to only one session of behavioral counseling on a relatively small sample, this might not be surprising. Philips et al. suggest that a larger study with a more significant intervention might produce more notable results.

8.24.11 CONCLUSION This chapter provides an overview of some of the current theories of pain, methods for the assessment of pain, and psychological interventions for the management of chronic pain. It is clear that considerable advances have been made in the way chronic pain is conceptualized and treated. Whereas in the early 1980s patients with long term pain would only be able to expect physical interventions for their problem, now, especially in the USA but increasingly in other countries as well, local hospitals have some form

References of psychological or multidisciplinary service. These services are developing in the light of evidence that improvements in activity and quality of life can be effected by nonphysical, psychological, and multidisciplinary programs. However, although it is clear that these interventions produce change, the quality of the studies to date still leaves a number of questions about the process of change and the nature of the effective ingredients of psychological interventions. It is not yet known how to predict the outcome, or which kinds of patients do best under a particular form of psychological treatment. Other areas that are still largely unknown concern the processes by which patients progress from acute to chronic pain. The next few years are likely to see interventions developing to prevent patients with acute pain moving along the continuum to chronic pain, and it is likely that the change in clinical services for chronic pain observed since the 1980s will be matched by increasing multidisciplinary interventions in primary care for the early chronic pain patient.

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pain. In J. J. Bonica & D. Albe-Fessard (Eds.), Advances in pain research and therapy (Vol. 1, p. 818). New York: Raven. Gracely, R. H., Dubner, R., & McGrath, P. A. (1979). Narcotic analgesia: Fentanyl reduces the intensity but not the unpleasantness of painful tooth pulp sensations. Science, 203, 1261±1263. Gracely, R. H., & Kwilosz, D. M. (1988). The Descriptor Differential Scale: Applying psychophysical principles to clinical pain assessment. Pain, 35, 279±288. Gracely, R. H., McGrath, P., & Dubner, R. (1978). Ratio scales of sensory and affective verbal pain descriptors. Pain, 5, 5±18. Gupta, M. A. (1986). Is chronic pain a variant of depressive illness? Canadian Journal of Psychiatry, 31, 241±248. Hackett, G., Bundred, P., Hutton, J., O'Brien, J., & Stanley, I. M. (1993). Management of joint and soft tissue injuries in three general practices: Value of on-site physiotherapy. British Journal of General Practice, 43, 61±64. Harris, F. C., & Lahey, B. B. (1982). Recording system bias in direct observational methodology: A review and critical analysis of factors causing inaccurate coding behaviours. Clinical Psychology Review, 2, 539±557. Hartmann, D. P., & Wood, D. D. (1982). Observational methods. In A. S. Bellack, M. Hersen, & A. E. Kazdin (Eds.), International handbook of behavior modification and therapy (pp. 109±138). New York: Plenum. Hellsing, A. L., Linton, S. J., & Kalvemark, M. (1994). A prospective study of patients with acute back and neck pain in Sweden. Physical Therapy, 74, 116±124; discussion 125±128. Helman, C. G. (1990). Pain and culture. In C. G. Helman (Ed.), Culture, health and illness. Oxford, UK: Butterworth-Heinemann. Horn, S., & Munafo, M. (1997). Pain, theory, research and intervention. Buckingham, UK: Open University Press. Jankus, W. R., Park, T. J., VanKeulen, M., & Weisensel, M. (1995). Interdisciplinary treatment of the injured worker with chronic pain: Long-term efficacy. Wisconsin Medical Journal, 94, 244±9. Jensen, M. P., Karoly, P., & Braver, S. (1986). The measurement of clinical pain intensity: A comparison of six methods. Pain, 27, 117±126. Jensen, M. P., Karoly, P., & Harris, P. (1991a). Assessing the affective component of chronic pain: Development of the Pain Discomfort Scale. Journal of Psychosomatic Research, 35, 149±154. Jensen, M. P., Karoly, P., & Huger, R. (1987). The development and preliminary validation of an instrument to assess patients' attitude toward pain. Journal of Psychomatic Research, 31, 393±400. Jensen, M. P., Turner, J. A., & Romano, J. M. (1991). Self efficacy and outcome expectancies relationships to chronic pain coping strategies and adjustment. Pain, 44, 263±269. Jensen, M. P., Turner, J. A., Romano, J. M., & Karoly, P. (1991b). Coping with chronic pain: A review of the literature. Pain, 47, 249±283. Karoly, P. (Ed.) (1985). The assessment of pain: Concepts and procedures in measurement strategies in health psychology. New York: Wiley. Keefe, F. J., Caldwell, D. S., Williams, D. A. Gil, K. M., Mitchell, D., Robertson, C., Martinez, S., Nunley, J., Beckham, J. C., Crisson, J. E., & Helms, M. (1990). Pain coping skills training in the management of osteoarthritic knee pain: A comparative study. Behaviour Therapy, 21, 49±62. Keefe, F. J., & Gil, K. M. (1985). Recent advances in the behavioural assessment and treatment of chronic pain. Annals of Behavioural Medicine, 7, 11±16. Keefe, F. J., & Williams, D. A. (1992). Assessment of pain behaviors. In D. C. Turk & R. Melzack (Eds.), Hand-

book of pain assessment (pp. 277±292). New York: Guilford Press. Lehmann, T. R., Spratt, K. F., & Lehmann, K. K. (1993). Predicting long-term disability in low back injured workers presenting to a spine consultant. Spine, 18, 1103±1112. Leventhal, H. (1984). A perceptual motor theory of emotion. Advances in Experimental Social Psychology, 17, 117±183. LindstroÈm, I., OÈhlund, C., Eek, C., Wallin, L., Peterson, L. E., Fordyce, W. E., & Nachemson, A. L. (1992). The effect of graded activity on patients with subacute low back pain: A randomised prospective clinical study with an operant-conditioning behavioural approach. Physical Therapy, 72, 279±293. Linton, S. J. (1986). Behavioural remedication of chronic pain: A status report. Pain, 24, 125±141. Linton, S., Bradley, L., Jensen, I., Spangford, E., & Sundell, L. (1989). The secondary prevention of low back pain: A controlled study with follow-up. Pain, 36, 197±207. Linton, S. J., Hellsing, A. L., & Andersson, D. (1993). A controlled study of the effects of an early intervention on acute musculoskeletal pain problems. Pain, 54, 353±359. Mackie, A. M., Coda, B. A., & Hill, H. F. (1991). Adolescents use patient-controlled analgesia effectively for relief from prolonged oropharyngeal mucositis pain. Pain, 46, 265±269. Malone, M. D., & Strube, M. J. (1988). Meta-analysis of non-medical treatments for chronic pain. Pain, 34, 231±244. Mayer, T. G., Gatchel, R. J., Mayer, H., Kishino, N., Keeley, J., & Mooney, V. (1987). A prospective 2 year study of functional restoration in industrial low back injury. An objective assessment procedure. Journal of the American Medical Association, 258, 1763±1767. McArthur, D. L., Cohen, M. J., Gottlieb, H. J., Naliboff, B. D., & Schandler, S. L. (1987). Treating chronic low back pain: I. Admission to initial follow-up. II. Longterm follow-up. Pain, 29, 1±38. Melzack, R. (1973). The puzzle of pain. New York: Basic Books. Melzack, R. (1975). The McGill Pain Questionnaire: Major properties and scoring methods. Pain, 1, 277±299. Melzack, R. (1983). Pain measurement and assessment. New York: Raven. Melzack, R. (1987). The Short Form McGill Pain Questionnaire. Pain, 30, 191±197. Melzack, R., & Katz, M. (1992). The McGill Pain Questionnaire: Appraisal and current status. In D. C. Turk & R. Melzack (Eds.), The handbook of pain assessment (pp. 152±168). New York: Guilford Press. Melzack, R., & Torgerson, W. S. (1971). On the language of pain. Anaesthesiology, 34, 50±59 Melzack, R., & Wall, P. D. (1965). Pain mechanismsÐa new theory. Science, 150, 971±979. Melzack, R., & Wall, P. D. (1988). The challenge of pain. (2nd ed.). London: Penguin. Melzack, R., & Wall, P. D. (1989). Textbook of pain. London: Churchill Livingstone. Mountcastle, V. B. (1974). Pain and temperature sensibilities. In V. B. Mountcastle (Ed.), Medical physiology. St. Louis, MO: Mosby. National Center for Health Statistics, & Koch, H. (1986). The management of chronic pain in office-based ambulatory care: National Ambulatory Medical Care Survey. Advance data from Vital and Health Statistics, No. 123 (DHHS Publication No. PHS 86±1250). Hyattsville, MD: Public Health Service. Paulsen, J. S., & Altmaier, E. M. (1995). The effects of perceived verses enacted social support on the discriminative cue function of spouses for pain

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.25 Visible Disfigurement NICHOLA RUMSEY University of the West of England, Bristol, UK 8.25.1 INTRODUCTION

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8.25.1.1 Why is Physical Appearance Important? 8.25.1.2 Psychological Research, Theory, and Practice in Disfigurement

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8.25.2 THE INCIDENCE OF DISFIGUREMENT

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8.25.3 THE CAUSES OF DISFIGUREMENT

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8.25.3.1 8.25.3.2 8.25.3.3 8.25.3.4 8.25.3.5

Congenital Malformations Visible Differences Resulting from Developmental Change Injuries Caused by Trauma and Burns Dermatological Conditions and Disease Disfigurements Resulting from Therapeutic Intervention

8.25.4 THE TREATMENT OF PEOPLE WITH DISFIGUREMENTS 8.25.4.1 8.25.4.2 8.25.4.3 8.25.4.4

579 579 579 579 580

The Context of Treatment Provision Reconstructive and Aesthetic Plastic Surgery Prosthetic Devices Cosmetic Camouflage

8.25.5 PSYCHOLOGICAL ASPECTS OF TREATMENT 8.25.5.1 Elective Surgery 8.25.5.1.1 Motivation to seek treatment 8.25.5.1.2 The outpatient experience 8.25.5.1.3 The consultation 8.25.5.1.4 Hospital admission and the postoperative experience 8.25.5.1.5 Satisfaction with treatment outcome 8.25.5.2 Emergency Treatment 8.25.6 THE IMPACT OF BEING VISIBLY DIFFERENT 8.25.6.1 The Birth and Early Development of a Disfigured Child 8.25.6.2 Childhood and Adolescence 8.25.6.3 Common Problems Encountered by Adults 8.25.6.3.1 Negative feelings about the self 8.25.6.3.2 Problems with social encounters 8.25.6.3.3 The behavior of the visibly different person 8.25.6.3.4 Loss of identity through injury or treatment 8.25.7 INDIVIDUAL DIFFERENCES IN DISTRESS AND ADJUSTMENT 8.25.7.1 8.25.7.2 8.25.7.3 8.25.7.4 8.25.7.5 8.25.7.6 8.25.7.7

577 578 578 578 578

580 580 580 580 580 581 581 581 581 582 582 583 583 583 584 584 584 584 585 585 585 585 586 586

The Etiology of the Disfigurement The Visibility and Extent of Disfiguration Age and Gender Socioeconomic Status and Educational Level Coping Style Social Support Levels of Social Skill

8.25.8 THE ROLE OF PSYCHOLOGISTS IN HEALTH CARE PROVISION

586 586 587

8.25.8.1 Outpatient Care and Preoperative Assessment 8.25.8.1.1 The clinic environment

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Visible Disfigurement 587 587 588 588 588 588 589 589

8.25.8.1.2 Psychosocial assessment 8.25.8.1.3 Facilitating decision-making 8.25.8.1.4 Preparation for surgery 8.25.8.2 Emergency Admissions 8.25.8.3 The Postoperative Period 8.25.8.3.1 Discharge planning and preparation 8.25.8.3.2 Long-term follow-up 8.25.8.4 Emotional Support for Professional Carers 8.25.9 PSYCHOLOGICAL INTERVENTIONS AND THE DEVELOPMENTAL PROCESS 8.25.9.1 The Birth and Early Development of a Disfigured Child 8.25.9.2 The Family Environment 8.25.9.3 Social Interaction Skills

589 589 589 590

8.25.10 DISFIGUREMENT AND PSYCHOLOGY: PROFESSIONAL ISSUES

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8.25.11 CONCLUSIONS

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8.25.12 REFERENCES

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8.25.1 INTRODUCTION This chapter describes the current state of knowledge, research, and practice relating to the problems experienced by people with visible disfigurements. Over the years, professionals working in this area have struggled to formulate a working definition which reflects appropriate inclusion and exclusion criteria. One particular area of debate centers on body dysmorphic disorder (BDD), in which the sufferer is considered to have grossly exaggerated negative feelings about an imagined or very minor physical defect. Although some of the problems reported by dysmorphophobics are similar to those with clearly visible disfigurements, other aspects of the condition (e.g., behavior patterns and response to treatment) set BDD apart. For the purpose of this chapter, findings related to research and practice concerning ªpeople with one or more visible physical characteristic(s) perceived by the self and others as `different' or `abnormal' compared with societal and cultural normsº (adapted from Harris, 1997; Partridge, 1997) have been included. 8.25.1.1 Why is Physical Appearance Important? Why do people who look ªdifferentº experience problems? Evidence for the strength and complexity of feelings associated with outward appearance comes from a rich variety of sources. These include mythology, legends, fairy tales, anecdotes from history, evidence from psychological research, and indications from contemporary society. Whilst there is no compelling evidence for a relationship between personality and facial characteristics, the notion that character can be read from the face has an ancient and distinguished history. Subscribers to this view

have included many great writers, including Cicero (ªThe face is the image of the soulº), Shakespeare (ªThere's no art to find the mind's construction in the faceº), and Oscar Wilde (ªIt is only shallow people who do not judge by appearance!º). Folklore linking aspects of appearance to personality has existed throughout history and persists in current society, for example, linking red hair and fiery temper, a receding chin with weak character. In children's stories stereotypes concerning appearance abound. We are all familiar with the notion that the ugly frog cannot marry the princess until he is transformed into a handsome prince! Evidence for the emphasis on physical appearance in society is plentiful. Millions of pounds are spent each year on cosmetic products and diet foods as people struggle to match up to the images promoted on television and in glossy magazines. Advertising constantly endorses the importance and benefits of physical attractiveness. Stereotypical type-casting is still rife in television and films. Characters with unprepossessing personalities and behavior are frequently portrayed as being ugly or in some way disfigured (Partridge, 1997). In Western society, language that reflects negative attitudes towards those who deviate from the perceived norm is used. Words such as ªabnormality,º ªdisfigured,º and ªflawedº convey the notion that there is something inherently ªwrongº about the way a person looks. The care and treatment of people with disfigurements reinforces this notion by seeking to ªnormalizeº appearance, thereby reinforcing the assumption that aesthetic improvement will enhance a person's quality of life (Rumsey, 1997). The involvement of psychologists in the field of physical appearance would also seem to reflect the current biases in Western societies. In the USA and the UK, funding and interest in the effects of physical attractiveness abounded in

The Causes of Disfigurement the 1960s and 1970s, with the bulk of studies attesting to the advantages of being beautiful. The effects of ugliness and disfigurement have been much less fashionable, however, and this field has attracted very few devotees. 8.25.1.2 Psychological Research, Theory, and Practice in Disfigurement As a consequence of the lack of involvement by researchers in this area, theory and research methodology are still at an early stage of development. The bulk of published research papers have emanated from the USA and the UK. They have focused on the prevalence of problems in relatively small samples of people with one type of disfigurement. The psychological effects of disfiguring burns and clefts of the lip and/or palate have received more attention than the consequences of port wine stains, various dermatological conditions, and disfigurements resulting from the removal of malignant tumors. Methodological problems include small, often nonrepresentative samples, cross-sectional designs, the lack of standardized measuring instruments, and a lack of attention to individual differences in adjustment. Since the mid-1990s, a handful of researchers have begun to use models and concepts derived from health and social psychology. However, there is much capital still to be gained by the appropriate application of these frameworks to future research. In view of the dearth of research studies and the lack of methodological sophistication, it is perhaps surprising that common themes emerge so strongly from the literature. Consensus exists amongst those in the field as to the most frequent problems experienced by people set apart from others by their visible difference, although knowledge of the factors underpinning individual differences in adjustment is still at the stage of informed speculation. 8.25.2 THE INCIDENCE OF DISFIGUREMENT The precise incidence of disfigurement is impossible to calculate. There are many physical characteristics (such as height and weight) which can be objectively measured. Normality and abnormalities of appearance are more problematic, involving cultural norms, and social comparison (Harris, 1997). Although estimates of the incidence of various types of congenital deformities can be calculated with reasonable accuracy, figures for the total incidence of visibly disfigured people in Great

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Britain rely on statistics collected by the Office of Population Censuses and Surveys (OPCS). According to the OPCS, approximately 400 000 adults and children in Great Britain have a ªsevere disfigurementº defined as a ªscar, blemish, or deformity which severely affects the ability to lead a normal lifeº (Martin, 1988; OPCS, 1988). The charity Changing Faces has used OPCS statistics to estimate that 10% of the population have some kind of disfigurement, with 2±3% having a difference which is clearly visible to others (Changing Faces, 1996). 8.25.3 THE CAUSES OF DISFIGUREMENT Physical appearance is influenced by genetic inheritance, the physiological processes of growth, development and aging, accidental trauma, disease, and medical or surgical intervention. Thus, the causes of disfigurement are many and varied. 8.25.3.1 Congenital Malformations Some disfigurements result from congenital malformations. The most common of these is a cleft (or gap) of the lip and/or palate, occurring about once in every 750 live births. Clefts of the lip can be unilateral or bilateral. Clefts occur twice as often in boys as in girls (Harris, 1997). Other malformations of the head and neck are numerous, but rare. They can result from a failure of part of the face to develop (e.g., the cheek bones and upper jaw in Treacher Collins syndrome), the absence or malformation of an ear, eye, eyelid, or the nose, or the premature fusion of the suture lines which separate the bones of the skull (as in craniosynostoses such as Cruzon's and Apert's syndrome). Some congenital syndromes involve additional difficulties, such as problems relating to feeding and drinking (as in cleft lip/palate), breathing, or sleeping (children with Apert's and Cruzon's syndromes have restricted nasal passages). In some infants, developmental delay and deficiencies in intellectual functioning are an added complication. Birthmarks of various types are caused by malformation of blood vessels. Vascular malformations such as capillary ªport wine stains,º or venous haemangiomas, are present at birth and persist throughout life. They can occur in skin on any part of the body, but are most common on the face. Port wine stains are very noticeable due to their distinctive color, but they rarely lead to distortions of normal shape or contour. Cutaneous haemangiomata (strawberry nevi) result from delayed maturation of blood vessels. They usually appear about two weeks

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after birth, and initially resemble bright red patches. During the next six months, they grow rapidly into raised red, blue, and gray masses (frequently resembling bruising), gradually subsiding over subsequent years (Harris, 1997). Malformations of limbs may be caused by a lack of development, either transversely (e.g., a missing hand or foot) or longitudinally (as in a ªclubº hand or foot). The most common malformation is syndactyly, or webbing, in which two or more fingers or toes fail to separate. Polydactyly is the presence of an extra digit. 8.25.3.2 Visible Differences Resulting from Developmental Change There is considerable debate about whether or not changes resulting from the processes of growth and development, childbearing, the distribution of fat, and aging should be included in the field of disfigurement. Harris (1997) has argued that developmental changes may result in an appearance which is considered abnormal and disfiguring either by the person involved or by others. These changes in appearance may lead to stereotyping (or the fear of stereotyping), for example, drooping eyelids may lead a person to appear constantly tired, lowered corners of the mouth may suggest depression and misery, changes in skin texture and tone may lead to negative judgements of general health and wellbeing.

used to recover areas of skin loss, also contract, leaving an irregular surface in addition to a discolored donor site. As the appearance and texture of skin varies from one part of the body to another, grafted skin may not match the original surrounding skin, further contributing to the disfiguration (Changing Faces, 1996). 8.25.3.4 Dermatological Conditions and Disease Dermatological conditions may result in changes in skin texture, unevenness, color, or coarseness of skin. Disfigurement can result from chronic skin conditions such as eczema, psoriasis (an incurable condition involving dry, flaking, and scaly patches of skin, occurring in 2±3% of the population), acne, rosacea (reddening of the skin), or from acne scarring. Neurofibromatosis results in patches of brown pigmented skin which can resemble freckles or can occur in large diffuse areas. In addition, sufferers can develop large numbers of very visible soft pinkish swellings or lumps. Vitiligo involves gradual depigmentation in the skin. The light patches become more extensive over time and can cover the whole body (Harris, 1997). Facial paralysis occurs when the nerves that control sensation and movement in the face are damaged. This may be the result of Bell's palsy, the consequence of a stroke, the result of injury, or surgical intervention to the face (e.g., in the removal of a facial cyst or tumor).

8.25.3.3 Injuries Caused by Trauma and Burns Injuries may be caused by a wide variety of incidents, for example, industrial accidents, assaults, road traffic accidents, incidents in the home, and attacks by animals. Some injuries are self-inflicted, such as tattoos or piercing. Scars associated with traumatic injury can be disfiguring when they result in alterations of shape, color, or contour, or if they are irregular or discolored (Harris, 1997). Facial disfigurements are particularly visible, and if they involve facial features or musculature, are likely to alter the person's repertoire of nonverbal behaviours. In Great Britain each year there are about 40 000 injuries involving scalds and burns, with 25% of these requiring admission to a specialist burns unit. About half of these burns affect children under age 15 (Settle, 1994). Although fairly common, the majority of burn injuries are superficial, resulting only in some discoloration of the skin. More extensive burns result in considerable disfigurement. As part of the healing process, scar tissue contracts. These contractures can distort surrounding skin, leading to extensive deformity. Skin grafts,

8.25.3.5 Disfigurements Resulting from Therapeutic Intervention Most operations leave a scar, the visibility and aesthetic quality of which depends on a number of factors. Harris (1997) outlined variables such as the direction of the scar in relation to lines of skin folds and skin tension, the part of the body operated on (scars on the face heal better than many other sites), the patient's characteristic disposition in relation to scar healing (scars may stretch in patients with overelastic skin, or stay thick and red in those with a tendency to form keloid scars) and the quality of wound healing (infections can contribute to poor-quality scarring). Scars will be more noticeable and disfiguring when they significantly alter the shape, tidiness, smoothness, and color of the affected area. Extensive disfigurements may result from surgical removal of malignancies, for example, tumors in the head and neck region, lumpectomy or mastectomy in the case of breast cancer, or the removal of digits or limbs. The incidence of skin cancer is increasing rapidly (Changing

The Treatment of People with Disfigurements Faces, 1996), and the wide excision of skin followed by skin grafts (frequently leaving a dish-like deformity) is a growing cause of postoperative disfigurement. Harris (1997) has noted that patients with scars of the wrist or neck as the result of surgical intervention (as, for example, in a tracheotomy) may be misjudged as suicide attempts. Other treatments may lead to temporary disfigurements. Pressure garments, worn to encourage the flattening of burns scars, are particularly visible. Chemotherapy may lead to the temporary loss of hair. Radiotherapy can cause discoloration of the skin and residual scarring. 8.25.4 THE TREATMENT OF PEOPLE WITH DISFIGUREMENTS 8.25.4.1 The Context of Treatment Provision People with visible disfigurements may come into contact with the health services in a number of ways. Those born with congenital abnormalities will encounter health care professionals at an early stage following birth. Contacts may continue through a substantial part of the lifespan. Others acquire disfigurements as the result of trauma and will encounter the health service on an unplanned basis. In these cases, referral for plastic surgery is usually secondary to emergency treatment for life threatening injuries and functional deficits. Others will be referred as conditions develop (e.g., those with skin malignancies, tumors, or neurofibromatosis). Sufferers of intermittent conditions (e.g., eczema, psoriasis, acne) may be treated by their general practitioner, with occasional referral for specialist treatment when the symptoms flare up. Some, particularly in the private sector, will seek referral for plastic surgery procedures. The services potential patients encounter will vary considerably, in terms of the professionals making up a care team, in the way care is delivered, and in relation to the funding of the units. Some patients may be referred to specialist, regional centres, staffed by multidisciplinary teams. Others may be treated in smaller, local, nonspecialist units. Treatment possibilities vary on the type and location of the disfigurement. However, treatment is generally provided within the framework of the biomedical model. The aim of surgical intervention (generally reconstructive and aesthetic plastic surgery) is to normalize patients' actual (and perceived) abnormalities of appearance. It is assumed that improvements in appearance will result in decreases in psychological distress and associated emotional and behavioral dysfunction.

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8.25.4.2 Reconstructive and Aesthetic Plastic Surgery Reconstructive techniques frequently involve additional disfiguration during the course of treatment. Most reconstructive procedures employ the patient's own skin, fat, muscle, or bone taken from donor sites, which will in turn be scarred. In the past, many grafts were undertaken in stages to reduce the risk of rejection. One end of the ªflapº was left in situ, while the other was attached to the donor site. The second end of the flap was repositioned only when the first stage of the graft had successfully taken. Although considerable advances have been made in grafting techniques, each graft carries a risk of failure. Successful skin grafts may differ in color and texture from the original and surrounding skin. In order to overcome this problem, tissue expanders have been employed, in which a balloon-shaped expander has been inserted under the skin adjacent to the area to be reconstructed. Injections of saline are used to progressively expand the balloon and the surrounding skin. The expanded skin is then used to reconstruct the adjacent deficit (Harris, 1997). With craniofacial defects and deformities, affected areas of the skull and facial skeleton are separated, then repositioned. Microplates are used to secure the repositioned sections of the skull and the affected facial structures. Additional surgical techniques are employed in those who do not require reconstructive techniques. Facial features such as the nose, chin, jaw, and cheek bones can be altered through bone grafting and bone reduction. The surface of skin may be altered by dermabrasion, chemical peeling, or skin planing. Previous scars can be revised to be less conspicuous. Subcutaneous fat and superfluous skin can be removed. Laser therapy has become available and is used for the reduction and in some cases removal of port wine stains and other vascular disorders. 8.25.4.3 Prosthetic Devices Prostheses are used for a range of purposes. A variety of implants have been developed to replace or augment breasts. In addition, prosthetic limbs are fitted following amputations or the loss of facial features such as eyes, ears, nose, cheek, and teeth. Developments in technology have led to great improvements in the appearance and tailoring of prostheses to an individual's requirements. The development of osseointegration now means that metal studs can be implanted into a bone allowing for much

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greater stability and security than was previously the case. 8.25.4.4 Cosmetic Camouflage In many hospitals, cosmetic camouflage is provided by make-up specialists. They use cosmetic products which have been specially developed to provide adequate coverage of the affected area, to be waterproof, and resistant to accidental removal. These products are particularly useful for those with skin discoloration such as birthmarks and very visible scars. Plastic surgeons employ a variety of techniques to treat people with disfigurements. Technological advances and the wider availability of plastic surgery are now widely advertised in magazines and other forms of the media. This increases the general acceptability of undergoing surgery to improve one's appearance and promotes the notion that visible variation is an abnormality requiring surgical intervention. 8.25.5 PSYCHOLOGICAL ASPECTS OF TREATMENT Many factors will influence the impact that treatment has on a person with a visible difference. These include pretreatment variables and factors related to the eventual outcome.

In the UK, National Health Service waiting lists in plastic surgery can be extensive, especially for nonfunctional problems. Potential patients may experience distress at the low waiting list priority allocated to their case. In cost-cutting exercises, many health care trusts have excluded certain procedures (e.g., the removal of tattoos) from their routine provision of care. 8.25.5.1.2 The outpatient experience Although ªhardº evidence is lacking, indications from the personal accounts of people with disfigurements suggest that several factors conspire to make outpatient consultations less than ideal. Prospective patients may have to travel long distances to regional centers. In addition to the consultation with the surgeon and/or the treatment team, the patient may be required to undergo x rays, photographs, and preoperative tests, with each procedure involving additional waiting time. This can increase distress, particularly for children and their accompanying parents. Many visibly disfigured patients feel uncomfortable waiting in busy, very public waiting areas. Pre-existing worries or fears may be exacerbated by seeing others who are at various stages of treatment. 8.25.5.1.3 The consultation

8.25.5.1 Elective Surgery 8.25.5.1.1 Motivation to seek treatment For the majority, decisions to seek surgical intervention to change appearance are influenced by a complex combination of variables, predominantly social and psychological in nature (Bull & Rumsey, 1988). A common motivator is the perception that a person's social life has been impaired by their appearance. As the result of problems in social interaction, many prospective patients experience high levels of self-consciousness and low self-esteem. The majority of people have been experiencing problems over a long period of time. Some have been encouraged or pressurized to seek treatment by family or friends, yet may personally feel ambivalent about the prospect. Those with disfiguration resulting from congenital abnormalities (e.g., cleft lip/palate) will routinely be offered surgical and orthodontic intervention to improve their appearance. However, as particular stages of physical growth are critical to the successful outcome of many procedures, patients may feel frustrated at having to wait for a particular developmental stage before a procedure is undertaken.

After months or years of waiting, consultations are likely to be brief. Aware of the time constraints faced by doctors, prospective patients (especially those in countries where health care is free at the point of delivery) feel under pressure to conclude the consultation quickly. Many patients feel that doctors are primarily concerned with any functional limitations associated with the disfigurement. They may underplay the extent of their concern and psychological distress. At larger centers, multidisciplinary teams can comprise up to 20 people (Hearst & Middleton, 1997), including junior doctors, trainees, and other visitors. Patients can find the experience of a consultation with a team very daunting. Turner, Thomas, Dowell, Rumsey, and Sandy (1997) reported that the majority of patients and families attending multidisciplinary craniofacial clinics experienced difficulties expressing their opinions and asking questions about treatment. The feeling of being looked at and assessed by a large team of people is distressing for many. Patients may be confused by the necessary discussions between professionals and the jargon used in these discussions (Hearst & Middleton, 1997). Questions may be forgotten

The Impact of Being Visibly Different and sensitive issues avoided. Actual or perceived time pressures can act as further barriers to open discussion and effective decisionmaking concerning treatment. 8.25.5.1.4 Hospital admission and the postoperative experience Following the decision to proceed with surgery, people with disfigurements will share the anxieties experienced by many patients surrounding admission to hospital and the immediate preoperative period. If their motivation for seeking treatment is largely psychosocial, they may fear negative evaluations by staff or fellow patients. Coping with additional disfiguration in the immediate postoperative period may be particularly difficult for patients who have long awaited improvements in their appearance. Following surgical intervention, patients will initially look very much worse due to swelling and bruising before any long-term change can be detected. Pruzinsky (1988) has noted that during this time, patients often experience depression, anxiety, and doubts about the eventual outcome of the surgical procedure. Reconstructive surgery involving complicated (and often unsightly) grafting procedures can take many years to complete. Orthognathic surgery can necessitate the immobilization of the jaw postoperatively and the administration of a liquid diet. For those undergoing laser treatment for vascular disorders such as birthmarks, the treated area may be reddened and sensitive. Patients may be unable to apply normal camouflage make-up to the affected area for a number of months. 8.25.5.1.5 Satisfaction with treatment outcome In line with treatment in many fields of health care delivery, the majority of patients report themselves to be satisfied following plastic surgery. Studies generally demonstrate decreases in depression, self-consciousness, and social anxiety, with increases in self-esteem (see, for example, Sheridan & Radmacher, 1992). However, correlations are not always observed between postoperative satisfaction and psychological improvement. Lovius et al. (1990) found patients who had undergone orthognathic surgery feared negative evaluation from others just as much after surgery as they had before, although improvements in body satisfaction were also reported. Rubinow, Peck, Squillace, and Gnatt (1987) wrote of continued problems with self-confidence and sensitivity to social rejection in patients whose acne had been substantially improved following treatment.

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8.25.5.2 Emergency Treatment Disfiguring injuries such as burns or head injuries will require emergency admission and treatment. The focus will initially be on stabilizing the patient, and subsequently on restoring function to damaged organs and limbs. In many cases, it will not be until after these issues have been addressed that residual disfigurement becomes an issue for the patient, the family, and the care team (Ambler, 1997). In the aftermath of dealing with the impact of the trauma, with unplanned admission to hospital and invasive, painful treatment, the realization that a person's former appearance will never be regained and the possibility of extensive permanent disfiguration result in an additional burden of stress for patients and their families. 8.25.6 THE IMPACT OF BEING VISIBLY DIFFERENT In a society which places a high premium on physical attractiveness and ªwholeness,º it is not surprising that a considerable research literature reports the benefits of having a physically attractive appearance. When compared with the first impressions formed of those with an unattractive facial appearance, goodlooking people are perceived to be more intelligent, popular, honest, and socially desirable (Bull & Rumsey, 1988). Research has suggested that in adults, attractiveness is positively related to expectations of future success, happiness, and satisfactory marital relationships. Research evidence suggests that children from as young as five years of age stereotype on the basis of physical appearance. Studies have reported that subjects choose more attractive children as potential friends, expecting them to be more popular and more intelligent than their less attractive counterparts (see, for example, Tobiasen & Hiebert, 1988). Teachers have also been shown to rate attractive children as more intelligent and popular (for a review, see Bull & Rumsey, 1988). Speculation about the origins of stereotypes and prejudices relating to physical appearance has focused on instinctive rejection of the less than perfect, a legacy of primitive beliefs, or processes of social conditioning and reinforcement based on ideals of attractiveness and the positive attributes that attractive people are assumed to possess and which, by implication, ugly or disfigured people supposedly lack. Research suggests that all of these explanations may play a part in responses to people on the basis of physical appearance (Rumsey, 1997).

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Despite the lack of research specifically examining the effects of having an unattractive or visibly different facial appearance, there is considerable agreement concerning the common problems experienced by those with visible disfigurements (Macgregor, 1990).

parents is that the child will look, and therefore somehow be different postsurgery. The parents have become attached to their ªdisfiguredº offspring and may fear losing the child they have learned to love. These anxieties are usually short-lived postoperatively.

8.25.6.1 The Birth and Early Development of a Disfigured Child

8.25.6.2 Childhood and Adolescence

Advances in antenatal screening may mean that some parents are aware that their child will be born with a defect, but for the majority this comes as a complete surprise. The reaction to birth of a child with a defect has been likened to a bereavement reaction (Lansdown, Lloyd, & Hunter, 1991). Parents are likely to experience a variety of negative emotions, including grief, anxiety, guilt, and shock. They are faced with an immediate crisis, which may be compounded by associated problems such as difficulties with feeding (as in clefts of the lip and/or palate). The handling of the birth is likely to have a major influence on the ability of the family to cope with the child's condition (Walters, 1997). The way the news is broken to parents has the potential to greatly affect their subsequent reaction. Staff may be as shocked as the parents, and may ªfreeze,º feeling uncertain of how to deal with the situation. Subsequent discussion of the diagnosis, prognosis, and treatment possibilities is also crucial. Speculation about the causes of congenital malformations, for example, can cause many parents to relive the pregnancy and birth over and over again, agonizing about what they might have done to have caused the defect in their child (Walters, 1997). Uncertainties and delays are potentially damaging, as is the lack of opportunity for parents and the immediate family to ask questions. The attachment of one or both parents to the infant may be adversely affected by the disfigurement. Less holding and less nurturant behavior have been observed by Barden, Ford, Jensen, Rogers-Sallyer, and Sallyer (1989) in mothers with craniofacially deformed children compared with those with normal appearance. A facial deformity may affect the normal movement of the baby's mouth and facial musculature, and may result in the caregiver misinterpreting the infant's emotional state. Smiling or other forms of interaction may also be affected, reducing the possibilities for reinforcement of caregivers (Walters, 1997). Many children with congenital defects require early corrective surgery. Once an attachment has been formed, a common fear amongst

For children and adolescents, the majority of problems focus on teasing and bullying by others, on fear of going to new places, and problems associated with negative feelings about the self (Bradbury, 1996). Preferences shown by others for physically attractive friends may mean that social withdrawal is more frequent and avoidance of social situations can undermine confidence in future. Pertschuk and Whitaker (1982) have reported anxiety in disfigured children to be more common than in nondisfigured children. However, disfigurements in children do not result in any identifiable personality pattern, in reports of delinquency, or in raised incidence of bad behavior (Lansdown et al., 1991). The jury is still out in relation to lack of educational success. Some studies have reported that disfigured children achieve less academic and occupational status, whereas others have found no difference between visibly different children and their peers (see Nash, 1995, in relation to cleft affected children). In adolescence, concerns about appearance can assume a new importance, and the onset of a disfigurement during adolescence is likely to be particularly distressing. Forming new relationships may be difficult if confidence in relationships has been steadily eroded (Walters, 1997). Adolescents with visible differences may lack the opportunities to try out new relationships and experiences (Sutherland, 1988). Leaving the familiar school environment can present difficulties. Disfigured adolescents and young adults may be disadvantaged in job interviews and prone to inaccurate stereotyping by potential employees. The family environment is likely to be of crucial importance to the well-being of a child or adolescent who is visibly different. The attitudes, expectations, and support offered by the family will have an enormous influence on the offspring's feelings of self-worth and the way they cope with the disfigurement (Blakeney, Portman, & Rutan, 1990). In some families, parents and children may not discuss their difficulties. The parents may worry about upsetting the child, and may also be having difficulties coping with their own emotions of guilt, anger, anxiety, or helplessness (Bradbury,

The Impact of Being Visibly Different 1996). Children may feel protective of their parents and consequently will not want to upset them by openly admitting they are experiencing problems. Parents may become overprotective of the child. Ginsburg and Link (1989) wrote of a psoriasis patient who referred to his mother treating him as her ªdefective cub.º The parents may find it hard to let go of their child, who in turn may find it difficult to leave the shelter of the family. Siblings may also suffer as a result of the disfigurement. The family may have to direct financial and emotional resources towards the disfigured child, at the sibling's expense. Parental absence may occur during hospitalization of the disfigured child. Later on, siblings may feel ashamed of their disfigured brother or sister, and may be reluctant to invite friends home (Walters, 1997). Despite the obvious problems encountered by children and adolescents with visible differences, some writers have questioned how they manage to be so ªnormal.º Lansdown et al. (1991) and others, believe that problems in adolescence and early adulthood are underreported, as most data is collected in response to questions asked in medical settings, frequently in an atmosphere unconducive to open discussion of social and psychological issues. Many writers agree that life is likely to be appreciably harder for those with a face which is out of the ordinary. Interestingly, data from 20-year-olds who have completed treatment for clefts of the lip and/or palate suggest that for a variety of reasons, including not wishing to upset parents, disappoint clinicians, or even admit to themselves, they had downplayed and under-reported the difficulties they experienced during childhood and adolescence (Rumsey, Robinson, Turner, & Mercer, 1997).

8.25.6.3 Common Problems Encountered by Adults 8.25.6.3.1 Negative feelings about the self Various negative emotions associated with visible disfigurements have been described in the literature, including negative self-image and low self-esteem. Many visibly different people feel shamed, embarrassed, or guilty about their appearance and report feeling in some way stigmatized or flawed. Salzer and Schallreuter (1995) reported that 75% of patients attending a vitiligo clinic found their disfigurement moderately or severely intolerable. Feelings of shame and embarrassment were reported in 89% of a sample of psoriasis patients (Ginsburg & Link, 1989).

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8.25.6.3.2 Problems with social encounters Situations involving encounters with others are frequently reported as problematic for visibly disfigured people (Macgregor, 1990). In studies of patients with vitiligo, Porter, Beuf, Lerner, and Norlund (1990) documented anxiety and embarrassment when meeting strangers. Difficulties are encountered in forming friendships (Lanigan & Cotterill, 1989) or beginning a new sexual relationship (Noar, 1991). Problems are particularly apparent at times of transition or change, for example, moving to a new neighborhood, job seeking, or changing jobs. Anecdotal evidence suggests that people with visible differences may have more trouble than their nondisfigured counterparts obtaining the kind of employment they would like. Some studies of people affected by a cleft of the lip have suggested that they achieve a lower occupational status than their peers (Nash, 1995). On the basis of her clinical experience, Bradbury (1996) suggested that lowered selfesteem and feelings of self-worth may result in disfigured people settling for inappropriate friendships and less-than-ideal partners in longer-term relationships. Other writers have suggested that fewer cleft affected people marry, and those that do have fewer children (see Nash, 1995 for a review). Many allude to a lack of privacy resulting from staring, pointing, ªdouble takes,º hurtful comments, and intrusive, unsolicited questions about the disfigurement (Robinson, Rumsey, & Partridge, 1996). Revealing the disfigurement to others (e.g., in certain weather conditions such as wind and rain) or being seen without makeup can be stressful. Lanigan and Cotterill (1989) reported that 9% of a sample of women did not reveal their birthmarks to their husbands. Others with visible disfigurements describe their distress when posing for a photograph, laughing, smiling, eating, or drinking in public, or unexpectedly catching sight of their own disfigurement in a mirror or shop window (Robinson, 1996). If the disfigurement appears to be contagious in some way (as in psoriasis and neurofibromatosis), sufferers are particularly sensitive to the fact that others may not wish to touch them. Dermatology patients often avoid activities where the skin might be ªon show,º such as swimming or holidaying in climates where minimal clothing is required (Jowett & Ryan, 1985). Many disfigured people complain that they are avoided or rejected by the general public. Studies of the process of social interaction have shown that avoidance does indeed occur. In

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addition, those people who do engage in interaction tend to stand further away from a disfigured person than from a nondisfigured one, and make less frequent eye contact during the interaction (Rumsey, Bull, & Gahagen, 1986). Why does this avoidance occur? A number of theories have been put forward, all of which may play a part in the avoidance experienced by visibly different people. Bernstein (1986) has suggested that because of the strong association between health and good looks, a person with a disfigurement may be avoided as they are assumed to have something which is contagious. In the context of the ªjust worldº hypothesis, Lerner (1970) proposed that people are assumed to have deserved their misfortune and, as discredited people, are therefore avoided. Langer, Fiske, Taylor, and Chanowitz (1976) suggested that uncertainty about how to behave can lead to a desire to escape or avoid an encounter. There is no doubt that a first encounter, particularly with a facially disfigured person, is potentially problematic, as the normal rules of social interaction will not apply. The disfigured person's capacity to communicate may be impaired or altered. The other party in the interaction may be concerned that if they use conventional patterns of nonverbal communication, they may be misconstrued (for example, eye contact directed at the face might be interpreted as staring). Avoidance may seem preferable to the risk of embarrassment for either or both parties. However, despite evidence that avoidance does occur, studies of prosocial behavior, particularly in situations where social interaction is unavoidable, suggest that some people respond more favorably to a disfigured person than to a nondisfigured person (Bull & Rumsey, 1988). 8.25.6.3.3 The behavior of the visibly different person During the 1990s, attention has been diverted towards the effects on social interaction of the behavior of disfigured people themselves. Many visibly different people become preoccupied with their appearance and the effect it may have on others. Anticipating negative reactions from others, they may adopt a shy, defensive, or aggressive style of interaction (Macgregor, 1990). They may actively seek out signs that other people have noticed the disfigurement and that they feel negatively about it. Strenta and Kleck (1985) used a make-up artiste to apply scars to subjects' faces. Unknown to some of the subjects, the scar was then removed (subjects were led to believe that a fixative was being

applied). Those who believed they were disfigured maintained the scar was being scrutinized by people with whom they subsequently interacted, and perceived more negative reactions from them. Such beliefs and resulting patterns of behavior will increase the likelihood of negative reactions from others. The notion of unfavorable perceptions by members of the public is therefore reinforced, and a cycle of spiraling problems may continue, including avoidance and social withdrawal by the disfigured person (Rumsey, Bull, & Gahagen, 1986). 8.25.6.3.4 Loss of identity through injury or treatment Following a traumatic injury, or rather more paradoxically, changes to appearance as the result of treatment, there can be an acute sense of loss of identity. In these cases, people complain that they no longer recognize themselves, nor look like the ªreal meº (Grealy, 1994). Distress may also result from feelings of loss of a family feature or a physical characteristic felt to reflect racial identity. The reaction to such changes in appearance has been likened to a bereavement reaction, particularly when it has been unanticipated (Bradbury, 1996). Old patterns of social behavior and styles of coping may no longer work so well, leaving the person vulnerable to problems in interactions and relationships with others. 8.25.7 INDIVIDUAL DIFFERENCES IN DISTRESS AND ADJUSTMENT Despite some commonality in the types of problems encountered by those with visible differences, there is wide variation in the degree of distress experienced. Little attention has been paid to identifying the factors which might predict individual differences in distress and adjustment. 8.25.7.1 The Etiology of the Disfigurement The cause of a disfigurement is an obvious variable when considering the potential impact on an individual. Complicating factors include feelings of blame or anger, whether any compensation claims are involved, and the degree of stigmatization felt in relation to the etiology. Adjustment is also likely to be linked to prognosis. Some disfigurements are temporary (e.g., acne, some trauma injuries), others are recurring (as in some dermatological conditions such as eczema), progressive (as in neurofibromatosis), or linked to the treatment of lifethreatening conditions such as cancer.

