The Course of Eating Disorders

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2 w. Herzog H.-C. Deter W. Vandereycken (Eds.) The Course of Eating Disorders Long-Term Follow-up Studies of Anorexia and Bulimia Nervosa With 29 Figures and 80 Tables Springer-Verlag Berlin Heidelberg New York London Paris Tokyo Hong Kong Barcelona Budapest

3 Dr. Wolfgang Herzog Abteilung fur Allgemeine Klinische und Psychosomatische Medizin, Medizinische Universitatsklinik Bergheimer StraBe 58, W-6900 Heidelberg, FRG Prof. Dr. Hans-Christian Deter Abteilung fur Psychosomatik und Psychotherapie Universitatsklinikum Steglitz Hindenburgdamm 30, 1000 Berlin 45, FRG Prof. Dr. Walter Vandereycken Department of Psychology, University of Leuven Leuvenselaan 85, 3300 Tienen, Belgium ISBN-13: DOl: / e-isbn-13: Library of Congress Cataloging-in-Publication Data The Course of eating disorders: long-term follow-up studies of anorexia and bulimia nervosa 1 W. Herzog, H.-C. Deter, W. Vandereycken (eds.). p. cm. Includes bibliographical references and index. ISBN (alk. paper): ISBN (alk. paper) I. Anorexia nervosa-longitudinal studies. 2. Bulimia-Longitudinal studies. I. Herzog, W. (Wolfgang) II. Deter, Hans-Christian. III. Vandereycken, Walter, [DNLM: 1. Anorexia Nervosa. 2. Bulimia. 3. Follow-Up Studies. WM 175 C861j RC552.A5C '26-dc20 DNLM/DLC This work is subject to copyright. All rights are reserved, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilm or in any other way, and storage in data banks. Duplication of this publication or parts thereof is permitted only under the provisions of the German Copyright Law of September 9, 1965, in its current version, and permission for use must always be obtained from Springer-Verlag. Violations are liable for prosecution under the German Copyright Law. Springer-Verlag Berlin Heidelberg 1992 Softcover reprint of the hardcover 1st edition 1992 The use of general descriptive names, registered names, trademarks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. Product liability: The publishers cannot guarantee the accuracy of any information about dosage and application contained in this book. In every individual case the user must check such information by consulting the relevant literature. Typesetting: Best-set Typesetter Ltd., Hong Kong 19/ Printed on acid-free paper

4 Preface Clinicians and scientists are becoming more and more interested in anorexia nervosa and bulimia nervosa, as evidenced by the increasing number of publications on the subject. In addition to studies on symptomatology, diagnosis, etiology, and treatment' studies on the course of disease are gaining in significance. More and more clinicians and researchers have now realized that anorexia nervosa and bulimia nervosa are often difficult to treat and that short-term outcome can be very misleading. In many cases these eating disorders follow a longterm course and may have serious consequences for the patient's life in the future. The purpose of this book is to provide a detailed overview of the latest developments on long-term outcome in patients suffering from anorexia and bulimia nervosa. The subject is dealt with in such a way as to develop a more comprehensive perspective on the conditions, whereby various methodological approaches to studying outcome have been adopted - biomedical, psychological, sociocultural, and even historical. In the first part "General Aspects of Follow-up Research" those topics, issues, and problems are treated which confront every clinician who wants to get an idea of long-term outcome of anorexia and bulimia nervosa and every scientist who is planning such a study. As well as presenting preconsiderations on the significance of follow-up studies, the book describes methodological prerequisites (Vandereycken and Meermann), reviews the literature on the long-term course of anorexia nervosa (Herzog et al.), discusses the particular problem of outcome assessment in eating disorders (Morgan et ai., Deter), and deals separately with the peculiarities of eating disorders in male patients (Andersen). I 1 As regards the characteristics in younger patients see the chapter by Steinhausen et al.

5 VI Preface In the second part of the book "Follow-up Studies of Anorexia and Bulimia Nervosa," ten extensive long-term follow-up studies are presented. The data from these studies, which for the most part are being published for the first time, reflect the current state of research and make it possible to compare the results of long-term follow-up studies of anorexia from specialized psychiatric clinics (Russell, Theander), child and adolescent psychiatric institutions (Steinhausen, Tolstrup), and medical centers (Deter et at., Herzog et at., Engel et at.). Since a diagnostic distinction of bulimia was not made until about 10 years ago, there are no results of observations of bulimia nervosa patients over longer periods of time which are comparable to the data on anorexia patients. However, data from methodologically sophisticated studies in large numbers of patients over a follow-up time of 2-4 years have been reported (Fichter and Quadflieg, Lacey, Mitchell and Pyle). As in the Leuven study (Vandereycken and Pieters), prospective study designs were put to use. The last three chapters of this