Individual Differences in Distress and Adjustment In noncongenital conditions, additional variables are likely to include pre-existing levels of attractiveness, social confidence and social skill, an individual's existing coping repertoire, levels of self-esteem and self-efficacy. Although the passage of time has been proposed as a great healer, the length of time a person has had a disfigurement is not a reliable predictor of distress or adjustment (Robinson, 1997).

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prone to distress associated with visible disfigurement. However, women may also find camouflage make-up more acceptable than their male counterparts. Men may find it more difficult to admit to concerns about their appearance than women. Although few researchers have found main effects for gender and distress, Robinson (1997) has suggested that gender is likely to interact with other factors such as the use of particular coping techniques, and the use of social support.

8.25.7.2 The Visibility and Extent of Disfiguration Many assume a direct relationship between the severity and extent of a disfigurement and the degree of distress experienced. However, one of the most consistent findings in the literature is the lack of such a relationship (see Robinson, 1997 for a review). Some writers suggest that the responses of others to major disfiguration are more consistent and predictable, whereas reactions to minor disfigurements are less easily predicted. Uncertainty as to the likely reactions of others may add to the difficulties encountered in social interactions. Disfigurements which are more readily concealed are associated with less distress. Porter, Beuf, Lerner, and Norlund (1986) found less distress in those suffering from vitiligo, which can be concealed with camouflage make-up, compared with patients with psoriasis. Williams and Griffiths (1991) found that burn injuries which could be covered were reported as less distressing than those in more visible locations. As mentioned above, disfigurements affecting the face can be particularly problematic due to the heavy involvement of the face in social encounters, and the role of the face in the process of impression formation. 8.25.7.3 Age and Gender The period of adolescence (E. Wallace, 1993) and the early twenties (Long & DeVault, 1990) appear to be times when psychological problems relating to disfigurement may be particularly severe. In addition, times of transition or change (e.g., changing schools, moving to a new neighborhood, changing jobs, new relationships) are widely acknowledged to create or to exacerbate existing problems. Little research has focused directly on the effects of gender in relation to adjustment to visible disfigurement. In more general terms, it has been pointed out that in our society, a high value is placed on personal appearance, with a disproportionate amount of this pressure directed at women (Liggett & Liggett, 1989). Consequently, it may be that women are more

8.25.7.4 Socioeconomic Status and Educational Level Few studies have examined the effects of intelligence, educational level, and socioeconomic status on adjustment. However, Lefebvre and Arndt (1988) have suggested that in children, intelligence is an important protective factor against maladjustment to facial disfigurement, as it is related to academic achievement, a sense of control, and competence. In Robinson's (1996) sample of adults with a variety of disfigurements, higher levels of educational achievement were found to be related to lower levels of anxiety and depression, fewer difficulties in social situations, and more confidence in the company of strangers. During the last decade, attention has turned to psychological factors which may be related to adjustment in people with disfigurements. 8.25.7.5 Coping Style In an examination of the coping styles employed by a broad sample of people with visible disfigurements, Robinson (1996) found little evidence of consistent coping styles. Instead, a wide variety of cognitive and behavioral coping strategies were used which varied according to the situation, and to a lesser extent on the prevalent mood. Common strategies included avoiding social situations, avoidance of reflective surfaces, escapism (e.g., drinking alcohol, smoking, using drugs), and distraction techniques (undertaking study, doing lots of exercise, doing alternative activities to promote distraction). A minority used strategies designed to gain some control in social encounters, for example, returning a stare, smiling, trying to be friendly, or initiating an interaction with a handshake. Additional techniques included self-talk and social comparison (ªit could be worse, I could have been badly burned insteadº). Camouflage techniques, for example, make-up, clothes, sunglasses, and a particular hairstyle were widely used. Others described seeking out social support

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(this was particularly the case for subjects of higher socioeconomic status) and seeking further treatment.

8.25.7.6 Social Support The evidence for the role of social support in adjustment is mixed, but largely supportive of the beneficial effects in a variety of subject populations (Robinson, 1996). Supportive families have been widely acknowledged to positively influence the psychological adjustment of children (see, for example, Blakeney et al., 1990). Orr, Reznikoff, and Smith (1989) examined the effect of social support upon the self-esteem, body image, and levels of depression in adolescent and young adult burn-injured patients. They found that perceived social support from friends was the most crucial factor in determining adjustment to disfigurement. In a study of head and neck cancer survivors, Baker (1992) found that perceived social support was positively related to patients' adjustment six months post-treatment. Davidson, Bowden, Tholen, James, and Feller (1981) reported in a long-term study of burned patients that social support from family, friends, and peers was significantly related to self-esteem, life satisfaction, and participation in social and recreational activities. Robinson et al. (1996) found that in a sample of people with a variety of facial disfigurements, decreases in depression scores following social interaction skills workshops were more notable for those living with another person, compared with those living alone. Moss (1997) has discussed the possibility that low social support might be a consequence as well as a cause of poor adjustment. He noted that Brewin, McCarthy, and Furnham (1989) argued that stigma produces anxiety, which can lead to social withdrawal. This withdrawal is likely to decrease the availability of social support. In the context of attributional theory, Brewin et al. proposed an example which is highly relevant to the situations experienced by those with visible differences. They suggested that when a person believes an event is likely to recur, when other people do not have to cope with a similar situation, and when similar stresses are likely to occur in a variety of circumstances, the perception that lower amounts of social support are available is likely to prevail. Although the precise mechanisms of the effects of social support remain unclear, important variables are likely to include the level of social support available, the type of

support, the quality of support, and the person's appraisal of the availability of support. Future research will need to explore why some people seem able to make better use of support than others, and how to help people maximize the benefits (Robinson, 1996).

8.25.7.7 Levels of Social Skill In addition to the individual differences in social skill which exist in the population as a whole, several factors may affect the level of social skill employed by visibly different people in their encounters with others. These factors include commonly reported experiences such as preoccupation with appearance, self-consciousness, social anxiety, a lack of confidence concerning social interactions, or the anticipation of negative reactions from others. In addition to effective self-presentation and communication, good social skills involve the accurate interpretation of information from others. This information is likely to affect both the self-image and feelings of self-worth. As discussed above, the selective attention employed by some visibly different people to the more negative aspects of this feedback is likely to compound pre-existing difficulties in social interaction. 8.25.8 THE ROLE OF PSYCHOLOGISTS IN HEALTH CARE PROVISION Within the health services, the provision of care to meet the psychosocial needs of people with disfigurements is patchy at best. It is widely acknowledged, particularly in the UK, to be inadequate (L. Wallace, 1988). The lack of specialized support is partly the result of resource constraints, but also reflects the prevailing biomedical model of care. Although interventions designed to improve appearance are undoubtedly important, they form only part of the whole picture. Pruzinsky (1988) and others have argued that psychological factors play a part in all stages of elective, reconstructive, and emergency surgery. Psychological research, assessment, and interventions would therefore be appropriate at all of these stages.

8.25.8.1 Outpatient Care and Preoperative Assessment Visits to outpatient clinics may occur for a number of reasons. Some people seek an appointment with a view to surgical intervention to improve their appearance. Others (e.g., those with congenital or chronic dermatological

The Role of Psychologists in Health Care Provision conditions) attend for regular outpatient consultations. Although rarely in evidence, psychologists have a potential role to play in all aspects of outpatient care.

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With minor alterations, the clinic environment can provide an atmosphere and ethos more conducive to open discussion and effective decision making concerning treatment. The waiting area should be considered, as patients' pre-existing worries and fears may be exacerbated by the presence of others who are at various stages of treatment. Long waiting times provide the opportunity for a preliminary chat with a team member in order to allay fears and to establish an agenda for the subsequent consultation. If the patient is to be assessed by a multidisciplinary team, a system of individual appointments could be implemented, as many patients and their families report difficulties openly discussing their motivation and their concerns about treatment in front of a large group of professionals. If a team appointment is unavoidable, arrangements could be made to put patients more at ease. In an outpatient craniofacial clinic in Bristol, UK, a system of advocacy has been used with some success by the author and the treatment team (details available on request). A team member meets with the patient and family before the consultation, with the aim of putting them more at ease and eliciting their main concerns. This team member then presents and reviews the case for the team, and subsequently acts as an advocate for the patient and family in the consultation, supporting and if necessary, prompting them if they wish.

Factors precipitating the decision to seek surgery should therefore be explored. In a preoperative assessment, the psychologist should decide whether another intervention, for example, counseling, psychotherapy, or social interaction skills training, would be appropriate either as a forerunner, an adjunct, or as an alternative to surgery. If the person is experiencing significant additional stressors, it may be appropriate to delay surgery in case the disfigurement has become a ªhookº on which to hang other problems. Specialist psychological interventions in the treatment of dermatological conditions have been reported in the literature. Although the mechanisms are not yet clear, psychological distress is thought to play a part in some skin diseases. In some cases, suggestion, with or without hypnosis, has been shown to produce palpable modifications of skin diseases. Grossbart and Sherman (1986) found the concept of a ªcellular battle,º in which healing forces are imagined to attack and overwhelm the skin disease, to produce beneficial results. Brown and Fromm (1987) have reviewed treatment methods for a range of skin complaints including acne, psoriasis, eczema, and virusmediated diseases. Although the psychological interventions appear to have been useful in each of these, the majority of reports comprise case studies, or small samples lacking adequate controls. A psychosocial assessment can be a useful screening device for those unlikely to derive benefit from surgical intervention. Concern has been expressed as to the advisability of treating those seeking cosmetic surgery for relatively minor, and in some cases invisible, disfigurements (see comments on BDD in Section 8.25.1).

8.25.8.1.2 Psychosocial assessment

8.25.8.1.3 Facilitating decision-making

Carr (1997) has pointed out that although the technical outcome of a treatment is a matter for judgement by a clinician, the effectiveness of the treatment depends on the extent to which it meets patients' needs. Critical to this process is a thorough and accurate assessment of the patient's initial problems and expectations. Carr suggests that assessment should explore the person's current state, previous and ongoing difficulties, current coping strategies, expectations of outcome, and the anticipated impact of the desired changes on current problems. Macgregor (1990) pointed out that the decision to seek surgery should be a personal one and not the result of pressure from family or friends. It is likely that the majority of patients will have been experiencing distress for some time.

Making decisions about treatment for visible disfigurements can be difficult for all parties involvedÐthe potential patient, the family, and the professionals providing the care (Bradbury & Middleton, 1997). The priorities of those involved in the decision-making process are likely to vary. There may be treatment options to consider (e.g., which reconstruction technique to choose, whether or not to opt for a prosthesis). The timing of surgical intervention can be particularly critical in childhood and adolescence. The balance between waiting for physical growth to be completed and the psychological problems linked with the disfigurement may be a precarious one. The level of involvement of young patients in decisions concerning treatment is often less than ideal.

8.25.8.1.1 The clinic environment

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Visible Disfigurement

Children and adolescents frequently report that treatment decisions are made by the clinicians and parents, and they feel they have little say. In such cases, there will be a need to elicit the views of the young person before treatment decisions are finalized and to provide an atmosphere in which it is possible to say ªnoº to treatment. Psychologists clearly have a potential role in promoting effective decision-making, for example, by ensuring that comprehensible and user-friendly information (written, verbal, or taped) is available, and by checking the level of understanding of those involved in the decision-making process (Bradbury & Middleton, 1997). 8.25.8.1.4 Preparation for surgery Once the decision has been made to proceed with treatment, psychologists can usefully play a part in the preparation of patients for surgery. In some cases there may be a need to address concerns relating to a diagnosis. Prospective patients are likely to benefit from accurate information about the procedures they will undergo. Realistic expectations about the likely results should be established in order to minimize any discrepancy between expectations and outcome. The postoperative period should be discussed, for example, the likelihood of bruising and swelling, and possible functional restrictions following surgery. Presurgery, highly anxious patients may benefit from relaxation training or an exploration of other potentially beneficial coping skills. Outcome research in the areas of plastic and orthognathic surgery suggest that predictors of positive adaptation to surgery include a good repertoire of coping skills, good overall body image, good social support, and a positive relationship with the treatment team (Pruzinsky, 1988).

acute phase frequently relates to the experience of pain, to sleep deprivation, to anxiety associated with unplanned hospitalization, and to emotions related to the cause of the injury. As this phase passes, intervention may be required in order to establish realistic expectations of the outcome of surgery (e.g., in relation to the person's original appearance and function). Careful management is needed of the first glimpse the patient has of his/her disfiguration. Ambler points out that this can be stagemanaged by the deliberate introduction of a mirror, or that it may happen unexpectedly if the patient happens to glance at a reflective surface. Clearly, a more proactive approach than is currently the norm is needed in the management of psychological symptoms during the acute and early recovery stages of trauma care. Ambler (1997) has pointed out that this approach to care is likely to pay dividends in terms of better longterm trust and cooperation from patients, in addition to better adjustment. Staff need to be made more aware of the causes and nature of the psychological problems experienced and advice should be given about appropriate intervention. As in all treatment teams involved in the care of people with disfigurements, staff will need to make decisions about who will be responsible for the psychological aspects of care. 8.25.8.3 The Postoperative Period Pruzinsky (1988) has noted that in the immediate postoperative period, patients often experience depression, anxiety, and doubts about the eventual outcome of the surgical procedure. Reassurance and empathy are appropriate postoperatively and are likely to be well received from a psychologist or member of the health care team who has established a rapport with the patient in the preoperative stage.

8.25.8.3.1 Discharge planning and preparation 8.25.8.2 Emergency Admissions Ambler (1997) has argued that psychological factors are involved at every stage of hospital care following a severe disfiguring injury. Accidents do not occur entirely at random. There is a greater tendency for accidents to be experienced by people who are for some reason vulnerable. Burn injuries, for example, are sustained more often by the very young or the elderly, or by people who are confused or unwell. Consequently, pre-existing problems need to be considered as part of the emotional response to the trauma. Ambler (1997) maintains that distress in the

For those with extensive disfiguration, predischarge liaison with schools or the workplace has been shown to be beneficial (Bernstein & Robson, 1993). This can help to prepare the patient for a return to everyday life and will also be useful for peers, teachers, or colleagues who may be uncertain of how the patient will look and of how they should behave. Although staff in the unit, close family, and friends may have become accustomed to the disfigurement, facing the general public can be a major hurdle. A program of accompanied trips, first around the hospital and latterly to venues beyond the familiar surroundings, is likely to be helpful (Ambler, 1997).

Psychological Interventions and the Developmental Process 8.25.8.3.2 Long-term follow-up Psychological support may also be necessary in the longer term following planned or emergency surgical intervention. Many problems may be encountered in adjusting to scarring and altered appearance in the longer term, whether or not a ªgoodº surgical outcome has been achieved. Some people experience unwelcome feelings of change to their ªidentityº (see Section 8.25.6.3.4). Some have difficulties in dealing with changes in the level of attention from others, whether this is an increase due to the onset of a visible disfigurement, or a decrease resulting from a now unremarkable appearance. Others express disappointment, as expectations of change in their lives are not fulfilled. A few may demonstrate an inappropriate desire for further surgery. 8.25.8.4 Emotional Support for Professional Carers Ambler (1997) has discussed the emotional strain on those professional carers who are engaged in treating people with extensive disfiguration. Particular pressures result from caring for patients requiring intensive treatment (for example, as the result of severe trauma or burns), and those with life-threatening conditions (as in advanced cancer of the head or neck). Although widely recognized as desirable (see, for example, Bernstein & Robson, 1983), the routine provision of staff support is the exception rather than the rule. Psychologists are well qualified to initiate, participate in, and evaluate a variety of methods of formal support, and to encourage informal support amongst team members. 8.25.9 PSYCHOLOGICAL INTERVENTIONS AND THE DEVELOPMENTAL PROCESS In addition to providing psychological services as an integral part of hospital-based care, information, support, and in some cases individual or group interventions are likely to be particularly appropriate at key stages of the development of the disfigured person and their family. 8.25.9.1 The Birth and Early Development of a Disfigured Child Responses to birth defects are influenced by the cultural and social context in which they occur (Strauss, 1985). However, as described in Section 8.25.6.1, in most societies, the emotional response to the birth of a congenitally deformed

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child has been likened to a bereavement reaction. Staff may also experience shock following the birth of an abnormal baby. The sensitive handling of the birth itself is essential, as is the provision of appropriate support immediately after the birth and in the weeks following discharge from hospital. Ideally, this would require specialist training of midwives, community, and hospital staff, and the availability of a psychologist who could meet with parents and support staff at short notice. In the case of craniofacial anomalies, for example, cleft palate, or craniosynastosis, early surgery will be necessary. At this stage, parents will need detailed information, help with decision-making, and emotional support to address fears relating to the outcome of surgery (Hearst & Middleton, 1997). In conditions where the relationship between the care team, the patient, and the family is likely to continue over a long period of time, the early establishment of rapport and trust with a team member is likely to be of considerable benefit. The psychosocial development and well-being of the child should be checked on a regular basis, with appropriate advice, support, and referral for psychological intervention offered if problems are identified. Bradbury (1996) has advocated particular psychosocial interventions designed to tackle the problems commonly faced by disfigured children. These may include play therapy in preparation for surgery, and the teaching of specific skills to deal with teasing or bullying by other children. A child can be encouraged to learn strategies for dealing with the behavior of others. Bradbury has suggested a ªforce-fieldº in which the child imagines she/he is protected by an invisible barrier, which deflects the insulting ªarrowsº back towards the offending person. The child can be encouraged to role play difficult situations, substituting and practising alternative responses. 8.25.9.2 The Family Environment The family environment is of crucial importance to the well-being and support of disfigured people at all stages of development. Clinical experience suggests that disfigured children and adults have better prospects in a family that places little emphasis on the role of physical appearance in a successful and fulfilling life. Parents can be encouraged to develop positive coping strategies and to model adaptive ways of dealing with unkind comments and stares. They can be advised to encourage their children to focus on other, more positive attributes, and to foster their child's independence.

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Interventions may be necessary to tackle communication difficulties within families. Children frequently report that they do not want to hurt their parents' feelings by talking openly about their problems, and parents may similarly feel that a cheerful exterior should be preserved at all costs. Families may need support in making treatment decisions, for example, in relation to the timing of hospitalization. Siblings may be the casualties of extra time, effort, and attention which may be devoted to the disfigured child. For many of these problems, supportive listening and empathy may suffice. Other family issues are more complex and will require professional intervention. 8.25.9.3 Social Interaction Skills Since the mid-1970s there has been a huge amount of interest in ªsocial therapyº and its application to a variety of problems concerning social functioning. Argyle's (1988) social skills model suggested that problems experienced during social interaction can be ameliorated through the development of a new repertoire of social behaviors, designed to elicit more positive response from others. Social skills training has been shown to improve the social problems experienced by various groups with problems similar to those experienced by disfigured people, for example, those with spinal cord injury (Dunn, van Horn, & Herman, 1981) and those with social phobia (Wlazlo, Schroeder, Hand, Kaiser, & Munchau, 1990). As many of the problems associated with visible difference are associated with social encounters with others, attention in this field has been focused on the possible benefits of social interaction skills training. The results of a small-scale study by Rumsey et al. (1986) suggested that facially disfigured people could influence the impressions formed of them by others through the use of social interaction skills. Robinson et al. (1996) evaluated social interaction skills workshops developed and offered by the charity Changing Faces. Sixty facially disfigured attenders reported high levels of anxiety and social anxiety preworkshop. However, six weeks postworkshop and at sixmonth follow-up, participants reported significantly less anxiety both in general and social situations, and significantly more confidence in the company of strangers and when meeting new people. Participants liked being able to discuss their problems with others who could empathize. They also reported that the workshop had made them more aware of the way strangers feel when meeting a person who is visibly different. This understanding in some cases led to a greater

tolerance and a desire to put the other party at ease. However, despite generally positive results, there was also considerable individual variation in the improvements made following the workshops. Clearly, a great deal of effort is required to change long-established patterns of behavior. Long-term follow-up and support are likely to be required to maximize the gains achieved. Additional strategies for tackling problems in social encounters have been recommended by others with clinical experience of disfigurement. For those suffering from staring or from a heightened vigilance about the reactions of others, Bradbury (1996) advocates behavioral strategies such as unfocusing the eye and not seeing others, or cognitive strategies such as distraction, or thinking of others as being unaware of what they are doing, rather than trying to do harm. The further development of psychological interventions to ameliorate the problems associated with social interaction would seem to be worthwhile. There is a consensus amongst workers and researchers in the field that an abnormal appearance can even become a positive advantage for those at ease with their appearance, and confident in their ability to establish and maintain effective relationships.

8.25.10 DISFIGUREMENT AND PSYCHOLOGY: PROFESSIONAL ISSUES There is considerable potential for greater involvement by psychologists in the field of visible disfigurement. Efforts to improve the lot of visibly different people are needed on several fronts, not all of which relate directly to health care. In the past, disfigured people and researchers alike have discussed the desirability of changing society's bias towards physical attractiveness and ªwholeness,º with the aim of removing the stigma associated with visible difference. Experience in other areas of attitude change (e.g., in relation to racial prejudice) suggests this is an ambitious, laborious, and time-consuming task, but not one which should be shirked. There is a need, for example, to increase the general public's knowledge about the causes and consequences of disfigurement, and to increase awareness of the distress experienced by those who are set apart from others by virtue of their appearance. Psychologists have been, and should continue to be, involved in producing documentaries, books, and articles aimed at increasing levels of relevant knowledge and awareness.

References A novel initiative aimed at changing attitudes in relation to appearance was launched in the UK in 1995 by the charities The Phoenix Appeal and Changing Faces. An educational pack has been developed which includes a teacher's guide, sample lesson plans, activity ideas, and videos. The aim of the pack is to encourage children and teachers to explore issues relating to appearance and the effects of disfigurement within the school curriculum, in the hope that a greater understanding of visible difference will be fostered at an early age. Clinical and health psychologists have been involved in the development and the ongoing evaluation of this pack. In terms of changing the prevailing ethos of health care provision and delivery for visibly disfigured people, psychologists have an obvious role to play. Several suggestions are made in this chapter for how they might contribute, but what sort of psychologists (or other health care professionals) should fill the various roles? The choice of individuals will depend on availability and local circumstances, however, clinical and health psychologists would seem to be particularly well placed to provide an appropriate service. Although there will be some overlap between these subspecialties, clinical psychologists, by virtue of their training, are likely to have skills well suited to the assessment of patients, to the development and implementation of interventions, and appropriate outcome measures. Health psychologists have the potential to evaluate and advise on treatment provision, to audit patient needs, to devise and evaluate appropriate packages of care to meet those needs, and to further knowledge through the application of theories and models to research in the area. The way in which psychological support and interventions should be provided is currently a subject of debate. A routine presence of a psychologist in those outpatient clinics and inpatient wards dealing with people with visible differences is desirable. However, these clinics are numerous, and a lack of appropriately trained psychologists coupled with the inevitable lack of funding means this is very much the exception rather than the rule. A cost-effective alternative is being piloted in the UK in the 1990s. Outlook, a Disfigurement Support Unit, based at Frenchay Hospital in Bristol, is being funded on a three-year trial basis by the charity Changing Faces. The unit is staffed by two part-time clinical psychologists (one adult and one child specialist), and an ªoutreachº community link worker. The work of the unit is being evaluated by a health psychologist. The unit takes referrals from a wide variety of specialities in the South and West regions of the UK, including burns, plastic

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surgery, dermatology, orthodontics, laser therapy, and community agencies. Staff provide a specialist assessment and intervention service for patients experiencing problems related to a disfigurement. Social interaction skills and cognitive-behavioral interventions are offered to patients on an individual or group basis. In addition, the unit is also a source of information and support for families. Early indications are that the service is being well received by patients, families, and staff. 8.25.11 CONCLUSIONS There are numerous stressors associated with being visibly different in a society which places considerable emphasis on physical attractiveness and ªwholeness.º These can have a significant impact on people disfigured and their families. Current care provision focuses on improving function and aesthetics. It has not, in the most part, taken account of what is known from psychological theory and research. There is a lack of understanding, both about the psychosocial problems associated with disfigurement and of ways of addressing these. Disfigurement is not a glamorous speciality. It does not easily attract funding for treatment and research. However, considerable benefit could be derived from the involvement of psychologists in raising awareness, changing attitudes, and in the provision of care. There is a wealth of theory and research in health psychology which could usefully be applied as the field of disfigurement grows in sophistication and significance. 8.25.12 REFERENCES Ambler, N. (1997). Case studies. In R. Lansdown (Ed.), Visibly different: Coping with disfigurement (Chap. 25). Oxford: Butterworth-Heinemann. Argyle, M. (1988). Social relationships. In M. Hewstone (Ed.), Introduction to social psychology: A European perspective (pp. 224±245). Oxford: Blackwell. Baker, C. (1992). Factors associated with rehabilitation in head and neck cancer. Cancer Nursing, 15, 395±400. Barden, R., Ford, M., Jensen, A., Rogers-Sallyer, M., & Sallyer, K. (1989). Effects of craniofacial deformity in infancy on the quality of mother±infant interactions. Child Development, 60, 819±824. Bernstein, N. (1976). Emotional care of the facially burned and disfigured. Boston: Little, Brown. Bernstein, N., & Robson, M. (1983). Comprehensive approaches to the burned person. New York: Medical Examination Publishing. Blakeney, P., Portman, S., & Rutan, R. (1990). Familial values as factors influencing long-term psychological adjustment of children after severe burn injury. Journal of Burn Care and Rehabilitation, 11, 472±475. Bradbury, E. (1996). Counselling people with disfigurement. Leicester, UK: BPS Books. Bradbury, E., & Middleton, J. (1997). Decision-making

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about treatment. In R. Lansdown (Ed.), Visibly different: Coping with disfigurement (Chap. 23). Oxford: Butterworth-Heinemann. Brewin, C., McCarthy, B., & Furnham, A. (1989). Social support in the face of adversity: The role of cognitive appraisal. Journal of Research in Personality, 23, 354±372. Brown, D., & Fromm, E. (1987). Hypnosis and behavioral medicine. Hillsdale, NJ: Erlbaum. Bull, R., & Rumsey, N. (1988). The social psychology of facial appearance. New York: Springer. Carr, A. (1997). Assessment and measurement. In R. Lansdown (Ed.), Visibly Different: Coping with disfigurement. Oxford: Butterworth-Heinemann. Changing Faces (1996). Facial disfigurement: The full picture. London: Author. Davidson, T., Bowden, M., Tholen, D., James, M., & Feller, I. (1981). Social support and post-burn adjustment. Archives of Physical Medicine and Rehabilitation, 62, 274±278. Dunn, M., van Horn, E., & Herman, S. (1981). Social skills and spinal cord injury: A comparison of three training procedures. Behaviour Therapy, 12, 153±164. Ginsburg, I., & Link, B. (1989). Feelings of stigmatization in patients with psoriasis. Journal of the American Academy of Dermatology, 20, 53±63. Grossbart, T., & Sherman, C. (1986). Skin deep: A mind/ body program for healthy skin. New York: Morrow. Grealy, L. (1994). In the mind's eye. London: Century. Harris, D. (1997). Types, causes and physical treatment of visible differences. In R. Lansdown, N. Rumsey, E. Bradbury, A. Carr, & J. Partridge (Eds.), Visibly different: Coping with disfigurement (Chap. 14). London: Butterworth-Heinemann. Hearst, D., & Middleton, J. (1997). Psychological intervention and models of current practice. In R. Lansdown (Ed.), Visibly different: Coping with disfigurement (Chap. 22). Oxford: Butterworth-Heinemann. Jowett, S., & Ryan, T. (1985). Skin disease and handicap: An analysis of the impact of skin conditions. Social Science & Medicine, 20(4), 425±429. Langer, E., Fiske, S., Taylor, S., & Chanowitz, B. (1976). Stigma, staring and discomfort: A novel-stimulus hypothesis. Journal of Experimental Social Psychology, 12, 451±463. Lanigan, S., & Cotterill, J. (1989). Psychological disabilities amongst patients with port wine stains. British Journal of Dermatology, 121, 209±215. Lansdown, R., Lloyd, J., & Hunter, J. (1991). Facial deformity in childhood: Severity and psychological adjustment. Child: Care, Helath and Development, 17, 165±171. Lefebvre, A., & Arndt, E. (1988). Working with facially disfigured children: A challenge in prevention. Canadian Journal of Psychiatry, 33, 453±458. Lerner, M. (1970). The desire for justice and reactions to victims. In J. Macaulay & L. Berkowitz (Eds.), Altruism and helping behaviour. New York: Academic Press. Liggett, A., & Liggett, J. (1989). The tyranny of beauty. London: Gollancz. Long,D.,&DeVault,S.(1990).Disfigurementandadolescent development: Exacerbating factors in personal injury. AmericanJournalofForensicPsychology,8,3±14. Lovius, B., Jones, R., Pospisil, O., Reid, D., Slade, P., & Wynne, T. (1990). The specific psychosocial effects of orthognathic surgery. Journal of Cranio-Maxillo-Facial Surgery, 18, 339±342. Macgregor, F. (1990). Facial disfigurement: Problems and management of social interaction and implications for mental health. Aesthetic Plastic Surgery, 14, 249±257. Martin, J. (1988). Surveys of Disability in Great Britain. Report: The prevalence of disability among adults. London: HMSO.

Moss, T. (1997). Individual differences in adjusting to visible differences. In R. Lansdown, N. Rumsey, E. Bradbury, A. Carr, & J. Partridge (Eds.), Visibly different: Coping with disfigurement (Chap. 18). London: Butterworth-Heinemann. Nash, P. (1995). Living with disfigurement: Psychosocial implications of being born with a cleft lip and palate. Aldershot, UK: Avebury. Noar, T. (1991). Questionnaire survey of attitudes and concerns of patients with cleft lip and palate and their parents. Cleft Palate-Craniofacial Journal, 28, 279±284. Office of Population Censuses and Surveys (1988). Surveys of Disability in Great Britain. Report. London: HMSO. Orr, D., Reznikoff, M., & Smith, G. (1989). Body image, self-esteem and depression in burn injured adolescents and young adults. Journal of Burn Care and Rehabilitation, 10(5), 454±461. Partridge, J. (1997). Living visibly different. In R. Lansdown (Ed.), Visibly different: Coping with disfigurement (Chap. 12). Oxford: Butterworth-Heinemann. Pertschuk, M., & Whitaker, L. (1982). Social and psychological effects of craniofacial deformity and surgical reconstruction. Clinics in Plastic Surgery, 9(3), 297±306. The Phoenix Appeal & Changing Faces (1995). Face Values: An education pack for Key Stages 1 & 2. London: Changing Faces. Porter, J., Beuf, A., Lerner, A., & Norlund, J. (1986). Psychological effects of vitiligo: A comparison of vitiligo patients with ªnormalº control subjects, with psoriasis patients and with patients with other pigmentary disorders. Journal of the American Academy of Dermatology, 15, 220±224. Porter, J., Beuf, A., Lerner, A., & Norlund, J. (1990). The effect of vitiligo on sexual relationships. Journal of the American Academy of Dermatology, 22, 221±222. Pruzinsky, T. (1988). Collaboration of plastic surgeon and medical psychotherapist. Medical Psychotherapy, 1, 1±13. Robinson, E. (1996). An analysis of stress, coping and adjustment in relation to facial disfigurement. Unpublished MSc thesis, University of Exeter, UK. Robinson, E. (1997). Psychological research on visible differences in adults. In R. Lansdown (Ed.), Visibly different: Coping with disfigurement (Chap. 16). Oxford: Butterworth-Heinemann. Robinson, E., Rumsey, N., & Partridge, J. (1996). An evaluation of the impact of social interaction skills training for facially disfigured people. British Journal of Plastic Surgery, 49, 281±289. Rubinow, D., Peck, G., Squillace, K., & Gnatt, G. (1987). Reduced anxiety and depression in cystic acne patients after successful treatment with oral isotretinoin. Journal of the American Academy of Dermatology, 17, 25±32. Rumsey, N. (1997). Historical and anthropological perspectives on appearance. In R. Lansdown (Ed.), Visibly different: Coping with disfigurement (Chap. 15). Oxford: Butterworth-Heinemann. Rumsey, N., Bull, R., & Gahagen, D. (1986). A preliminary study of the effects of social skills training for improving the quality of social interaction for the facially disfigured. Social Behaviour, 1, 143±145. Rumsey, N., Robinson, E., Turner, S., & Mercer, N. (1997). Patient or provider centred care? Transactions: 8th International Congress on Cleft Palate and Related Craniofacial Anomalies (pp. 423±426). Stamford Press. Salzer, B., & Schallreuter, K. (1995). Investigation of the personality structure in patients with vitiligo and a possible association with catecholamine metabolism. Dermatology, 190, 109±115.

References Settle, J. (1994). Burn care facilities in the United Kingdom. London: British Burn Association. Sheridan, C., & Radmacher, S. (1992). Health Psychology: Challenging the biomedical model. New York: Wiley. Strauss, R. (1985). Culture, rehabilitation and facial birth defects: International case studies. Cleft Palate Journal, 22(1), 56±62. Strenta, F., & Kleck, R. (1985). Physical disability and the attribution dilemma: Perceiving the causes of social behaviour. Journal of Consulting & Clinical Psychology, 3, 129±142. Sutherland, S. (1988). Burned adolescents' description of their coping strategies. Heart & Lung, 17(2), 150±157. Turner, S., Thomas, P., Dowell, T., Rumsey, N., & Sandy, J. (1997). Psychological outcomes amongst cleft patients

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and their families. British Journal of Plastic Surgery. Wallace, E. (1993). Nursing a teenager with burns. British Journal of Nursing, 2, 278±281. Wallace, L. (1988). Abandoned to a social death? Nursing Times, 84, 34±37. Walters, E. (1997). Problems faced by children and families living with visible difference. In R. Lansdown (Ed.), Visibly different: Coping with disfigurement (Chap. 17). Oxford: Butterworth-Heinemann. Williams, E., & Griffiths, T. (1991). Psychological consequences of burn injury. Burns, 17(6), 478±480. Wlazlo, Z., Schroeder, H., Hand, I., Kaiser, G., & Munchau, N. (1990). Exposure in vivo vs. social skills training for social phobia: Long term outcome and differential effects. Behavioral Research & Therapy, 28, 181±193.

Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.26 Dental Health GERRY KENT University of Sheffield, UK 8.26.1 INTRODUCTION

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8.26.2 DENTAL ANXIETY AND DENTAL PHOBIA

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8.26.2.1 Description 8.26.2.1.1 Phobias 8.26.2.2 Epidemiology 8.26.2.3 Etiology 8.26.2.3.1 Negative experiences 8.26.2.3.2 The dentist±patient relationship 8.26.2.3.3 Modeling 8.26.2.3.4 Biological characteristics 8.26.2.4 Maintenance of Anxiety 8.26.2.5 Impact on Quality of Life 8.26.2.6 Treatment 8.26.2.6.1 Aspects of the intervention 8.26.2.6.2 Patient characteristics 8.26.2.6.3 The dentist±patient relationship 8.26.3 PREVENTIVE CARE

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8.26.3.1 Epidemiological Studies 8.26.3.2 Improving Preventive Care 8.26.3.2.1 The educational approach 8.26.3.2.2 The behavioral approach 8.26.3.2.3 Social cognition models 8.26.4

CONCLUSIONS

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8.26.5 REFERENCES

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psychological approaches to the control of temporomandibular pain dysfunction syndrome (Cohen & Hillis, 1979; Gessell & Alderman, 1871; Locker & Slade, 1988; Pomp, 1974; Rugh & Solberg, 1976; Rugh, 1977, see also Chapter 8.24, this volume). Because virtually everyone in Western societies has need of dental care and has contact with professional services, research in these areas does not need to be limited to small numbers of patients with particular problems. In many ways, the dental setting can be considered as a kind of natural laboratory where people have to cope with stressful events on a regular basis. Young children are required to meet and deal with

8.26.1 INTRODUCTION Dental health is of interest to psychologists for both theoretical and therapeutic reasons. Theoretically, the study of dental care provides an opportunity to conduct research into a variety of areas relevant to psychology, including occupational stress (Cooper, Watts, Baglioni, & Kelly 1988; Hilliardlysen & Riemer, 1988; Kent, 1987b), the care of patients with handicaps (Brown, 1980; Clevenger, Wigal, Salvati, & Burchill, & Crinella 1993) or who are elderly (Ettinger, 1984; Strauss & Hunt, 1993), the effects of surgery for cosmetic or structural reasons (Kent & Johns, 1993; Kiyak, 1993), and 595

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strange adults, often for the first time (see Chapter 8.27, this volume), and dental health requires preventive care at home on a regular basis, as well as professional interventions, so that theoretical notions concerning health promotion and self care are relevant. The dental setting has also proved to be an ideal situation to test and develop theories of the cognitive aspects of anxiety and pain. Levels of anxiety state rise and fall and Pavlovian learning processes are mediated and affected by cognitive processes such as memory, perceptual biases, and catastrophic thinking patterns. Much of this theoretical work has had a direct influence on clinical practice as provided by dentists and clinical psychologists. Increasingly, dentists are calling upon psychologists to help them help their patients. Dentists are aware that sociological and psychological factors play important roles in achieving dental well-being. Psychologists can help in the design of health promotion material and can provide training in aspects of managing pain and improving dentist±patient communication. Clinical psychologists can provide therapeutic interventions. Because of the extensive research on the etiology, nature, and correlates of dental anxiety, a number of efficacious interventions have been developed. Study of the efficacy of these approaches can then be fed back to elaborate theoretical considerations. The purpose of this chapter is to describe some of the research on the applications of psychology to dental health. It covers two of the topics mentioned above. Because the bulk of research has been conducted on dental anxiety and dental phobia, this area is given the most attention. The other topic covered is the promotion of preventive care, which has been problematic in many areas other than dentistry (see Chapter 8.29, this volume). 8.26.2 DENTAL ANXIETY AND DENTAL PHOBIA This section of the chapter is concerned with the measurement, epidemiology, etiology, maintenance, and treatment of dental anxiety and phobia. 8.26.2.1 Description As outlined below, dental anxiety and dental phobia are common. Depending on how it is measured, 3±5% of the general population can be said to have debilitatingly high levels of fear of dentistry. Insofar as fear can result in avoidance of professional care, an understanding of this difficulty could have many beneficial effects for dental health.

When asked, most people in the community agree that regular professional care is an important aspect of dental health. Yet 40±45% attend only when they are experiencing symptoms (Todd, Walker, & Dodd, 1982). Although reasons for this discrepancy include financial considerations and family patterns of care, one significant factor is anxiety level. Longitudinal studies have indicated that highly anxious patients are less likely to make, and more likely to break, dental appointments (Curson & Coplans, 1970; Stewart, Marcus; Christenson & Lin, 1994). Many authors have concluded that there is an indisputable relationship between avoidance and poor oral health. There is evidence that patients with high levels of anxiety are more likely to have experienced extractions and to have more decayed surfaces and fewer fillings (Bedi, Sutcliffe, Barrett, & McConnachie, 1992; Hakeberg, Berggren, & Grondahl, 1993; Kaufman, Rand, Gordon, & Cohen, 1992; Klingberg, Lofqvist, Bjarnason, & Noren, 1994; Locker & Liddell, 1992). It is possible that a vicious circle develops, in which fear leads to avoidance of professional dental care, which in turn leads to greater perceived need and greater anxiety (Moore, Brodsgaard, & Birn, 1991). But, in fact, the relationship between anxiety, attendance, and dental health is far from clear. Some patients attend regularly despite high levels of anxiety. It may be that some patients are anxious because of their perceptions of the poor state of their oral health, or they may have become anxious because of previous extractions rather than vice versa. Also, there are many influences on oral health, including diet and fluoridation of toothpaste and of the water supply. It is possible that these background factors may be responsible for high anxiety or outweigh the disadvantages of poor attendance per se. Milgrom, Weinstein, and Getz (1995) use Miller's (1959) description of approach± avoidance conflicts to explain the relationship between perceived need for care on the one hand, and reluctance to attend on the other. They suggest that due to knowledge about the consequences of neglect and cultural pressures to attend the dentist, most people are motivated to attend. If anxiety is low, then there would be little conflict with this approach motivation and regular appointments would be made and kept. If, however, a patient were anxious, a conflict would develop as the time for an appointment approached. In keeping with research on increasing anxiety state and intrusiveness of cognitions over time (Jongh & Stoutland, 1993; Kent, 1987a; Kent & Gibbons, 1987 and see below), such a conflict could result in a ªno showº or canceled appointment.

Dental Anxiety and Dental Phobia 8.26.2.1.1 Phobias DSM-IV (American Psychiatric Association, 1995) indicates that an individual with dental fears ought to meet seven criteria to qualify for diagnosis of a specific phobia: (i) Marked and persistent fear that is excessive or unreasonable, cued by the presence or anticipation of a specific object or situation. (ii) Exposure to the phobic stimulus almost invariably provokes an immediate anxiety response. (iii) The person recognises that the fear is excessive or unreasonable. (iv) The phobic situation(s) is avoided or else endured with intense anxiety. (v) The avoidance, anxious anticipation, or distress in the feared situation interferes significantly with the person's normal routine, occupational functioning, social activities, or relationships, or there is marked distress about having the phobia. (vi) In individuals under age 18 years, the duration is at least six months. (vii) The anxiety, panic attacks, or phobic avoidance are not better accounted for by another mental disorder. In the literature on dental phobia, some of these criteria are better researched and more adequately measured than others. Whereas there are several scales designed to measure the extent of anxiety according to criteria (i), (ii), and (iv), not until the 1990s have criteria (v) and (vii) received attention. There are several self-report questionnaires. Perhaps the best-known and most commonly used scale is Corah's Dental Anxiety Scale or DAS (Corah, 1968), a four-item self-report questionnaire with scores ranging from 4 (low) to 20, with a score of 12 or greater indicating moderate anxiety and a score of 15 or greater indicating extreme anxiety (Corah, Gale, & Illig, 1978). It is quick to complete and provides a general measure of perceived emotional arousal and physiological reactions. A scale which inquires about fears of specific aspects of the dental setting (e.g., about drilling, injections) is the Dental Fear Survey or DFS (Kleinknecht, Klepac, & Alexander, 1973), which has somewhat more support in terms of validity and reliability (Moore, Berggren, & Carlsson, 1991; Schuurs & Hoogstraten, 1993) than the DAS. The Dental Belief Survey is concerned with patients' beliefs about the way they are treated interpersonally by dentists, including such items as ªdentists do not really listenº and ªI don't feel comfortable asking questionsº (Milgrom, Weinstein et al., 1995; Smith, Weinstein, Milgrom, & Getz, 1984). There are several other scales (Jongh &

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Stouthard, 1993; Schuurs & Hoogstraten, 1993; Horst & Wit, 1993) which attempt to gauge various aspects of these social and emotional aspects of the dental situation. There has been interest in assessing the cognitive component of dental anxiety. As in the case with other types of anxiety, attentional bias has been shown to occur in dental anxiety. Muris, Merckelbach, and Jongh (1995) used the Stoop test to examine the biases of patients with high and low dental anxiety, as measured by Corah's DAS. Highly anxious participants were significantly slower in naming words related to dental threats (e.g., nerve, blood, drilling, tooth) than those with low anxiety, but levels of trait anxiety and type of coping behavior (monitoring vs. blunting (Miller, 1987)) were not related to speed of naming. With the recognition that highly anxious dental patients experience many more negative cognitions of a catastrophic kind than low anxiety patients (Jongh, 1993; Jongh, Muris, Horst, Van-Zuuren, & Wit, 1994; Kent & Gibbons, 1987), Jongh, Muris, Schoenmakers, and Horst (1995) have developed the Dental Cognitions Questionnaire, which contains such items as ªI will panic during treatment,º ªsurely something will go wrong,º and ªanesthetics often do not workº: patients are asked to indicate both the frequency and the believability of the statements. Not only does the frequency of such thoughts discriminate extremely well between phobic and nonphobic patients, but they contribute substantially to the variance in anxiety state. There are also many scales which are appropriate for children, which can be completed by parents, such as the dental subscale of the Children's Fear Survey (Klingberg, 1994) or scales which are completed by children themselves. The latter include projective techniques (Klingberg & Hwang, 1994) and asking children to choose between a set of pictures which illustrate varying levels of distress (Venham, 1979). Besides self-report questionnaires, attempts have also been made to assess the physiological aspects of dental anxiety and phobia, but as in other areas there are many conceptual difficulties in dealing with results. Several studies (Benjamins, Schuurs, Asscheman, & Hoogstraten, 1990; Berggren & Carlsson, 1985; Carlsson, Linde, Berggen, & Harrison, 1986; Harrison, Carlsson, & Berggren, 1985; Hugdhal & Ost, 1985) have shown that there is no clear correspondence between measures of physiological arousal as measured by heart rate, skin conductance, or blood pressure. Although Lang's (1971) three-factor model of anxiety does not require concordance between self-report, and behavioral and physiological

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reactions, one would expect that there would be fairly consistent differences between high and low anxious patients, or that there would be changes on physiological indices after successful therapeutic interventions. However, this has not been shown consistently (Carlsson et al., 1986; Hirschman, Revland, Hawk, & Young, 1969).

8.26.2.2 Epidemiology The prevalence of dental anxiety and phobia is interesting in its own right, but by examining age and cultural patterns it might also be possible to identify factors which are relevant to etiology. If prevalence rates vary across cultures, for example, it is plausible that learning processes, cultural beliefs, or the way that dental care is delivered, may be crucial in the development of dental phobia. On the other hand, if prevalence is similar across cultures, then biological processes could be more significant. Estimates of the prevalence of extreme levels of dental anxiety and phobia vary with the populations studied and the measures used. In several studies with a variety of populations, mean scores on the DAS range between 7 and 8 (Horst & Wit, 1993; Kaufman et al., 1992). Using the criterion of scores of 15 or greater, studies have indicated that between 3% and 5% of people in unselected adult populations experience severe dental anxiety (Hakeberg, Berggen, & Carlsson, 1992; Kleinknecht et al., 1973; Klingberg, Berggen, & Noren, 1994; Moore, Birn, Kirkegaard, Brodsgaard, & Scheutz, 1993; Vassend, 1993), but there are a few higher estimates, of up to 13% or higher (Horst & Wit, 1993; Mellor, 1992). For children and adolescents, using different scales, the estimates tend to be somewhat greater, from 6% to 7% (Klingberg, 1994; Moraes, Milgrom, Tay, & Costa, 1994). Using self-reported avoidance to define extreme anxiety, the prevalence seems to be higher. For example, in a large representative Dutch sample, 36% reported ªdreadº of visiting the dentist (cited in Lindsay & Jackson, 1993). While it is possible to make some general observations concerning prevalenceÐthat high levels of dental anxiety are very common in all countries studied, they are more likely in women than in men, and they peak during early adolescence and decline with advancing age (Liddell & Locker, 1993)Ðthe wide range of instruments used means that it is not possible to provide a definitive answer with respect to prevalence. Prevalence studies using standard measures with representative samples are still

required (Vassend, 1993). In order to understand etiologic processes, it is necessary to move away from epidemiological data towards more psychologically based research. 8.26.2.3 Etiology In general, the evidence suggests that a Pavlovian model is helpful in understanding the onset of dental anxiety and dental phobias. The classical conditioning model applied to this situation is that an Unconditioned Stimulus (UCS) (e.g., pain during an invasive dental procedure), which results in the Unconditioned Responses of anxiety and flight, has been paired with a Conditioned Stimulus (CS) (e.g., a dentist, the dental office, the sounds made by dental instruments), so that presentation of the UCS results in anxiety and dental avoidance. This useful model, however, needs to be adapted to include the idea of latent inhibition, issues of perceived control, innate biological predispositions to learn anxiety responses, and the nature of the dentist±patient relationship. Unfortunately, the reliance on retrospective accounts of past traumas and experiences is exceeding problematic for many reasons, and there is a dearth of longitudinal research. 8.26.2.3.1 Negative experiences The notion that dental anxiety is the result of a classically conditioned association between pain and dental care has been supported many times (Horst & Wit, 1993; Hugdhal & Ost, 1985; Ost, 1987; Milgrom, Mancl, King, & Weinstein, 1995; Moore, Berggren et al., 1991). It received early support from Lautch (1971), who interviewed phobic and nonphobic patients about their previous experiences. In his sample of 34 phobics, all reported at least one previous traumatic experience with dental careÐusually the experience of intense painÐwhereas only 10 of the 34 nonphobics could remember such an incident. Of the phobic patients who had returned to a dentist at least once after the trauma (30 patients), all reported further traumas but only one of the nonphobics did so, suggesting that more than one negative experience is often needed for the development of a phobia. This Pavlovian model is consistent with the notion of preparedness, that humans are innately predisposed to become anxious about some objects and situations more readily than others (Silva, 1988). It is possible to see a link with dentistry in this regard. Lying on one's back with an adult placing sharp instruments in the mouth ªshould,º in some sense, be

Dental Anxiety and Dental Phobia frightening. Anxiety might be heightened particularly if the adult is a stranger (patients often find the prospect of joining a new practice distressing because they are concerned that the dentist will have a rough manner) or if the child is a patient (where there is a large disparity of strength). This attractive idea goes some way towards explaining the widespread prevalence of dental anxiety, why anxiety is most likely to develop before adulthood, and why it is often associated with fears about pain and mutilation. However, there are a number of difficulties with this explanation which relates conditioning processes with preparedness. One difficulty is that many people who are not highly anxious or phobic have also experienced a situation where classical conditioning could be expected to occur. In one large scale survey, 30% of respondents reported that they had experienced ªintenseº or ªviolentº pain at some point in their dental care histories (Vassend, 1993). Conversely, some phobic patients cannot recall such an incident (Moore, Brodsgaard, & Birn, 1991). Another difficulty is that all of these studies have relied on retrospective accounts of experience, thus introducing all the cognitive and memory biases that retrospective accounts involve. For example, the timing of the request for information on previous experiences may be relevant. Many of the studies in this area have asked patients to recall incidents when they arrive for treatment, or at least when they are scheduled to attend, when levels of anxiety state are high. In a study designed to explore the effect of anxious mood on recall, Kent (1989) asked patients to describe a previous visit to a dentist, but some were asked to do this just before a dental appointment, whereas others were asked to do so just afterwards. Patients with higher levels of dental anxiety rated their previous experience as being more unpleasant than patients with lower anxiety. For females, but not for males, the experience was rated as being significantly more unpleasant before the appointment than afterwards. When judges were asked to rate the vividness of the descriptions, a similar pattern emerged. Thus, it is plausible that anxious patientsÐwhose levels of anxiety state are high before an appointmentÐmay recall previous incidents as being very unpleasant because of their anxious mood, and not vice versa. A third difficulty with these studies is that phobic patients are typically asked to relate their current feelings to previous experiences. This raises issues of attribution, particularly the tendency to attribute negative events to external causes (Ross, 1964). It is possible that individuals who are already highly anxious, perhaps because of other factors or high levels of trait

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anxiety, will attribute their anxiety to a previous dental appointment, whereas others with low trait anxiety, who might have undergone a similar experience, will not do so. In the absence of a method for objectively rating the aversiveness of an experience, attribution theory can provide an equally plausible explanation for the association between ªtraumaticº events and the onset of a dental phobia. Davey (1989) and Jongh et al. (1995) have added a degree of sophistication to this area by exploring the possibility that latent inhibition is relevant to this learning process. Latent inhibition refers to the hypothesis that if a CS (in this case a visit to the dentist) is presented alone on several occasions before it is paired with the UCS (a painful or traumatic experience such as pain), then it is more difficult to condition an association between the CS and UCS than if there were no CS alone trials prior to conditioning. Thus, according to this principle, dental patients might not become anxious if they have a history of previous positive (or at least not negative) visits to the dentist. Although Davey and Jongh et al. again relied on retrospective accounts in their studies with students, they attempted to specify the conditions under which traumatic events failed to promote the development of anxiety. Davey asked his sample to indicate their current levels of anxiety, their experiences of pain or trauma in the dental setting, and, importantly, whether their levels of anxiety had changed over time. One group consisted of people who had always been anxious about dental treatment, a second group consisted of those who were once anxious but were now more relaxed, a third group comprised those who were once relaxed but who were now anxious, and the fourth group comprised those who had always been relaxed. For the present purposes the important finding was that, in both studies, latent inhibition seemed to have been operating. Subjects who reported the experience of a traumatic event but who did not become anxious were more likely to have had a number of previous nontraumatic encounters. Latent inhibition was attenuated after the experience of a particularly painful event. Like Lautch (1971), Davey found that those who had always been anxious had received two or more aversive experiences. Clearly, prospective studies are required before such conclusions can be confirmed. One of the great weaknesses of research in dental anxiety and phobia is the almost complete lack of longitudinal data. An important exception to this is provided by Murray, Liddell, and Donohue (1989). They collected data from children aged 9 and then again at age 12, while monitoring their dental experiences

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from dental records. Children who did not receive invasive treatment (i.e., having an injection, having teeth filled or removed) during this time were significantly more anxious than those who had received treatment, while the anxiety of children who attended regularly and who had experienced invasive treatment did not change significantly. This result implies that exposure acts prophylactically and is inconsistent with the notion of latent inhibition. 8.26.2.3.2 The dentist±patient relationship Most of the research relating dental anxiety to experience involves encounters with pain. However, there is another thread of research which examines encounters with the dentist him or herself. Bernstein, Kleinknecht, and Alexander (1979) first divided their sample of students into high- and low-fear groups. The students were then asked to write an essay describing their visits to the dentist as children. These essays were to include ªthe features and events associated with those visits which determine present attitudes.º Of the high-fear group, 42% mentioned pain during early appointments as a factor in their present feelings about dental care, compared to 17.4% of the low-fear students. While these proportions discriminated between the groups to some extent, there was still the 58% of high-fear students who did not cite pain as a factor and a sizeable minority of low-fear students who did experience pain. This overlap was clarified by considering another factorÐthe perceived manner of the dentist. Half of the high-fear group mentioned negative behavior on the part of the dentist as a factor in their present feelings, most of these not citing pain as a reason for their current anxiety. The dentists were considered ªimpersonal,º ªuncaring,º ªuninterested,º or ªcold.º Furthermore, of the low-fear group who had experienced pain as children, many found the dentist ªcarefulº ªpatient,º and ªfriendly.º The effects of any pain seemed to have been mitigated by a caring and concerned dentist. Thus this study suggested that the dentist had an independent effect on the students' feelings (i.e., cold or uninterested behavior was enough to make some students feel negatively about dentistry) and an interactive effect (i.e., caring and warmth could obviate the long-term effects of painful experiences). 8.26.2.3.3 Modeling Besides the direct experience of aversive events, there is evidence that learning can take place in a more indirect fashion, via modeling

or cultural beliefs about an association between dental care and pain. Social learning theory would suggest that children could learn that professional dental care is painful and distressing through observing parental reactions in the dentist's office or hearing about negative experiences. A number of studies have implicated the importance of parentalÐespecially maternalÐresponses to dental care as an etiologic influence (Corkey & Freeman, 1994; Horst & Wit, 1993; Klingberg et al., 1994; Milgrom, Mancl, King, & Weinstein, 1995). However, such learning may be overridden by actual experience rather quickly (Koenigsberg & Johnson, 1972). In most cases these studies are again reliant on retrospective accounts (although actual observational studies support a link; Johnson & Baldwin, 1968), and may be more relevant to the development of moderate, rather than extreme, levels of anxiety. In any case, it is not possible to disentangle learning processes from biological ones in these studies: it is possible that children of anxious parents are fearful themselves not because they had observed distress but because both children and parents share a genetic propensity to be anxious. This possibility leads to another major explanation as to the etiology of dental fearÐ the notion that there are individual differences in propensity to learn anxiety responses. 8.26.2.3.4 Biological characteristics If the conditioning approach places the cause of phobias within the experience of dental trauma, the biological approach suggests that there are individual differences in how patients react to dental care. It is possible that some people will be more liable to learning anxiety responses than others. This approach is particularly relevant to the finding that, in some patients at least, anxiety occurs in the absence of any specifiable negative experience. Some children are very anxious on their first visit, for example. There are three types of study which support this approachÐstudies on temperament, studies on neuroticism, and studies on other psychiatric difficulties reported by phobic patients. The concept of temperament is based on the work of Thomas and Chess (Thomas, Birch, Chess, Hertzig, & Korn, 1963), whose studies describe the range of responses given by young children, especially when they encounter new situations. These reactions emerge at a young age and can persist for many years. Of particular relevance to this area is the notion of the ªdifficult child,º one who tends to withdraw from and who has difficulty in adapting to novel situations. The relevance of temperament has

Dental Anxiety and Dental Phobia been explored in five studies (Holst, Hallonsten, Schroder, Ek, & Edlund, 1993; Liddell, 1990; Lochary, Wilson, Griffen, & Coury, 1993; Radis, Wilson, Griffen, & Coury, 1994; Williams, Murray, Lund, Harkiss, & Franco, 1985), all of which suggest that children who have difficulty in meeting unfamiliar people and coping with new situations are less likely to be able to accept routine dental care, even under sedation (Lochary et al., 1993). Associated with temperament is Eysenck's notion of neuroticism. Again, several studies (Frazer & Hampson, 1988; Horst & Wit, 1993; Klepac, Dowling, & Hauge, 1982; Lautch, 1971) have indicated that patients with high levels of dental anxiety also score highly on the N scale of the Eysenck Personality Inventory (EPI) or Eysenck Personality Questionnaire (EPQ). Taken together, the work on temperament and neuroticism would suggest that many people with high levels of dental anxiety also have a number of other unrelated anxieties and concerns. This is a central issue, since it bears upon the possibility that dental anxiety and phobia can be indicative of more general psychological or psychiatric difficulties, rather than as a specific difficulty. There is now growing evidence that this is often, but not always, the case (Alwin, Murray, & Niven, 1994; Brown, Wright, & McMurray, 1986; Corkey & Freeman, 1994; Horst & Wit, 1993; Klingberg et al., 1994; McNeil & Berryman, 1989; Milgrom, Weinstein, & Getz 1995; Moore, Brodsgaard, & Birn, 1991). A 1994 study (Roy-Bryne, Milgrom, Khoon-Mei, Weinstein, & Katon, 1994) indicated that in a sample of phobic patients, 40% could be assigned another concurrent psychiatric diagnosis, such as panic disorder.

8.26.2.4 Maintenance of Anxiety In many respects, it is possible to see how high levels of dental anxiety are maintained, due to the defining characteristic of avoidance. A decision to put off visiting a dentist would itself be reinforcing since it results in a short term reduction of anxiety, as Mowrer's (Mowrer, 1960) two-stage theory would suggest, and temporarily reduces the approach± avoidance conflict (Milgrom, Weinstein et al., 1995). It would also explain how anxiety could increase over time. As perceptions of worsening dentition increase, so would the perception of the need for invasive treatment. However, this behavioral approach does not explain why many patients who continue to attend regularly still experience high levels of anxiety. Although

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anxious patients typically experience much less pain than they expect (Kent & Warren, 1985; Lindsay & Jackson, 1993), high levels of anxiety are often maintained. There are several possible reasons for this apparent paradox. One reason is that dentistry is not consistently pain-free. One survey of dentists themselves indicated that local anesthetics can fail in about 13% of instances (Kaufman, Weinstein, & Milgrom, 1984), so that one negative experience could reconfirm an anxious patient's belief that dental treatment can be painful and thus anxiety is maintained. Lindsay (Lindsay & Jackson, 1993) argues that the anxious patient may believe that it is less distressing to expect painÐjust in case it occursÐand be pleasantly surprised if it doesn't, than be unexpectedly hurt. The negative effects of unpredicted sudden pain have been demonstrated, under experimental conditions, supporting this idea. Arntz and colleagues (Arntz, Eck, & Jong, 1991; Arntz, Eck, Jong, & Hout, 1990) have demonstrated that underpredicted pain experiences increase anticipatory anxiety and avoidance, and also result in dishabituation (Arntz & Lousberg, 1990). Even if all future dental appointments were pain free there are several cognitive mechanisms which can be used to explain the maintenance of anxiety. One concerns the notion of typicality. As noted above, latent inhibition theory suggests that dental anxiety is unlikely to develop if the patient had previously experienced many pain-free appointments. In the language of cognitive heuristics, this could be seen in terms of typicality: one painful experience could be interpreted as anomalous and unlikely to recur. The converse of this is that anxiety might be maintained if pain-free experiences were seen as atypical, perhaps as a result of chance, rather than because of the nonaversive nature of care itself. Kent (1986) explored this possibility by first ascertaining the discrepancy between expected pain (as ascertained before the appointment) and experienced pain (as ascertained at the end of treatment). Patients were also asked at the completion of the appointment to indicate the extent to which they believed the amount of pain they experienced was typical through the question ªHow confident are you that you will experience the same amount of pain (on the next appointment) as today?º When contacted three months later, decreases in dental anxiety were found for patients who (i) experienced a sizeable discrepancy between expected and experienced pain and who (ii) had a high level of confidence in the typicality of this discrepancy. A decrease in anxiety was less likely if the patient had low confidence. It is possible, then, that regular

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attendance, and the experience of pain-free dentistry, is slow to result in a reduction of anxiety because of the covariation biases which can be present in phobias more generally (Jong, Hout, & Merckelbach, 1995). The common six month period between appointments may also contribute to the persistence of anxiety for patients who require little treatment. The ªnaturalº exposure that regular attendance implies may not be sufficiently frequent. Studies of the effectiveness of behavioral therapies suggest that interventions for phobias and anxiety are more efficacious if they are applied frequently (e.g., a few times per week over a few weeks) rather than infrequently (e.g., one or two days per month) (Marshall, Gauthier, & Gordon, 1980). In cognitive terms, frequent interventions may be more efficacious in altering expectations than infrequent ones because there is less opportunity for positive experiences to be reconstructed into existing anxiety-dominated schemata. That such schemata can serve to maintain anxiety was shown in two studies (Arntz, Eck, Jong et al., 1990; Kent, 1985b) where patients were asked to indicate the levels of expected pain (before the appointment), their levels of experienced pain (afterwards), but were then contacted again three months after the appointment. On this later occasion they were asked to recall the amount of pain they had experienced at the appointment. The findings implicated the relevance of cognitive structures, since the amount of pain remembered by the anxious patients had increased over time, becoming more similar to the original expected pain, while the nonanxious patients recalled their levels of experienced pain more accurately. Clearly, there is considerable scope for future research into the reasons why anxiety is maintained, but equally importantly into the reasons why anxiety comes to be reduced without formal interventions. Although longitudinal studies are more expensive in time and effort, they are clearly needed here, since they could provide information which could serve to inform the choice and design of therapeutic interventions, an area which is considered below.

8.26.2.5 Impact on Quality of Life While the scales and measures discussed earlier attempt to assess level of anxiety according to the (i), (ii), and (iv) DSM-IV criteria, since the mid-1980s there has been interest in criterion (v): the effect on social relationships and activities, or what has become known as quality of life. Not only might a

phobia lead to avoidance of professional care, but also embarrassment, days off work, and a degree of social isolation. Research in these areas is begining to appear. Berggren and Carlsson (1986) found that successfully treated phobics reported several areas of psychosocial improvement, including reduced alcohol intake and reduced time on sick leave and, as shown below, treatment of dental phobia can improve functioning in these areas. Berggren (1993) sent questionnaires to 109 patients who were referred for assistance to a dental anxiety clinic. Although there was no comparison group, many patients scored highly on a modified Nottingham Health Profile, with 52% indicating that their dental fear caused problems with social activities (eating out, meeting friends), 46% with going on vacation, and 41% with family relationships. These types of situations, which demand interactions with other people, could be severely curtailed. Another approach was taken by Kent, Rubin, Getz, and Humphries (1996), who designed a scale to measure the social and psychological effects of phobias. They compared the responses of patients who had been refered for anxiety difficulties with patients attending an emergency dental clinic for other difficulties. The phobic patients were more likely to endorse items which indicated social and cognitive consequences (e.g., ªI feel that people will laugh at me if I tell them about my fears about dentistryº and ªthe need to see a dentist is constantly on my mindº), avoidance (e.g., ªwhen walking or driving somewhere I take a route in order to avoid passing by a dentist's officeº and ªI become upset when I see adverts on TV about tooth decay and tooth lossº), and social inhibitions (e.g., ªI stop myself from smiling or I cover my mouth when I laughº and ªI am reluctant to meet new people because of the state of my teethº). Thus, it can be argued that an accurate and complete assessment of dental phobia needs to include a variety of areas. Stouthard, Hoogstraten, and Mellenberg (1995) contend that there are three facets to dental phobias; namely a situation facet (including the nature of the dentist±patient relationship as well as the specific fears of particular procedures, such as drilling and extractions, and preliminary aspects, such as sitting in the waiting room and making an appointment), a time facet (as the appointment approaches in time), and a reaction facet (including effect, physical reactions, and cognitive intrusions). The Dental Anxiety Inventory includes items on all three aspects of the phobia and, with development, could provide a more comprehensive assessment than other scales.

Dental Anxiety and Dental Phobia 8.26.2.6 Treatment A wide variety of interventions have been employed in the treatment of dental anxiety and phobia, with considerable success. With doubts about the appropriateness and safety of general anesthesia, there has been a growing interest in the use of conscious sedation as afforded by nitrous oxide (Roberts, Gibson, Porter et al., 1979; Veerkamp, Gruythuysen, Hoogstraten, & Amerongen, 1993) and other sedatives (Kupietzky & Houpt, 1993). Several behavioral therapies have also been used in dentistry, ranging from such minimal, yet effective, interventions as information leaflets (Jackson & Lindsay, 1995) and the playing of music (Anderson, Baron, & Logan, 1991), which are probably most effective for low or moderate levels of anxiety, to more intensive interventions which are appropriate for extreme levels of anxiety. Many of these interventions involve a traditional graded exposure approach to the dental setting, the encouragement of patient control while receiving dental treatment, and attention-focusing techniques such as hypnosis (Gokli, Wood, Mourino, Farrington, & Best, 1994; Horst & Wit, 1993; Kent, 1985a, 1991; Melamed, 1979; Robertson, Gatchel, & Fowler, 1991). As would be expected, they are successful in relieving anxiety for most patients (Milgrom, Weinstein et al., 1995; Moore, Brodsgaard, Berggren, & Carlsson, 1991b), although across many studies approximately 25±35% of patients do not benefit or cannot follow through with treatment. One possible reason for apparent lack of success for some patients concerns the choice of outcome measure. The most usual measures concern reductions of anxietyÐeither anxiety state or scores on dental anxiety scales, and/or the achievement of more regular attendance patterns. However, there is no one-to-one relationship between a reduction of measured anxiety and subsequent improvement in attendance (Schuurs, Makkes, & Duivenvoorden, 1995). It can be argued that the range of outcome measures ought to be broadened to include some quality of life measures, such as reduction in embarrassment and dysphoric mood, and improvements in social functioning (Moore, Brodsgaard, Berggren et al., 1991b). For example, there is evidence that treatment for dental anxiety can have positive effects on a variety of psychosocial measures, such as use of drugs and days off work (Berggren & Carlsson, 1986). In order to examine the latter possibility, Hakeberg and Berggren (1992a) examined data from the local National Health Insurance Office in Sweden to ascertain the time spent on sick leave by successfully treated patients

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and by a comparison group of patients who were attending the dental hospital for difficulties not connected with anxiety. Before the intervention, the anxious patients spent a median of 15.0 days off work on sick leave in the previous year, but this was reduced to 3.0 days in the year following treatment. By contrast, there was no change in the number of days off work in the comparison group. These results suggest that a wider range of outcome measures would be appropriate and might provide a more sophisticated view of the effects of treatment. There are other reasons for the variability in success rates, however, including aspects of the intervention, patient characteristics, and aspects of the relationship between patients and their dentists. 8.26.2.6.1 Aspects of the intervention As in other areas of psychological care, there has been interest in combining techniques in multitreatment packages. Kleinknecht and Bernstein (1979) used this idea to help two patients who had avoided seeing a dentist for six and 13 years. The patients first saw a film of a model being treated, then they were given relaxation training and a course in systematic desensitization. Finally, the patients visited a dentist's office to sit in the waiting room for 30 minutes, and held and manipulated the dental instruments. One year after this program, both patients had made several visits involving extractions, a root canal, and many fillings. The total time required by the therapist was 3.5 hours for each patient. One area which deserves attention is the control of anxiety-provoking cognitions. Since levels of anxiety are associated with both the content of cognitions and patients' ability to control their intrusiveness (Jongh et al., 1994; Kent & Gibbons, 1987), diminishing catastrophizing ideation and providing patients with means of controlling thoughts may be an important determinant of adjustment to dental treatment and reduction of distress (Jongh et al., 1995). Another issue concerns the method of delivery of the intervention. In most studies, interventions have been provided on an individual basis. This may not be necessary, with group therapy being, potentially, at least as clinically effective and more cost-effective. Using systematic desensitization, Moore and Brodsgaard (1994) compared group vs. individual sessions for patients with extreme levels of dental anxiety. There were no significant differences in dropout rates between the two types of intervention, but group therapy

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required fewer therapist hours and, at the completion of treatment, the group approach resulted in greater declines in anxiety levels. At a one year follow-up, however, patients in group therapy were less likely to have continued to visit a dentist. Moore and Brodsgaard argue that a combination of group and individual therapy might provide the advantages of group support and allow the therapist to target the needs of individuals. Bandura (1982) would argue that the treatments used to help patients with dental anxiety are successful because they increase patients' belief that they are able to control their behavior and affect outcomes. Thus, an intervention would be successful if perceptions of control and self-efficacy were enhanced. There is a large body of research in the stress literature which indicates that people are more able to cope with stressful events if they believe that they have some control over the nature and aversiveness of outcomes (Steptoe & Appels, 1989), particularly for those with a high desire for control (Clevenger et al., 1993). In the dental setting, patients often experience a lack of control (partly because it is difficult to communicate needs with a mouthful of instruments) and there are several studies which indicate that providing a measure of control through stop signals (Wardle, 1983), information (Thrash, Marr, & Box, 1982), and instructions to focus their attention on particular aspects of their treatment (Baron, Logan, & Hoppe, 1993) can have beneficial effects on anxiety levels. Litt, Nye, and Shafer (1993) explored the importance of self-efficacy by assigning some patients to a relaxation condition and others to a self-efficacy enhancing condition. In the latter, the patients were given false feedback about their ability to relax. Not only was the biofeedback equipment set to indicate great success in relaxing, but also the experimenter verbally emphasised their ability. Measures of patients' belief in ability to cope, distress before a scheduled appointment to have a molar removed, and staff's blind ratings of distress during the appointment, all indicated that the self-efficacy enhancement strategy was successful and provided additional benefits to relaxation alone. 8.26.2.6.2 Patient characteristics There are also characteristics of individual patients to consider. Although some researchers have suggested that patients with higher levels of pretreatment anxiety would be less likely to benefit, this has not been demonstrated (Berggren & Carlsson, 1985). There is evidence that many patients with dental phobia have

more generalised difficulties (Roy-Bryne et al., 1994). Liddell and Locker (1994) found that elderly individuals with wide ranging problems were more likely to carry their dental anxiety into old age than those whose anxiety was more specific. We could expect that the more specific the dental anxiety, the more likely it would be that a behavioral treatment would be successful. Patients who do not benefit from traditional graduated exposure to the dental setting may ªfailº because the dental anxiety would only be a manifestation of more deep-seated difficulties. This possibility was supported by Berggren and Carlsson (1985), who found that patients who were anxious about a variety of situations and objects were less likely to benefit from behavioral therapy than those whose anxiety was more specific. Liddell, Difazio, Blackwood, and Ackerman (1994) conducted a 1±4 year follow-up of patients who completed a group behavioral program. At that time, 70% of patients were paying regular dental visits. Those patients who were not regular attenders at follow-up reported higher scores (on the DAS) at the completion of treatment, but unfortunately measures of generalized anxiety were not taken. A related possibility is that therapy is more likely to succeed if the intervention provided is consonant with the main component of the patients' anxiety. Within Lang's (1971) threefactor model, anxiety has cognitive, behavioral, and physiological components. These can covary or be largely independent, varying between individuals. Harrison et al. (1985) demonstrated that intraindividual correlations between various psychological assessments of dental anxiety, mood, and physiological recordings are largely idiosyncratic. Some have argued that if an individual's anxiety is primarily physiologically based then applied relaxation methods would be most effective, while if the anxiety is primarily cognitive in nature, then such methods as self-instructional training would be more appropriate. Jerremalm, Jansson, and Ost (1986) tested this hypothesis by first assessing the nature of their patients' anxiety and then randomly assigning them to a physiological or a cognitive program. Unfortunately for the concordance hypothesis, both interventions were about equally successful, and success was not associated with a match between individual response pattern and type of intervention, a conclusion supported elsewhere (Ning & Liddell, 1991). Another related possibility is that when behavioral treatments do not succeed it is because of a misdiagnosis. There has been some interest in the possibility that the difficulties of some patients who present with dental phobia

Dental Anxiety and Dental Phobia might be better understood within the context of panic disorder. That is, perhaps some patients are not simply fearful of aspects of dental care, but rather of their own anxiety reactions (Holst et al., 1993; Weiner & Sheehan, 1990). If so, then cognitive-behavioral interventions which aim to help patients cope with their catastrophic ideation (Clark, 1986) would be helpful. There is support for the notion that attempting a match between coping style and intervention type is helpful. Of particular interest are designs in which individuals' desire for information or control is ascertained first, and then patients are provided with an intervention which is either consonant or not consonant with their coping style. There are a number of studies on this topic (Auerbach, Kendall, Cuttler et al., 1976; Auerbach, Martelli, & Mercuri, 1983; Baron, Logan, Keeley, Law, & Stein, 1991) which suggest that when a patient is presented with a nonpreferred coping mechanism (e.g., given more information than they require for their coping style) stress levels can increase. Law, Logan, and Baron (1994) first measured patients' desire for control and their perceived coping resources, and then assigned them to either a Stress Inoculation Training (SIT) program (which included a video which emphasized ways of controlling both emotions and the dentist's behavior) or to a placebo condition, in which patients watched a video on local areas of interest. As predicted, SIT significantly reduced the amount of pain experienced during a subsequent dental appointment only for patients who initially reported a high desire for control coupled with low perceived control. Similarly, Litt, Nye, and Shafer (1995) divided a large group of patients who were due to have molar extractions into five groups, each receiving different levels of relaxation, self-efficacy, and control interventions. The results indicated that each type of intervention had significant, and roughly equivalent, effects and that interventions that provided more coping strategies were generally superior. Importantly for the hypothesis that treatments which are consonant with coping style will be most effective, those who scored high on Miller's (1987) blunting scale received most benefit from interventions which required least personal investment (the standard preparation of minimal desensitization), while those who scored low on the blunting scale reported less distress when given the most intensive interventions (which included self-efficacy enhancement plus needle desensitization). From these studies, it seems that an intervention is more likely to succeed when it is compatible with coping style.

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8.26.2.6.3 The dentist±patient relationship The above research suggests that aspects of the relationship between the patient and therapist, or patient and the dentist may be significant. When patients want to exercise control and are given an opportunity to do so, they are less likely to experience pain and heightened anxiety. Furthermore, some patients locate the reason for their anxiety in previous negative encounters with dentists themselves (Bernstein et al., 1979). The research on temperament indicates that some patients find it more difficult than others to adapt to the dental setting, suggesting that the same individual may have more or less anxiety depending on the dentist's ability to provide a secure setting (Lochary et al., 1993). Anxious patients often make great efforts to stay with a dentist they know (Kent, 1984). In the follow-up of patients treated for high levels of anxiety, Liddell, Di Fazio et al. (1994) found that the most successful discriminator between those who managed to attend regularly and those who didn't, was perception of the amount of communication and information given by the practice dentist. Such findings indicate that a more detailed examination of the dentist± patient relationship may provide important information about the nature and treatment of high levels of anxiety. In this context, it is interesting to note studies on the relationship between levels of anxiety and behavioral disruption on the one hand, and the behavior of the dentist on the other. In observational studies (Melamed et al., 1983; Weinstein, Getz, Ratener et al., 1982), coercive and punitive behavior on the part of dentists has been shown to increase the likelihood of disruptive or anxiety-based behaviors in children. The suggestion that punitive statements and lack of warmth can exacerbate anxiety responses has been confirmed in some experimental studies (Melamed et al., 1983; Greenbaum, Lumley, Turner, & Melamed, 1993) where dentists have been coached to behave in supportive or nonsupportive ways. In one study (Greenbaum et al., 1993), children were assigned to either a touch condition (in which the dentist gently patted the patient on the arm and provided reassuring descriptions of the treatment) or the no-touch condition (in which reassurance alone was provided). Based on analysis of video tapes of the consultations, the touched children reported significantly fewer feelings of displeasure and of being dominated, and older children (7±10 years of age) were less likely to fidget in the chair. It is also interesting to note the comments of patients who have been provided with

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behavioral treatments for their anxiety. From a psychologist's perspective, the implementation of graded exposure and relaxation training, or challenging catastrophic thinking patterns are important. From the patient's perspective, however, interventions can be conceptualized quite differently. Smith, Getz, Milgrom, and Weinstein (1987) asked a sample of 24 patients, who successfully completed a cognitive-behavioral program, about which aspects helped them to tolerate treatment. Patients indicated that a number of factors were important, including the provision of information, the time taken, perceptions of control, and the dentist understanding and listening to their concerns and not treating them as ªsilly.º Such factors are firmly grounded in an interpersonal model of anxiety and anxietyreduction. Perhaps it would be helpful in understanding and treating high levels of anxiety and phobia to consider these difficulties not simply as residing within the individual or in the individual's perceptions of dental care, but more within the relationship with the dental care provider.

8.26.3 PREVENTIVE CARE As is the case for work in dental anxiety, social scientists have been interested in conducting research on health promotion for both theoretical and practical reasons. Surveys have shown that the dental health of the general population has improved considerably over recent decades. By asking similar questions at different times, changes in the prevalence of disease can be monitored. In the 1986 Office of Population Census Survey (OPCS) report (OPCS, 1986) on dental health in the UK, the prevalence of complete tooth loss (edentulism) in 1968, 1978, and 1983 was compared. Across all ages, 37% of the population was edentulous in 1968, compared with 29% in 1978 and 25% in 1983. The decline was especially noteworthy for younger people. Nevertheless, there is certainly a need for improved preventive care, since the effects of dental disease are widespread. Cushing, Sheiham, and Maizels (1986) found that 26% of adults had experienced dental pain, 20% had difficulty in eating, and 15% had problems in communication during the year prior to the survey. Edentulism can have varied and severe effects. The wearing of dentures can result in a number of difficulties, not only including problems such as inability to chew certain foods, but also a greater likelihood of mandibular dysfunctions such as headaches (Magnusson, 1980), and social problems such as refusing invitations to

others' homes and avoidance of speaking (Bloomberg & Linquist, 1983). Much of the early research on prevention was heavily influenced by sociological concepts. Attempts were made to understand preventive care by examining large populations of people using epidemiological methods. There have also been several attempts to improve dental health through educational programs and other more psychologically based approaches. This part of the chapter considers research in these areas. 8.26.3.1 Epidemiological Studies Large scale surveys have repeatedly shown that dental health is related to social class. In the 1983 OPCS survey (OPCS, 1986), 1000 people were given extensive interviews in their own homes about a variety of topics such as education, housing, and income, as part of a national census. There was a clear relationship between social class and tooth loss. While only 8% of people from professional classes had lost all of their teeth, 44% of people who had unskilled manual occupations had done so. An important question, though, is what sociological and psychological factors associated with social class are relevant. Is it income and education, availability of professional dental care, or attitudes and behavior? For instance, families with a higher income are more likely to have a higher level of education, to have dentists who stress the importance of preventive care, and to believe in the importance of dental care for their children (Kriesberg & Treiman, 1962). Because large numbers of people can be studied in this way, it is possible to disentangle the various factors in sophisticated matching designs. For example, Metz and Richards (1967) were interested in identifying factors which could be used to predict children's visiting patterns. Previous research had implicated parental income, parental education, and parental patterns of preventive care, but the relative importance of these factors had not been specified. Metz and Richards were able to match parents on these three variables. By comparing families with similar incomes and levels of education, they could test the hypothesis that parental patterns of visiting a dentist act as an independent factor in predicting children's behavior. Similarly, they tested the effects of income and of education by matching patients on the other variables. When this was done, all three factors were found to have independent and significant effects, but the effect of parental practices was nearly as great as the income and educational factors combined. Thus, they were able to conclude that the best predictor of whether or not a child made

Preventive Care preventive visits to the dentist was whether the parents did so, across all income and education levels. 8.26.3.2 Improving Preventive Care The general improvement in oral health also applies to the incidence of cariesÐwhich many researchers have attributed to the addition of fluoride in toothpaste (Burt, 1985)Ðbut a sizable problem remains. Gingivitis (or inflammation of the gums caused by plaque due to poor toothbrushing and flossing) is very prevalent and can lead to tooth loss if patients do not visit their dentist regularly for cleaning, and although the incidence of caries has declined overall, it is still a major cause of tooth loss amongst some deprived groups in society. This section of the chapter considers educational, behavioral, and social cognition approaches to these problems. 8.26.3.2.1 The educational approach Put simply, the educational approach holds that people do not engage in preventive behaviors because they are either unaware of the importance of doing so or do not have the necessary ability and skills. Professional cleaning can reduce plaque and is effective in eliminating gingivitis (Axelsson & Lindhe, 1974), but several surveys have shown that there is considerable lack of knowledge about dental hygiene practices in the general population. In one sample, 63% had never heard of the word plaque, 29% could not remember having been instructed on how to brush their teeth, and none could remember having been told of the significance of the frequency of eating sugar (Linn, 1974). While it is important to realise that these results are based on patients' memories (perhaps they had been told but had forgotten), such studies indicate that there is a substantial lack of information about dental care. It may be that this is partially responsible for the problem. There have been numerous attempts to confirm the hypothesis that behavior will change after exposure to an educational program. The usual method has been first to select a sample of people, randomly assign them into two or more groups, and then provide the intervention (such as films or reading material) to one group but not others. A good example of such an experiment on dental education is provided by Horowitz, Suomi, and Peterson (1976). One group of children was given 10, 30 minute sessions on plaque removal, being taught in small groups by a dental hygienist. They were told about the significance of plaque, how to identify it with a disclosing agent, and

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how to remove it. Each day for the following six months plaque removal was practised under supervision, and the children were asked to rebrush and refloss any remaining plaque. The comparison group of children was not given any of this information or practice. All of this added up to a considerable amount of time, effort, and education. The program had some short-term but few long-term effects. At an assessment immediately after the intervention, there was a significant decline in the levels of gum inflammation for the education group compared to the comparison group, but this difference disappeared at the 12 month comparison. Nor were there any difference in the number of caries or amount of plaque. It seemed that participants reverted to their previous behavior once the intervention ceased. Unfortunately, this is a typical result. While many educational programs have shown significant increases in knowledge and changes in attitude, few have demonstrated changes in behavior and fewer still improvements in oral health (Sogaard & Holst, 1988). Rather than dismiss the educational approach, however, it is more reasonable to see information and skill development as necessary, but not sufficient, conditions for improved oral health. That is, a patient may require knowledge about prevention, but this does not guarantee a change in behavior. Perhaps, with refinements, the educational approach would be more efficacious. There is increasing evidence that after many failed attempts to affect oral health with this approach, greater success is possible. Galgut, Waite, Todd-Pokropek, and Barnby (1987) explored the possibility that willingness to change behavior and to benefit from a preventive program would be related to locus of control. As predicted, participants in a preventive program who scored highly on the internal scale on the Multidimensional Health Locus of Control (Wallston, Wallston, & De Vellis, 1978) were more likely to benefit from an educational package than those who believed that susceptibility to oral disease was a matter of chance. Craft, Croucher, and Dickinson (1981) employed a variety of approaches in their program with adolescents in the UK, including the use of teachers at school, the involvement of parents, stressing personal responsibility, and repetition and reinforcement of the oral hygiene message. They found that, with such refinements, oral health could be improved and maintained 6±9 months after completion of the intervention. It may well be the case that this program was successful because some behavioral principles were incorporated, an approach which is considered next.

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8.26.3.2.2 The behavioral approach From a psychological perspective, a functional analysis of the issue is most helpful. As for a number of other health-related behaviors, there is little contingency between neglect and the experience of symptoms. That is, it is difficult for patients to see the relationship between behavior and consequences. Plaque on the teeth cannot be seen without staining agents, and caries usually occur in relatively hidden parts of the mouth. Children are particularly at risk because they can be much more concerned with the short term advantages of eating sugary foods and find it difficult to appreciate that their current behavior could have negative consequences in middle age. The use of positive reinforcement to bridge the gap between behavior and consequence has been validated in a large number of studies. Whether the target behavior has been improved attendance (Reiss, Piotrowski, & Bailey, 1976) or improved oral health (Iwata & Becksfort, 1981; Marten, Frazier, & Kirt, 1973), material rewards have been efficacious. In some studies these rewards have been substantial, but even inexpensive reinforcements such as placing stars on a calendar each time brushing or flossing takes place can be effective. Furthermore, changes in behavior tend to be maintained even after the incentives are withdrawn. Children's behavior is particularly amenable to behavioral change, but every attempt should be made to involve parents. Weinstein and Getz (1978) provide a detailed analysis of behavioral change in this context. Although large and clinically significant changes in behavior and oral hygiene are unlikely to be achieved, they argue that the chances of success can be maximized by following a series of steps which are consistent with the behavioral approach. Below are the six steps they outline. (i) Formulating a clear and precise definition of the problem. Many people are unaware of the basic facts and skills needed for adequate prevention. A rather detailed assessment may be needed so that the gaps in knowledge and skills may be identified and filled. However, the skills may not be put into practice, so that the problem may be seen as one of behavior and consequences. Specific behavioral definitions are required so that patients will know which aspects of their oral hygiene patterns need to be modified. For example, if the patient has severe gingivitis, it is likely that brushing and flossing need attention. The presence of new caries is indicative of the consumption of many cariogenic snacks and drinks, so diet must be improved.

(ii) Monitoring the frequency of the behavior. Once the broad nature of the specific difficulty is identified, information about current behavior is required. This can be accomplished by charting, which involves asking the patient to note each time he or she engages in the specified behavior. This helps to identify the scope of the problem, provides a baseline for assessing the effectiveness of the intervention, and provides feedback for the patient. (iii) Specifying the aims of the intervention. Just as it is important to specify the nature of the problem, so too it is important to consider what the patient aims to achieve. The target behavior needs to be achievable within a specified time limit. (iv) Changing the behavior. However, the target may not be easily achieved. Studies have shown that shaping can be effective in this context. If the aim were to improve diet, the patient is asked to cut down snack consumption from the baseline level gradually (from five to four snacks per day, for example) and, once this has been accomplished, a further reduction would be required. Children can be shown to brush competently by 3 or 4 years of age if the task is broken down into sufficiently small steps (Poch, McCubbrey, & Munn, 1982) as can people who have suffered brain injuries (Zasler, Devary, Jarman, & Friedman, 1993). Shaping can be particularly useful in helping people with learning disabilities to look after their oral health, which could form a part of an overall program of self-care. Horner and Keilitz (1975) first ascertained what behaviors were necessary by conducting a task analysis, in this instance by videotaping a competent person brushing his teeth. From the tape they identified several small steps: (a) pick up and hold the toothbrush, (b) wet the toothbrush, (c) remove cap from toothpaste, (d) apply toothpaste to brush, and (e) replace cap on the toothpaste. Steps (f)±(k) involved brushing various parts of the mouth. (l) rinse the toothbrush, (m) rinse the sink, (n) put equipment away, and (o) discard any paper cups or tissues used. When a step had been learned, it was chained to the next on the list of tasks. (v) Providing reinforcement. It is important to provide reinforcement for each successful attempt at change. The nature of the reinforcement can often be left up to the patient: for one person it may be a trip to the theatre, for another the purchase of a small gift for themselves. Children can also choose their rewards, such as the choice of the dinner menu once a week.

Preventive Care (vi) Failures in preventive programs. There are several reasons why such a program might fail. Lack of support from family, inappropriate choice of reinforcement, and lack of motivation are some possibilities. Weinstein and Getz (1980) suggest that the use of a contract, which is a public commitment to change, can be helpful. 8.26.3.2.3 Social cognition models Social cognition models share many characteristics of both the educational and behavioral models. Like educational approaches, they are concerned with beliefs, but, like the behavioral approaches, they are also centrally interested in predicting how people act. The Health Belief Model (HBM) (Kegeles, Lund, & Weisenberg, 1978) has been very influential. It postulates that the likelihood that someone will adopt a recommended health action is affected by perceived vulnerability (belief in the personal susceptibility to disease), seriousness (if the disease were to develop), preventability (of the disease if action were taken), salience (the relative importance of taking preventive actions compared to other behaviors), and readiness (the belief that action ought to be taken promptly rather than defered to a later date). Numerous studies have found that people who have taken preventive actions are more likely to hold these beliefs that those who have not (i.e., the HBM describes behavior after it has occurred (Kegeles, 1963)). However, there is relatively little prospective work. Furthermore, a test of a model should include the prediction of a novel type of behavior, rather than one which is already established. This is necessary because beliefs and attitudes might follow behavior rather than precede it: a person may come to believe that preventive care is important because they have always brushed or flossed their teeth. This could have been due to parental encouragement when they were young, for example. In order for behavior and beliefs to be consistent, people might change their beliefs to correspond with their previous actions. The few studies which have met the criteria of both prediction of behavior and an attempt to instigate novel behavior have not supported the HBM. Weinstein, Kegeles, and Lund (1980) reported a study in which children were asked to participate in a program which involved a novel preventive action, in this case topical fluoride application. After the treatment and its effects had been explained to all the children, their health beliefs were measured. Unfortunately for the HBM, the children who scored high on vulnerability, on seriousness, and on the effectiveness of treatment were no more likely

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to take part. In fact, where the results showed a relationship, they were opposite to the predicted direction. It seems, from this study, that general health beliefs are poor predictors of future preventative behavior. Kegeles et al. (1978) combined the HBM with other approaches. They used the educational, HBM, and behavioral approaches in an attempt to encourage children to use a mouthrinse containing fluoride. First, all children in the study were given a slide show which explained the etiology of dental disease, the health and cosmetic consequences of decay, and the effectiveness of fluoride as a preventive measure. The children were then assigned to one of three groups. Those in one group were given no further assistance, except that they were allowed to ask questions about the slide show. Those in the second group were given two discussion periods on the HBM, exploring ideas of seriousness, vulnerability, and preventability. The children in the final group were offered some small cash incentives if they volunteered for and continued through to the end of the treatment program. The fluoride treatment was then offered to all three groups. It involved using a mouthrinse at home twice a day from a bottle which contained a 14 day supply. The bottles were designed so that the children could not simply dispose of the contents all at once: a stopper ensured that they would be ready for use only at six-hourly intervals. Every two weeks the bottles were to be returned, when the incentive group children were given a small reward, and the next bottle picked up. The results indicated that the education plus incentive intervention was the most effective. Although initial uptake in the program was similar at the begining, with about 95% of the children initially volunteering to take part, participation declined over time. This decline was greatest for the discussion group and least for the incentive group. For example, 49% of the children given an incentive picked up the last bottle, 31% of the children in the education group did so, and only 18% of the children in the HBM group. That the HBM discussion group was the least effective is somewhat surprising, but a similar result was found in another study in which the treatment involved topical fluoride application (Lund, Kegeles, & Weinsenberg, 1977). More recently there has been an increased interest in applying Fishbein and Ajzenn's early theory of reasoned action (TRA) (Ajzenn & Fishbein, 1980) and later theory of planned behavior (TPB) (Ajzenn, 1985), which incorporates beliefs about self-efficacy in affecting outcomes (Bandura, 1986) to preventive dental care (Tedesco, Keffer, & Fleck-Kandath, 1991).

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McCaul, O'Neill, and Glasgow (1988) tested the ability of the TPB to explain brushing and flossing behavior in a sample of 77 college students. McCaul et al. took great care in taking baseline measures: the students' levels of oral health (plaque levels and gingival health) were checked by a dental hygienist, skills were assessed, and self-reports of brushing and flossing frequencies taken. The students completed several questionnaires designed to assess each component of the TPB (see Chapter 8.01, this volume). Over the next several weeks, participants were then asked to record the frequency with which they brushed and flossed in a self-monitoring booklet. The results provided some support for the TRA. About 30% of the variance in self-reported intentions to brush and floss could be accounted for by attitudes and norms, and 27% and 37% of the variances in self-reported brushing and flossing behavior, respectively, could be accounted for by intentions. The measure of self-efficacy did not add significantly to the prediction of behavior. Tedesco, Keffer, Davis, and Christersson (1992) argued that self-efficacy could have a significant influence on preventive care if it were specifically targeted in an intervention. They randomly assigned participants (recruited through a variety of means) to either a traditional hygiene program (which included instruction on brushing and flossing techniques, and feedback on their oral health), or to an experimental group (which received the traditional program plus encouragement that their oral health was under their control and praise for their accomplishments). The participants completed several questionnaires designed to assess the seven basic dimensions of the TRA, self-efficacy, and self-reports of brushing and flossing frequencies. In addition, all were given an oral examination, when plaque and gingivitis indices were taken. Over the next several visits, the control group continued to be given feedback on oral health, while the successes of the intervention group were emphasized. Both plaque and gingival indices showed improvement over the visits, with somewhat better oral health for the intervention group. At six months after completion of the intervention, the oral health of the experimental group was significantly better, but this difference disappeared at a final follow-up visit six months later. The authors concluded that the intervention delayed the relapse. However, there were no differences on the cognitive or self-report variables over time or between groups. Selfefficacy increased during intervention visits and decreased at the final follow-up. In another report which focuses on the intervention group only, Tedesco, Keffer,

Davis, and Christersson (1993) report a series of correlations between cognitive variables, selfreported behavior, and clinical indices. The correlations between self-reported behavior and social cognitions were higher, accounting for up to 51% of the variance in self-reported behavior on some occasions. When self-efficacy measures were included, the amount of variance in reported behavior accounted for increased further. In summary, the educational, behavioral, and social cognition approaches to preventive care each show promise. Educational approaches, though intuitively attractive, do not appear sufficient in themselves for behavioral change. It seems that they are more effective when combined with behavioral methods. These latter approaches have been given the most support, particularly when they are applied on an individual basis. Two further issues should be raised. One is the reliance on self-reported behavior as an outcome measure. It is always possible that self-reports of behavior are not valid indicators of actual behavior. Although there is little work on the relationship between self-reports and actual preventive behavior in dentistry, there are indications that patients' reports of attendance, for example, do not correspond to visiting patterns (Eddie, 1984). Similarly, self-reports of brushing and flossing may not be accurate reflections of preventive care. Second, none of these approaches include the nature of the interpersonal relationship between dentist and patient, which may be of crucial importance (Sandell, Camner, & Sarhed, 1994).

8.26.4

CONCLUSIONS

This brief description of the research on dental anxiety and preventive dental care makes it clear that studies on these topics have had practical implications for the well-being of dental patients and have been very fruitful in theoretical terms. There is no doubt that, since the early 1970s, psychologists have helped to make significant improvements to the wellbeing of dental patients. This improvement is partly due to the application of psychological principles to dental care, and partly due to the rigor that psychologists have brought to the assessment of a variety of issues. Psychologists have helped to identify the difficulties faced by dental patients and have developed interventions which are effective in reducing the significant difficulties which many patients encounter. New treatment programs which are based on cognitive-behavioral approaches, and which target negative cognitions, have been

References of special benefit. Further studies have suggested that preventive programs can also benefit from the use of psychological assessments and interventions. There are many other ways in which psychology can contribute. In particular, there is a need for assessments which include aspects of quality of life and an exploration of the ways in which dental disease can affect patients' lives outside of the dental setting. Some consensus on the applicability of particular assessments would also aid studies of prevalence. For the understanding of etiology, longitudinal studies are clearly required. While there are many studies based on retrospective accounts, following patients through their dental histories is likely to be the only method which could tease out issues of cause and effect. This may be particularly true when attempting to improve preventive care.

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and self-control techniques. In J. Rugh, D. Perlis, & R. Disraeli (Eds.), Biofeedback in dentistry: Research and clinical applications. Phoenix, AZ: Semantodontics. Rugh, J., & Solberg, W. (1976). Psychological implications in temporomandibular pain and dysfunction. Oral Science Review, 7, 3±30. Sandell, R., Camner, L., & Sarhed, G. (1994). The dentists' attitudes and their interaction with patient involvement in oral hygiene compliance. British Journal of Clinical Psychology, 33, 549±558. Schuurs, A. H., & Hoogstraten, J. (1993). Appraisal of dental anxiety and fear questionnaires: a review. Community Dentistry and Oral Epidemiology, 21, 329±339. Schuurs, A. H. B., Makkes, P. C., & Duivenvoorden, H. (1995). Attendance pattern of anxiety-treated patients: a pilot study. Community Dentistry and Oral Epidemiology, 23, 221±223. Silva, P. de (1988). Phobias and preparedness: replication and extension. Behavior Research and Therapy, 26, 97±98. Smith, T., Getz, T., Milgrom, P., & Weinstein, P. (1987). Evaluation of treatment at a dental fears research clinic. Special Care in Dentistry, 7, 130±134. Smith, T., Weinstein, P., Milgrom, P., & Getz, T. (1984). An initial evaluation of an institution-based dental fears clinic. Journal of Dental Research, 63, 272. Sogaard, A., & Holst, D. (1988). The effect of different school based dental health education programmes in Norway. Community Dental Health, 5, 169±184. Steptoe, A., & Appels, A. (Eds.) (1989). Stress, personal control and health. Chichester, UK: Wiley. Stewart, J., Marcus, M., Christenson, P., & Lin, W. (1994). Comprehensive treatment among dental school patients with high and low dental anxiety. Journal of Dental Education, 58, 697±700. Stouthard, M., Hoogstraten, J., & Mellenbergh, G. (1995). A study on the convergent and discriminant validity of the dental anxiety inventory. Behavior Research and Therapy, 33, 589±595. Strauss, R., & Hunt, R. (1993). Understanding the value of teeth to older adults: Influences on the quality of life. Journal of the American Dental Association, 124, 105±110. Tedesco, L., Keffer, M., Davis, E., & Christersson, L. (1992). Effect of a social cognitive intervention on oral health status, behavior reports, and cognitions. Journal of Periodontology, 63, 567±575. Tedesco, L., Keffer, M., Davis, E., & Christersson, L. (1993). Self-efficacy and reasoned action: predicting oral health status and behavior at one, three, and six month intervals. Psychology and Health, 8, 105±121. Tedesco, L., Keffer, M., & Fleck-Kandath, C. (1991). Selfefficacy, reasoned action, and oral health behavior reports: a social cognitive approach to compliance. Journal of Behavioral Medicine, 14, 341±355. Thomas, A., Birch, H., Chess, S., Hertzig, M., & Korn, S. (1963). Behavioral individuality in early childhood. London: University of London Press. Thrash, W., Marr, J., & Box, T. (1982). Effects of continuous patient information in the dental environment. Journal of Dental Research, 61, 1063±1065. Todd, J., Walker, A., & Dodd, P. (1982). Adult dental health (Vol. 2). London: HMSO. Vassend, O. (1993). Anxiety, pain and discomfort associated with dental treatment. Behavior Research and Therapy, 31, 659±666. Veerkamp, J. S. J., Gruythuysen, R., Hoogstraten, J., & Amerongen, W. van (1993). Dental treatment of fearful children using nitrous oxide. Part 4: Anxiety after two years. Journal of Dentistry for Children, 60, 372±376. Venham, L. (1979). The effect of mother's presence on child's response to dental treatment. Journal of Dentistry

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.27 Child Health Psychology CHRISTINE EISER and NICKY MAIN University of Exeter, UK 8.27.1 INTRODUCTION 8.27.1.1 Terminology 8.27.1.2 Do We Need a Special Child Health Psychology? 8.27.1.2.1 Children's illnesses are different from those of adults 8.27.1.2.2 Developmental changes in emotional and cognitive reactions to health and illness 8.27.2 LIFESTYLES AND HEALTH PROMOTION 8.27.2.1 Substance Abuse 8.27.2.2 Sunbathing 8.27.2.3 Exercise 8.27.2.4 Eating Behavior 8.27.2.5 Accidental Injury 8.27.2.6 Summary 8.27.3 ILLNESS EXPERIENCE 8.27.3.1 Illness Experience in Healthy Children 8.27.3.2 Hospitalization 8.27.4 CHRONIC ILLNESS 8.27.4.1 Incidence and Definitions 8.27.4.2 Theoretical Issues 8.27.4.2.1 Deficit-centered models 8.27.4.2.2 Conceptual models 8.27.4.2.3 Attachment theory 8.27.4.2.4 Social learning theory 8.27.4.2.5 Attribution theory 8.27.4.2.6 Difficulties with theories 8.27.4.3 Methodological Issues 8.27.4.3.1 Sampling 8.27.4.3.2 Measures 8.27.5 EMERGING ISSUES 8.27.5.1 Neuropsychology 8.27.5.1.1 Neuropsychological assessment 8.27.5.2 Adherence 8.27.5.3 Quality of Life 8.27.5.3.1 Why measure quality of life? 8.27.5.3.2 Domains of quality of life 8.27.5.4 Family and Ethnic Issues 8.27.6 COMMUNICATION 8.27.6.1 Understanding Health and Illness 8.27.6.2 Genetic Testing 8.27.7 PROFESSIONAL ISSUES

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8.27.1 INTRODUCTION 8.27.1.1 Terminology Interest in children and health is shared by workers from a number of different backgrounds, including pediatricians, psychologists, and psychiatrists. Depending on the specific emphasis and interests of those involved, the area is variously described as ªpediatric psychology,º ªchild health psychology,º or ªclinical child psychology.º Pediatric psychology is flourishing more in the USA than elsewhere (Wallander, 1996). This has been partly attributed to the fact that pediatricians in the UK tend to see themselves as interested in, and responsible for, the psychological wellbeing of children in their care. They are therefore less likely to refer children to other specialists. In contrast, pediatricians in the USA recognize the differing roles and expertise that can be brought by other professionals. Regardless of the specific terminology, the focus is on a commitment to the health and well-being of children and their families. Pediatric psychology is an ªamalgamation of applied practice and basic research concerned with medical and psychological problems affecting children and familiesº (Roberts, McNeal, Randall, & Roberts, 1996, p. 107). The goal is to optimize the physical and psychological health of young people, recognizing the interdependence between health and developmental status. For this reason, it is important that child health psychology be firmly rooted in developmental psychology.

8.27.1.2 Do We Need a Special Child Health Psychology? Traditionally, health psychology has been concerned with issues of greater relevance to adults than children. General textbooks devote much more attention to questions such as coping in adulthood with chronic or lifethreatening illness (such as cancer or heart disease), the promotion of a healthy lifestyle, or to issues of health promotion in the workplace. Children, if mentioned, are often assigned to a few paragraphs. Work concerned with the impact of a diagnosis of cancer, for example, tends to center on issues of adult cancer, especially how disease impacts on work or social functioning. As far as children are concerned, information will often be based on parents' or doctors' reports about the impact. It is rare that much coverage is given to the issue of how children themselves consider that the illness affects their lives.

In many textbooks child issues are restricted to brief discussions of lifestyles (drug abuse, smoking, weight control), but even here the emphasis tends to remain on the implications for adult health rather than the child's current well-being. The impact of illness, the effects of hospitalization, pain, and adherence to treatment should perhaps all be considered separately for children and adults. Although whole chapters may be devoted to specific conditions which affect adults, it is much less likely that comparable coverage is given to illnesses affecting children (e.g., childhood cancer or diabetes). Other diseases, especially those partly or wholly prevalent during childhood (muscular dystrophy or cystic fibrosis), are often neglected. We may be urged to consider the ageappropriateness of information for children, but details of how this is achieved are rarely specified. There are several reasons why health psychology has focused so much less on children compared with adults. First, there is a strong assumption that health is better during childhood than at any other time of life: we do not have to worry about it. Certainly we would like to hope that children have far fewer physical health problems compared with the middle aged or the elderly. Such an assumption is less well supported empirically than might be imagined. Recent work suggests a higher incidence of both physical and psychological complaints in children than might be expected (Dubow, Lovko, & Kausch, 1990). Almost all work suggests that these complaints are higher in girls compared with boys. From an adult perspective, some of these concerns might be considered trivial or not so important (e.g., health concerns include many anxieties about skin conditions which under many circumstances correct themselves with time). However, we know that a proportion of children suffer from more serious and chronic conditions (Cadman, Boyle, Szatmari, & Offord, 1987). Largely because it has been assumed that children are healthy, interest in child health psychology has often been justified in terms of the implications for adult health status and behavior, rather than the implications for the child at the time. Much of the work concerned with legal or illegal drug use has therefore focused on prediction of adult drug use from child histories (Kandel & Yamaguchi, 1984). Similarly, poor eating habits are seen to be of interest as much in terms of their predictability for adult eating status and obesity as for the implications for child health (Simopoulos, 1987). The tendency to consider the implications of child health for adult health is also prevalent in work with children with chronic diseases.

Introduction Children with diabetes, for example, are encouraged to adhere to medical advice as much to reduce the likelihood of complications in the future as to result in any significant health benefit in the present. In all these examples, it is apparent that the interest in child health psychology for its own sake is seen to be less important than the implications for adult health. Second, concerns about the reliability of data elicited from children can be a deterrent for many researchers. In the past, it was assumed that children were unable to make reliable judgments especially about the localization and extent of pain. Current work suggests that by three years of age children are able to make these judgments (McGrath & McAlpine, 1993). Children's relatively brief timespan and readiness to forget about injury if cuddled or bribed with goodies is also taken as evidence for the unreliability of children's responses. As our methodologies become more sophisticated this view is being challenged (Eder, 1990). This situation parallels the history of progress in developmental psychology. This was initially dominated by work which focused on what children did not know or understand (Piaget, 1929), and which highlighted difficulties experienced in abstract reasoning. Increasingly, it has been shown that these conclusions were partly attributable to methodological difficulties, in that when the experimental situation is less complex, children show greater sophistication (Nelson, 1986). A problem in this area has been the over-reliance on the semistructured clinical interview as a basis for data collection, with the inherent difficulties of coding. More experimental methods may overcome this problem to some extent (Hergenrather & Robinowitz, 1991). However, for the most part, a sound methodology has not been developed which is also child-friendly. Approaches to data collection are invariably extrapolated from adult methods at least to the point when it is clear that children are too young to be able to understand instructions. Also, investigators point to cognitive skills, and emphasize the differences between child and adult abilities to process information. Differences between children and adults in their understanding of the causes of, and treatment for, different diseases have been widely researched. Undoubtedly, there are developmental changes in the ways in which children of different ages understand these issues (Bibace & Walsh, 1980). The notion that children proceed through a fairly invariant sequence of beliefs with rather naive implications for communication and explanations of illness (Perrin & Gerrity, 1981) has many-attractions. Even this

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view, however, is increasingly challenged (Carey, 1985; Hergenrather & Robinowitz, 1991). Our argument then is that child health psychology is important in its own right and not merely in relation to the consequences for adult health. At the same time (i) children's illnesses are different from those of adults, and (ii) developmental changes in emotional and cognitive reactions to health and illness necessitate the development of a child health psychology which is unique and distinct from adult health psychology. This is not to deny that there are some issues which overlap with those in adult health psychology, at least at a superficial level. Even so, a different methodological and theoretical approach is often needed. For the most part, differences between the types of illness which affect children and adults, differences in cognitive and emotional response to illness, and the greater involvement of the family all necessitate a distinctive approach. 8.27.1.2.1 Children's illnesses are different from those of adults Some diseases are unique to childhood. These include congenital conditions, or conditions which can be fatal during childhood, such as cystic fibrosis. Others, although going by the same name, have a different etiology when they occur in children compared with adults. For example, the kinds of cancer that affect children are different from those that affect adults, and the course of treatment differs (Boring, Squires, Tong, & Montgomery, 1994). Similarly, in adults with diabetes, residual insulin production means that patients can often be treated by oral medication and attention to diet. In these cases, the intrusiveness of the disease on daily life is minimal. In children with diabetes, the complete lack of insulin production means that treatment involves insulin injections. The degree of intrusiveness and the perception of severity is inevitably greater, and risk of long term complications higher than for adults with noninsulin dependent diabetes. In addition to the medical differences between child and adult conditions, the social implications are different. In the case of young children, parents are responsible for care and disease management. Especially as children grow up, conflicts between child and parent can become common. Parents may feel guilty about the possible inherited nature of the disease, and children often resent the fact that parents are responsible for many routine aspects of daily care. The diagnosis of a chronic condition in a child is a diagnosis with implications for the whole family, to a larger extent than when an adult is the patient.

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Pharmaceutically, it is inappropriate to simply reduce the quantity of drugs prescribed for a child compared with an adult. There are differences in metabolism and vulnerability of developing organs which can necessitate a qualitatively different kind of treatment. For the same reason simply scaled down adult psychology should not be used as a basis for understanding children's reactions to illness. 8.27.1.2.2 Developmental changes in emotional and cognitive reactions to health and illness Children differ from adults in their understanding of the cause, treatment, and implications of illness, their recall of illness events and interpretations, and their perceptions of risk involved in different situations. They may be concerned about events which do not upset adults and vice versa. Although we recognize that treatments can be painful, we have tended to make judgments about the extent of pain, or distress based on reports of adults, especially mothers. Mothers experience stress themselves (Hobfoll, 1991) and, as a consequence their accounts of the impact of the disease, may be influenced by their own emotional state. Increasingly it is recognized that it is important to seek the views of children directly rather than infer them from parents' reports. 8.27.2 LIFESTYLES AND HEALTH PROMOTION Much of the attention of child health psychologists has focused on the treatment of existing physical and psychological problems so that children are able to regain normal developmental pathways. However, the discipline also maintains a basic orientation towards health promotion and the prevention of later onset problems in young children and adolescents (Roberts, 1986) (see Chapters 8.28 and 8.29, this volume). Some of the major challenges facing pediatric health psychology include the growing problems of adolescent drug and alcohol abuse, the issue of smoking in the under 18s, and expanding concern over nutritional issues such as the need for a healthy diet and the problem of eating disorders such as anorexia and bulimia. Exercise is also an ongoing health issue, as is prevention of accidental injuries. 8.27.2.1 Substance Abuse One of the main reasons why the issues involved in the uptake of substances such as

alcohol and drugs need to be examined in more depth is that it has always been assumed that patterns of pathological drinking, and perhaps also drug taking, are laid down in adolescence and early adulthood; the consequences only becoming apparent in later life. Many problem behaviors in youth are in fact interrelated (Jessor & Jessor, 1977). Analyses of college and high school longitudinal studies over a period from 1969 to 1973 found pervasive evidence for covariation among behaviors such as drinking, drug use, sexual behavior, and deviance levels. It was found that those who had engaged in a particular problem behavior had also engaged in various related behaviors at higher rates than those who had not engaged in that particular behavior. Jessor and Jessor (1977) regard their research as supportive of a ªsyndrome-like patterningº in which participation in a particular behavior is implicative of engaging in others. Clustering of problem behaviors in the same individuals, including alcohol and drug abuse, smoking, and sexual precocity, has now been widely reported (e.g., Aaro, Laberg, & Wold, 1995; Vingilis & Adlaf, 1990). Regrettably, many young people choose to disbelieve or ignore the long term consequences of drinking or taking drugs. There is, therefore, an urgent need to identify the factors which are predictive of later substance abuse in order that interventions can be applied before dependence or addiction develops. Reducing the number of young people drinking or taking drugs to excess will also bring about benefits such as lowering the frequency of alcohol and drug related crime, accidents, aggressive behavior, and suicide. Many of these events result from altered perceptions and psychomotor reactions that the user experiences whilst under the influence of alcohol or drugs, and consequently could be avoided by lowering usage of these substances in young people. Youth, defined by the World Health Organization as the period between 15 and 24 years, can be characterized by a period of experimentation for a variety of legal and illegal substances. Drug taking and excessive alcohol consumption appear to be related to a complex collection of factors. Longitudinal studies of childhood characteristics and later alcoholism or drug use (Block, Block, & Keyes, 1988; Zucher & Gomberg, 1986) suggest a combination of intrapersonal and interpersonal risk factors for the future development of substance abuse. Briefly, children at increased risk have been described as particularly temperamental or nonaffectionate at a young age, high in emotionality, hyperactivity and/or conduct disorder, and somewhat more controversially,

Lifestyles and Health Promotion sociability. Further research is required to determine what differentiates young people who outgrow such behaviors and those who go on to participate in more serious levels of antisocial behavior or drug abuse. With respect to interpersonal variables, a number of central influences seem to be implicated in the uptake of alcohol and drugs among young people. Drug and alcohol use among teenagers and adolescents usually occurs in group situations, and the use of such substances has been found to be strongly motivated by self-presentational desires such as the need for social approval and peer acceptance (Leary, Tchividjian, & Kraxberger, 1994). For example, many adolescent boys believe that their peers admire the attributes that characterize someone who drinks alcohol and thus aspire to that image (Chassin, Tetzloff, & Hershey, 1985). Family factors, including parental modeling (often parents themselves are heavy users of the substance), and the family± child relationship, are key risk factors for subsequent substance use (Glynn & Haenlein, 1988). In addition, peer relationships appear to be strongly related to the extent of alcohol and illicit drug use during youth. Finally, both types of substance abuse seem to be more common among those who report academic difficulty or poor adjustment at school (Swain, 1991). Other reasons for the illicit use of alcohol and drugs by under age children include the wish to convey autonomy or rebelliousness to parents or other adults, and the reduction of anxiety in intergroup settings (Berglas, 1986). Some may use alcohol or drugs if they feel unable to cope with the pressures associated with growing up; as a sort of temporary escape from school problems, social anxieties, or home difficulties. Tobacco use is one of the most damaging forms of behavior in the long term to the health of children and adolescents. Young people, particularly those in developed countries, are beginning to use tobacco at an early age (most start before the age of 19 years), and as a consequence find it more difficult to give up than those who start smoking later in life (Eiser, Morgan, & Gammage, 1987). Like alcohol and drug use, those whose parents or siblings smoke or whose friends have taken up the habit are particularly likely to begin smoking themselves (Smith, 1991). Early attempts to prevent the onset of drug and alcohol use failed for a variety of reasons, but often because they were based on faulty assumptions or limited theoretical bases (Botvin, & Wills, 1985; Falco, 1992). These programs relied on scare tactics, moral exhortations or the simple provision of factual information. There is little evidence regarding the efficacy of these approaches.

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The most successful smoking and drug control programs have focused on encouraging the development of skills needed to resist peer pressure and media incitement to use tobacco. Programs based on social influence models (Hansen, 1992) suggest that positive effects occur in 63% of these studies, neutral results in a few (26%) and negative results in the smallest proportion (11%). In part, inconsistencies in outcome are likely to be attributable to the variety of strategies that are included under the rubric of social influence approaches. The basic assumption underlying ªsocial inoculationº theory (McGuire, 1964) is that young adolescents experience increased mobility, seek independence from adults, and experiment with different lifestyles. The decision to drink or use drugs is assumed to be dependent on the ability to resist the social pressures common in early adolescence. The basis of social innoculation theory is that by practising to avoid social pressure in a controlled environment, the adolescent will be more able to deal with the real situation if it arises. Adolescents are therefore trained to recognize social pressure from peers and the media. In addition they are trained to develop the social skills necessary to refuse offers of alcohol and drugs while at the same time coping with the negative social consequences that can result. The assumption is made that adolescents will be able to resist offers of drugs through learning refusal skills and maintaining self-esteem in the face of pressure to do so. Although there is good evidence that children learn resistance skills there is less evidence that participation in these programs is associated with reduced drug use. Of the many criticisms that have been leveled at this work, the one that seems most likely to account for some of the discrepancies observed is the fact that school-based resistance models are directed uniformly at all children in the school involved. It is likely that the impact of any program will be dependent on individual differences in beliefs about the acceptability of drug use. While some young people may believe that drug use is unacceptable and benefit from learning refusal skills, an unpredicted effect of this training may be that adolescents come to believe that the likelihood of them being offered drugs, and the incidence of drug taking among their peers is actually higher than in reality. By increasing perceptions of the prevalence of drug taking among peers, this kind of teaching may inadvertantly increase the likelihood of experimentation (Donaldson, Graham, & Hansen, 1994). In an attempt to unravel the processes operating in school based social resistance

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programs, Donaldson, Graham, Piccinin, and Hasen (1995) compared subsequent alcohol use as a consequence of four training programs. The information only group received four lessons about the health and social consequences of drug and alcohol use. The resistance training group was designed to teach adolescents how to refuse offers of drugs or alcohol in a socially acceptable manner. The normative education group received information to correct erroneous assumptions about the prevalence of alcohol use amongst peers. In the combined condition, students received elements from all three approaches. The programs were evaluated in terms of alcohol use, refusal skills, perceived acceptability of alcohol use, and perceived prevalence of offers. For adolescents who believe it is not acceptable to drink, the authors concluded that social resistance training does delay the onset of alcohol use. For those who are more inclined to believe that it is acceptable to drink, resistance skills training was not successful in delaying alcohol use. A negative finding was that resistance skills training did result in overestimation of the frequency of alcohol use by others. This was, however, counterbalanced in the combined condition; when adolescents received resistance skills training in conjunction with normative education they reported lower prevalence rates compared with those in either the resistance skills training or normative information conditions. This study underscores the importance of clarifying the processes through which intervention programs have effects (see Chapter 8.01, this volume). Resistance skills models may be useful but primarily for those who share the basic assumptions implicit within the model, that is, where adolescents accept that alcohol or drug use is unacceptable. It is also clear that evaluations of any intervention program need to include multiple measures of outcome. Simply relying on self-reported drug use is of very limited value, as this yields no information regarding the processes underlying decisions made prior to use. School-based strategies may need to become more sophisticated, and more attempts made to match the program with more specific information about adolescent beliefs about drug use and its prevalence. 8.27.2.2 Sunbathing Environmental damage caused by the breakup of the ozone layer is generally acknowledged to be the critical factor in increased incidence of skin cancer, particularly among young people. In addition, increased leisure opportunities means that young people experience much

greater exposure to the sun than previous generations. Since the cause of skin cancer is so clearly related to sun exposure, efforts to inform the public and reduce risky behavior is necessary and should have a direct impact on disease incidence (Cancer Research Campaign, 1995). Reducing one's personal risk of developing skin cancer is clearly dependent on the adoption of appropriate behaviors, and on understanding how behavior aggravates risk. Much of what we know about people's current knowledge in this area and their preparedness to make changes in their behavior is based on research conducted in parts of the world where sun exposure is recognized as a major problem, notably Australia and the USA. Increasingly there are concerns about those who live in more temperate climates, where the challenge of education may be more demanding. A number of barriers to appropriate behavior have been identified. Not least is the fact that within Western cultures, a dark tan is considered highly fashionable, and is seen as a measure of beauty and attractiveness (Weston, 1996). Surprizing though it may seem, being safe in the sun is not considered to be easy, for example, many parents complain that children dislike wearing protective clothing. As in almost all areas of health related behavior, females are more knowledgeable than males (Cody & Lee, 1990; Eiser, Eiser, & Pauwels, 1993; Keesling & Friedman, 1987). They are also more likely than males to use sunscreen regularly (Hill, Rassaby, & Gardner, 1984; Keesling & Friedman, 1987), and to perceive a lighter tan to be more attractive than a darker one (Broadstock, Borland, & Gason, 1992). These results suggest that young males are at higher risk of sun exposure, and may benefit from strategies targeting these behaviors. Young males who work outside, or play lots of sport, appear particularly vulnerable. There is some evidence that interventions can be successful. A major health promotion in Victoria, Australia, was held over two summers. This included a focus on sun protection as a sensible and fashionable behavior and was aimed at the general population, although the primary target was adolescence and young adults. A key aim was to make tanned skin less fashionable. Children received education on three separate occasions during schooling and knowledge improved. Following this promotion, virtually all Australian children were aware of the need for sun protection (Broadstock et al., 1992). They were also positive about the idea of taking appropriate action, except with regard to keeping out of the sun. Those at high risk of

Lifestyles and Health Promotion burning (defined in terms of skin and hair color) understood their own risk, had more positive attitudes to sunscreen, and were satisfied with achieving a lighter tan. However, those at slightly greater risk (somewhat more sensitive skin) tended to report similar beliefs to those at little risk. This cannot be attributed to ignorance as those with slightly sensitive skin were in fact more knowledgeable. With regard to taking recommended action, girls were less in favor of wearing hats than boys irrespective of their knowledge or attitudes. Boys seem to be less concerned about fashion and accept hats for utility (although, maybe, contemporary fashion dictates that boys can wear baseball caps). Girls were more likely than boys to remember having a school lesson about skin cancer, had more knowledge, had more positive sun protection attitudes, and were more likely to report using a sun protection factor 15/15 sunscreen. Girls expressed more favorable attitudes to sun protection in all aspects except wearing a hat and suntan preference. There were no sex differences concerning sun avoidance, beliefs about suntans or reported incidence of sunburn. In this sample of 12±17 year olds, 15 year olds had attitudes least conducive to protection with more appropriate attitudes being held by both younger and older children. This may suggest that 15-year-olds take most risks, with this diminishing by 17 years of age. However, it may be that the focus on 17-year-olds in school introduces a bias (in Australia 98% of 15-yearolds are in school, but only 65% of 17-yearolds). The fact that this study was conducted during an Australian winter also introduces the possibility that people may have overestimated their protection behavior of the previous summer. Since parents are usually strongly in favor of protection behavior (Bennetts, Borland, & Swerissen, 1991) it follows that young children are relatively well protected. Adolescents seem to be at special risk. For example, many adolescents have poor sun protection behaviors, in that they do not tend to use an adequate factor sunscreen, and do not apply it as frequently as they should when exposed to the sun (Wichstrom, 1994). Given their greater leisure time and more time spent on outdoor sports and activities, adolescents are likely to be an especially vulnerable group. 8.27.2.3 Exercise Observational data indicate that age is inversely related to physical activity, with studies showing that the amount of time spent

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in physical activity declines by 50±75% between 6 and 18 years of age (Rowland, 1990; Sallis, Buono, Roby, Micale, & Nelson, 1993). There is also concern that the amount of physical exercise in schools is declining as a direct result of changes in the educational system since the mid-1980s (Woodruffe, Glickman, Barker, & Power, 1993). At all ages males are slightly more active than females, although according to the British Sports Council (1990) there is some evidence that this gender gap is closing. With regard to environmental variables, (and reflecting findings related to vulnerability for substance abuse) major influences on activity levels include both parental and peer activity. Other environmental factors include access to play areas/sports facilities, or to organizations and programs which aim to increase activity levels in young people. Because there is no single variable that may be considered the primary determinant of children's physical activity, no simple intervention is likely to be highly effective in promoting physical activity among children (Cheung & Richmond, 1995). Although the end stages of chronic degenerative diseases become manifest primarily during adulthood, the processes underlying such diseases often begin during childhood and adolescence (Despres, Bouchard, & Malina, 1990). Health related fitness is thus a reasonable goal for children, particularly for preventing degenerative disease. This is because regular physical activity during childhood and youth may prevent or impede the development of several adult conditions, such as obesity and degenerative heart disease. It is often assumed that habits of engaging in regular physical activity developed during childhood and adolescence may persist into adulthood. Additional research is needed to resolve when, if at all, during childhood and adolescence regular physical activity is likely to exert a beneficial effect on subsequent adult health status, although the maximal effects of physical activity may be achieved if the habit of regular activity is begun in childhood and maintained throughout life (Bar-Or & Malina, 1995). 8.27.2.4 Eating Behavior Eating problems can arise from a number of different sources. In developing countries inadequate intake of nutritious food often results in malnutrition, and in industrialized countries the diet of young people may be inadequately balanced or may be insufficient as a result of conditions such as anorexia or bulimia. Dietary habits in youth and adolescents can have important implications for both the short and longer term health of the

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individual. For example, iron deficiency can lead to fatigue and anemia in the short term, and calcium deficiency is one of the main causes of osteoporosis in later life, particularly for women. However, most children in the UK are adequately nourished, and although over the last decade there has been a trend towards healthier eating habits with diets including less saturated fat and sugar, fatty and sweet foods still make up a large part of the diet of young children (Golding, Haslum, & Morris, 1984; Nutbeam, Aar, & Catford, 1989). This is particularly true for those from the lower social classes (Woodruffe et al., 1993). Overnutrition leading to obesity or excessive weight gain is an increasing problem in many developed countries, with young people preferring widely available snack foods usually high in fat or sugar. Excessive food intake at a young age will predispose people to a variety of late onset health problems such as heart disease, diabetes, arthritis, and some cancers (Gortmaker, Walker, Weitzman, & Sobol, 1990). Children become obese when their energy, or calorific, intake exceeds their energy expenditure. The resting metabolic rate comprises about 70% of total energy expenditure. Since the amount of weight being supported influences the resting metabolic rate, obese children have significantly higher rates than nonobese children. This suggests that they should also consume more calories than their nonobese counterparts, although due to the unreliability of self-report measures it is difficult to establish whether or not this is in fact the case. Another area requiring more research concerns the link between obesity and activity: there is some evidence that obese children have lower activity levels than nonobese children, although again more objective methods for measuring activity are needed. There are a number of individual factors to consider when investigating the etiology of obesity, in that some children may become obese by being very sedentary with normal eating, and others may eat large amounts of food and yet not become obese because their energy expenditure is so high (Epstein, 1992). A genetic predisposition to obesity has been well recognized, resemblances in fatness being greatest in monozygotic twins. Although a genetic component to obesity is supported by the familial associations of the disease, it is still not clear how this genetic predisposition is expressed. The link between parental obesity and obesity in offspring may be attributable to a shared environment as well as a shared genetic inheritance. In general, concern has focused more on managing and treating excessive fatness in children than on preventing it. Because physical

activity plays such an important role in regulating fatness, educators and the medical community should emphasize the value of regular exercise during childhood to prevent obesity. Although the most effective treatment for obesity involves simply decreasing calorific intake, weight loss may be accelerated by increasing exercise. Further research is needed into the long-term effects of exercise, the problem of encouraging children to adhere to exercise regimes, and on the role of sedentary activities in the development of obesity (Epstein, 1992). The problem of obesity in young people is of further concern because of the associated impact on appearance and self-esteem. Concern over excessive weight gain has led to an increase in weight related disorders such as anorexia and bulimia among both school age children and adolescents in recent decades. Both bulimia and anorexia nervosa can be triggered by periods of dieting, although the weight loss associated with anorexia and the overeating reminiscent of bulimia can also be brought about by organic disease. 8.27.2.5 Accidental Injury Deaths from accidents outnumber deaths from childhood cancer, heart disease, and genetic diseases combined (Baker, O'Neill, & Karpf, 1984). Recent laws enforcing the wearing of seat belts and safety helmets for motorcycles have helped to reduce the frequency of traffic injuries, although over half of accidental deaths in children aged 1±15 remain due to road traffic accidents (Wynne, 1991). Other accidents include leisure and sports pursuits, burns, poisonings, falls, and drownings. Homicide is also a major cause of accidental death in the age group 15±24 years. Behavioral factors that contribute to accidental injury include alcohol or drug intoxication, lack of experience, and risk-taking (Graham, 1996). Nonfatal accidents can result in a great deal of suffering both for the child and their family. In addition the incidence of serious injuries is higher in the lower social classes, thus adding disability to existing social disadvantages (Alwash & McCarthy, 1988). For this reason, and because accidental injury in children is so prevalent, those working in the area of child health have an important role to play in the prevention of accidents in the young (Jackson, 1988). Injuries at home account for more than half of all fatalities in children under five years of age. For young children there is some evidence to suggest that parent behavior such as poor parenting skills and inadequate supervision may contribute to the occurrence of a child's injury

Illness Experience (Oldershaw, Walters, & Hall, 1986). Since many home hazards cannot simply be reduced or eliminated, it appears that active strategies requiring that safe behavior be taught and performed regularly and reliably are the most effective methods for injury prevention (Finney & Cataldo, 1991), and should be combined with passive strategies, such as blocking access to hazardous items wherever possible. The more knowledgeable that parents are about a safety issue, the more competent they feel to intervene. In addition, the more they believe an intervention would prevent injury, the greater the reported teaching efforts. Thus, it is important that parents feel knowledgeable about safe behavior, and competent to teach their children these skills (Peterson, Oliver, Brazeal, & Bull, 1995). 8.27.2.6 Summary A combination of instability in the family and excessive negative pressures from the surrounding environment (adults, peers, etc.) are more likely to lead to health damaging behaviors such as the use or abuse of tobacco, alcohol, drugs, poor eating, and excessive risk taking in adolescents (Buckstein, 1995). Such problems are of particular importance to the healthcare system because it is adolescents and young adults who are the least likely to come forward and admit that they need help, or come too late, at a stage when the problems have become more difficult to resolve. The focus on school-based education programs has resulted in an overemphasis on the roles of peers and a failure to acknowledge the contributions made by family relationships to onset of drug use. A more balanced view, reflecting the combined influence of peer and family relationships is required. However extensive an education program, a proportion of young people will inevitably adopt unacceptable behavior. In these cases, failure to organize a referral service which is acceptable to young people, often from minority or deprived backgrounds, further hampers efforts to revert such socially unacceptable behaviors. 8.27.3 ILLNESS EXPERIENCE 8.27.3.1 Illness Experience in Healthy Children All children come across illness during the course of growing up. This may be through the experience of acute illness themselves, thought to be a significant influence on child attitudes (Parmelee, 1986). Many children learn about illness following acute illness and hospitalization, or minor injury; others experience illness

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vicariously, through their friends or parents; a further group through the experiences of brothers or sisters. There has been less work which focuses on the reactions of healthy peers to chronic disease or disability compared with work which focuses on healthy siblings' reactions. Early work which attempted to account for the experiences of healthy siblings paralleled work with sick children themselves; that is, from a ªdeficitcenteredº perspective, it was assumed that healthy siblings would show compromised behavioral, social, and cognitive function in relation to children from healthy families (Drotar, 1981). There was some support for this view, although most studies were subject to the same criticism as work with sick children themselves. They were based on small samples, failed to use age-appropriate measures, and, most damning of all, did not give the children the opportunity to report anything other than negative emotions or behaviors. In one of the few studies to overcome this criticism, preschool siblings of a child with cancer were compared with children in families where there was no illness. Siblings of a child with cancer showed more empathy and altruistic behavior (Horwitz & Kazak, 1990). Such a study needs replication, both for the preschool age group and also with regard to older children. Much of the early work about childrens' conceptions of health and illness centered around the Piagetian ªstage modelº of development, with the assumption that it was possible to learn as much from studying what children did not know as what they did. Systematic changes in how children perceive health and illness as they progress through childhood have been described (Bibace & Walsh, 1980; Perrin & Gerrity, 1981). Briefly, in the preoperational stage there is confusion between cause and effect, and no differentiation between illnesses. This is followed in the concrete operational stage by an understanding of the role of contagion and germs in the etiology of illness, and during the stage of formal operational thought a more sophisticated understanding of infection and health prevention. Some studies appear to support this analysis (Beales, Holt, Keem, & Mellor, 1983) in that younger children offer fairly simple explanations of illness whereas older children tend to offer more organized and detailed descriptions. However, much of this data is based on semistructured interviews with unnatural and repetitive language, and it is not clear that the same responses are always coded in the same way by different researchers (Eiser & Kopel, 1996). Consequently some of the more recent research has tended to focus more on

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what children do know as opposed to what they do not know (Nelson, 1986). Empirical work along this line suggests that both healthy and chronically ill children can in fact develop accurate and quite detailed accounts of illness events (Bearison & Pacifici, 1989), and have much greater insight about health and illness than was originally proposed by Piaget. The study of the development of concepts of health and illness has been justified on a number of different practical and clinical grounds, one of which is that of providing appropriate health education. The underlying message here is that in order to be effective and promote changes in behavior, educational materials need to be tailored to the developmental level of the child. Developmental issues have been most clearly taken into account in recent programs aimed to increase knowledge and understanding about AIDS (Eiser & Kopel, 1996). Most five-year-olds believed that simple proximity to an AIDS victim was sufficient to contract the disease, but older children understood that it could be transmitted through sexual contact or mixing blood (Osborne, Kistner, & Helgemo, 1993). Thus, it appears that young children would benefit from curricula that aimed to reduce fears about how the disease is transmitted, for example, not to touch cuts, and for the older children information about how to avoid contaminated blood and bodily fluid seems more appropriate. 8.27.3.2 Hospitalization For the majority of children and young people, good health is taken for granted and it is clear that for the most part, today's young people are healthier than those in previous generations. Even so, illness is a fact of life. Although there have been many improvements in the care of children in hospital, it remains a potentially frightening experience. There have been significant changes in the way children are treated and the whole ethos of child care in hospital settings. Much can be credited to the work of Robertson (1958). In contrast to practice during the 1950s (when parents were generally allowed brief formal visits to their child once or twice a week), it is now accepted that parents should be closely involved in the care of their child in hospital. Efforts are also made to ensure some continuity between home and hospital. Children are encouraged to bring toys from home; siblings and friends can visit; efforts are made to prepare children for the procedures to be experienced; special units have been established for adolescents. There is much evidence that these changes have resulted in a far less traumatic experience

for children in hospital today (Cleary et al., 1986), but improvements still need to be made (Thornes, 1983). Many changes can be identified but tend to be introduced without evaluation. As a consequence, it is difficult to be certain which changes contribute most to improved function. Evaluations are also necessary to determine the overall impact of an intervention. Although children may benefit when parents are able to live on the ward, the toll for parents and other children in the family needs to be considered (Meadow, 1992). Parents play an important role in determining the way in which children react both to hospitalization generally and treatments more specifically. For example, parental behavior, specifically in terms of how, and when, information about procedures is given to the child, is an important predictor of child distress (Jacobsen, Manne, Schorr, Rapkin, & Redd, 1990). 8.27.4 CHRONIC ILLNESS 8.27.4.1 Incidence and Definitions Some 10±12% of children suffer from a chronic illness (Cadman et al., 1987). The numbers of children affected are relatively large and the implications are usually long term. For many children, the implications of their disease are relatively benign, but about 1±2% of the total child population have more severe conditions (Gortmaker & Sappenfield, 1984). Advances in biotechnology mean that it is now possible to treat many more children than in the past. However, the cost in financial terms to the health service is coming under greater scrutiny (Stevenson, McCabe, Pharoah, & Cooke, 1996) and the cost to families in social and psychological terms is increasingly recognized (Eisser, 1993; Wallender & Thompson, 1995). These include the added caretaking burden involved in care of a sick child (Quittner, 1992), increased psychological morbidity, especially among mothers (Hobfoll, 1991), and impact on other family members, especially healthy siblings (Lobato, Barbour, Hall, & Miller, 1987). For the child, there are likely to be interruptions to regular schooling, restricted mobility and activities, and sometimes long-term restrictions in adult life (Eiser, 1995). To determine the extent of maladjustment shown by children, Lavigne and Faier-Routman (1992) conducted a meta-analysis of the empirical literature. This included the results from 87 published articles. Taking all the results together, they suggested that children with chronic disease were significantly different from normal children. Specifically, there were more than twice as

Chronic Illness many children with chronic disease with problems in adjustment generally, internalizing and externalizing behavior problems and poor self-esteem compared with healthy children. In the past, there has been a tendency for psychologists to work within a medical model in child health psychology. Thus, it is assumed that the consequences in terms of psychological health are disease specific. Such a view is perpetuated where psychologists are ªattachedº to clinical specialties, for example, in oncology or renal disease. Reservations about this approach have been put forward by a number of workers, while the disadvantages of a diseasespecific model have been most clearly summarized by Stein, Bauman, Westbrook, Coupey, and Ireys (1993). They raise a number of objections. First, it is not possible to include every possible disorder to which children might be susceptible. Second, diagnoses may be made inconsistently by different physicians. This might especially apply to conditions such as asthma. Third, a diagnostic label is relatively uninformative with regard to the severity of the condition. Fourth, there may be a bias to include only those children who have access to the medical care system, and fifth, there may be a delay between the emergence of symptoms and diagnosis. In many instances, it may therefore be more useful to categorize diseases in terms of their consequences rather than their labels. According to their definition, chronic diseases share the following characteristics: they have a biological, psychological or cognitive basis; they last, or are virtually certain to last, for more than one year, and they are associated with one or more of the following sequelae: (i) Limitation of function, activities or social role in comparison with healthy same-age peers in the areas of physical, cognitive, emotional, and social functioning, as well as growth and development. (ii) Dependency on one or more of the following to compensate or minimize limitation of function, activities or social role: medications, special diet, medical technology, assistive device, or personal assistance. (iii) A need for medical care or related services, psychological services, or educational services over and above the usual for the child's age, or for special ongoing treatments, interventions or accommodations at home or school (Stein et al., 1993, p. 345). While welcoming such a comprehensive definition, the question arises as to who should determine limitation of function, be it in physical, social, or emotional fields. Doctors, teachers, parents, siblings, and the children themselves may each see the limitations differently, partly as a function of their experiences

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(e.g., parents generally do not always know much about what goes on in school) and partly because of differences in personal values or personality. Doctors tend to see the limitations of a disease to be greater than parents, who put greater value on the implications (Cadman, Rosenbaum, Boyle, & Offord, 1991). Similarly, doctors rated the quality of life in children with cancer to be higher than ratings made by parents (Billson & Walker, 1994). 8.27.4.2 Theoretical Issues 8.27.4.2.1 Deficit-centered models Given the obvious disadvantages associated with a chronic disease in childhood, early work adopted a ªdeficit-centeredº approach (Drotar, 1981). This emphasized the extent to which children and their families experienced problems, with little attention given to coping efforts. Early reports tended to confirm the validity of this model, with work involving children with a variety of chronic diseases pointing to the existence of widespread deficits in psychological, behavioral, and emotional function. More recently, large scale epidemiologial studies have also concluded that children with chronic diseases are at greater risk of maladjustment than healthy children (Cadman et al., 1987). Based on a study involving 3294 Canadian children, Cadman et al. (1987) concluded that chronically sick children were twice as likely as healthy children to show psychiatric disorder. Those with both a chronic disease and physical disabilty were at greater risk (3.4 times as likely as healthy children). 8.27.4.2.2 Conceptual models In an attempt to account for differences between children in their response to the stress of having a chronic illness, and guide interventions, recent theoretical explanations have attempted to include a wider range of variables than in the original deficit-centered models. Two models dominate much current empirical work (Thompson, Gustafson, Hamlett, & Spock, 1992; Varni & Wallandar, 1988). According to the disability±stress-coping model (Varni & Wallandar, 1988), the factor primarily responsible for increasing the risk of adjustment problems in chronically sick children is stress. This may be associated with their physical condition (disease±disability parameters) and related behavioral and environmental circumstances (functional limitations associated with the condition). In addition to disease related stress, children inevitably experience everyday stress in common with others.

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These may appear more difficult to manage because of the condition. For example, changing from junior to high school is stressful for all children (Simmons & Blyth, 1987) but more so for those who have a physical handicap which makes it difficult to get around a new environment. Such a change of school may also be stressful from a social point of view in that children may be obliged to explain their condition to new classmates and teachers. Adjustment is also thought to be mediated by individual differences in personal, social, and coping processes, and attenuated by various resistance factors such as family relationships. Although it is not possible that any single study can include all the variables identified in the model, a number of empirical studies have been reported which focus on elements of the model. For the most part, it seems that adjustment is not affected by the condition or its severity, but social and family variables are important. Family communication has been implicated in several studies as an important predictor of adjustment. There are similarities between the model proposed by Varni and Wallander (1988) and that of Thompson and colleagues (1992). Both view chronic disease as a potential stressor. However, Thompson adopts a more ecologicalsystems perspective. In particular, the model is less generic and emphasizes the importance of different dimensions of illness in determining adjustment. However, both models draw initially on theoretical ideas basic to the coping model of Lazarus and Folkman (1984). Both, therefore, stress the importance of cognitive appraisal of the situation, family processes, and coping strategies. These models are exemplary in defining a wider range of variables that interact to determine outcome in the child and are a major step forward from the earlier deficit centered models. Inevitably, they also share some problems. They are highly complex, with the result that it is only possible to test parts of the models. No overall assessment of the models has been attempted and none is likely to be made, given the complexity of the methods which would be involved. In addition, it is not always clear how the different variables identified contribute to the overall processes underlying adjustment; in many cases, they are simply identified and assumed to be relevant. Both make assumptions about the stress involved in living with a chronic disease, yet neither specify the nature of this stress with any precision. The very size and ambitiousness of these models is also their biggest disadvantage. Several models in social psychology also have some potential applicability. Attachment

theory, social learning theory, and attribution theory all have some potential, but until now have been used only in isolated studies. 8.27.4.2.3 Attachment theory A number of studies involving young adults treated as children for chronic or life-threatening conditions suggest that it is in the area of intimate social relationships that most negative sequaelae are observed (Ireys, WerthamerLarsson, Kolodner, & Gross, (1994). Such a finding points to the potential value of attachment theory, particularly as developed by Hazan and Shaver (1987). According to this model, attachment styles develop from experiences in regulating distress with attachment figures, and these styles guide responses to threatening situations. Secure attachment is thought to result from responsive caretaking and reflects situations in which individuals are allowed to acknowledge distress and request support. Anxious/ambivalent attachment develops from insensitive or inconsistent caretaking and results in hypervigilance to negative affect. It might be expected that prolonged illness in childhood affects the development of secure attachment, by limiting the availability of and accessibility to parenting. Despite the apparent relevance of attachment theory, surprisingly little work has investigated this model with sick children and their families. Feeney and Ryan (1994) present some empirical evidence in support of the model, although this was based on recall of early childhood experiences made by young adults. Their data support the predictions for anxious/ambivalent attachment but not for secure attachment. Secure attachment was more prevalent among females, although it was not associated with aspects of parenting as predicted. 8.27.4.2.4 Social learning theory Both subjective and objective health have been linked with parental modeling of the sick role. Parental modeling refers both to the prevalence of chronic illness in a parent as well as parental attitudes which encourage sick role behavior (such as being given special privileges if unwell or allowed time away from school). This model has been used to understand the occurrence of unexplained pediatric pain and guide intervention work. Walker and Greene (1989) found that children with unexplained pain tend to come from homes where there is a high incidence of illness among family members and where parents are highly solicitous to the child's physical complaints. This suggests that interventions may need to target parental

Chronic Illness behavior. Family based interventions, based broadly on social learning models, appear successful both in the management of unexplained pain (Sanders et al., 1989) and sickle cell disease (Walco & Dampier, 1990). 8.27.4.2.5 Attribution theory A study by Wright (1990) found that adolescents with renal disease who were poorly adjusted to their disease were more likely to be blamed by their parents compared with those in good control. For example, one father described his son, who was poorly adjusted, as follows: ªIt can be difficult getting him to stick to his diet because he can be awkward about what he eats.º In contrast, parents of well-adjusted adolescents suggested that any difficulties experienced were more a consequence of the environment or were associated with the disease: ªObviously she's missed out at school, but she's done incredibly wellÐshe's the type of person who's well-motivated and will get on with something, and that's pulled her through.º 8.27.4.2.6 Difficulties with theories A major barrier in health psychology in trying to implement theories developed in social and developmental psychology is in the measurement of key concepts. This was clearly a difficulty in the work involving attachment theory. In adults, attachment tends to be assessed by lengthy interview or forced choice questionnaires. These methods are not always suitable when working with sick children. For example, in a study by Feeney and Ryan (1994), different results were obtained depending on whether subjects were given a series of descriptions of attachment styles and asked to select the one that best described them, or rated themselves in terms of applicability across the three styles. The selection of measuring instruments can, therefore, have implications for quite major differences in reported results. Subtle differences in method may be even more influencial when working with children. 8.27.4.3 Methodological Issues 8.27.4.3.1 Sampling The appropriateness of the deficit-centered model has been challenged on a number of grounds (Lavigne & Faier-Routman, 1992), and initially explanations focused on methodological differences in the way in which studies were conducted. Certainly, much work in this area has not been above criticism from the point of

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view of methodological rigor. First, samples are often recruited from a single hospital or medical centre and may therefore lack comparability with samples elsewhere, in terms of characteristics of the population or in terms of the prevalent approach to care and management. The literature is dominated by work from prestigious medical centres. Inevitably such an approach also means that small sample sizes are the norm. In addition, it means that a hospital based sample includes children across a wide age-range, thus failing to take into account developmental changes in cognitive or social development which might modify the impact of illness. Second, it is common practice to compare responses of the sick group with population norms if these are available, or more commonly with an age and gender matched control group of healthy children. Apart from age and gender, many other factors are likely to be important, but it is rarely possible to match with much sensitivity. Third, there has been some disagreement about the best approach to data collection. Some have considered that the value of standardized instruments is paramount, even where this means that instruments are employed which were developed for different populations of children and may lack the sensitivity necessary to detect the impact of a chronic disease. Yet, given sample sizes, it is almost impossible to develop well standardized questionnaires with appropriate norms which tap the specific needs of the population of interest. Increasingly, workers are recognizing these difficulties and are turning to more qualitative methods of data collection (Lask, 1996). 8.27.4.3.2 Measures Despite the number of measures developed for use with adults, it is crucial that new measures are developed for work with children. In almost all conditions, younger children show different and arguably more serious difficulties compared with older children. Many of these follow from the younger child's difficulties in understanding the reason for treatment. In sickle cell disease, younger children show an increased incidence of bacterial infections (e.g., meningitis) and consequently require more frequent follow-up than older children. They also need closer supervision to prevent pain episodes (e.g., reminders about the need to drink plenty of fluids), partly because of the lesser cognitive maturity and partly because of the greater risk of complications during this period (e.g., damage to the spleen). Younger children with cancer may have significant

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physical problems in the short and long term (poor nutrition, growth impairment, cognitive impairment following radiotherapy) as well as emotional problems resulting from interrupted care-taking and the need for extended hospitalization. Older children with cancer may experience different emotional problems resulting from greater embarrassment associated with changes in physical appearance, interrupted school attendance, and peer and family problems. Although they are more able to understand the reason for treatment, this in itself may be distressing information, raising questions about disability or long term survival. Further examples can be found in almost all pediatric conditions. The challenge when working with children, however, is to take into account how concerns change with maturity. Central to many definitions of quality of life is the impact of disease on school or work and relationships with friends. Yet ªgetting on at schoolº may have more social meanings to the young child. The demands of the national examination system may create more academic concerns for the adolescent. There are qualitative shifts in patterns of friendship so that it is more common for older children to have fewer but more intimate friendships than younger children. Normative changes of this kind need to be taken into account. The speed of development means that concerns about illness can also change. A scale which was appropriate for three-year-old children was less adequate for five-year-olds (Cadman & Goldsmith, 1986). Thus, any measure of impact needs to be sensitive to normative developmental tasks and goals. (i) Parent completed measures In the past, there has been an assumption that parents are the most reliable sources of information about a child's well-being. In many situations, children may be too young, or too ill, to be able to answer for themselves. In these cases, medical staff have no choice but to rely on information from parents. Yet, it is surprizing how little evidence exists to suggest that parents are reliable informants about their child. Conclusions about the level of stress experienced by a child appear to be dependent on who is giving the information. Most agreement has been found between nurse ratings and behavioral observations, with lowest levels of agreement between parents and child self-report (Manne, Jacobsen, & Redd, 1992). Explanations about lower than expected correlations between parent and child report have focused on parents' own anxiety levels, but may also be dependent on other factors including age and

gender. The real limitation is, however, that parents' reports reflect their own anxiety about child health or behavior over and above more objective indicators. At the same time, children may be reluctant to discuss their illness with parents, knowing that this causes distress, even if they are not sure exactly why. We cannot, therefore, assume that parents' reports will inevitably match those of their child in all situations. Parents may be quite accurate reporters as far as some situations or behaviors are concerned. Parents appear well able to identify ªexternalizingº or acting out problems. They are less able to identify ªinternalizingº problems such as anxiety or sadness (Edelbrock, Costello, Dulcan, Conover, & Kala, 1986). In addition, they lack direct information which enables them to make competent ratings about difficulties the child experiences at school or in interactions with friends. (ii) Self-ratings Limitations in cognitive or linguistic skills raise unique methodological issues and have often been used as an argument against measuring symptoms or quality of life directly from children. First, it has often been assumed that children are less able, or even unable, to locate and identify pain with any reliability. In addition, they do not always use the same language as adults. For any child, treatment can be very painful. For the youngest, this may be aggravated by an inability to understand the reason for the pain. Second, the behavior of families appears important in how children express pain. Parents may influence children by modeling distress themselves or by differentially reinforcing inappropriate behavior. Parents who communicate anxiety, or repeatedly apologize about the treatment, reinforce distress behavior (Blount, Landolf-Fritsche, Powers, & Sturges, 1991). In contrast, parental use of distraction has been associated with less child distress. Although the magnitude of these relationships is generally small, the implication that child distress can be influenced by specific parental behavior has considerable implication for clinic staff. Concern about both these issues means that children's distress has often gone unrecognized. However, several recent studies suggest that it is possible to quantify how young children experience pain. McGrath and McAlpine (1993) used structured play and story telling tasks and concluded that from 18 months of age children were able to say that a pain hurts, localize it, and make efforts to alleviate pain and recognize pain in someone else. Children at this age are aware that they can control the extent of

Emerging Issues pain through hugs and kisses or with asking for medicine. By three or four years children spontaneously use distraction and report that playing makes them feel better. The available evidence therefore suggests that the majority of children should be able to assess pain and other physical symptoms or quality of life for themselves. If adults, parents, and staff are imperfect reporters of a child's health and well-being, how far can we rely on children to report their own illness experience? A number of objections have been raised to using children as their own reporters. Some of these are real and practical. Often children are very young, for example the mean age on diagnosis of leukaemia is four years of age (Boring et al., 1994). Children can be very ill, especially on diagnosis. As a consequence of their disease, they may have physical limitations which compromise their ability to make written or verbal responses. It is highly unlikely that any single measure could be developed which would tap the range of issues important throughout childhood, necessitating separate but related measures appropriate for different age groups. (iii) Observational measures A number of methods have been devised to assess the immediate pain of medical procedures. These include general measures, such as the Neonatal Facial Action Coding System (Grunau & Craig, 1987) and the Children's Hospital of Eastern Ontario Pain Scale (McGrath et al., 1985). Within pediatric oncology, the most widely used system (Jay & Elliot, 1984) includes provision for continuous behavioral recording in 15 second intervals and a weighted score of severity of distress for each of 11 behavioral categories assessed. Scores correlate well with physical parameters but not with child self-reports. Only one scale has been developed to assess longer lasting pain, although this is specifically for use with children with cancer (Gauvain-Piquard, Rodory, Rezvani, & Lemerle, 1987). Recognition of the limitations of current methodology is now widespread and much has been written to suggest alternative approaches. Many argue that ªwithinº group differences are more meaningful than ªbetweenº group differences. Thus, it is increasingly common to look for differences within a sample of children with a chronic disease, attempting to define subgroups who stand out in terms of particularly good or poor adjustment, rather than assume that sick children deviate from a normative sample. Also, many argue that it is important to pay careful attention to developmental issues

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involved. The kind of stressors experienced by child and family are age specific. Thus in studying the impact of hearing loss in children, measures should be developed which specifically tap the kind of difficulties experienced by parents of preschool children (Quittner, 1992). Such an approach is likely to be much more helpful from a practical point of view than the more global approaches adopted in the past, in that it allows for interventions to focus on the particular difficulties experienced by families. While standardized, quantitative instruments are often considered desirable, they can be limited. Often the research question cannot be answered by use of a standardized instrument, since such an instrument is not available. In these circumstances, researchers are increasingly turning to qualitative methodologies, either alone or in conjunction with more standardized assessment procedures: ªThere are no easy answers to the kinds of assessment problems that pediatric psychologists commonly encounterº (LaGreca & Lemanek, 1996, p. 137). The nonavailability of instruments to measure psychological or social functioning in health psychology, and especially child health psychology, is often a main obstacle to the establishment of collaborative work with pediatricians. At the same time, decisions about use of alternative instruments which appear to measure the same concept, can generate much unproductive debate. In all of this, the inference is often that similar issues would not be a problem if psychology was a ªscienceº in the true sense. In point of fact, many parallel dilemmas can be identified in medicine itself. It is not necessarily the case that clinicians would agree about the definition of asthma, or about the best method to assess severity. Debates about the most appropriate method to use are therefore not confined to psychology alone. 8.27.5 EMERGING ISSUES 8.27.5.1 Neuropsychology Pediatric neuropsychology has a great deal in common with developmental and child clinical psychology, and because of these associations there is much to be gained by the sharing of methods and measures used by each discipline. More importantly, the relationship between behavior and the brain can only be addressed adequately by studying the clinical, developmental, and psychosocial dimensions of childhood disorders (Fletcher, Taylor, Levin, & Satz, 1995). Researchers in pediatric neuropsychology are becoming increasingly aware of avoiding or at least recognizing sample biases, identifying risks for adverse clinical outcomes,

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and exploring the implications of findings for the development of appropriate interventions. Such advances require both methodological sophistication and active interdisciplinary collaboration (Rourke, Bakker, Fisk, & Strang, 1983). Since the 1980s there has been a substantial increase in the number of papers devoted to neurodevelopmental issues in behavior (Rourke et al., 1983; Taylor & Fletcher, 1995). As the central nervous system (CNS) is in a state of rapid change during childhood, dysfunction is typically reflected in a failure to develop certain cognitive and behavioral capacities rather than a loss of previously acquired skills. The numbers of children at risk are relatively high, some 100 000 children below the age of 15 years are hospitalized annually for traumatic brain injury (Snow & Hopper, 1994). A substantial number of these demonstrate injury-related impairments in cognitive functioning and behavior (Fletcher & Levin, 1988). Other conditions associated with learning and behavior problems include epilepsy, spina bifida, and very low birth weight. Some intellectual deterioration has been noted in children with leukemia treated by CNS irradiation, especially where treatment occurred in the first five years of life (Eiser, 1991). Others have noted some loss of function in children with insulin dependent diabetes (Kovacs, Ryan, & Obrosky, 1994). Neurological impairment can have a significant impact on the overall functioning of a growing child or adolescent, whether the impairment is acquired or congenital. Although most children show at least some capacity for development or recovery of function, it is very difficult to predict the extent to which this will occur in any individual case. Studies have shown that the rate and degree of recovery and subsequent sparing of function appear to depend mainly on location, extent, and development of the lesion; exposure to environmental stimulation; and demographic factors such as sex and age (Rourke et al., 1983).

implications for the specification of the rehabilitative program that is recommended for the child. Neuropsychological assessment of children with brain injury is also important for making diagnoses, and for accurate specification of the child's adaptive abilities and deficits for the purpose of remedial planning (Rourke et al., 1983). One of the most difficult aspects of the neuropsychological assessment of children is that of the formulation of satisfactory prognostic statements. Very little longitudinal research has been carried out in a number of crucial areas of concern to child clinical neuropsychologists. One possible exception is the area of learning disabilities (Rourke et al., 1983). Studies (Rourke & Orr, 1977; Staz, Taylor, Friel, & Fletcher, 1978) have yielded useful information regarding the sorts of developmental markers that indicate which children are at risk for academic learning disabilities over the long term. Such studies can also give important information about more transitory deficit patterns that are not associated with longer term consequences. Similar information may be useful for furthering understanding of neuropsychological assessment in other contexts. Neuropsychological assessment is invariably limited to intellectual functioning. This is as much a consequence of the availability of standardized measures to assess intellectual function, as recognition of those behaviors which are most vulnerable. Paradoxically, social and emotional functioning appear to be sensitive following neuropsychological damage, at least for children with leukemia treated with CNS irradiation (Butler & Copeland, 1993) and in pediatric AIDS patients (Moss, Wolters, Brouwers, Hendricks, & Pizzo, 1996). A greater innovation in method is necessary to assess the social and behavioral consequences, although video recordings have been used to assess with some success behavior (Moss et al., 1996).

8.27.5.1.1 Neuropsychological assessment

8.27.5.2 Adherence

One of the primary aims of neuropsychological assessment is to produce a reliable and valid description of the relationships between brain and behavior, by sampling those abilities that are thought to be subserved by the brain. This is followed by an understanding of those relationships, involving statements regarding the probability that the particular pattern of abilities and deficits exhibited by the child is due to compromised cerebral functioning as opposed to factors unrelated to brain functioning. This distinction may have important

For parents, encouraging young children to adhere to prescribed medication and behavioral treatment can be a major problem. For different reasons, adherence can continue to be a contentious issue among older children and adolescents. In addition, adherence has wide reaching implications for scientific progress. It is important that patients do what they are supposed to do so that treatments can be evaluated for their efficacy, safety, or possible side effects. Much attention therefore has been paid to questions of adherence.

Emerging Issues The terms adherence and compliance are used almost interchangeably, though they have different implications. Compliance, perhaps the more traditional term, has connotations of strict adoption and execution of medical advice. As a concept, adherence is preferred by psychologists in that there is an implication that patients do not, and should not, be expected to follow advice blindly. Patients may be more adherent with regard to some aspects of their treatment compared with others. Especially with regard to long-term conditions, patients (and parents) may make modifications to their recommended protocol, depending on what they believe best suits them (Deaton, 1985). Not surprisingly, pediatric adherence is often reported to be poor. This can include a range of behaviors, such as failure to keep appointments, or to take medication as prescribed. Nonadherence in the pediatric population varies from 20±80% (Litt & Cuskey, 1980), although much of this is restricted to children with acute, rather than chronic conditions. High rates have also been reported for children suffering from chronic or life-threatening conditions such as cancer (Teta et al., 1986), cystic fibrosis (Muszynski-Kwan, Perlman, & RivingtonLaw, 1988) and renal disease (Korsch et al., 1978). Work on pediatric compliance has been biased toward a few diseases (asthma, diabetes, and juvenile arthritis) with the most common focus being on medication use and blood and urine testing in diabetes. Other aspects of compliance (appointment-keeping, diet) have been little studied (Dunbar-Jacob, Dunning, & Dwyer, 1993). Part of the variability in results can be attributed to different methods to measure adherence. Patient reports, clinician estimates, and pill counts are often used, although all are subject to reporting bias. Physiological indicators such as blood serum assays to determine concentration of the prescribed drug in the blood are thought to be more objective methods. The difference is between attempting to determine adherence in children with diabetes by asking them what they have eaten compared with monitoring blood sugar levels. Failure to adhere with treatment is understandable from the child's point of view. Some medications are associated with changes in physical appearance which are likely to be unacceptable to a young person. Immunosuppressants used following heart transplants for example are associated with cushingoid features and puffy faces. Steroids used to control cancer are associated with weight gain and a generally bloated look. Nonadherence increases with the length and complexity of treatment (Haynes, Taylor, & Sackett, 1979) and extent to which

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treatment disrupts everyday life (Friedman & Litt, 1987). Family variables may also influence adherence. Poor family communication, and negative mother±child relationships have been implicated in several studies (Chaney & Peterson, 1989). Although much attention has been paid to questions of how children understand illness, the issue of how far this understanding influences coping with illness, compliance with treatment, general behavior, and decisions about the future, are less well-addressed. Although most work has been atheoretical, the ªhealth belief modelº (Becker, Maiman, Kirscht, Haefner, & Drachman, 1977) has been applied with some success (see Chapter 8.01, this volume). According to this model, the individual's readiness to comply with a prescribed regimen is dependent on perceptions of susceptibility to the specific illness, perceived severity of the condition, and the expected benefits of treatment against the barriers or difficulties of adherence. Using such a model, the importance of children's own cognitions and attitudes in determining their readiness to take prescribed medication has been emphasized (lannotti & Bush, 1993). It is likely, however, that other variables are involved when considering chronic, or life-threatening, rather than acute conditions.

8.27.5.3 Quality of Life Nowhere does the link between psychology and medicine become as apparent as in the potential implications of chronic disease for quality of life. This applies to both the shortand longer-term. In the short term, children can experience lengthy hospitalization, school absence, broken friendships, and physical discomfort. In the longer term there may be physical problems such as growth impairment and infertility (Shalet, 1989), respiratory (Jenney, Faragher, Jones, & Woodcock, 1995) or cardiac damage (Lipschultz, Colan, & Gelber, 1991) as well as educational and psychological problems (Eiser & Havermans, 1994). While pronounced in children with cancer, longer term difficulties, particularly with growth and education, characterize many other chronic childhood conditions. On the surface then, there are many reasons to suppose that children with chronic illness might experience a compromised quality of life (QoL). Health-related QoL refers to both the subjective and objective impact of dysfunction associated with illness, injury, or treatment. Investigators are agreed that QoL is a multifactorial concept, with implications for functioning along at least three dimensions:

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physical, mental, and social (Mulhern et al., 1989). Any agreement about measurement, however, seems some way off. Indeed, it has only recently been recognized that there is a need for a measure of patients' perceptions of the intensity of symptoms and limitations on daily life associated with different treatments. These patient perceptions are considered to be central for QoL, reflecting the uniqueness of individual experience. Although this has been addressed by several groups of researchers in adult patients (Aaronson, 1991) it is only recently being appreciated that there is a need for similar information specific to children. 8.27.5.3.1 Why measure quality of life? (i) As a basis of interventions More systematic attention to the determinants of QoL in children is needed as a basis for appropriate interventions. This may include interventions based on the social rather than the physical consequences of a disease. Work with young people with diabetes, for example, suggests that improvements in self-care can be achieved where friends are informed and involved in daily therapy (LaGreca, 1990). With few exceptions (Varni & Setoguchi, 1991), interventions have targeted physical symptoms at the expense of more social or behavioral consequences. As issues of importance to the child are increasingly understood, it should be possible to optimize outcomes by developing more appropriate interventions. (ii) To compare clinical trials As survival rates have improved there has been a recognition of the need for more sensitive and comprehensive measures of outcome. Such information may have implications for planning of future randomized studies. It is widely assumed that improvements in care and prognosis are best achieved in the context of controlled trials (Smyth et al., 1994). In cancer, for example, cranial irradiation is no longer routinely offered to standard risk children with acute lymphoblastic leukemia, following recognition of damage to long-term cognitive function or growth impairment identified in previous trials. In other diseases, it is important to know how far children perceive changes in medication to be beneficial or not. For children with asthma, for example, how are increases in steroid treatment reflected in psychological measures of QoL, regardless of changes in physical function? Accurate measures which reflect the impact of treatment from the child's

perspective are urgently needed and should be seen to be an integral part of the evaluation of new treatments. 8.27.5.3.2 Domains of quality of life A number of disease specific measures to assess QoL have been developed. These include QoL in children with asthma (West & Sammons, 1994), diabetes (Challen et al., 1988), and cancer (Eiser, Havermans, Craft, & Kernahan, 1995). Most are developed from interviews or focus groups involving children and their families, supplemented by information from medical and nursing staff. The general format involves asking patients to rate a series of statements on Likert-type scales. With the exception of West and Sammons (1991) who developed separate age-appropriate measures, they target a wide age range. To date there has been little attempt to develop a measure suitable for younger children and it has yet to be established whether or not this will prove possible. As shown in Table 1, which summarizes a number of measures developed specifically for work with children with cancer, there is some overlap in the kinds of domains identified to be important in QoL, but not as much as might be expected. In part, this lack of agreement is likely to be attributable to the poorly developed theoretical understanding of the concept of QoL. To some, QoL is in danger of becoming an umbrella term, ªunder which are placed many different indexes dealing with whatever the user wants to focus onº (Feinstein, 1987, p. 18). In the absence of a theoretical model about how individuals make judgments about their quality of life, there will remain a confusion in terms of what is being measured and lack of consensus about what constitutes appropriate domains. We are left with a situation in which we are forced to recognize that QoL is what is measured by QoL instruments, where validation of new measures is made against older measures and where for any single measure, what is actually measured may relate very little to patient experience. We recognize that QoL is an important issue for patients with chronic conditions. We know also that despite severe problems, many manage to maintain or even enhance their psychological well-being over preillness levels. How is this achieved? The question of how patients achieve satisfactory QoL is less discussed and remains an empirical rather than theoretical issue. Explanations based on discrepancies between real and ideal self may have some potential. In Rosenberg's model (1986), it is assumed that there are multiple aspects of the self that

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Emerging Issues Table 1 Cancer-specific quality of life scales for children. Scale Play performance (Lansky et al., 1985) Quality of well-being (Bradlyn et al., 1993) Multiattribute health status (Feeny et al., 1992) Quality of life (Goodwin et al., 1994)

Components

Respondents

Age range

Validity

None

Parents, physicians

1±16 years

Mobility, physical function, social activity, symptoms Mobility, cognition, sensation, pain, self-care, fertility, emotion Physical function, emotional distress, reaction to treatment

Parents

4±18 years

Physicians

8±25 years

Global function, research interviews Play performance, treatment toxicity Population norms

Parents

very wide

develop through internal evaluations and interpersonal experiences. In response to external events, different aspects of the self can be enhanced or modified. Two of the hypothesized components of self are the ideal self and the actual self. Ideal self refers to an individual's aspirations about who they would like to be; actual self refers to concepts of who one really is. Individuals are motivated to achieve a match between ideal and actual self in order to reduce tension or discomfort, thus alleviating experienced depression or anxiety. Thus, when external events threaten a person's self-concept, different aspects of the self are altered in attempts to maintain actual-ideal self-comparability and reduce psychological distress. It is predicted that a good match between actual and ideal self is associated with good psychological adjustment. The theory is able to cope with the finding that people with a life threatening condition become adjusted over time, perhaps through a process of making adjustments to actual±ideal self discrepancies. Some empirical work with adults supports this view. One study found that elderly women with cancer had lower actual and ideal selfratings than women without cancer, but were no different in terms of self-discrepancies and adjustment (Heidrich & Ward, 1992). This may suggest that adjustment to a life-threatening situation can be achieved by reducing the discrepancy between real and ideal self. Given the threatening nature of a diagnosis of a chronic condition, we might predict that greater actual±ideal self-discrepancies would occur around diagnosis which would subsequently be reduced over time. In this view, close correspondence between actual and ideal self at diagnosis may be nonadaptive in that appropriate adjusting mechanisms have not been

Play performance, child behavior, checklist, depression

brought into play. Discrepancies which persist after diagnosis might be expected to be associated with greater psychological dysfunction. The model also offers a means to test empirically the outcome of evaluations; we might predict that successful interventions would result in a closer match between actual and ideal self. To what extent might this model be applied to children as well as adults? Given appropriate methods (Eder, 1990) it has been shown that children as young as three and a half years appear able to report consistent and meaningful concepts, suggesting an awareness of psychological self-understanding equivalent to actual self. There appears to be little empirical work regarding the development of the ideal or future self in children. However, we have some anecdotal evidence that children with chronic illness at least anticipate that some changes in their psychological make-up are attributable to illness and expect these to change with future (anticipated) improvements in health. A child with asthma reported that he would be less moody when he ªoutgrewº his asthma; a 12year-old girl with a newly diagnosed bone tumor attributed her current emotional state of weepiness to the diagnosis, and suggested this was not the way she really was, or would be again when treatment was complete.

8.27.5.4 Family and Ethnic Issues There is no doubt that the diagnosis of chronic illness has a major and potentially very damaging effect on family life. Conversely, the family may be the single most important factor in determining how well the child is able to adapt and cope with the situation. Family

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studies have most frequently been rooted in the circumplex model (Olson, Russell, & Sprenkle, 1983), which assesses two dimensions of family functioning: cohesion and adaptability. Cohesive families may be further described as disengaged, separated, connected, or enmeshed. In terms of adaptability, the defined levels include rigidity, structure, flexibility, or chaotic. Family functioning appears to be related to the duration as well as characteristics of the disease. In diabetes, for example, the correlation between good metabolic control and family functioning which is often found following diagnosis, was substantially reduced with a longer duration of the disease (Hanson et al., 1989). Community studies of children's mental health point to the importance of family structure. The moderating effect of both parents being at home appears as important for the wellbeing of children with chronic illness as the rest of the population (Gortmaker & Sappenfield, 1984). Behavioral consequences of a chronic condition were magnified where one of the biological parents was absent. Children with chronic conditions from single parent families have been reported to have poorer adherence to treatment (Christiaanse, Lavignes, & Lerner, 1989) and poorer school attendance (Anderson, Bailey, Gasper, Palmer, & West, 1983) compared with those with similar conditions from two parent families. Most work concerned with the impact of illness on family coping and personal relationships has focused on responses from Caucasian, middle-class groups. However, variations in family structure are likely to be especially important. In addition, beliefs about the cause or etiology of disease are likely to be mediated by ethnic or cultural differences. The unique difficulties experienced by children with chronic conditions from non-Caucasian backgrounds has received virtually no attention. This is especially surprising given that, outside the realm of chronic illness, many ethnic minorities have problems which are specific to them, and often which are not well recognized by the healthcare system. For example, a number of risk factors associated with the use of illicit drugs were identified to be specific to AfricanAmerican youth (Farrell, Danish, & Howard, 1992). This group have also been found to be at the highest risk for homicide (Yee, 1995), and are more likely than other racial or ethnic groups to be injured in violent episodes (Sheley, McGee, & Wright, 1992). Both African- and Latin-Americans and are at higher risk for HIV/ AIDS than the rest of the population (Centers for Disease Control, 1995). ªUnique social, cultural and ethnic antecedentsº (Yee, 1995)

must be incorporated into current models of risk behavior if progress is to be made in closing the gap between certain high-risk ethnic minorities and the rest of society. Some recent studies have focused on conditions which exclusively, or predominantly affect certain ethnic groups (e.g., sickle cell disease; Lemanek, Moore, Gresham, Willianson, & Kelley, 1986). In these cases, greater care needs to be given to disentangling any confounds between ethnicity and social class (Lemanek et al., 1986). Piecemeal application of measures developed for work with Caucasian children may be inappropriate, given differences between ethnic groups in the meaning and implications of illness (Penn, Kar, Kramer, Skinner, & Zambrana, 1995). There is a need for more ethnic-specific services and care within the present healthcare systems, in the UK and in the USA. 8.27.6 COMMUNICATION 8.27.6.1 Understanding Health and Illness As late as the 1950s and 1960s, it was considered appropriate that children should not be informed about their illness or involved in decision-making about alternative treatments. To some extent, this view is understandable when we consider the poor prognosis for most children who experience chronic illness or accidental injury. It was feared that information would be unnecessarily distressing for the child and would result in poorer adherence and cooperation with treatment. Over the years, attitudes have changed considerably. This can be attributable to the much improved prognosis for many conditions; it is no longer the case that information given is inevitably about the severity or life threatening nature of the condition. There are also many more legal and ethical issues which have been raised making it more standard practice to involve children in all aspects of health care. While the consensus is that children need to be involved, questions about what they should be told, and how or by whom, are much less resolved. A central issue in pediatric health psychology in recent years has been an increasing interest in how healthy children understand the concepts of health and illness, and how these beliefs are modified by personal and vicarious experience of illness. With respect to the question of how sick children understand their illness, the research tool most often used has been the semistructured interview, with the general questions about minor childhood illnesses being replaced by questions about the the child's own

Communication condition. When the responses are categorized into one of Piaget's stages it appears that the developmental sequence described for healthy children also accounts for development in children with chronic conditions such as asthma, epilepsy or arthritis (Beales et al., 1983; Perrin, Stein, & Drotan, 1991). One area of concern however is how poorly informed many children appear to be about their illness. Part of this problem arises because often the child is diagnosed at a very young age when information is necessarily directed to the parents (Eiser & Kopel, 1996). There is also the issue of parental avoidance when the child mentions the illness, and in some families inappropriate blanket explanations are preferred regardless of the ages of the children concerned. Incongruities occur between what the parents want the child to know and what the child wants to know. Most children want more information, and that it is repeated (Canam, 1986). It is not clear how or when information is given to the child, and unfortunately many children learn about their disease through rather unsatisfactory sources such as friends, relations, or the media (Kendrick, Culling, Oakhill, & Mott, 1986). There is some evidence that the children who adjust well are those who are told about their illness on diagnosis or shortly after diagnosis (Claflin & Barbarin, 1991), but there has really been insufficient work in this area for definitive conclusions to be drawn. Many chronic conditions can involve long and painful treatment, and in the case of young children parents make treatment decisions. With older children, however, the question arises as to how far they should be able to intervene in their own treatment. Despite the importance of this issue, there is little work concerned with how children and adolescents come to understand treatment alternatives and make reasoned decisions. One exception is the work by Weithorn and Campbell (1982), who developed a series of scenarios involving either psychological or medical treatment decisions for four different problems: diabetes, epilepsy, depression, and enuresis. The study compared the performance and decisions made by subjects aged 9, 14, 18, and 21 years. Results showed that minors (aged 14 years) demonstrated a level of competence equivalent to that of adults. Nineyear-olds appeared less competent on measures of understanding and rational reasons, but did not differ from adults on measures of treatment choices and reasonable outcome alternatives. The authors conclude that the majority of adolescents are able to make competent decisions about their own welfare before the currently accepted age of 18 years. However,

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the way in which children and adolescents make decisions in hypothetical situations may be very different from the choices they make when faced by real-life treatment dilemmas. Unfortunately moral and ethical objections mean that real-life decision making is particularly difficult to study, and evidence as to how well children are able to understand the concept of a clinical trial, or make rational decisions about their own treatment is scarce. An exception is a study by Postlethwaite et al. (1995) in which the psychological consequences of involving children in decisions about treatment options was explored. As a consequence of renal disease, the children were offered growth hormone treatment to counteract retarded growth. Decisions about whether or not to agree to the treatment were difficult for parents and child. The majority of parents were able to understand the issues involved, but ease of decision-making was not related to understanding. Choices were influenced by the views of pediatricians, emotional factors and personal style. Decisions were not dependent on physical factors, such as the child's height deficit, concern about growth or understanding of the risks of treatment. The children (aged between 9±14 years) had much more difficulty understanding the information than their parents. Even so, most felt that they had been involved in decision-making. The authors highlight the need to provide children with ageappropriate information, but again, fail to specify what this might entail. One of the main problems in this area is the failure to develop reliable methods of assessment for younger children with limited language and reading skills. To begin to understand more clearly what children know about their illness, child-centered instruments need to be developed which are less dependent on language than the traditional semistructured interview approach, and which can be used with sick or handicapped children as well as healthy children.

8.27.6.2 Genetic Testing Recent developments in molecular genetics have enabled clinicians to test directly for the gene responsible for many inherited diseases. Where conditions do not manifest themselves until adulthood this poses considerable ethical problems when trying to decide whether to perform such tests on children and adolescents (see Chapter 8.17, this volume). The same dilemma occurs regarding children who have inherited genes for recessive disease, (such as cystic fibrosis) which, although having no impact on the individual's own health, may

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have important implications for the health of their own children at some later stage. The advent of molecular genetic screening programs for the general population may also create problems in that a family may be informed that their child has a disease for which no cure is available. In situations such as this it is difficult to see the benefits of such programs. Newborn and infant screening can be advantageous in that it provides the parents with useful information regarding future family planning and reproductive decisions, as well as sparing the parents a long period of anxiety when they realize that the child has a problem which has not yet been diagnosed (Michie, 1995). However, because of possible costs such as the marring of many potential years of happiness, and damaged family relationships, the balance between the pros and cons of across the board childhood genetic screening must be carefully balanced before being brought into general practice (Michie, 1995). This is also true with regard to the testing of children in families with histories of certain genetic diseases. Although in recent years there have been many requests to test minors presymptomatically, the general consensus among clinicians advises against testing due to fears that such knowledge could distort the child's future emotional or educational development, or blight their lives much earlier than the disease would given its natural course (Michie, 1995). Family problems may also arise in cases whereby one child in the family is identified to be at high risk and another at low risk or unaffected. The hope is that in these circumstances there may be some individuals who would come to terms with their result more successfully than they would if the test had been postponed until adulthood. In practice, however, it is very difficult either to support or refute this argument. Although the abilities of children to consider the issues of consent to genetic testing should not be underestimated, there are as yet no strategies to assess a child's understanding of all that is involved (Michie, 1995). Assumptions about children's cognitive functioning should not be used to exclude them from the decision-making process. There are other ethical as well as practical problems when dealing with the issue of childhood testing. One of the main considerations is that testing removes the individual's future right to make their own decision to be tested as an adult. This is a particularly notable concern when adult predictive testing data is examined. For example, far fewer adults with Huntington's disease have actually chosen to have the test than was expected based on studies looking at expected uptake before the test was available (Crauford, Dodge, Kerzin-Storrar, & Harris,

1989). However if the decision had been made for them to have the test in childhood they would not as an adult have the option to ªopt outº of having the test. Other concerns include the fact that testing children is not completely confidential in that the parents will know the results, and that knowledge of a child's genetic status may alter future upbringing and pattern of relationships with peers and other family members. It seems appropriate to advise caution in carrying out predictive genetic tests on children until more information is available about the effects of such tests. Costs such as damaged self-esteem and family relationships, and possible long-term health and life insurance difficulties, must be weighed against potential benefits, such as improved coping and the release of parental anxiety and concern over the child's future health.

8.27.7

PROFESSIONAL ISSUES

There is inevitably some friction between psychologists and pediatricians in the way in which they approach research and clinical issues concerned with chronically sick children. Although both share some ideals about what should be done to help children with chronic conditions and their families, their training and experience does not necessarily mean that they share the same research agenda (Stabler, 1988). Some compromises have to be made. Perhaps the major obstacle is in defining the question to be asked. Too much work which has started from a psychological perspective has proved to have little impact in a practical context. Many might argue that implications for practice should not be the sole criterion against which success should be considered. It might then be expected that contributions to theoretical development would be important. In fact, this does not always appear to be so. Some of the questions asked in psychological work, such as identifying ªadjustmentº in heterogeneous groups is of very limited value in a clinical context (Lavigne & Faier-Routman, 1992). Too often, in psychological work, a group of patients are used as a convenience sample to test some aspect of theory, regardless of specific relevance. In these situations, clinical implications are limited to a brief paragraph at the end of the paper, often highly speculative. For many, the honeymoon period for pediatric psychology is over. A survey of published work (Roberts et al., 1996) suggests that the most common type of research is explicative, that is, studies attempt to show an association between medical and psychological variables. Some of this work is well-represented

References in the previous sections. In contrast, research aimed more directly at issues of clinical concern, including assessment, prevention, and intervention, is at a premium. In contrast to psychological research, medical papers start very much from a practical question. The methods, however, are often not specified with sufficient detail to allow for replication, and the results are often discussed within a narrow clinical context. There is rarely any attempt to extrapolate from this context to more general practical or theoretical issues. The paper that takes a real practical issue and applies a satisfactory level of methodological expertise and statistical rigor to the analysis is rare indeed. Questions should be theory-driven, but sensitive to clinical needs (LaGreca & Lemanek, 1996). Such an ideal is dependent on the development of theories that lend themselves to clinical application. Disappointingly, many theories in mainstream psychology have been developed in relation to specific contexts and do not lend themselves readily to other situations. In practice, it is often difficult to find a theory which is appropriate for the clinical setting in question.

8.27.8 CONCLUSIONS Pediatric psychology has been defined as an interdisciplinary field addressing physical, cognitive, social, and emotional functioning and development as they relate to health and illness issues in children, adolescents, and families. It aims to explore the relationship between the psychological and physical well-being of children, adolescents, and families, including: psychosocial and developmental factors contributing to the etiology, course, treatment, and outcome of pediatric conditions; assessment and treatment of behavioral and emotional concomitants of disease, illness, and developmental disorders; the role of psychology in health care settings; behavioral aspects of pediatric medicine; the promotion of health and health-related behaviors; the prevention of illness and injury among children and youth, and issues relating to training. The goals of this branch of psychology are wide-ranging and ambitious. In the relatively brief history of the discipline, much has been achieved, though it is notable that attention to some issues is disproportionately high compared with others. Many more resources have been channeled toward exploring the relationship between psychological and physical wellbeing compared with assessment and treatment issues. There has generally been more of a focus on children with chronic, rather than acute

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conditions, and on the etiology of emotional and behavioral consequences of disease compared with lifestyle behaviors in the general population. There is a focus on illness rather than developmental disorders; a fleeting rather than comprehensive study of psychological issues in health care settings. Interest in injury prevention and training is small, but increasing. There are strengths and weaknesses in a discipline which has such ambitious goals especially where many of these overlap with the interests of other professionals. Certainly some of the defined goals might be considered to be more the remit of clinical rather than pediatric or health psychology (e.g., developmental disorders). The nature of much of the work involves collaboration with other professionals; clinicians, teachers, and social services. Issues of training need particularly to address the potential obstacles to successful collaboration (Stabler, 1988). The rewards inherent in successful collaboration are nevertheless much higher than where collaboration is limited to post hoc attempts to speculate about the potential value of research for practice. Despite the criticisms that can be made, there is no doubt that the establishment of a child health psychology in itself has done much to increase the profile of work with children. The difficulties involved may be considerable, but these also contribute to its attractiveness. That children have a unique perspective on life, despite the hardships of a serious illness, is without debate. From such a perspective, and for many people, work with children is therefore not only humbling, but intrinsically more satisfying, than work with other groups. 8.27.9 REFERENCES Aaro, L. E., Laberg, J. C., & Wold, B. (1995). Health behaviors among adolescents: towards a hypothesis of two dimensions. Special issue: Measured in health education research. Health Education Research, 10, 83±93. Aaronson, N. K. (1991). Methodological issues in assessing the quality of life of cancer patients. Cancer, 67, 844±850. Alwash, R., & McCarthy, M. (1988). Measuring severity of injuries to children from home accidents. Archives of Disease in Childhood, 63, 635±638. Anderson, H. R., Bailey, P. A., Cooper, J. S., Palmer, J. C., & West, S. (1983). Morbidity and school absence caused by asthma and wheezing illness. Archives of Disease in Childhood, 58, 777±784. Baker, S. P., O'Neill, B., & Karpf, R. S. (1984). The injury fact book. Lexington, MA: D. C. Health. Bar-Or, O., & Malina, R. M. (1995). Activity, fitness, and health of children and adolescents. In L. Cheung and J. Richmonds (Eds.), Child health, nutrition and physical activity. Champaign, IL: Human Kinetics. Beales, J. G., Holt, P. J. L., Keem, J. H., & Mellor, V. P. (1983). Children with juvenile chronic arthritis: Their beliefs about their illness and therapy. Annals of the Rheumatic Diseases, 42, 481±486.

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.28 Tobacco Smoking MARTIN J. JARVIS University College London Medical School, UK and GAY SUTHERLAND Institute of Psychiatry, London, UK 8.28.1 INTRODUCTION

646

8.28.2 PATTERNS OF SMOKING PREVALENCE WORLDWIDE

646

8.28.3 SMOKING AS A CAUSE OF DEATH

646

8.28.3.1 8.28.3.2 8.28.3.3 8.28.3.4

647 648 648 649

Diseases Caused by Smoking Smoking in Pregnancy Health Effects of Passive Smoking The Health Benefits of Smoking Cessation

8.28.4 CIGARETTE SMOKING AND NICOTINE DEPENDENCE

650

8.28.5 THE SMOKING CAREER: PATTERNS OF UPTAKE, MAINTENANCE, AND CESSATION OF SMOKING

651

8.28.5.1 8.28.5.2 8.28.5.3 8.28.5.4

Recruitment of Young People to Cigarette Smoking Adult Smoking: Disadvantage and Dependence Factors Associated with Smoking Cessation Rates of Spontaneous Cessation in Smokers

651 652 652 654

8.28.6 PSYCHOLOGICAL SYMPTOMS

654

8.28.7 ASSESSMENT

656

8.28.7.1 8.28.7.2 8.28.7.3 8.28.7.4

657 658 658 660

Assessing Motivation and Intention to Quit Assessing Nicotine Dependence Questionnaire Measures of Dependence Biochemical Measures of Dependence

8.28.8 TREATMENT APPROACHES

661

8.28.8.1 Behavioral and Public Health Approaches 8.28.8.2 Pharmacological Approaches to Smoking Cessation 8.28.8.2.1 Nicotine replacement therapy 8.28.8.2.2 Non-nicotine pharmacotherapy

661 663 663 666

8.28.9 APPROACHES TO REDUCE SMOKING-RELATED DISABILITY

667

8.28.10 PROSPECTS FOR THE FUTURE

668

8.28.11 REFERENCES

668

645

646

Tobacco Smoking

8.28.1 INTRODUCTION Tobacco smoking presents numerous paradoxes. Despite being possibly the most prevalent, and certainly the most lethal, form of drug dependence in the world, for years cigarette smoking was regarded as no more than a social habit and there was little awareness of its psychoactive component, nicotine. Nicotine is in many ways an invisible drug, which lacks obvious effects on users' cognitive performance, mood, or social functioning. Yet it is now regarded by many as the purest pharmacological dependence, the very paradigm of drug addiction. Nicotine is a stimulant drug which users say calms them down and sedates. Smoking is often viewed as a form of selfmedication to cope with stress, but there is little evidence that nicotine possesses any anxiolytic or anti-depressant properties. Despite nicotine's lack of euphoriant or other obvious mood altering effects, smoking is remarkably recalcitrant to change. Most smokers want to give up smoking, and make numerous attempts to do so. But even those with severe smoking-related disease often fail to quit, and even in developed countries with a strong antismoking ethos, fewer than half of all those who have ever smoked regularly succeed in stopping before the age of 65. It is this feature above all which has made smoking a focus of interest for psychologists. It has long been an area of active research into methods of achieving behavior change, as well as for understanding the complex interplay between pharmacological, psychological, and social determinants of behavior. After years when progress was very limited, there have recently been genuine advances in developing effective, and cost-effective, treatment methods for smoking cessation. But failure to succeed in quit attempts, or relapse following initial success, are still the norm, and young people continue to be recruited to smoking in large numbers. The smoking problem shows no sign of going away. 8.28.2 PATTERNS OF SMOKING PREVALENCE WORLDWIDE While tobacco use has a long history, with forms such as pipe and cigar smoking, chewing tobacco, and nasal snuff predominating in earlier periods, the manufactured cigarette, and with it the epidemic of smoking worldwide, is essentially a phenomenon of the twentieth century. Annual per capita consumption of cigarettes in adults in developed countries rose steadily from 600 in 1920 to a peak of over 3000 in the mid-1970s, since when there has been a modest decline of some 16% (Collishaw &

Lopez, 1996). In developing countries, on the other hand, cigarette consumption increased sharply in the 1970s and 1980s, so that the gap in per capita cigarette consumption between developed and developing countries is narrowing. On current trends, per adult consumption in developing countries will exceed that of developed countries shortly after the turn of the century. Table 1 shows WHO estimates of smoking prevalence in men and women in various regions in the world in the early 1990s, and also trends in per capita consumption since the late 1970s. Among men, worldwide prevalence, at 47%, approaches one-half of all adults, with particularly high levels being seen in China and in the former socialist countries of Eastern Europe. Globally, women's smoking is at much lower levels than that of men (12%), with relatively high prevalence being seen in developed countries and low rates in Africa, India, China, and other parts of Asia where cultural traditions still frown on female smoking. In terms of the total world market, the decline since 1970 of 1.5% per annum in per capita consumption in the American region and of 0.6% in Western European countries has been more than offset by rapid growth in China (4.8% per annum) and other less developed countries, with the result that overall the size of the market continues to increase.

8.28.3 SMOKING AS A CAUSE OF DEATH Because the magnitude of the risk to health rises with increased duration of the habit, increases in deaths from smoking show a time lag of about 30±40 years from the onset of regular smoking. As a result, differing patterns of smoking related deaths are currently seen in men and women. In the UK, although male smoking declined from the 1960s onward, smoking deaths have only recently begun to decline; while in women death rates are rapidly increasing and will continue to do so for some years, despite prevalence peaking in the early 1970s (Peto et al., 1996). Table 2 gives estimates of the total number of deaths caused by smoking in developed countries since 1955. In 1955, smoking was responsible for about 500 000 deaths per year, mostly among men. Since that time smoking-attributable deaths have risen dramatically and by 1995 almost 2 million people (1.5 million men and 500 000 women) in developed countries were dying each year from tobacco. The rate of increase is now slowing somewhat among men, but continues to increase rapidly in women. In the mid 1990s about 25% of all male deaths, and

647

Smoking as a Cause of Death

Table 1 Daily smoking prevalence in men and women aged 15 and over, selected world regions, early 1990s: WHO estimates.

Men (%)

Women (%)

Annual % change 1970±1972 to 1990±1992 per capita cigarette consumption

WHO regions African region American region Eastern Mediterranean region European region Southeast Asia region Western Pacific region

29 35 35 46 44 60

4 22 4 26 4 8

1.2 71.5 1.4 0.0 1.8 3.0

More developed countries Established market economies Formerly socialist economies of Europe

42 37 60

24 23 28

70.5 70.6 0.6

Less developed countries China (1984) India (1980s) Other Asia and islands Middle Eastern crescent Sub-Saharan Africa Latin America and the Caribbean

48 61 40 54 41 25 40

7 7 3 7 8 3 21

2.5 4.8 1.5 2.1 1.2 1.0 70.4

World

47

12

0.8

Source: Collishaw and Lopez (1996).

9% of female deaths, in developed countries were due to smoking. The proportion of deaths in middle age (35±69) caused by smoking is considerably higher, at 36% in men and 13% in women. Estimates of smoking related deaths in the developing world are more uncertain, but it is already clear that the increases in smoking prevalence that have occurred in the developing world since the 1970s will lead inexorably to massive increases in deaths. The current worldwide annual figure for deaths caused by smoking of 3 million (made up of 2 million in developed and 1 million in developing countries) is estimated to increase to 10 million per year by about 2020 or 2030. The great bulk of these deaths will be in the developing world (Peto, Lopez, Boreham, Thun, & Heath, 1994).

8.28.3.1 Diseases Caused by Smoking The link of smoking with lung cancer was first reported in prewar Germany (Smith, Strobele, & Egger, 1994), but this work was largely forgotten, and the findings of Doll and Hill (1950) and Wynder and Graham (1950) stimulated the setting up of a number of epidemiological studies which established the foundations of our understanding of smoking as a cause of disease. Based on the 20 year follow-up of the British doctors cohort, it was

concluded that a young man who persists in smoking will run a 1 in 4 chance of being killed prematurely by tobacco (Royal College of Physicians, 1971). More recent studies, including the 40 year follow-up of the British doctors (Doll, Peto, Wheatley, Gray, & Sutherland, 1994) and the second large study of the American Cancer Society (CPS II) (Thun, Day-Lally, Calle, Flanders, & Heath, 1995) have extended this understanding and forced a re-evaluation of the extent of the risk. It is now apparent that persistent smokers run a 1 in 2 risk of being killed by cigarettes, losing on average eight years of life. Table 3 summarizes data from the American Cancer Society study of over 1 million men and women aged 35 and over, giving mortality in cigarette smokers and life-long nonsmokers for the main fatal smoking-related diseases. The relative risk and absolute excess risk is given for each disease, together with the attributable proportionÐthe proportion of all deaths for each specified disease that is due to smoking. Smoking is recognized to cause 80% or more of all lung cancers with a relative risk in men of 22 and women of 12. In addition it is responsible for most cancers of the upper respiratory tract (lip, tongue, mouth, pharynx, and larynx) and for a smaller fraction of cancers of the bladder, pancreas, esophagus, and kidney. Among both men and women, smoking-attributable deaths

648

Tobacco Smoking Table 2 Estimated deaths caused by smoking in developed countries, 1950±2000. Men

Women

Mid-decade year

No. of deaths per year

% of all deaths

% of deaths age 35±69

No. of deaths per year

% of all deaths

% of deaths age 35±69

1955 1965 1975 1985 1995

447 000 793 000 1 119 000 1 369 000 1 442 000

10 17 21 24 25

20 28 31 35 36

26 000 70 000 165 000 317 000 476 000

51 2 3 6 9

2 4 7 11 13

Total all deaths caused by smoking 1950±2000

52 million

20

30

10.5 million

4

7

Source: Peto et al. (1994).

from cardiovascular disease (ischemic heart disease, aortic aneurysm, and stroke) outnumber those from all other causes, including lung cancer. Over 70% of chronic obstructive lung disease is attributable to smoking, with a relative risk in both male and female smokers of about 10. Findings from the 40 year follow-up of the British doctors' study are in general very similar, but additionally indicate a causal effect of smoking on stomach cancer and leukemia. Associations between smoking and cirrhosis of the liver, suicide, poisoning, and cancer of the liver have been regarded as being due to confounding (Doll et al., 1994). Similarly, there is uncertainty whether the association of smoking with cervical cancer is causal or attributable to confounding (Phillips & Smith, 1994). As well as being the single largest cause of preventable premature death, cigarette smoking is a cause of a number of disabling but generally nonfatal conditions (Wald & Hackshaw, 1996). These include peripheral vascular disease, cataracts, Crohn's disease, gastric and duodenal ulcers, hip fracture in the elderly, and periodontitis, the major cause of teeth loss in adults.

8.28.3.2 Smoking in Pregnancy Smoking is an important hazard in pregnancy, leading to an increased risk of spontaneous abortion and doubling the risk of ectopic pregnancy (Poswillo & Alberman, 1992). Babies of smoking mothers weigh on average 150±250 grams less at birth than babies of nonsmoking mothers. This association has been shown to be causal, since randomized trials of smoking cessation in pregnancy have shown that birth weight can be increased (Sexton & Habel, 1984). Smoking by mothers has consistently been found to be associated with sudden infant death syndrome, although it is uncertain whether pre-

natal exposure, or passive exposure to mother's and father's smoking postnatally, is more important (Blair et al., 1996; Haglund & Cnattingius, 1990; Klonoff-Cohen et al., 1995).

8.28.3.3 Health Effects of Passive Smoking The adverse effects of cigarette smoking on health are not limited to active smoking. Since the early 1980s there has been an explosion of research into the effects on nonsmokers of breathing in other people's smoke, and this work has had a decisive impact on the debate about the social acceptability of smoking. Studies of the uptake of smoke constituents by nonsmokers have shown dose±response relationships with the extent of exposure to passive smoking (Jarvis, 1989). Cotinine concentrations in exposed individuals have been found to average about 0.7±1.0% of those in heavy smokers (Jarvis, Tunstall-Pedoe, Feyerabend, Vesey, & Saloojee, 1984; Jarvis et al., 1985). A number of reports by independent scientists have reviewed the evidence linking passive smoking with lung cancer in nonsmoking spouses exposed to their partners' smoke. All have concluded that passive smoking causes lung cancer in otherwise healthy nonsmokers, with an estimated number of deaths each year of 3000 in the USA (US Environmental Protection Agency [USEPA], 1992) and about 300 in the UK (Froggatt, 1988). The USEPA has classified environmental tobacco smoke as a known human carcinogen. The association of heart disease with passive smoking is of similar magnitude to that observed for lung cancer, with exposed spouses having about a 30% increase in risk. On a causal interpretation of this association, passive smoking may kill far more people through heart disease than through lung cancerÐup to 60 000 deaths each year in

649

Smoking as a Cause of Death Table 3

Fatal diseases associated with smoking: American Cancer Society (CPS II) men and women aged 35+. Standardized mortality per 100 000 per year

Cancer Lung Upper respiratory Bladder Pancreas Esophagus Kidney Ischemic heart Aortic aneurysm Stroke Chronic obstructive lung disease All diseases

Life-long nonsmoker

Current cigarette smoker

Relative risk

Absolute excess risk per 100 000 per year

Attributable (%)

M F M F M F M F M F M F M F M F M F M F

24 18 1 2 18 8 18 16 9 4 8 6 500 386 24 11 147 236 39 21

537 213 27 10 53 21 38 37 68 41 23 8 970 688 98 52 328 434 378 216

22.4 11.9 24.5 5.6 2.9 2.6 2.1 2.3 7.6 10.3 3.0 1.4 1.9 1.8 4.1 4.6 2.2 1.8 9.7 10.5

513 195 26 8 35 13 20 21 59 37 15 2 470 302 74 41 181 198 339 195

87 77 89 58 36 32 25 29 66 74 37 11 22 19 48 52 27 20 72 74

M F

788 708

2520 1720

3.2 2.4

1732 1012

40 30

the USA (Wells, 1994; Steenland, 1992). However, because of the difficulty in making appropriate allowance for confounders such as diet, uncertainty remains about how much of the observed association is truly causal. Although the debate about the effects of passive smoking has largely centered on lung cancer in adults, the main public health burden is borne by children with smoking parents. Numerous studies have shown that babies from smoking households are at increased risk for admission to hospital with bronchitis and pneumonia (USEPA, 1992). In later childhood there is strong evidence of impairments in lung function (Strachan, Jarvis, & Feyerabend, 1990; Cook et al., 1993) and of increased risk of middle ear effusion when parents smoke (Strachan, Jarvis, & Feyerabend, 1989).

8.28.3.4 The Health Benefits of Smoking Cessation Stopping smoking benefits health at any age, the more so the younger the smoker stops (US Department of Health and Human Services, 1989). In the British doctors' study, those who gave up by their mid-30s had a life expectancy

indistinguishable from never smokers, and even those who gave up in their late 60s lived significantly longer than continuing smokers (Doll et al., 1994). Benefits have been observed for a variety of conditions. The Lung Health Study, a randomized trial of smoking cessation in people at increased risk of chronic respiratory disease, showed that on stopping smoking the rate of loss of ventilatory capacity reverts from the accelerated rate characteristic of smokers to the slower age-related decline of nonsmokers (Anthonisen et al., 1994; Jarvis, 1995). With lung cancer a somewhat different picture is seen. The extra risk incurred from a smoking career of a given duration is never lost, but remains at the level determined by the duration of smoking at the time of quitting (Halpern, Gillespie, & Warner, 1993). Since that risk would have escalated exponentially with continued smoking, a marked reduction in risk is observed by comparison with persisting smoking. For heart disease the risk in ex-smokers declines toward that of never-smokers, although there is some uncertainty as to how rapidly the excess risk is lost, whether rapidly (Dobson, Alexander, Heller, & Lloyd, 1991; Rosenberg, Kaufman, Helmrish, & Shapiro, 1985) or over many years (Cook, Shaper, Pocock, & Kussick, 1986).

650

Tobacco Smoking

8.28.4 CIGARETTE SMOKING AND NICOTINE DEPENDENCE Drug taking aspects of cigarette smoking were largely ignored until the 1970s, but since then an accumulation of research findings from a variety of disciplines and from both human and animal work has led to a consensus that cigarette smoking is essentially a form of addiction to nicotine. This was enshrined in the landmark 1988 report of the US Surgeon General which concluded that the processes underlying addiction to nicotine are similar to those of other addictive drugs such as alcohol, heroin, and cocaine (US Department of Health and Human Services, 1988). Since then clear evidence has emerged that this view is shared, privately if not publicly, by the tobacco industry, which actually reached it considerably earlier (Slade, Bero, Hanauer, Barnes, & Glantz, 1995). The US Food and Drug Administration has based its assertion of jurisdiction over cigarettes and other tobacco products on the evidence of nicotine's addictive properties and the tobacco industry's exploitation of them (Kessler et al., 1996, 1997). Understanding of nicotine's role is fundamental to an appreciation of smoking uptake, maintenance, and cessation. It does not follow, of course, that cigarette smoking is explicable solely in terms of pharmacological factors. Nicotine effects provide a rich substrate for conditioning and social learning mechanisms, and for broad social, economic, and societal influences. In this respect it is no different from other drug dependencies. The evidence relevant to nicotine's properties as an addictive drug comes from a number of areas (Henningfield & Keenan, 1993; Stolerman & Jarvis, 1995). Some of the main lines are briefly summarized here. (i) Brain neurochemistry. Both animal and human studies have shown that chronic nicotine administration leads to an increase in the expression of specific nicotine receptors on neurons. Even prenatal exposure can produce such nicotine receptor up-regulation (Slotkin, Orband-Miller, & Queen, 1987). Postmortem studies have revealed raised concentrations of nicotine receptors in the brains of human smokers (Benwell, Balfour, & Anderson, 1988). Investigations of dopaminergic systems thought to be important in reward mechanisms have shown effects of nicotine similar to those of cocaine (Pontieri, Tanda, Orzi, & Dichiara, 1996; Pich et al., 1997). (ii) Animal self-administration. Under appropriate schedules of reinforcement nicotine functions as a robust primary reinforcer (Corrigall & Coen, 1989; Spealman & Goldberg, 1982) in a variety of animal species. Early difficulties in

demonstrating nicotine's reinforcing effect seem to have stemmed from the narrow range of rewarding blood concentrations and the ease of provoking aversive overdose. (iii) Pharmacokinetics. Nicotine is readily absorbed through the skin, and through the lining of the mouth and nose, the rate of absorption being enhanced in an alkaline environment and reduced in an acidic environment. Because of the large surface area of the lungs the mildly acidic smoke of cigarettes is absorbed almost immediately and completely on inhalation, giving rise to high concentration arterial nicotine boli which reach the brain in less than 10 seconds (Henningfield, London, & Benowitz, 1990; Russell, 1980). Nicotine has a distributional half-life of about 15 minutes and a terminal half-life in blood of about two hours (Benowitz, 1988). This means that blood levels decline overnight to nonsmoking levels, and regular cigarettes are required over the course of the day to maintain elevated blood nicotine concentrations. (iv) Regulation of blood nicotine intake from different tobacco products and from cigarettes with differing deliveries (titration). Levels of blood nicotine maintained by cigarette smokers and by dependent users of either oral (Holm, Jarvis, Russell, & Feyerabend, 1992) or nasal (Russell, Jarvis, Devitt, & Feyerabend, 1981) snuff are remarkably similar, averaging in each case about 35 ng/ml. Given the very different sensory characteristics of burnt and noncombustible tobacco, the different routes of absorption, and the absence from snuff of components such as tar, this similarity points strongly to nicotine as the factor controlling the behavior. Manufactured cigarettes contain about 10±14 mg of nicotine, an amount that does not vary greatly between different brands. But by techniques such as filtration and ventilation, yields of nicotine when smoked by a machine in a standardized way range from as little as 0.1 mg to over 1 mg, with concomitant tar yields being closely correlated and ranging from 1 to 15 mg or more. The relevance of these machine smoked yields to human smoking is open to serious question (US Department of Health and Human Services, 1996), since smokers extract a similar amount of nicotine (about 1 mg on average) from cigarettes of widely differing yields (Benowitz et al., 1983). Naturalistic studies of smokers smoking their own selfselected brands (Russell, Jarvis, Iyer, & Feyerabend, 1980; Gori & Lynch, 1985) and of smokers experimentally switched to lower yielding brands (Frost et al., 1995; Withey et al., 1992) have both shown that the slope relating machine-smoked yield and nicotine intake is either flat or very shallow, so that smokers can

The Smoking Career and do adjust the way they smoke so as to maintain similar nicotine intakes from cigarettes with widely differing deliveries. Similar upregulation of nicotine intake has been shown when smokers temporarily reduce the number of cigarettes smoked (Ho-Yen, Spence, Moody, & Walker, 1982). This pervasive phenomenon which is characteristic of human smoking is termed nicotine compensation or titration (Russell, 1980). A boundary model of nicotine regulation has been proposed, whereby chronic users seek to avoid the adverse effects of either too little (withdrawal) or too much (overdose) nicotine (Kozlowski, 1984). (v) Acquisition of nicotine inhalation in novice smokers. It is well established that children take up smoking for mainly psychosocial reasons, but studies have shown that pharmacological motives take on importance very early in the smoking career (Lynch & Bonnie, 1994; McNeill, 1991). Already by the time they are smoking on a daily basis, children take in as much nicotine from each cigarette as dependent adult smokers (McNeill, Jarvis, Stapleton, West, & Bryant, 1989), and they report similar craving (Goddard, 1990) and withdrawal symptoms on trying to stop (McNeill, West, Jarvis, Jackson, & Bryant, 1986). The FDA has aptly described nicotine addiction as a ªpediatric disease.º (vi) Compulsive use. Although long-term occasional smokers (so called ªchippersº) are found (Evans et al., 1992; Shiffman, 1989), they are rare, and the typical smoker smokes much the same number of cigarettes each day, averaging about 17 in the UK. Even those with severe smoking-related disease persist in smoking, whether it be heart disease (Bigelow, Rand, Gross, Burling, & Gottlieb, 1986), laryngectomy (Himbury & West, 1985), or lung cancer (Davison & Duffy, 1982). Dependent users of alcohol, heroin, and cocaine rate giving up smoking as at least as difficult as their problem drug (Kozlowski et al., 1989). Compulsive use is the key feature characterizing nicotine dependence. (vii) Nicotine withdrawal syndrome. Cessation of smoking reliably leads to a variety of signs and symptoms, with an onset within 12 hours or less of last tobacco use, and a duration of three weeks or longer. The manifestations are predominantly affective in nature, with subjects reporting irritability, difficulty concentrating, anxiety, restlessness, increased hunger and depressed mood, as well as craving for tobacco. These findings have been observed in numerous experimental studies (Hughes et al., 1984; West, Jarvis, Russell, Carruthers, & Feyerabend, 1984) and have been thoroughly reviewed (Hughes, 1992; Hughes, Gust, Skoog, Keenan, & Fenwick, 1991; Hughes & Hatsukami, 1986). Similar effects are seen after

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cessation of nicotine chewing gum (West & Russell, 1985) or of smokeless tobacco (Hatsukami, Gust, & Keenan, 1987). That the tobacco withdrawal syndrome is due to loss of nicotine rather than behavioral aspects of use is shown by the consistent finding that it is relieved by nicotine replacement but not placebo (Gross & Stitzer, 1989; Jarvis, Raw, Russell, & Feyerabend, 1982; Russell et al., 1993; Sutherland, Russell, Stapleton, Feyerabend, & Ferno, 1992; West et al., 1984). (viii) Efficacy of nicotine replacement as an aid to smoking cessation. Numerous randomized controlled trials have shown that nicotine replacement, whether by patch, gum, nasal spray, or inhaler, reliably enhances the chances of success in an attempt at cessation, roughly doubling success rates over placebo (Fiore et al., 1996; Silagy, Mant, Fowler, & Lodge, 1994). 8.28.5 THE SMOKING CAREER: PATTERNS OF UPTAKE, MAINTENANCE, AND CESSATION OF SMOKING 8.28.5.1 Recruitment of Young People to Cigarette Smoking Uptake of smoking typically occurs in adolescence, with few people starting to smoke after the age of 20 (Kessler, 1995; Kessler et al., 1997). In the UK, from a prevalence of about 1% at age 11, there is a rapid increase over the following few years, so that by age 15 about 25% of teenagers smoke, with some evidence that at this age (although not among young adults of 16 and above) girls are more likely to smoke than boys (Diamond & Goddard, 1995). Rates of smoking in young people have shown no decline since the early 1980s in the UK, and there is evidence that they are currently increasing in the USA (Giovino, Henningfield, Tomar, Escobedo, & Slade, 1995; Glynn, Greenwald, Mills, & Manley, 1993). Initiation of smoking is subject to a number of influences: environmental, behavioral, and personal factors all play a part (Goddard, 1990; Lynch & Bonnie, 1994). Environmental influences include parental smoking (approximately doubling the likelihood of a child starting to smoke), and smoking by siblings and friends. Tobacco advertising and promotions effectively target young people with images of smoking as trendy, sporty, and successful (Altman, Levine, Coeytaux, Slade, & Jaffe, 1996; DiFranza et al., 1991; Pollay et al., 1996; Wills, Pierce, & Evans, 1996). Young people from deprived backgrounds where smoking is the norm are more likely to become smokers, an association which becomes accentuated in adulthood, implying

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that smoking is a marker for social trajectory (Glendinning, Shucksmith, & Hendry, 1994). Cigarette smoking is often an early manifestation of problem behavior. It is linked with poor school performance, truancy, low aspirations for future success, and early school leaving or drop out (Lynch & Bonnie, 1994). Cigarette smoking in adolescents is frequently associated with other problem behaviors, including alcohol and other drug use and other risk taking or rebellious behaviors. Personal characteristics consistently linked with adolescent smoking include low selfesteem, low knowledge of smoking's adverse effects, and anxiety and depression (Breslau, Kilbey, & Andreski, 1993). School-based interventions to reduce the uptake of smoking by teenagers have been extensively studied. Skills based approaches designed to equip children to resist social influences to smoke have shown some initial success, with a number of randomized trials reporting lower rates of recruitment in intervention than control groups (Bruvold, 1993; Flay, 1985). Unfortunately, longer term follow-up has found that these effects dissipate (Flay et al., 1989; Nutbeam, Macaskill, Smith, Simpson, & Catford, 1993), leading researchers to advocate approaches involving the creation of a wider social environment supportive of nonsmoking (Flay, 1985). Both in the USA and the UK, where rates of teenage smoking are on the increase, there is a recognition that preventing the uptake of smoking by young people is an area where up until now little has been achieved. If progress is to be made, it will require a far better research understanding than there is at present of the factors influencing experimental smoking and the development of nicotine dependence.

8.28.5.2 Adult Smoking: Disadvantage and Dependence In developed Western countries rates of cigarette smoking have peaked and are now declining, albeit slowly. In the USA and UK about 25±30% of adults smoke, with little difference in prevalence between men and women, except in the oldest age groups containing a cohort of women for whom never-smoking was the norm. The most striking feature of the evolution of smoking since the late 1970s has been the increasing association of cigarettes with markers of disadvantage, whether it be socioeconomic position, or a range of factors indicating stressful living circumstances (Jarvis, 1994b). High rates of smoking are seen in the unemployed (Lee, Crombie, Smith, & TunstallPedoe, 1991), lone parents (Marsh & McKay,

1994), people who are divorced or separated, the homeless (Gill, Meltzer, Hinds, & Pettigrew, 1996), heavy drinkers (Jarvis, 1994b), drug users (Meltzer, Gill, Pettigrew, & Hinds, 1995), and prisoners (Bridgwood & Malbon, 1995). Cigarette smoking is strongly associated with psychiatric illness, whether it be schizophrenia (DeLeon et al., 1995; Hughes et al., 1991), depressive illness (Glassman, 1993), or a variety of other neurotic disorders (Meltzer et al., 1995). The association of cigarettes with lowered levels of psychological well-being is not confined to those with a formal psychiatric diagnosis, but also extends into the general population of smokers (Anda et al., 1990; Schoenborn & Horm, 1993). In the general population there is an increasingly strong association between cigarette smoking prevalence and indicators of deprivation (Pierce, Fiore, Novotny, Hatziandreu, & Davis, 1989a, 1989b). Between 1973 and 1994, rates of smoking among affluent people halved in the UK, but among the poorest groups prevalence remained unchanged at close to 70% (Bennett, Jarvis, Rowlands, Singleton, & Haselden, 1996; Jarvis, 1997). Cigarette smoking is unusual among drug dependencies in that high levels of dependence are typical of most users, rather than being found only in a minority (Stolerman & Jarvis, 1995). At least 80% of cigarette smokers meet the Diagnostic and statistical manual of mental disorders (4th ed.; DSM-IV) criteria for dependence (Cottler et al., 1995). Smokers' dependence is manifested in a variety of ways, which all point to a pattern of behavior that has become highly stereotyped. The average smoker smokes every day, at a rate of over one cigarette for every waking hour. Survey data indicate that almost one-third of smokers have never stopped for as long as a week (US Department of Health and Human Services, 1990). There is increasing consensus that time to first cigarette of the day is the strongest behavioral indicator of cigarette dependence. Figure 1 shows the distribution of time to first cigarette in a general population sample of smokers, and also the corresponding levels of nicotine intake as indexed by saliva cotinine concentrations. Some 17% of smokers light up within five minutes of waking, and over 50% within half an hour. Overall levels of nicotine intake are closely correlated.

8.28.5.3 Factors Associated with Smoking Cessation At any one time, about two-thirds of cigarette smokers say that they would like to give up, but most lack confidence that they would succeed if

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Figure 1 Distribution of time to first cigarette of the day among smokers surveyed in primary care, and corresponding saliva cotinine concentrations. Time to first cigarette is the strongest available predictor of nicotine dependence.

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they tried (Bennett et al., 1996). Rates of cessation (defined as the proportion of exsmokers among ever-regular cigarette smokers) rise steadily with age, from about 18% in young people in their early 20s to 60% among those aged 60 and above (Bennett et al., 1996). Across all age groups combined less than half of ever smokers in the UK and the USA have quit (Bennett et al., 1996; US Department of Health and Human Services, 1990). Overall, rates of cessation show little difference by gender, with young women significantly more likely to quit than men, and middle-aged women significantly less likely (Jarvis, 1994a). Smoking cessation is influenced by a number of factors, including immediate family circumstances, the broader socioeconomic setting, psychological well-being, and pharmacological dependence (Jarvis, 1997). Influences within the family are shown both by the association of cessation in parents with number of children (Jarvis, 1996) and by the strong concordance in smoking habits among spouses and their partners. Spouse smoking has consistently emerged as one of the most powerful predictors of cessation (Murray, Johnston, Dolce, Wondra Wong, & Ohara, 1995; Nafstad, Botten, & Hagen, 1996; Severson, Andrews, Lichtenstein, Wall, & Zoref, 1995; Wakefield, Gillies, Graham, Madeley, & Symonds, 1993). Poverty has become increasingly associated with low rates of cessation, indicating that those who can least afford to smoke are the least likely to quit (Jarvis, 1997; Marsh & Mackay, 1994). Figure 2 shows rates of cessation by level of deprivation over the past 20 years in the UK. Among both affluent men and women cessation rates have more than doubled, but among the poorest only 10% or less of ever-smokers have quit, and there has been no improvement since the 1970s. Depressive illness (Glassman et al., 1990b) and stressful life circumstances are associated with low rates of cessation, although interestingly there is evidence that successful cessation leads to lower, rather than higher, levels of perceived stress (Cohen & Lichtenstein, 1990). 8.28.5.4 Rates of Spontaneous Cessation in Smokers The concept of ªspontaneousº or unaided quitting is a difficult one. There are a multiplicity of influences, both those that are explicitly recognized by smokers, and others which, while unrecognized, may nevertheless be present and influence behavior. In a US survey of ex-smokers, respondents acknowledged little assistance in giving up smoking (Fiore et al., 1990). Over 90% said that they gave up without any help at all, either from family, physicians, or

more formal services. Only 4% said that they had had any involvement with specialized treatment agencies. One way to estimate rates of successful unaided quitting in the population is to look at the rate at which prevalence declines year by year, or, more specifically, the increase over time in the cessation rate. By this yardstick, there has been an approximate 1.5% increase in cessation each year in the UK since the 1970s. However, given that no information is available on the number of cessation attempts smokers make in any given year (even if it were possible to reach a satisfactory definition of what constitutes a serious attempt at cessation), this cannot easily be translated into what the chances of successfully quitting are from any one attempt. The figure of 1.5% represents the cumulative success rate from all quit attempts made each year, averaged across smokers. If smokers on average make several attempts to quit each year, it implies a success rate per quit attempt of under 1%; alternatively, if serious quit attempts occur at a rate of less than once per year, the implied success rate per quit attempt may be higher. Two studies have explicitly recruited smokers planning to make an unaided attempt at quitting and have followed them up to establish success rates. In the first, only one-third abstained successfully for two days, one-quarter for one week, and at six months 3% remained abstinent (Hughes et al., 1992). Similar findings emerged in the second study, with 4.9% not smoking at six months (Cohen et al., 1989). Since some further relapse to smoking would be anticipated after six months, these percentages give an overestimate of the long-term success rate. There is a reasonable degree of agreement between estimates from population cessation rates and from the studies of self-quitters. Both indicate a low rate of successful long-term quitting from any given quit attempt. It would appear that the chances of successfully quitting on a particular attempt range between about 0.5 and 3%. Such low figures point once again to the difficulty of the task faced by smokers who wish to give up, and suggest that treatments achieving modest success rates of only 5±10% would have a valuable part to play in lowering smoking prevalence, if they could be delivered cost-effectively to the bulk of the smoking population.

8.28.6 PSYCHOLOGICAL SYMPTOMS Although the act of smoking does not in itself cause any discernible mental or functional impairment, this is not to say that there are no negative psychological sequelae. For many

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Smoking cessation by deprivation GHS 1973, 1982, and 1994 (a) 60 Percentage cessation rate

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Deprivation score Figure 2 Trends in rates of smoking cessation by deprivation in (a) men and (b) women in the UK, 1973, 1982, and 1994. Deprivation was measured on a five-point scale, where respondents scored 1 for each of the following: manual occupation; rented housing; no access to a car; crowded accommodation; unemployment. From Jarvis (1997).

individuals there will be concern about current or future illness, the effect of passive smoking on children, and the financial burden. There is also likely to be pressure to abstain from nonsmoking family and friends, and a dislike of being dependent on a drug. However, the clearest psychological impact of smoking arises when an individual tries to stop. Most, but not all, smokers experience some psychological and physical signs and symptoms when they stop smoking or significantly reduce the amount they

smoke. There has been much research both prospectively and retrospectively on the nicotine withdrawal syndrome, most studies using simple self-report questionnaires scored on likert or visual analogue scales. The three most widely reported questionnaires are the Shiffman±Jarvik Smoking Withdrawal Questionnaire (Shiffman & Jarvik, 1976), the Smoker Complaints Scale (Schneider, Jarvik, & Forsythe, 1984), and the Minnesota Nicotine Withdrawal Questionnaire (Hughes & Hatsukami, 1986).

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The most commonly reported subjective nicotine withdrawal symptoms are craving for cigarettes, depressed mood, irritability, restlessness, difficulty concentrating, anxiety/tension, sleep disturbance, and increased appetite, particularly for sweet, high calorific foods. Although the number and intensity varies considerably from person to person, withdrawal symptoms are experienced by about 80% of exsmokers, three-quarters of whom may exhibit a pattern that could be described as severe (Gritz, Carr, & Marcus, 1991). Craving cigarettes, which can be intermittent or more or less continuous, is probably the most troublesome and fundamental symptom and is a major factor in triggering relapse in the first few weeks of an attempt to quit. Self-reports of withdrawal symptoms have been verified by observer ratings (Hughes & Hatsukami, 1986). Withdrawal symptoms occur abruptly on cessation and changes in mood and ability to concentrate can be detected within two hours of the last cigarette. Symptoms peak in the first few days of cessation and, with the exception of craving, hunger, and weight gain which have a longer time course, gradually subside to baseline levels within a few days or weeks, with an average duration of about 3±4 weeks (Snyder, Davis, & Henningfield, 1989; West, Hajek, & Belcher, 1987). Bouts of craving can persist for months, however, and it is not uncommon for ex-smokers to experience a strong urge to smoke in certain situations or mood states associated with prior smoking even some years after givingup. Increased appetite and weight gain continue for at least 10 weeks after quitting and exsmokers typically gain about 6±10 lb in the first year of cessation, though there is great variation from one person to another, with the heaviest smokers tending to gain the most weight. Other physical and objective changes that accompany tobacco withdrawal include decreases in catecholamine excretion, metabolic rate, heart rate (12±15 bpm) (West & Russell, 1987) blood pressure, and tremor, increases in skin temperature, changes in REM sleep, decreases in peak alpha EEG frequency indicating decreased cortical arousal (Knott & Venables, 1977) and gastrointestinal disturbances (Hughes & Hatsukami, 1986). Performance on tasks requiring vigilance or sustained attention and memory is also impaired (Snyder et al., 1989). Many of these subjective and objective withdrawal effects are the opposite of the effects that occur following nicotine use and can be reversed by smoking or giving nicotine by another route (e.g., nicotine gum, skin patch, or injection) but not by a placebo or nicotine-free cigarettes. Severity of withdrawal symptoms have been found to correlate with baseline

smoking nicotine levels and also to predict treatment outcome (West, Hajek, & Belcher, 1989; West & Russell, 1985b). The DSM-IV (American Psychiatric Association, 1994) diagnostic criteria for nicotine withdrawal are shown in Table 4. Of particular interest is the inclusion of depressed mood which had not been listed in DSM-III-R. A number of epidemiological studies have recently focused attention on the relationship between depression and smoking. Glassman et al. (1990a) found that smoking was more prevalent in individuals who had had a major depressive disorder at some time in their lives and also that they were less likely to succeed in quitting smoking than those without such a history. Mood changes, such as anxiety and depression have been shown to predict relapse.

8.28.7 ASSESSMENT Although there are a wide range of assessment procedures which have been, or could be, applied to smoking behavior it is unfortunately the case that while many have face validity they have limited clinical utility. Clinically assessments are most useful when the results can be used to determine, for instance, which of a number of treatments to apply in order to maximize efficacy. This is rarely the case in smoking cessation, however, since much of the information gathered at assessment will at best have prognostic value in predicting a smoker's likelihood of succeeding but will have little to offer in the way of indicating specific procedures to improve the outcome. Empirical research into matching smokers to particular treatments is still in its infancy and has only recently started to highlight some useful leads. The thoroughness and depth of assessment will be determined by the treatment setting. In a specialized smokers clinic offering intensive treatment, for instance, a systematic assessment of individual patient characteristics is feasible and is likely to include measures of the following: (i) motivation, intention, or desire to stop smoking; (ii) demographics and smoking history including number and duration of previous attempts to quit and reasons for relapse; (iii) self-report and objective measures of current tobacco consumption; (iv) severity of nicotine dependence; (v) suitability for nicotine replacement or other pharmacological treatment; (vi) psychosocial factors such as degree of social support, stress, coping skills, and presence of psychiatric comorbidity.

Assessment

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Table 4 DSM-IV diagnostic criteria for nicotine withdrawal. A. Daily use of nicotine for at least several weeks B. Abrupt cessation of nicotine use, or reduction in the amount of nicotine used, followed within 24 hours by four (or more) of the following signs: (1) (2) (3) (4) (5) (6) (7) (8)

dysphoric or depressed mood; insomnia; irritability, frustration, or anger; anxiety; difficulty concentrating; restlessness; decreased heart rate; increased appetite or weight gain

C. The symptoms in criterion B cause clinically significant distress or impairment in social, occupational, or other important areas of functioning D. The symptoms are not due to a general medical condition and are not better accounted for by another mental disorder

Assessments in briefer community interventions and primary care are likely to be considerably less detailed and time consuming and might only include questions about motivation to stop smoking and severity of nicotine dependence since these are the two patient characteristics most likely to influence the course of subsequent treatment and outcome. 8.28.7.1 Assessing Motivation and Intention to Quit There are very few smokers who are able to quit smoking permanently without first being highly motivated and believing that they can do so. Regardless of the method employed to stop smoking, a major factor will be the psychological resources available to an individual when it comes to changing a strongly conditioned behavior and resisting withdrawal symptoms and craving. A number of studies have shown that without strong motivation to quit the likelihood of succeeding is extremely low in all but the most minimally dependent smokers (Jackson, Stapleton, Russell, & Merriman, 1986). In brief intervention studies, motivation to quit has been assessed by simple questionnaire items such as: ªHow much do you want to stop smoking altogether?º (not at all, slightly, moderately, quite strongly, very strongly), and ªWould you give up smoking altogether, if you could do so easily?º (yes definitely, yes probably, possibly, probably not, definitely not). Only those scoring in the highest categories are likely to be sufficiently motivated to persist in a serious quit attempt. The number of previous attempts to stop smoking is also a useful indicator of motivation. The concepts of motivation and intention to change behavior have been extended into a

theoretical model by Prochaska, DiClemente and colleagues (Prochaska & DiClemente, 1986; Prochaska, DiClemente, & Norcross, 1992). Their ªStages of Changeº model is based on recognition of the fact that giving up smoking is a dynamic process, rather than a discrete event, often extending over many years, and characterized by repeated cycles of attempts to stop and relapses back to smoking. The model identifies five main stages through which smokers cycle: (i) Precontemplation. Not seriously thinking about quitting. (ii) Contemplation. Staring to think seriously about stopping within the next 6 months but not within the next 30 days. (iii) Preparation. Intending to quit within the next 30 days. (iv) Action. Stopped smoking within past 6 months. (v) Maintenance. Stopped smoking for over 6 months. Relapse leads to re-entry into the cycle at an earlier stage. Three simple questions have been identified to assess a smoker's current stage (Prochaska & Goldstein, 1991): (i) Are you intending to quit within the next 6 months? If no, the smoker is in the precontemplation stage. (ii) Are you intending to quit smoking in the next month? If no, but answered yes to question (i), they are in the contemplation stage. (iii) Did you try and quit smoking in the past year? If yes, and answered yes to question (ii) they are in the preparation stage. In addition to these stages, Prochaska and DiClemente have identified 10 different positive behavior change processes or activities (e.g., counterconditioning, reinforcement management, stimulus control) which facilitate an

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individual's progression from one stage to the next. They suggest that interventions which encourage the use of the behavior change processes most relevant to a smoker's current stage, will be most effective. So, for instance, precontemplators would be targeted with information about the health risks of smoking and benefits of stopping in the hope of raising their motivation and thus moving them to the contemplator stage, whereas individuals in the action stage might receive training in strategies aimed to prevent relapse. Although there has been some empirical support for the notion of stage-matched interventions, critics have exposed inconsistencies and theoretical problems with the model (Sutton, 1996). Perhaps the most important contribution made by the Stages of Change to date has been to encourage therapists to assist smokers to stop over repeated attempts, rather than using a ªone shotº approach. The model has also focused attention on alternative measures of outcome besides total abstinence, that is, in terms of moving smokers along a stage (see also Chapter 8.01, this volume).

8.28.7.2 Assessing Nicotine Dependence Nicotine dependence is now recognized as a psychoactive substance dependence disorder (DSM-IV, ICD-10). Under the DSM-IV criteria smokers are classified as dependent if they exhibit impaired control and continue to smoke despite awareness that it exacerbates a medical condition, and if they experience withdrawal symptoms when abstaining from smoking, or if they have a history of unsuccessful attempts at quitting. However the practical value of using this all-or-nothing dichotomous classification when assessing an individual smoker is limited since it has been estimated that about 90% of smokers are dependent (Woody, Cottler, & Cacciola, 1993). It is therefore, more useful to view smokers as lying on a continuum of nicotine dependence. When measured in this way dependence has proved to be the strongest and most consistent predictor of the success or failure of an attempt to quit smoking (see Figure 3) such that the likelihood of stopping smoking is several times greater at low, rather than high, levels of dependence (Stapleton et al., 1995). Although this would seem to suggest considerable potential for tailoring cessation treatment according to dependence level in order to maximize overall cessation rates, little progress has been made in this area. There are not as yet any established behavioral treatments based on the differing dependence level of the smoker. One fundamental problem is that cessation rates are modest even among smokers at the lower

end of the dependence range and special attention and effort is only likely to be invested in the more highly dependent smokers when treatment programs are more successful generally. Not surprisingly, given that tobacco dependence is largely a dependence on nicotine, certain forms of nicotine replacement therapy have been shown to be more effective at higher levels of dependence and it is in this area that most progress towards matching treatments is likely to be made in the future (Sutherland & Stapleton, 1994). This does not mean, however, that an assessment of a smoker's level of dependence has no clinical value, since it serves to alert therapists to cases where withdrawal symptoms are likely to be particularly severe and the prognosis poor, indicating that more intensive help may be required.

8.28.7.3 Questionnaire Measures of Dependence Measures of the severity of nicotine dependence fall into two categories: (i) self-reported behavioral and subjective symptoms, and (ii) objective biochemical markers of nicotine intake. The simplest indicator of degree of dependence is daily cigarette consumption which can be obtained by self-report or by self-monitoring diary records over a period of time. Since smokers tend to report consumption in multiples of 5 or 10, self-monitoring diaries tend to be more accurate than self-report, especially if the cigarette is recorded at the time it is smoked, although the monitoring itself can be a reactive measure and result in a decrease in smoking (Frederiksen, Epstein, & Kosevsky, 1975; McFall, 1978). Consumption is only a rough indicator of dependence, however, as smoke intake per cigarette can vary a great deal from one individual to another. The most widely used paper and pencil test of dependence is the FagerstroÈm Tolerance Questionnaire (FTQ), consisting of an eight-item inventory designed to assess: daily nicotine intake, smoking in the morning (when nicotine levels are low); and perceived difficulty in refraining from smoking (FagerstroÈm, 1978). More recently a shorter, six-item, version of the FTQ, the FagerstroÈm Test for Nicotine Dependence (FTND), has been developed to address some of the psychometric weaknesses of the original and has improved internal consistency and predictive validity (Heatherton, Kozlowski, Frecker, & FagerstroÈm, 1991). Scores range from 0 (low dependence) to 10 (high dependence). An even shorter version, the Heaviness of Smoking Inventory, is based on the two items which together account for 60% of the FTND score, namely, daily cigarette consumption, and

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Relation between successful quitting and nicotine dependence as measured by saliva cotinine

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how soon after waking the first cigarette is smoked (Heatherton, Kozlowski, Frecker, Rickert, & Robinson, 1989). Cut-off points have been proposed for the FTND score (e.g., score greater than seven equals ªsevereº dependence) in order to provide a simple classification. Although theoretically there may be some circumstances where such a classification is desirable the rationale for the precise levels of cut-off are weak and all the evidence points to there being a continuum of dependence in the population with no well defined clusters of smokers at the different levels. A further questionnaire measure in use is the Overall Dependence Scale (ODS), a subset of nine items taken from the Horn±Russell Smoking Motivation Questionnaire. The ODS (score 0±27) assesses perceived and experienced difficulty in refraining from or quitting smoking, craving for cigarettes when unable to smoke, and degree of habitual or automatic smoking (West & Russell, 1985b). 8.28.7.4 Biochemical Measures of Dependence In addition to the questionnaire measures, there are now also a number of objective measures which can be used to provide quantitative measures of smoke inhalation and nicotine intake (Jarvis, Tunstall-Pedoe, Feyerabend, Vesey, & Saloojee, 1987). These measures provide a more accurate estimate of the extent of smoking, and hence degree of dependence, than can be gained by knowing simply how many cigarettes an individual smokes. They also have an invaluable role in validating self-reports of abstinence. There are four main biochemical indicators: (i) carbon monoxide in expired air or blood; (ii) cotinine in saliva, blood, or urine; (iii) nicotine in blood; and (iv) thiocyanate (SCN) in saliva, blood, or urine. In clinical settings the most useful and widely applied method is a measure of the concentration of carbon monoxide (CO) in the expired-air of the smoker which correlates highly with blood (plasma) nicotine and with carboxyhaemoglobin (COHb) (Jarvis, Russell, & Saloojee, 1980; Wald, Idle, Boreham, & Bailey, 1981). Obtaining a breath sample and a reading takes less than a minute, requires minimal training of both therapist and patient, and has the advantage over plasma nicotine of being noninvasive. The main disadvantage of this method is the relatively short half-life of COHb (4±5 hours), less in very physically active individuals, which means it is only possible to detect smoking which has occurred over the past few hours. Ideally, testing should be in the afternoon of a normal smoking day by which time CO levels have reached a stable level.

Though rarely a problem in practice, low level exposure to CO from car exhausts and fires, for instance, can produce CO levels in nonsmokers equivalent to those found in very light smokers. Inhaled nicotine from cigarettes is rapidly distributed throughout the body and about 90% is subsequently metabolized to cotinine (Benowitz, Kuyt, Jacob, Jones, & Osman, 1983). As measures of smoke intake, nicotine, and cotinine have the advantage over CO of being highly specific to tobacco users. However, unlike nicotine, cotinine can be measured reliably in saliva which is considerably easier to collect than a blood sample. Cotinine also has the advantage over nicotine in having a longer half-life of 15±20 hours (compared to nicotine's 1±2 hours) which means sampling time is less critical. Cotinine assays can reliably detect regular smokers who typically have levels between 200 and 400 ng/ml, as well as light smokers. Nonsmokers have levels below 10 ng/ml. The drawback of both nicotine and cotinine measures over CO is that they require a laboratory assay which is expensive, time consuming to collect, and cannot provide immediate feedback of results. Very recently a simple ªdipstickº method for assessing total urinary nicotine metabolites has become available (Cope, Nayyar, Holde, Gibbons, & Bunce, 1996). Although it does not produce as accurate a measure as a laboratory assay, it will enable health professionals to assess nicotine dependence quickly and conveniently. Thiocyanate (SCN) has also been used to determine smoke intake and to corroborate patients' self-reports but has a number of drawbacks and in recent years has increasingly been overtaken by cotinine as the marker of choice. Its use stems from the fact that hydrogen cyanide gas is present in high concentrations in tobacco smoke and is metabolized to SCN by the liver. It has a long half-life of between 10 and 14 days which is useful for validating smoking abstinence but in comparison to cotinine its sensitivity and specificity are low and it is affected by naturally occurring SCN in the diet (e.g., almonds, beer, and broccoli) resulting in some overlap between smokers and nonsmokers. The questionnaire measures of dependence correlate moderately with the biochemical markers of intake (West & Russell, 1985), and with severity of withdrawal symptoms, but no single measure has been shown to be consistently superior to the others in predicting the success of a quit attempt. The choice of which measure to use will depend on both the purpose for which the measure is taken and the setting. For instance, the paper-and-pencil measures have the advantage of low cost and simplicity

Treatment Approaches whereas salivary cotinine provides the most stable measure of the actual nicotine intake from cigarettes. 8.28.8 TREATMENT APPROACHES There are four main approaches for reducing the health consequences of tobacco smoking: (i) treatment interventions aimed at encouraging and assisting adult smokers to stop; (ii) preventive interventions to reduce the uptake of smoking by children; (iii) modifications to cigarettes to make smoking less harmful; and (iv) fiscal measures, legislation, and restrictions on smoking in public places designed to reduce active smoking as well as nonsmokers' exposure to environmental tobacco smoke. This chapter will focus primarily on treatment approaches. 8.28.8.1 Behavioral and Public Health Approaches Since the 1950s a wide variety of interventions, both pharmacological and behavioral, have been developed to help smokers stop, although the efficacy of many of these approaches has not been adequately evaluated in controlled clinical trials. This has been the case particularly with behavioral treatments, where inadequate statistical power through insufficient sample sizes has been a particular problem. Other methodological limitations include: very short-term or unspecified length of follow-up; absence of biochemical validation of abstinence; lack of a control group; and failure to present outcome on a strict ªintent to treatº basis whereby nonattenders are classified as smokers. As a result there is little evidence that one behavioral technique is more effective than any other (Lichtenstein & Glasgow, 1992), although there is consensus that multiple component programs tend to be the most successful (Schwartz, 1987). Little attention has been paid to teasing out the specific therapeutic ingredients of the multimodal psychological packages which have been used with smokers. A broad array of behavioral/ psychological/cognitive techniques have been tried either individually or in combination, in many settings, from brief self-help programs to inpatient treatment units (Hurt et al., 1992). The interventions have included: rapid smoking and other aversion therapies; smoke dilution; nicotine fading; self-management approaches; for example, contingency contracting and stimulus control, skills training, relapse prevention, cognitive, motivational, and educational interventions, cue exposure, hypnosis and individual or group counselling (Hajek, 1996).

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In the 1950s the field was dominated by educational approaches, followed in the 1960s by conditioning procedures such as rapid smoking and satiation. The 1970s saw the introduction of intensive multicomponent cognitive self-management approaches which have promising success rates but are severely limited by the fact that most smokers will not attend formal clinic programs (Lichtenstein, 1992). This factor, together with a recognition of the sheer scale of the problem (approximately 12 million smokers in the UK), prompted a move away from these intensive clinical approaches towards a broader community wide public health perspective involving self-help and advice in a wide variety of settings from health care to the workplace. The current consensus is that a stepped-care treatment model is likely to be the most cost-effective approach in smoking cessation. Similar models have been advocated for other preventive medical interventions. Stepped-care involves initially offering the least intensive and least costly approaches to the greatest number of smokers, and saving the intensive and expensive second-line approaches for those who fail to respond. Though the absolute success rates of the brief interventions are lower they tend to be more cost effective as they have the potential to reach a far greater number of smokers. Typical one year success rates range from about 5% for brief advice in primary care to 10% when NRT is added, and up to 20±30% for specialized smokers clinics offering intensive multisession behavioral approaches combined with NRT. Recently, after an extensive literature review, the US Agency for Health Care Policy and Research (AHCPR) published their influential guidelines on smoking cessation (Fiore, Bailey, et al., 1996). This targets three main audiences: primary care clinicians; smoking cessation specialists; and health care administrators. The strategies they recommend for those working in primary care, or for whom smoking cessation is just one of their many clinical activities, are shown in Table 5. As part of the assistance offered, the guidelines advise clinicians to provide basic information on the nature and time course of withdrawal and the addictiveness of smoking, for example, that any smoking increases the likelihood of full relapse. Smokers should be helped to develop problemsolving and coping skills by identifying events, mood states and activities which increase the risk of relapse, and identifying and practising skills intended to cope with these high-risk situations. The AHCPR guidelines for smoking cessation specialists overlap with those for health professionals in primary care but involve collecting more information at assessment on

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Tobacco Smoking Table 5 Recommendations for smoking intervention from AHCPR Clinical Practice Guidelines. Action

Strategies for implementation

ASK about smoking status at every visit and document

Include in vital signs, use stickers on patients notes, or implement computerized reminder system

ADVISE all smokers to quit, in a clear, strong, and personalized manner

for example, ªQuitting smoking is the most important thing you can do to protect your healthº Tie smoking to current illness or impact on children and family

IDENTIFY smokers willing to make a quit attempt at this time

If willingÐprovide assistance (see below). If patient prefers more intensive help or if it is indicated, refer to specialist. If unwillingÐprovide motivational intervention

A. ASSIST smoker with a quit plan

Set a quit date Help prepare smoker for quitting: inform family and friends; prepare the environment (discard cigarettes); review previous quit attempts; anticipate challenges

B. NICOTINE REPLACEMENT (NRT)

Encourage use of NRT unless contraindicated

C. GIVE KEY ADVICE

Total abstinence: ªNot a single puff º Avoid alcohol Other smokers in household: consider quitting with others or make specific plans for maintaining abstinence among smokers

D. PROVIDE SUPPLEMENTARY MATERIALS

Booklets, etc., culturally, educationally, and age appropriate for the smoker.

ARRANGE follow-up in person or by telephone

First follow-up within 1 week of quit date, second within a month At follow-up, congratulate success, or use lapses for constructive learning, elicit recommitment to total abstinence, identify problems, anticipate challenges, assess use of NRT

Adapted from AHCPR Smoking Cessation Guideline. Source: Fiore, Bailey et al. (1996).

stress and psychiatric comorbidity, for instance, as these variables are known to negatively affect outcome. As there is a strong relationship between the intensity of counseling or contact with the patient and treatment success, the recommendation is for treatment programs, whether group or individual, to span a period of at least two weeks, though preferably more than eight weeks. This factor appears more important than the specific behavioral techniques employed. The optimal number of sessions is 4±7, with each session lasting for 20±30 minutes. Training in relapse prevention, thought by many in the addictions field to be critical to long-term success, has not been shown to be

cost-effective in smoking cessation. This has led some to conclude that it is more beneficial to encourage relapsers to wait and have another attempt at a later time rather than offering timeconsuming training in relapse prevention (Lichtenstein & Glasgow, 1992). The AHCPR guidelines for health care administrators and purchasers focus on the importance of developing supportive systems within the clinical setting to facilitate systematic and repeated interventions with smokers. To achieve this, environmental prompts (e.g., computerized systems) to remind staff to ask about smoking are likely to be required, in addition to policy changes to include smoking

Treatment Approaches assessment and cessation in the performance expectations of clinicians. The basic thrust of the recommendations is to greatly increase the number of clinicians who intervene with patients who smoke and to ensure that clinicians accept smoking cessation as a vital part of their role in health care provision. In addition to brief physician-delivered and intensive multicomponent behavioral smoking interventions, workplace programs have also been investigated. These provide the opportunity to reach a large number of smokers, in a convenient location and may therefore be more acceptable to smokers than attending specialist clinics. A meta-analysis of 20 controlled workplace studies concluded that smokers were 58% more likely to quit in the intervention condition than in the control group (Fisher, Glasgow, & Terborg, 1990). 8.28.8.2 Pharmacological Approaches to Smoking Cessation 8.28.8.2.1 Nicotine replacement therapy A number of nicotine and non-nicotine pharmacological aids to smoking cessation have been investigated. By far the most well researched is nicotine replacement therapy (NRT) which was designed to be used in conjunction with a behavioral program, however brief. The rationale for nicotine replacement is to temporarily provide smokers with a safer, more slowly delivered and lower dose of nicotine via a different route, to reduce the severity of the withdrawal symptoms and desire to smoke. The process of quitting is effectively broken down into two-stages. Initially the patient gives up the behavioral act of smoking (i.e., it is decoupled from the rewarding effects of nicotine) while starting unlearning the many nondrug elements of the habit and developing strategies to cope without cigarettes. Once the ex-smoker has gained confidence in their ability to stay off cigarettes they are weaned off nicotine completely, usually over a period of 3±4 months. NRT is the most rigorously and thoroughly evaluated treatment for smokers, and though success rates are modest, varying according to the setting and psychological support with which it is combined, it marked a breakthrough in smoking cessation. There are currently four different forms of NRT which have been approved for clinical use on prescription or are available over-the-counter (OTC), although not all have yet been licensed in every country. One very important difference between NRT products and inhaled tobacco smoke is the speed with which nicotine is absorbed. None can mimic the extremely rapid, high but transient nicotine peaks in arterial

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blood which characterize inhalation, so they do not provide the same positive satisfaction as smoking and therefore have less potential for sustaining dependence. (i) Nicotine gum The first formulation to be developed and thus the most extensively researched was nicotine gum, which is available in two strengths (2 or 4 mg per piece). Nicotine from the gum is absorbed slowly through the lining of the mouth (buccal mucosa) and blood levels reach a flat peak after about 30 minutes chewing. Typically, smokers obtain blood nicotine levels around 10±15 ng/mg, about one-third of usual smoking levels, when using the 2 mg gum ad libitum (West et al., 1984) and about two-thirds smoking levels with the 4 mg gum (FagerstroÈm, 1988). At these levels, adverse mood effects and difficulty concentrating associated with withdrawal are partially relieved, though craving for cigarettes is not reliably decreased. This is probably because satisfaction from nicotine depends at least in part on a rapid boost in nicotine levels. If absorption rate is crucial nothing is gained by using more gum. This may explain why in routine clinical use smokers tend to chew only seven to eight pieces per day rather than the recommended 12±15 pieces (Russell, 1988). Despite relatively modest effects on withdrawal, the efficacy of the gum in smoking cessation is well established. Nearly 50 randomized controlled trials have now been conducted, and a recent metal-analysis concluded that the gum was more effective than placebo (odds ratio 1.6), regardless of the setting (Silagy et al., 1994). Although the gum undoubtedly marked a breakthrough in the treatment of smokers, success rates have nevertheless been disappointing and it has a number of other limitations. It is contraindicated in patients with peptic ulcers and poses problems for denture wearers, tastes unpleasant and gives rise to a number of minor side effects and requires some effort and perseverance in order to learn the correct chewing technique. (ii) Nicotine patches The patch has the advantage over gum of providing therapeutic levels of nicotine from the first day of treatment with minimal effort and instruction. They are available in three doses (sizes) and most smokers start on the highest dose for 4±8 weeks, followed by a systematic weaning period of 2±8 weeks using progressively smaller size patches. Two different types are available; one worn during waking hours only, with the highest dose patch delivering 15 mg nicotine over 16 hours, and the other worn

664

Tobacco Smoking

throughout the day and night delivering 21 mg over 24 hours. Both appear to be equally effective (Fiore, Smith, Jorenby, & Baker, 1994). After applying a patch, venous blood nicotine levels build up slowly over several hours to a plateau of around 10±20 ng/ml, roughly equivalent to 50% of mean plasma nicotine levels produced by smoking. Levels remain reasonably constant for much of the waking day before declining during the evening. Since nicotine absorption is very slow, patch users are unlikely to experience any of the positive subjective effects associated with rapidly administered nicotine which suggests they may be more helpful to individuals who smoke to relieve or avoid withdrawal (negative reinforcement) than to smokers seeking positive reinforcement. Other potentially important differences between the patch and the other forms of NRT include the fact that the patch does not allow patients to self-titrate their dose according to need, and does not provide a behavioral or sensory component to substitute for lighting-up. However, these factors together with the lack of positive effects suggest the dependence potential and abuse liability of the patch will be very low, which is supported by clinical experience. The most common side effect is mild skin irritation but only about 5% of patients have to stop treatment as a result of adverse effects (Hughes & Glaser, 1993). Numerous controlled trials of the patch in a variety of settings and populations have demonstrated its efficacy with the highest absolute success rates (20±25% at 6 month follow-up) tending to occur when the patch is combined with an intensive behavioral treatment program. The broad consensus from several reviews and meta-analyses is that compared to a placebo, the nicotine patch increases success rates two to threefold irrespective of the intensity of the adjunctive behavioral treatment (Fiore et al., 1994; Silagy et al., 1994). It reduces the severity of withdrawal, and perhaps surprisingly, appears to reduce craving for cigarettes more consistently than the nicotine gum, but its main advantage over the latter is undoubtably the improved patient compliance. (iii) Nicotine nasal spray The development of nicotine nasal spray (NNS) stemmed from work showing the rapid rate of nicotine absorption from nasal snuff (Russell et al., 1981). Nicotine taken intranasally is very swiftly absorbed into the systemic circulation and peak venous levels are reached within 5±10 minutes of taking a dose of NNS, which is considerably faster than with the patch or gum (Sutherland et al., 1992), although not as

rapid as inhaled cigarette smoke. Unlike smoking however, NNS does not deliver arterial bolus doses of nicotine, although the rate of nicotine absorption is sufficiently rapid to produce the positive stimulant subjective effects (often described as a ªbuzzº) which many smokers experience while smoking their first cigarette of the day. Such effects are usually considered rewarding and satisfying by smokers and are not produced when nicotine is absorbed more slowly. The spray delivers 1 mg of nicotine per dose (0.5 mg to each nostril), and with repeated dosing has the potential to provide blood nicotine levels similar to those obtained while smoking, although results from clinical trials indicate smokers attain levels only about 30±50% of baseline smoking levels when using ad libitum. The efficacy of NNS has been demonstrated in three randomized placebo-controlled trials in which it was combined with behavioral support and produced remarkably similar success rates at one year, averaging 26% vs. 11% for placebo. (Hjalmarson, Franzon, Westin, & Wiklund, 1994; Schneider et al., 1995; Sutherland et al., 1992). As with other forms of NRT, NNS reduces the severity of the affective symptoms of withdrawal compared to placebo, but also has the advantage of substantially relieving craving for cigarettes. At times of acute craving not only can the user obtain pharmacological relief in minutes but there is also a behavioral response (i.e., spraying) with a marked sensory impact. However, perhaps the most significant finding, both from a clinical and theoretical point of view, is that the spray appears to be of greatest benefit to the most highly dependent smokers, in contrast to findings with the patch (see Figure 4) which is equally effective across the full range of dependence. Studies are currently underway to determine whether these initial but promising findings will be replicated when the spray is used with less intensive adjunctive treatment, such as in general practice. It takes a few days to learn the correct spraying technique and to acclimatize to the initial irritant side effects (to nose/ throat), which may pose problems in settings where less time is available to support and encourage new users. Another issue concerns the greater dependence potential of the spray compared to the slower-acting nicotine delivery systems (Hughes, 1988). In the two smoking cessation studies which allowed the spray to be used for up to a year, 43% and 29% of those who succeeded in stopping smoking used it for this time, representing approximately 12% of all those originally assigned active spray. This figure is somewhat higher than for the gum. However,

665

Treatment Approaches

Relation between baseline nicotine levels and abstinence at three months 0.7 Bars give 90% Cls

0.6

Probability of abstinence

0.5

Active

0.4

0.3

0.2

0.1

Placebo 0.0 5

15

25

35

45

55

65

75

Baseline smoking nicotine (ng/ml) Figure 4 Relationship between nicotine dependence (indexed by plasma nicotine concentration from smoking) and the probability of successfully quitting on active or placebo nasal nicotine spray. Treatment with active spray is especially helpful at high levels of dependence. From Sutherland et al. (1992).

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Tobacco Smoking

the fact that the spray was provided free of charge is likely to have encouraged longer term and higher usage since cost has been shown to influence these parameters for nicotine gum (Hughes, Wadland, Fenwick, Lewis, & Bickel, 1991). Not surprisingly, the long-term users had higher pretreatment nicotine levels (more dependent) than those who stopped the spray earlier on. (iv) Nicotine inhaler The inhaler, the newest form of NRT, is an oral puffing device that consists of a hollow plastic mouthpiece, roughly the size of a cigarette, which contains a nicotine impregnated porous plug. It evolved from an earlier smoke-free product called Favor1, which in preliminary studies was shown to have some therapeutic potential (Hajek, Jarvis, Belcher, Sutherland, & Feyerabend, 1989; Russell, Jarvis, Sutherland, & Feyerabend, 1987). Despite its name, absorption of nicotine vapor from the inhaler is not very rapid and does not give an arterial peak, since most of it is deposited in the mouth and upper airways rather than the lungs. The pharmacokinetic profile resembles the gum rather than cigarettes (Bergstrom, Nordberg, Lunell, Antoni, & Langstrom, 1995). Per puff, the nicotine delivered by the inhaler is about one-tenth of that from a cigarette and is both temperature and effort related, but even with very frequent and intensive puffing, the levels achieved are modest. However, the regular hand±mouth activity involved offers more habit replacement than other forms of NRT and it provides sensory characteristics that resemble smoking, which may have a role in alleviating cigarette cravings (Rose, Behm, & Levin, 1993). The results of two randomized controlled trials of the inhaler have been published and report one year success rates of 15% active inhaler vs. 5% placebo, and 13% vs. 8%, respectively (Schneider et al., 1996b; Tùnnesen, Nùrregaard, Mikkelsen, Jùrgensen, & Nilsson, 1993). Research is being undertaken to see whether combining different types of NRT is more effective than using each individually and whether tailoring NRT to achieve 100% replacement (i.e., up to smoking levels) is warranted. Preliminary reports indicate that higher nicotine replacement is associated with better withdrawal relief and higher short- and long-term success rates (Dale et al., 1995; FagerstroÈm, Schneider, & Lunell, 1993; Kornitzer, Boutsen, Dramaix, Thijs, & Gustavsson, 1995). From a theoretical point of view, the best combinations are likely to involve the patch,

which provides a steady background level of nicotine, supplemented by one of the other faster-acting delivery systems which enable the patient to self-titrate dose as needed and provide an alternative coping response. Despite the vast literature on NRT many questions remain to be answered, such as the optimal duration of treatment and dosage, how it should be discontinued (abruptly or gradually), and with which psychological treatment it should be combined for maximum efficacy. What does seem clear at the present time is that NRT combined with supportive treatment, however brief, produces higher success rates than NRT or behavioral treatment alone. This might be because the two treatments affect different aspects of nicotine dependence, for example, NRT reduces withdrawal discomfort and behavioral treatment enhances coping skills (Hughes, 1995) or because each treatment increases adherence to the other (Klesges, Ward, & Debon, 1996). 8.28.8.2.2 Non-nicotine pharmacotherapy A variety of non-nicotine pharmacological treatments or agents have also been examined including lobeline (Schneider, Mione, Raheman, Phillips, & Quiring, 1996a), naltrexone (Sutherland, Stapleton, Russell, Feyerabend, 1995), antidepressants (Berlin et al., 1995; Edwards, Murphy, Downs, Ackerman, & Rosenthal, 1989), mecamylamine (Rose et al., 1994), glucose (West, Hajek, & Burrows, 1990), the antihypertensive clonidine (Covey & Glassman, 1991; Gourlay, Stead, & Benowitz, 1997), buspirone (Cinciripini et al., 1995; Hilleman, Mohiuddin, Core, & Sketch, 1992; Schneider et al., 1996c; West, Hajek, & McNeill, 1991), anorectics (Spring et al., 1995), citric acid inhaler (Behm et al., 1993; Rose & Hickman, 1987), black pepper vapor inhaler (Rose & Behm, 1994), benzodiazepines, beta-blockers, anticholinergics, stimulants, ACTH, silver acetate, and sodium bicarbonate (Hughes, 1993). Although some show promise, most have not been found to be effective, to have unacceptable side effects, or have not yet been evaluated thoroughly enough with adequate sample sizes to recommend their use at present. The only exception to this concerns the antidepressant, bupropion, which was approved for use in smoking cessation by the US Food and Drug Administration in 1997, though it has not yet been licensed in the UK. Bupropion (Zyban1) is an aminoketone antidepressant which is thought to act primarily via a noradrenergic mechanism but which also has some dopaminergic activity. Anecdotal reports of depressed patients quitting smoking spontaneously while

Approaches to Reduce Smoking-related Disability taking bupropion, its generally favorable side effect profile, and its low dependence potential, stimulated interest in the drug for smoking cessation. Although the results of the controlled clinical trials have not yet been published the data are convincing and provided that it is licensed more widely, bupropion could, like NRT, make a significant contribution to future cessation rates.

8.28.9 APPROACHES TO REDUCE SMOKING-RELATED DISABILITY Although in developed countries studies consistently show the majority of smokers are aware that smoking carries significant health risks, albeit grossly underestimating the real risks to their own health, reducing smoking prevalence has been a slow and hard fought process. Despite their best efforts a number of smokers cannot manage to give up and some others simply do not want to stop, and unlike other drug dependencies smokers do not seem to ªmatureº out of it. Until more effective interventions have been developed there is a strong case for exploring approaches designed to make smoking less dangerous. One way of achieving this is by modifying the constituents or design of cigarettes to reduce their toxicity. Such strategies are akin to those adopted in the drug dependence field under the umbrella of ªharm minimization.º This is an area that has highlighted a number of ethical issues in addition to having political implications, and which has divided opinion among researchers in the smoking cessation field. In 1973 the Independent Scientific Committee on Smoking and Health (ISCSH) was established in the UK to formulate national policies on smoking and health. The main thrust of the program has concerned product modification. Initially the Committee were involved in a radical move examining the potential advantages of substituting tobacco in cigarettes with a less toxic synthetic substance based on modified cellulose. Although 11 new cigarette brands based on substitute tobacco (New Smoking Material and Cytrel) were launched in the UK in 1977 they were not adequately acceptable to smokers and were soon withdrawn from sale. Following this disappointing outcome the ISCSH turned its attention instead to the gradual reduction of tar yields of cigarettes which has been a far more successful strategy. Since 1972 the sales-weighted average tar yield of cigarettes has declined from 20.8 mg to around 11.0 mg per cigarette. This reduction has been achieved by improving cigarette filters, introducing ventilation holes, and increasing

667

the porosity of the paper in order to dilute the smoke, as well as through changes to the tobacco itself. Determination of the yields of cigarettes are made using smoking machines using internationally agreed puff parameters (volume of smoke in puff, frequency of puffing, etc.). Since tar and nicotine yields are highly correlated (about 0.9) reductions in tar have also been accompanied by reductions in nicotine. Unfortunately when smokers switch to cigarettes which have lower nicotine levels, they tend to alter, often unconsciously, the way in which they smoke in an attempt to maintain adequate levels of nicotine. They may for instance take more puffs, hold the smoke in their lungs for longer, take larger puffs, smoke to a shorter butt length, or even hold the cigarette in a way that causes the ventilation holes to be covered. This ªcompensatoryº smoking behavior, or upregulation of smoking, has meant that the percentage reduction in tar intake that would be expected when smokers transfer from a medium or high tar cigarette to a low tar brand is not as great as predicted by the smoking machine figures. Mainly as a result of the lower nicotine levels, low-tar cigarettes tend to be less acceptable to smokers which explains why, despite the health advantages and the selective advertising encouraging smokers to switch, such brands still only account for 30% of the market (Bennett et al., 1996). Since some of the health advantage of switching to lower-tar cigarettes may be offset by the tendency to compensate by increasing inhalation, and since consumer acceptability is limited, there have been recommendations for the development of low-tar cigarettes with slightly enhanced nicotine yields (up to 1 mg). Although the case for slightly higher nicotine cigarettes is compelling, one must not underestimate the significance of the reductions in the tar intake per cigarette over the last 25 years which have contributed to a decline in mortality from lung cancer (Peto, 1986) and also been beneficial in chronic obstructive lung disease (Darby, Doll, & Stratton, 1989). No matter how intensively modern cigarettes are smoked it is virtually impossible to obtain tar levels as high as those delivered by the old high-tar brands. The flip-side of this strategy, and one which is far more radical, is the approach being considered in the USA linked to the unprecedented proposed settlement with the tobacco industry. In addition to the financial penalties and other controls being imposed on tobacco companies, the settlement stipulates that the FDA will in future have the power to regulate nicotine as a drug and gives them authority to remove it from cigarettes in 12 years, subject to a number of provisions such as showing that this

668

Tobacco Smoking

would not lead to a significant demand for black market cigarettes. The thinking behind this plan is that nicotine yields in cigarettes could be lowered slowly over a number of years until the maximum level a smoker could obtain from cigarettes would be insufficient to create or sustain nicotine dependence (Benowitz & Henningfield, 1994; Kessler et al., 1996, 1997; Kozlowski & Henningfield, 1995; Slade, 1995). In future children might still experiment with cigarettes but could not get a large enough dose of nicotine to become pharmacologically dependent and so would be unlikely to progress to regular daily smoking. Although intuitively appealing and plausible, a number of critical questions remain unanswered. What will happen to existing smokers? It would be reasonable to expect them to smoke more aggressively in an attempt to obtain more nicotine and maintain satisfaction, and in the process become exposed to greater amounts of the more dangerous components (CO and tar) than would otherwise have been the case. What is the critical threshold for creating dependence and what role does tolerance play? By reducing nicotine yields very slowly over several years, might neuronal readaptation and sensitization occur so that current smokers remain dependent albeit on lower nicotine levels? Another innovative but highly controversial approach to safer smoking has come from tobacco companies themselves. In 1987 the R. J. Reynolds Tobacco Company spent $1 billion developing and market-testing a novel virtually tar free cigarette-like device (brand name Premier) which heated rather than burned tobacco (R. J. Reynolds Tobacco Co., 1988). The smoke particles in which the nicotine was transported were comprised mainly of glycerol and water rather than tar. Glycerol is harmless and metabolized as a source of energy and was added simply to produce ªsmoke.º The yields of all major carcinogens and many other potentially harmful components were far lower than those of conventional cigarettes and the biological activity of its condensate was greatly reduced. The tar yield was about 0.7 mg per cigarette and the nicotine and carbon monoxide yields about 0.3 and 12.0 mg, respectively. It was estimated that the risks of tobacco-related cancers and chronic obstructive lung disease would be substantially reduced, possibly by as much as 90%, for an average smoker switching from a regular brand to Premier (Sutherland, Russell, Stapleton, & Feyerabend, 1993). Premier was never marketed, however, due to lack of acceptability (especially poor taste), and strong protests from public health organizations in the USA who petitioned the FDA to classify and therefore regulate Premier as a drug as

opposed to a cigarette. In the last year R. J. Reynolds have launched another new smokefree cigarette called Eclipse which like its predecessor, is virtually tar free but which is claimed to have a more acceptable taste. It is likely that in the USA this product will receive near unanimous opposition once again on the grounds that it might encourage smokers who would otherwise stop to switch to the new ªsafeº cigarette instead, and that it may encourage children to take up smoking. 8.28.10 PROSPECTS FOR THE FUTURE Like all drug dependencies, cigarette smoking is a multifaceted problem, whose understanding requires attention to a range of factors, from drug pharmacokinetics and pharmacodynamics, genetics, individuals and their social milieu, to broader economic and political influences. No single policy response can hope to address the range of issues which determine smoking uptake, maintenance, and cessation. Future progress will depend on developing a better understanding of the processes operating at each stage of the smoking career, and clinical psychology will continue to have an important contribution to make in furthering understanding of individual liability to dependence, the process of recruitment, the role of nicotine in maintaining the habit, and in developing and disseminating effective cessation interventions. If there is one lesson which can be taken from the past, it is that future progress is likely to be equally slow and hard won. 8.28.11 REFERENCES Altman, D. G., Levine, D. W., Coeytaux, R., Slade, J., & Jaffe, R. (1996). Tobacco promotion and susceptibility to tobacco use among adolescents aged 12 through 17 years in a nationally representative sample. American Journal of Public Health, 86(11), 1590±1593. American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author. Anda, R. F., Williamson, D. F., Escobedo, L. G., Mast, E. E., Giovino, G. A., & Remington, P. L. (1990). Depression and the dynamics of smoking: A national perspective. Journal of the American Medical Association 264(12), 1541±1545. Anthonisen, N. R., Connett, J. E., Kiley, J. P., Altose, M. D., Bailey, W. C., Buist, A. S., Conway W., Jr., Enright, P. L., Kanner, R. E., Ohara, P., Owens, G. R., Scanlon, P. D., Tashkin, D. P., & Wise, R. A. (1994). Effects of smoking intervention and the use of an inhaled anticholinergic bronchodilator on the rate of decline of FEV 1: The lung health study. Journal of the American Medical Association 272(19), 1497±1505. Behm, F. M., Schur, C., Levin, E. D., Tashkin, D. P., & Rose, J. E. (1993). Clinical evaluation of a citric acid inhaler for smoking cessation. Drug & Alcohol Dependence, 31(2), 131±138. Bennett, N., Jarvis, L., Rowlands, O., Singleton, N., &

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smoking cessation program: Who follows through? Journal of Family Practice, 34(6), 739±744. Lynch, B. S., & Bonnie, R. J. (Eds.) (1994). Growing up tobacco free: Preventing nicotine addiction in children and youths. Washington, DC: National Academy Press. Marsh, A., & McKay, S. (1994). Poor smokers. London: Policy Studies Institute. McFall, R. M. (1978). Smoking cessation research. Journal of Consulting & Clinical Psychology, 46(4), 703±712. McNeill, A. D. (1991). The development of dependence on smoking in children. British Journal of Addiction, 86(5), 589±592. McNeill, A. D., Jarvis, M. J., Stapleton, J. A., West, R. J., & Bryant, A. (1989). Nicotine intake in young smokers: Longitudinal study of saliva cotinine concentrations. American Journal of Public Health, 79(2), 172±175. McNeill, A. D., West, R. J., Jarvis, M., Jackson, P., & Bryant, A. (1986). Cigarette withdrawal symptoms in adolescent smokers. Psychopharmacology, 90(4), 533±536. Meltzer, H., Gill, B., Pettigrew, M., & Hinds, K. (1995). The prevalence of psychiatric morbidity among adults living in private households (Vol. Report 1). London: HMSO. Murray, R. P., Johnston, J. J., Dolce, J. J., Lee, W. W., & Ohara, P. (1995). Social support for smoking cessation and abstinence: The Lung Health Study. Addictive Behaviors, 20(2), 159±170. Nafstad, P., Botten, G., & Hagen, J. (1996). Partner's smoking: A major determinant for changes in women's smoking behavior during and after pregnancy. Public Health, 110, 379±385. Nutbeam, D., Macaskill, P., Smith, C., Simpson, J. M., & Catford, J. (1993). Evaluation of two school smoking education programs under normal classroom conditions. British Medical Journal, 306(6870), 102±107. Peto, R. (1986). Overview of cancer time-trend studies in relation to changes in cigarette manufacture. In D. G. Zaridze, & R. Peto (Eds.), Tobacco: A major international health hazard (IARC Scientific Publications No. 74, pp. 211±226). Lyon, France: IARC. Peto, R., Lopez, A. D., Boreham, J., Thun, M., & Heath, C. (1994). Mortality from smoking in developed countries 1950±2000: Indirect estimates from national vital statistics. Oxford, UK: Oxford University Press. Peto, R., Lopez, A. D., Boreham, J., Thun, M., Heath, C., & Doll, R. (1996). Mortality from smoking worldwide. British Medical Bulletin, 52(1), 12±21. Phillips, A. N., & Smith, G. D. (1994). Cigarette smoking as a potential cause of cervical cancer: Has confounding been controlled? International Journal of Epidemiology, 23(1), 42±49. Pich, E. M., Pagliusi, S. R., Tessari, M., Talabot-Ayer, D., Hooft van Huisduijnen, R., & Chiamulera, C. (1997). Common neural substrates for the addictive properties of nicotine and cocaine. Science, 275(5296), 83±86. Pierce, J. P., Fiore, M. C., Novotny, T. E., Hatziandreu, E. J., & Davis, R. M. (1989a). Trends in cigarette smoking in the United States. Educational differences are increasing. Journal of the American Medical Association, 261(1), 56±60. Pierce, J. P., Fiore, M. C., Novotny, T. E., Hatziandreu, E. J., & Davis, R. M. (1989b). Trends in cigarette smoking in the United States. Projections to the year 2000. Journal of the American Medical Association, 261(1), 61±65. Pollay, R. W., Siddarth, S., Siegel, M., Haddix, A., Merritt, R. K., Giovino, G. A., & Eriksen, M. P. (1996). The last strawÐcigarette advertising and realized market shares among youths and adults, 1979±1993. Journal of Marketing, 60(2), 1±16. Pontieri, F. E., Tanda, G., Orzi, F., & Dichiara, G. (1996). Effects of nicotine on the nucleus accumbens and

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Copyright © 1998 Elsevier Science Ltd. All rights reserved.

8.29 Health Promotion: Perspectives on Physical Activity and Weight Control NEVILLE OWEN and DAVID CRAWFORD Deakin University, Melbourne, Vic, Australia 8.29.1 INTRODUCTION

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8.29.1.1 Health Promotion 8.29.2 INDIVIDUAL VS. PUBLIC HEALTH APPROACHES IN HEALTH PROMOTION

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8.29.3 PHYSICAL ACTIVITY AS A PUBLIC HEALTH CONCERN

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8.29.4 WEIGHT CONTROL AS A PUBLIC HEALTH CONCERN

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8.29.5 BEHAVIORAL EPIDEMIOLOGY

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8.29.5.1 8.29.5.2 8.29.5.3 8.29.5.4

The Descriptive Epidemiology of Physical Activity Environmental and Public Policy Approaches: Physical Activity Promotion The Descriptive Epidemiology of Overweight and Obesity in Australia Environmental and Public Policy Approaches: Dealing with Overweight and Obesity

8.29.6 UNDERSTANDING AND INFLUENCING HEALTH BEHAVIORS: THE EXAMPLE OF THE TRANSTHEORETICAL MODEL 8.29.6.1 Applying the Transtheoretical Model to Physical Activity Promotion 8.29.6.2 Applying the Transtheoretical Model to Weight Control Behavior

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8.29.7 CONCLUSIONS

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8.29.8 REFERENCES

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on how research from health psychology and the related field of behavioral epidemiology can provide some useful components of the conceptual and informational bases of large-scale efforts to influence health risk. We illustrate how a widely used model from health psychology (the transtheoretical model) may be used to better understand physical activity and weight control behaviors.

8.29.1 INTRODUCTION Clinical health psychology, with its roots in the understanding of human behavior and experience, its strong applied focus and the theoretical developments which it has spawned, has had a significant influence on the theory and practice of health promotion. Other chapters address clinical or individually focused health promotion and behavior change strategies, and some of the contemporary theoretical frameworks which are helpful in understanding how to change the health-related behaviors of individuals. In this chapter, our emphasis is

8.29.1.1 Health Promotion Health promotion is a broad field of endeavour, and it is beyond the scope of this 675

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chapter to explore fully all of its elements. The breadth of the field is made clear by the following definition of health promotion as: ªany planned combination of educational, political, regulatory and organizational supports for actions and conditions of living conducive to the health of individuals, groups or communitiesº (Green & Kreuter, 1991, p. 432). This definition makes it quite clear that health promotion encompasses much more than education about how to be more healthy, or personal health-risk reduction through self-initiated behavioral change. A public health perspective on health promotion involves attention to such matters as the effectiveness of mass-reach communication campaigns, planned changes to community environments, and attention to broader patterns of social or fiscal incentives for health-related behaviors. Such large-scale health promotion initiatives can be improved through stronger connections between health psychology theory and practical intervention procedures. This can be achieved, for example, by facilitating extrapolations from laboratory research to community intervention methods; by using consistent theoretical frameworks to guide the health promotion planning process; and by providing disciplined accounts of the data that are relevant to decisions about the appropriateness and likely impact of public health programs and strategies. The type of regulatory and social changes implied by Green and Kreuter's above definition can have a broad impact on large numbers of people. The legitimacy of such large-scale social change initiatives have been challenged on ethical grounds, focusing on concerns about deliberately engineered social controls and the manipulation of the behaviors of large numbers of people for the purpose of promoting health (Skrabanek, 1986). Concerns raised include, for example, the extent to which participation in, or exposure to, large-scale health promotion programs is truly voluntary; the harm that might be done to those who may be strongly coerced into changing health-related behaviors when they may not wish to do so; and, the extent to which large numbers of people might be being deprived of personal liberties, for example, through bans on cigarette smoking in workplaces, being coerced to be more physically active, or having their choices of food restricted. Any health promotion initiative, particularly when people are encouraged or constrained to make pervasive changes to lifestyle patterns, should be justified by sound epidemiological evidence. There must be a plausible biological and epidemiological rationale (see Chapter 8.01 this volume and also Kaplan, 1990) for why the behavior of concern should be regarded as a

health risk of sufficient magnitude to be addressed by large-scale initiatives which will at least influence the knowledge and attitudes or will impact on the ways of life of large numbers of people. Not all ethical concerns about health promotion interventions may be addressed by sound epidemiological rationales, by employing theoretical frameworks and methodologically rigorous data collection techniques to evaluate the efficacy of interventions, or by applying theory and methods from health psychology in as rigorous a fashion as possible. Nevertheless, rigorously applying soundly based theory and research may make it less likely that ineffective, wasteful or potentially deleterious approaches to health promotion will be developed and applied.

8.29.2 INDIVIDUAL VS. PUBLIC HEALTH APPROACHES IN HEALTH PROMOTION Public-health approaches to changing healthrelated behaviors require the development of intervention methods which may be used on a community-wide basis. Rose (1992) describes some of the major differences between a clinical and a broader population perspective on understanding and influencing risks to health. This different style of thinking has been a significant influence on the practice of prevention, but the relevant knowledge base is far from complete. Although there are now results available from, for example, a number of community-wide cardiovascular risk intervention trials (e.g., Young, Haskell, Jatulius, & Fortmann, 1993), much of what is known about health-related behavior change is based on intensive research with high-risk populations, or on laboratory, clinic, and small communitybased studies which often involve intensive programs delivered to small numbers of people. Often, clinical health psychology activities deal with individuals who already are involved in some form of action to change. In contrast to this, in the health promotion and public-health context, a key issue is encouraging much larger groups in the community environment to contemplate change, and to choose to take action (Jeffery, 1989). A challenge for psychologists who may wish to promote health-related behaviors is to come to terms with a population perspective on behavior and health (Kaplan, 1985, 1990). During the late 1980s, psychologists became more strongly interested in the public health issues which arise in relation to health-related behaviors (Best & Proctor, 1988; Ewart, 1990;

Physical Activity as a Public Health Concern Gochman, 1988; Jeffery, 1989; Lichtenstein & Glasgow, 1992; Winett, King, & Altman, 1989). The aim of this approach is to provide as many individuals as possible with assistance at a low cost. This interest has created a demand for effective ways of integrating the approaches of the disciplines of psychology and public health (Oldenburg & Owen, 1990; Winett et al. 1989). It is informative to consider the practical advantages and disadvantages of clinical compared to mass-reach health promotion (see Table 1). Clinical (or face-to-face) methods involve individual counseling, work with small groups, and other forms of personal contact. Public health or mass-reach approaches often use print or audiovisual media, and are usually made available through broadcast or massdistribution channels (Flay, 1987). It is not being suggested here that a clinical perspective is ineffective or irrelevant to largescale health community and population health promotion efforts. The public health approach can incorporate a whole range of more focused programs and services, as well as communitywide and environmental strategies, which can act to strengthen, support and maintain the health gains that health professionals can achieve with individuals in clinical and other settings.

8.29.3 PHYSICAL ACTIVITY AS A PUBLIC HEALTH CONCERN It is now clear from a number of large, crosssectional studies that there is a wide range of health benefits associated with habitually high

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levels of energy expenditure, and with increases from relatively low habitual levels (Blair, Kohl, Gordon, & Paffenbarger, 1992). Regular, vigorous exercise results in a number of beneficial changes to cardiovascular risk factors and decreased risk of heart disease may be achieved at relatively low intensities of exercise levels (Pate et al., 1995). Physical activity also has a significant protective effect against some cancers (Lee, 1994). The basal metabolic rate, which accounts for some 70% of energy expenditure, is increased by exercise. This, as well as the direct expenditure of energy during the activity, leads to weight loss if regular exercise is combined with moderate dietary restraint (Grilo, 1995). Other physical benefits include improved muscle strength and joint flexibility (DiPietro, 1996). Among noninsulin-dependent diabetics, exercise appears to have a number of beneficial metabolic effects: it can improve carbohydrate metabolism, can reduce blood glucose levels, and can increase the effectiveness of insulin and insulin receptors. It is estimated that physical inactivity accounts for about 35% of deaths from adult-onset diabetes (Powell & Blair, 1994). The likelihood of osteoporosis and risk of fracture may be reduced by exercising: higher levels of weight-bearing physical activity are associated with increased bone density levels (Drinkwater, 1994). Regular physical activity may also have mental health benefits: alleviating mild-tomoderate depression and anxiety, and improving confidence and self-concept. While exercise has the potential to bring about such benefits, it is not yet possible to determine whether these

Table 1 Some relative advantages and disadvantages of clinical and public health approaches to health promotion. Advantages

Disadvantages

Clinical or face-to-face programs

Interactive Reliable Provide social support Allow for personalizing Allow modeling Appropriate sequencing easy Follow-up easy

Expensive Market penetration weak May encourage dependency May not be acceptable to many people

Large-scale public health programs

Cheap per contact Large numbers reached More acceptable Can use social modeling techniques effectively May stimulate self-initiated change Potential for further development through modern technology

Weak engagement of users Unreliable Dilution of content Distortion Sequencing difficult Follow-up difficult

Source: Adapted from Owen and Lee (1986, p. 84).

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result from exercising itself. It seems equally likely that they could result from influences such as social support and confidence building, which are difficult to disentangle from the conduct of physical training programs. Improved sleeping patterns and feelings of relaxation can be produced by moderate levels of exercise, and exercise may be associated with other psychological benefits (Martinsen & Stephens, 1994). As well as there being a wide range of evidence from cross-sectional studies, recent prospective studies have shown associations between change in physical activity levels and physical health benefits (e.g., Young et al., 1993). There is now a general scientific consensus that physical activity promotion efforts directed to whole populations are justified by a range of well-documented health benefits. (e.g., Bouchard, Shephard, Stephens, Sutton & McPherson, 1990; Gloag, 1992; US Department of Health and Human Services, 1996).

8.29.4 WEIGHT CONTROL AS A PUBLIC HEALTH CONCERN Health authorities in many industrialized countries have for some years recommended that the prevalence of obesity should be reduced in the adult population. These recommendations are based on substantial evidence that demonstrates that higher relative weights are associated with greater risk of mortality and morbidity for a range of common conditions. This evidence was reviewed in the 1980s by expert groups in the UK (Royal College of Physicians, 1983), the USA (Burton, Hirsch, & Van Itallie, 1985), and Canada (Health and Welfare Canada, 1988), and as a consequence reports or statements were released identifying associations between excess weight and mortality and/or morbidity from conditions including noninsulin-dependent diabetes mellitus, coronary heart disease, hypertension, hyperlipidemia, and certain types of cancers. In a more recent review of the literature, PiSunyer (1991) concluded that there was ª ample evidence to suggest that obesity increases both morbidity and mortalityº (p.1600S), although debate continues concerning the strength of the independent risk of obesity vs. its effect on other risk factors, and where in the excess-weight spectrum specific risks begin. Similarly, an expert group in the UK recently concluded that ªobesity is an important health hazard both independently and in association with other diseases,º and they argued that ªthe true adverse consequences of obesity are underestimated, particularly for those who are only moderately

overweightº (Kopelman, Finer, Fox, Hill, & MacDonald, 1994, p. 189). Research has also shown that increased upper body or abdominal fat is associated with greater risk of premature mortality and morbidity, although the epidemiological evidence relating differences in body fat distribution to health is far less extensive than the data concerning excess weight (Pi-Sunyer, 1991). Two major sources of data are available on weight in the Australian adult population. These data are derived from the National Heart Foundation's Risk Factor Prevalence Study, conducted between 1980 and 1989 (Bennett & Magnus, 1994), and from the 1989±1990 National Health Survey (Australian Bureau of Statistics, 1992). The method used for characterizing body fatness in these studies was Body Mass Index (BMI = weight in kilograms/height in meters2). Although it is recognized that BMI may give an inaccurate indication of obesity in special groups, such as elite athletes or body builders (Garrow & Webster, 1985; Pi-Sunyer, 1988), it is nonetheless regarded as a practical and cost-effective measure of body fatness for population studies, as it correlates well with other more sophisticated measures (Garrow & Webster, 1985; Willett, 1990). A classification system derived from research findings on the health risks associated with varying levels of BMI has been adopted by Australian health authorities (National Health and Medical Research Council, 1985), and has been used to classify adults in the population studies described below. Under this classification system, ªunderweightº is defined as a BMI of less than 20 kg/m2; a BMI in the range of 20±25 kg/m2 inclusive is classified as an ªacceptable weightº; ªoverweightº is defined as a BMI of greater than 25 and up to and including 30 kg/m2; and a BMI of greater than 30 kg/m2 is defined as ªobese.º These categories apply to adults regardless of age (National Health and Medical Research Council, 1992). The use of a BMI of 25 kg/m2 to define the upper limit of the healthy weight range, regardless of age, is consistent with recommendations from the United States (Dietary Guidelines Advisory Committee, 1995). In practice, these two terms are often used interchangeably, some writers favoring the generic term ªoverweightº; others (particularly in the USA) tend to favor use of the term ªobese.º

8.29.5 BEHAVIORAL EPIDEMIOLOGY The most fundamental level of behavioral epidemiology is concerned with the identification of behaviors that are causally linked to

Behavioral Epidemiology disease. As stated above, epidemiological research has identified strong and probably causal associations between physical inactivity and obesity, and the risk of several chronic diseases and other health problems. One step removed from the examination of the causal relationships between behavior and disease is the epidemiological study of the behavior itself. With regard to physical activity, for example, behavioral epidemiology concerns itself with the study of who is active, who is inactive, why people are inactive, and how we might help them become more active. For weight control also, similar issues apply. The focus is on describing and understanding the distribution and determinants of the behavior, and not the disease itself (Raymond, 1989). Large-scale public health initiatives to influence health-related behaviors rely heavily on the availability of valid and reliable data on the population prevalence, trends, and sociodemographic distribution and determinants of the behaviors about which we are concerned. This is the level of descriptive epidemiology, within which the aim is to be able to identify whether or not the behavior of concern is widespread in the population and the extent to which the prevalence of this behavior does constitute a substantial risk for the whole population (Mason & Powell, 1985).

8.29.5.1 The Descriptive Epidemiology of Physical Activity Population prevalence data on physical activity participation are available from a number of developed countries, but until recently have tended to focus mainly on the 15±20% of the adult populations of the USA and Canada who exercise at a level sufficient strongly to enhance cardiorespiratory fitness (Caspersen, Merritt, & Stephens, 1994). However, it is more useful to focus on the physically inactive, given that the public health challenge is to activate the sedentary, rather than encourage those who are already active to do more. Australian studies (Bauman, Owen, & Rushworth, 1990) have found about one-third of adults to be sedentary in their leisure time, which is substantially similar to what has been found in North American surveys (Caspersen et al., 1994). Representative population data are helpful for identifying which groups should be targeted, what the content of an intervention should be, or what the characteristics are of those likely to succeed or fail in continuing to be physically active. Owen and Bauman (1992) found that 30% of adults who could be

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classified as sedentary in their leisure time were more likely to be older, less well-educated, and to have lower incomes. The most commonly reported reasons for inactivity were as follows: ªno timeº by 35%, ªphysically unableº by 24%, ªdon't want to exerciseº by 13%. These reasons were more likely to be reported by those who were older, and who had lower income. Women were more likely to report being physically unable to exercise. Those on lower incomes were more likely to report being physically unable and not wanting to exercise. These Australian findings are likely to have relevance to other countries which are broadly similar in their economic and social characteristics (Owen, 1994). Women, older people, and the socially disadvantaged may benefit most from less strenuous forms of physical activity such as walking (to overcome ªphysically unableº). Some people perceive time pressure as a central reason for inactivity: these may include those with less discretionary time in which to exercise, such as blue-collar workers or adult members of families with several children. Strategies to increase the convenience of physical activity (such as worksite programs or community facilities providing child care), may help such people to integrate physical activity more readily into the demands of their everyday life. Low-cost and easily accessible activities such as walking may have a greater chance of being taken up by those who are physically inactive (Morris, 1990; Owen & Lee, 1989).

8.29.5.2 Environmental and Public Policy Approaches: Physical Activity Promotion Stokols' (1992) ecological model has provided some useful insights into the options for a more comprehensive approach to large-scale health behavior change. Stokols makes the important point that most health promotion programs implemented in community, corporate, and clinical settings have been designed primarily to influence change in individuals rather than the environment. It has become increasingly clear that the wider environment and the context in which change is being addressed are also very important. It is important to understand the many social, cultural, and attitudinal factors that are determinants of some of the major behavioral risk factors. Health psychologists have traditionally given considerable attention to models of individual health behavior such as the Health Belief Model and the Theory of Reasoned Action (see Glanz,

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Lewis, & Rimer, 1990). More recently, broader models of interpersonal behavior and social influence incorporating social learning theory (Bandura, 1986; Ewart, 1990) have been developed, but less attention has been given to models that attempt to understand health behavior change within whole communities (Glanz et al., 1990). Many of the elements of a broader socialecological approach may be seen in public health policy initiatives in Australia, which largely mirror approaches being taken up in the UK (Killoran, Fentem, & Caspersen, 1994) and the USA (US Department of Health and Human Services, 1996). A focus on environmental and social determinants of physical activity is strongly integrated within the Australian National Health Goals and Targets for Cardiovascular Disease (Commonwealth Department of Human Services and Health, 1994; Owen & Lowe, 1994). The national target for Australia is a reduction in the proportion of adult Australians who are very inactive in their leisure time from 36% (at the time of the 1989 National Health Survey) to 25% by the year 2000. The Australian Goals and Targets identify strategies for reducing the proportion of the Australian population who are sedentary in their leisure time: (i) Governments should develop strategies to encourage employers to offer their staff physical activity and fitness programs or incentives to participate in outside programs. (ii) States and territories should work with the Australian Council for Health, Physical Exercise and Recreation (ACHPER) and the National Heart Foundation (NHF) to ensure that school curricula involve the regular participation of all children and adolescents in primary and high school in physical education programs several times a week. (iii) States and territories should work with ACHPER and the NHF to ensure that school physical education programs consist of physical activities which may be continued and maintained through later life. (iv) Tertiary education facilities should be encouraged to develop programs which increase the proportion of students who participate in sport or active recreation. (v) Governments and nongovernment organizations such as the NHF should develop programs to further reinforce the convenience of regular, moderate physical activity for the maintenance of cardiovascular health. (vi) States and local governments should be encouraged to include walking and cycle paths and low-traffic areas as part of community recreation and transport planning activities. The NHF should continue to work with local

governments to increase community exercise facilities and programs. (vii) States and local governments should investigate structural changes which will encourage people to walk or cycle instead of using motor transport wherever possible. Possibilities are car-free areas in cities (except for the disabled or elderly), and strategies to encourage cycling instead of driving. To design programs to reach populations which is, after all, a fundamental aim of the public health approach, requires an understanding of how social systems operate, how change occurs within and among systems, and how large-scale environmental and public policy changes influence health behaviors (Sallis & Owen, 1996; Stokols, 1992). Diffusion of innovations theory and a number of other models address in detail the understanding of ways to translate effective interventions into more widespread change, but to date there has been relatively little research which has addressed these issues comprehensively, other than in a few key settings such as schools and the workplace (US Department of Health and Human Services, 1996, Chapter 6). The example of the Australian national physical activity strategies show the extent to which an integrated and balanced approach to the promotion of physical activity must focus not only on mass-media awareness campaigns, but also on the provision of appropriate settings, facilities and resources that provide accessible and attractive opportunities for people to be more physically active (Donovan & Owen, 1994). What is emphasized in these strategies is that substantial and permanent opportunities to be more active in local communities need to be developed (King, 1991).

8.29.5.3 The Descriptive Epidemiology of Overweight and Obesity in Australia While the National Health Survey provides extensive information on the health of Australians, it did not include any physical or biomedical measurements (Australian Bureau of Statistics, 1992). Participants in the survey were interviewed and were asked to report their height and weight. These self-reported heights and weights were used to calculate BMI for persons aged 18 years and over, and to classify them into one of the four BMI categories described above. There are, however, problems associated with the validity of such self-report data, which are likely to result in the misclassification of subjects into BMI categories (Nieto-Garcia, Bush, & Keyl, 1990). In spite of the limitations of the National Health Survey

Behavioral Epidemiology data, they have been used as the baseline for Australia's National Health Goals and Targets for overweight (Commonwealth Department of Human Services and Health, 1994), and they will be used to monitor trends in BMI and to evaluate the effectiveness of future initiatives. The National Health Survey data suggest that, based on BMI, only half of the adult population have an acceptable weight. The proportion of men classified as overweight or obese (defined as a BMI4 25 kg/m2) increased until the age of 55, rising from 26% of men aged 18±24 to 55% of the men aged 45±54, before falling in the older age groups. Among women, the prevalence of overweight or obesity increased from 15% in the youngest age group, to 45% in women aged 55±64, before beginning to fall. The prevalence of underweight was highest for men aged under 25 and for men 75 years and over, while for women underweight decreased as age increased, until the age of 55. Almost three times as many women as men were underweight, and slightly more women than men were in the obese category. However, men were more likely than women to be classified as overweight, and overall more men had a BMI greater than that which is currently considered acceptable. During the 1980s the National Heart Foundation of Australia conducted three independent cross-sectional risk factor prevalence surveys, each of which employed essentially the same methods (Bennett & Magnus, 1994). In these surveys, a systematic probability sample of adults was selected from the federal electoral rolls of major urban centers (registration on the electoral rolls is compulsory for all citizens aged 18 years and over), and those selected were invited to attend a free cardiovascular risk factor screening at a local survey center. The data from the three Heart Foundation surveys are based on objectively measured height and weight. The Heart Foundation data show that only about a half of the adults surveyed in 1989 were an ªacceptableº weight (National Heart Foundation of Australia, 1990), that is, had a BMI which falls within the range that is currently considered to be associated with lowest risk of mortality and morbidity. Although obesity was also more common among women than men, a greater proportion of the men were overweight or obese, with almost one in two men affected, compared to approximately one in three women. The prevalence of overweight or obesity was found to increase from 25% in men aged 20±24, leveling out at approximately 60% in men aged 45 years or more. In women, the proportion who were overweight or obese increased from 17% in the youngest group, to slightly less than 60% of women aged 65±69.

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The prevalence of overweight or obesity also varied by other sociodemographic characteristics. An analysis of the 1989 Heart Foundation survey data revealed that the odds of being overweight or obese were higher among persons born in Southern Europe compared to Australia; for persons with a low level of education compared to those with tertiary qualification; for married men compared to men who have never married; for plant/machinery operators compared to professional men; for laborers and related workers compared to professional women; and for women in the two lowest socioeconomic categories compared to those in the highest category (Waters & Bennett, 1995). The differences by social status are generally consistent with those reported for other industrialized countries (Sobal & Stunkard, 1989). The Australian Risk Factor Prevalence Study has been analyzed to examine trends in BMI in the adult population over time (Bennett & Magnus, 1994). These analyses showed there has been an increase in the average weight of adults, with no significant changes in height during the 1980s. In 1989, women were an average of three kilograms heavier than their counterparts in 1980, while among men average weight increased by just over one and a half kilograms. Although these increases in weight do not appear dramatic, they in fact translate to a 23% increase in the proportion of men overweight or obese over the period 1980±1989, and a 58% increase in the proportion of women who carry excess weight. Other data derived from the 1989±1990 National Health Survey and the 1994 Australian Bureau of Statistics Population Survey Monitor, although relying on self-report height and weight data, suggest that among men and women aged 25±64 years the prevalence of overweight and obesity has continued to increase (Abraham, d'Espaignet, & Stevenson, 1995). While definitions of obesity vary from country to country, the trend of increasing average weights is not unique to Australia, having also been observed in other industrialized countries, including the US (Kuczmarski, Flegal, Campbell, & Johnson, 1994), the UK (Gregory, Foster, & Tyler, 1990), Sweden (KuskowskaWolk & Bergstrom, 1993a; Kuskowska-Wolk & Bergstrom, 1993b), and Germany (Hoffmeister, Mensink, & Stolzenberg, 1994).

8.29.5.4 Environmental and Public Policy Approaches: Dealing with Overweight and Obesity Many of the same ecological frameworks and theoretical models and issues described above in

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relation to physical activity apply to addressing overweight and obesity. For many years Australian health authorities and other health and professional organizations, like those in other developed countries, have promoted the virtue of an acceptable weight, focusing the benefits of weight loss. In addition to these activities and initiatives, commercial weightloss centers, special diet foods, and diet plans proliferate, and information on weight control is common in the print media. Despite the activities of public- and private-sector organizations over many years, excess body weight is more common in the late 1990s than it was at the beginning of the 1980s. In response to the high prevalence of overweight and obesity, and the disturbing trend of increasing average weights. Australian health authorities, like those of other countries (Health and Welfare Canada, 1988; US Department of Health and Human Services, 1991), have also identified health goals relating to overweight and obesity (Table 2). These targets are based on a recognition that the problem is a population phenomenon, and that a small reduction in the population's mean weight can lead to significant change in the prevalence of overweight (Rose, 1992). While it is acknowledged that there is a need to promote behavioral and environmental change to improve dietary habits and increase levels of physical activity in the population, a comprehensive strategy to deal with overweight is only now, in the late 1990s, being developed in Australia. Given this, the Australian year 2000 targets for reducing overall levels of overweight

and obesity must be viewed as optimistic, especially in light of the recent trends of increasing average weight.

8.29.6 UNDERSTANDING AND INFLUENCING HEALTH BEHAVIORS: THE EXAMPLE OF THE TRANSTHEORETICAL MODEL There is a need to develop and apply appropriate theory and to generate innovative ways of delivering health promotion programs to larger numbers of individuals, not only through traditional clinical settings, but through the media, the workplace, and elsewhere in the community (Winett et al., 1989). A theoretical framework which now has considerable currency in public health analyses of health risk behaviors is the transtheoretical model (TTM). While the research supporting this model originated in clinical psychology (Prochaska, DiClemente, & Norcross, 1992), the TTM has been applied to health-related behavior change in large-scale studies and in a range of populations and settings (Prochaska et al., 1994). The TTM is not the only model from health psychology with obvious relevance to understanding and influencing the practice of health promotion (see Chapter 8.01, this volume). Other theories give very helpful accounts of key issues such as the importance of observational learning, or the role of risk perceptions, health beliefs, and attitudes in health behavior (see

Table 2 Australia's health goals and targets relating to overweight. Year 2000 target (%)

Baseline level (%)

Increase proportion with an acceptable body weight Men Women

60 60

48.8b 51.0b

Reduce the prevalence of overweighta Men Women

40 25

44.2b 30.6b

Reduce the prevalence of abdominal obesity Men Women

38 18

41.5c 22.9c

Health goals for adults relating to overweight

Source: Adapted from Commonwealth Department of Community Services and Health (1994). a Although this goal uses the term ªoverweightº it actually refers to the combined overweight and obese BMI categories. b Based on self-report data from the 1989±1990 National Health Survey. c Based on the 1989 National Heart Foundation Risk Factor Prevalence Study which included objective waist and hip measures.

Understanding and Influencing Health Behaviors Glanz et al., 1990). Here, we use the TTM as an example of a theoretical model which has performed well in the physical activity area, and which shows promise in understanding weight control. The TTM proposes that there is a series of specific stages in the acquisition and maintenance of a behavior (DiClemente et al., 1991; Prochaska & DiClemente, 1983; see also Chapter 8.01 this volume). The model focuses on both current behavior and future behavioral intentions, and provides a framework that reflects motivational readiness for behavior change (Abrams, 1993; Marcus, Eaton, Rossi, & Harlow, 1994). Within this framework, behavior change is not considered to be an all-or-nothing phenomenon change, or a state of action vs. inaction (Abrams, 1993). This dynamic quality is important from a public health perspective, since it allows the targeting of specific segments of the population, the aim being to accelerate movement through the stages of behavior change toward action. The five stages of behavior change (DiClemente et al., 1991) identified under the TTM are: (i) precontemplation, in which change is not being considered; (ii) contemplation, in which change is considered; (iii) preparation, in which an individual takes small steps towards change; (iv) action, involving the initial modification of the habit; and (v) maintenance, when the change is sustained over six months or more. The concept that there are discrete identifiable stages of change, reflecting varying degrees of readiness to modify behavior, has been proposed by others (e.g., Brownell, Marlatt, Lichtenstein, & Wilson, 1986). However, a distinctive feature of the TTM is its recognition of the importance of a broad set of stages, including the early stages of change (Rossi, Rossi, Velicer, & Prochaska, 1995). Within the TTM framework, the change process is viewed as a continuum, with individuals leaving and re-entering at different points. Relapse (Marlatt, 1985; Brownell et al., 1986) should be considered a key element of any stage-base model of behavioral change. In relapse, individuals may lose resolve and abandon the new behavior pattern, feel guilty, lose confidence and revert to their previous habits. This terminates the action or maintenance stages, often prompting recycling through the earlier stages of precontemplation or contemplation. The TTM was initially applied to smoking cessation (DiClemente & Prochaska, 1982), and

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has been widely used in that domain (Biener & Abrams, 1991, Owen, Wakefield, Roberts, & Esterman, 1992; Prochaska, Velicer, DiClemente, & Fava, 1988; Velicer, DiClemente, Prochaska, & Brandenburg, 1985). However, the TTM has also been employed to examine a range of other health behaviors such as quitting cocaine, safe sex, sun screen use, mammography screening, and delinquent behavior. These include behaviors that are addictive and nonaddictive, that differ in terms of their frequency of occurrence, that are legal and illegal, socially acceptable and unacceptable, and that involve the cessation of negative behaviors as well as the acquisition of positive behaviors (Prochaska et al., 1994) Although few studies have used this model to explain weight control behaviors (discussed in Section 8.29.6.2), it has been extensively used to examine physical activity and dietary behaviors. As well as identifying those who are ready to modify behavior, a key feature of the TTM is its emphasis on examining transitions between the various stages, by integrating components of other theories. While the TTM is one of a number of theoretical models that can be used to explain and predict health behavior change, it now has broad currency in the health promotion field, not only because of the empirical research supporting it, but also because of its practical face validity and appeal to practitioners and policymakers. Applications of the TTM to a wide range of behavioral domains are described by Prochaska et al. (1994). Two of the key theoretical constructs within the TTM are of self-efficacy and decisional balance. According to self-efficacy theory, confidence in the ability to perform a particular behavior is strongly associated with the actual ability to perform that behavior (Bandura, 1977). Self-efficacy beliefs have been shown to be associated with the performance of a diverse range of health-related behaviors (O'Leary, 1985; Strecher, McEvoy-DeVellis, Becker, & Rosenstock, 1986). The notion of decisional balance is based on the conflict theory of decision making (Janis & Mann, 1977). Janis and Mann argued that, in making a sound decision, all relevant considerations are entered into a decisional ªbalance sheetº where the potential gains (pros) and losses (cons) resulting from the behavior to the individual and to others are evaluated, along with other factors such as self-esteem and the approval of others. A number of studies of health-related behaviors have shown that, compared to those in the later stages, individuals in the early stages of change had little confidence in their ability to exercise or to change their diets (Glanz et al., 1994; Marcus & Owen, 1992; Marcus, Selby,

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Health Promotion: Perspectives on Physical Activity and Weight Control

Niaura, & Rossi, 1992; Sporny & Contento, 1995). Other data show that in moving from the precontemplation stage to the action stage, the perceived benefits of the change (the pros) increase, the perceived costs of the change (the cons) decrease, and overall decisional balance (pros±cons) increases (Marcus et al., 1994; Marcus & Owen, 1992; Marcus, Rakowski, & Rossi, 1992). These relationships between selfefficacy and decisional balance with stage of change for physical activity and dietary behaviors are generally consistent with those observed for other behaviors (DiClemente, Prochaska, & Gibertini, 1985; Prochaska et al., 1994; Schorling, 1995). The following sections deal with the research findings and practical applications relating to stage-based approaches to physical activity and weight control. As will become apparent, the TTM has been applied more extensively in physical activity research and related practical initiatives than has so far been the case for weight control. These differences illustrate the scope that still exists for unique applications of health psychology theory and research methods within the health promotion field.

8.29.6.1 Applying the Transtheoretical Model to Physical Activity Promotion Theory from health psychology may be used to provide a more in-depth understanding of physical activity or any other health-related behavior than is possible when only descriptive epidemiology studies like those described above are employed. For example, Australian studies have used stage-of-change measures from the TTM in behavioral epidemiology studies with representative population samples, and have found that about half of the sedentary Australian adults interviewed did not have being more active on their agenda (Booth, Bauman, Oldenburg, Owen, & Magnus, 1992; Booth et al., 1993). The TTM's five main stages may be used to identify what is likely to be involved in taking up a more physically active lifestyle: (i) In the precontemplation stage, individuals are not considering change; they state that they do not exercise and that they do not wish to do so. (ii) In the contemplation stage, individuals are evaluating the benefits of being more active, and perhaps intend to change, but have not acted on this intention; for example, they have decided to lose weight by being more active but have not begun to do so. (iii) In the preparation stage, individuals are taking concrete steps to become more active, for

example joining a community activity centre, buying clothing and equipment or making commitments to be involved in active leisure pursuits with friends. (iv) In the action stage, individuals have initiated changes, are consolidating those changes, and integrating them into their lifestyles. (v) In the maintenance stage, a pattern of regular physical activity has been consolidated for at least six months, and individuals are persisting with a relatively stable new pattern of behavior change. Assuming that these different stages are involved in the acquisition of physical activity habits, it follows that characteristics associated with the adoption of exercise may not be the same as those that relate to the successful maintenance of behavior change. For example, Marcus and Owen (1992) and Marcus, Rakowski, and Rossi (1992) examined the relationship of self-efficacy, a key component of Bandura's social-cognitive theory of behavior change (Bandura, 1986), with different stages of exercise adoption and maintenance. Self-efficacy reliably differentiated between the different stages. There was a significant trend of increased self-efficacy for participants in the different stages of the exercise-adoption sequence from precontemplation to maintenance. Studies of the impact of large scale public health campaigns to influence exercise participation have used both descriptive behavioral epidemiology data and theoretically derived measures. Some informative findings come from studies of nationwide physical activity campaigns that were conducted by the National Heart Foundation of Australia in 1990 and 1991. The campaigns were informed by social, learning and social marketing models and each emphasized walking as the main activity, and also focused on the precursors and early stages of physical activity adoption, drawing on the Transtheoretical Model's stages of behavioral change (Booth et al., 1993; Prochaska et al., 1992). The first campaign focused on the adoption of physical activity (in the framework of the TTM, shifting precontemplators and those in contemplation to taking action) and used the slogan ªExercise: make it part of your dayº (Booth et al., 1992). The second campaign focused on maintenance (in the framework of the TTM, influencing those in preparation or action to persist with activity in the longer term) and used the slogan ªExercise: take another stepº (Owen, Bauman, Booth, Oldenburg, & Magnus, 1995). The two campaigns were promoted through paid television advertisements, prerecorded

Understanding and Influencing Health Behaviors public service announcements for radio, the distribution of a professional paper, posters, leaflets and stickers, T-shirts, sweat shirts, publicity tours by two heart-health experts, a variety of magazine articles, and the scripting of one episode of each of two nationally broadcast television drama series. There was also opportunistic promotion through electronic and print media news coverage, editorials, and feature articles. In addition to national media-based strategies, local initiatives were pursued at the National Heart Foundation State Division level. These more community-based promotional activities emphasized special activity days and competitions. These Australian campaigns provided an opportunity to examine systematically the influence of serial national mass-media campaigns directed at increasing levels of participation in physical activity. Face-to-face, homebased interviews with a representative national sample were carried out two weeks prior to and three to four weeks following each campaign. The evaluation of the 1990 campaign (Booth et al., 1992) found increases in the prevalence of reports of walking following the campaign. Changes were most marked in older people, and occurred across most socioeconomic groups. Awareness of the campaign message increased significantly from before the first campaign to after that campaign (46±71%). The level of physical activity±message awareness was still quite high prior to the 1991 campaign (63%), with postcampaign awareness increasing to 74%. Changes in reported walking for exercise and in readiness to exercise found in 1990 were not found in 1991 (Owen et al., 1995). The measures of stages of change derived from the TTM were informative in interpreting elements of the evaluation. In 1990, the prevalence of reporting no intention to do more exercise showed the greatest pre- to postcampaign decreases, suggesting that the campaign may have been most effective in reaching those who were the least active and most resistant to change. The 1991 campaign message may have reinforced those who had previously adopted activity but failed to motivate change in others. Or most of those who were able to, or who intended to, change had already done so in response to the 1990 campaign.

8.29.6.2 Applying the Transtheoretical Model to Weight Control Behavior In the weight control field, the research concerns of health psychologists and the current practical public health imperatives faced by practitioners and policy makers raise some

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issues in common with those for physical activity, but also different, and in some ways more basic, concerns. At the level of developing and using health psychology theory in the weight control field, applications of the TTM are promising, but at an earlier stage than is the case for physical activity. An understanding of population weightcontrol behaviors is important because there is some evidence that, in trying to control their weights, individuals may put their health at risk (National Institutes of Health Technology Assessment Panel, 1992). The challenge facing health authorities in developed countries is to reduce the prevalence of overweight and obesity without exacerbating the problems of low body weight or unhealthy weight control. In order to achieve this, there is a growing recognition of the need to prevent weight gain in the population. In the United States, for example, health authorities have recommended that weight guidelines for the public be revised, so that there is an increased focus on weight maintenance, regardless of current weight, with less emphasis placed on weight loss. This shift in emphasis recognizes the importance of weight control as ªthe essential first step toward a reduction in the prevalence of obesity in the populationº (Dietary Guidelines Advisory Committee, 1995, p. 23). The use of the TTM in describing and understanding physical activity in a public health context has already been considered. Because these behaviors are directly relevant to the issue of weight control, the TTM is likely to be potentially useful in understanding population-wide weight-control behaviors, and its use may also facilitate the development of better targeted public health intervention strategies. The few studies that have used the TTM to examine weight-related behaviors have shown that, as well as those actually taking action to lose weight, many individuals were trying to maintain their weight, and many were contemplating taking action. For example, in a group of college students only 18% were taking action for their weight; however, a further 15% were trying to maintain their weight, and just over half were contemplating weight loss (O'Connell & Velicer, 1988). Similarly, among participants in a smoking cessation study, 51% were taking action for their weight, with 27% attempting to maintain their weight, and another 19% contemplating weight loss (Ross et al., 1995). Consistent with the findings of previous research (Prochaska et al., 1994), the study of college students also found that the perceived costs (cons) of behavior change were significantly greater than the perceived benefits

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(pros) for those in the precontemplation stage, while individuals in the action stage showed the greatest imbalance in favor of the pros. The TTM provides a theoretical framework within which to examine weight control using the broader definition proposed earlier, by encompassing both weight-loss and weightmaintenance behaviors (Rossi et al., 1995). However, the two studies which have applied the TTM were concerned with weight-loss behavior, not with weight-control behavior. In classifying the college students into one of the stages of change, for example, a minimum weight loss criterion of at least 10 pounds was set (O'Connell & Velicer, 1988). Therefore, individuals classified into the maintenance stage were those who had a minimum of 10 pounds weight loss in the past and were successfully taking action to avoid regaining the weight (but with no goal of further weight loss). Individuals who were actively trying to avoid weight gain, but who had not previously lost more than 10 pounds, were not classified into one of the stages of change. Health authorities are now encouraging people to take steps to maintain their weight, even if they do not have a weight problem. Therefore, in considering weight-control behaviors from a public health perspective, it is important that we have data on population-wide weight-control behaviors, not just on weight loss among those who already have a weight problem. However, determining stage of change for weight control is potentially problematic. One key issue is that weight control is not a discrete behavior (Rossi et al., 1995). Unlike cigarette smoking, the health behavior to which the TTM was initially applied, weight control potentially involves a number of different strategies and it would not be feasible to examine each of the specific strategies employed. Another potential problem arises from the fact that weight control includes weight loss and weight-maintenance behaviors, and can be practiced regardless of weight status. It would not be sensible from a public health perspective to use a single arbitrary weight standard to define stage of change for weight control and apply this to every individual. To do so would be to ignore that there are many individuals who are not overweight but who actively try to lose or maintain weight. The public health challenge is to assess stage of change for the range of behaviors that are employed to control weight across the whole population. In this regard, the application of the TTM to weight control poses similar challenges to an examination of dietary behavior change. In that domain, classifying individuals in terms of their stage of change for each component of

the diet is considered to be impractical, and there are also problems in trying to apply a strict criterion to define stage of change. Several of the studies that have examined dietary fat behavior have, therefore, used a ªglobalº measure to define stage of change. For example, in a recent worksite study, individuals were asked to report whether they had deliberately changed the way they eat to reduce the amount of fat and fatty foods (Sporny & Contento, 1995). Subjects were classified into the precontemplation stage if they were not eating a reduced-fat diet and not considering doing so, contemplators were those who were not eating a reduced-fat diet but were considering doing so, subjects in action were those who reported eating a reduced-fat diet for less than two years, and those who had eaten such a diet for more than two years were considered to be in maintenance. It may therefore be possible to determine stage of change for weight control using a similar measure. If so, this would allow researchers to distinguish those who are not taking any form of action to lose or maintain weight, those who are at least considering taking action, and those who are actively trying to lose weight or to maintain their weight. Such information is likely to be important in developing public health strategies to reduce the prevalence of overweight and obesity. The TTM of behavior change is a framework through which more fine-grained analysis of the different stages in people's weight control efforts may be conducted. The TTM has been applied more extensively in physical activity research and related practical initiatives than has so far been the case for weight control. The more definitive application of such an understanding of weight-control behavior to public health intervention has yet to be developed and used in practice.

8.29.7 CONCLUSIONS In health promotion research on physical activity and weight control, there remain gaps in the knowledge base needed to inform large-scale health promotion initiatives. Through behavioral epidemiology research, the links between health psychology theory and practical largescale public health intervention strategies in these two areas will be strengthened into the twenty-first century. This will be the case not only for physical activity and weight control, but also for a number of the other rapidly developing areas of health promotion research and practice such as skin cancer prevention, and participation in mass screenings to detect treatable early signs or precursors of disease.

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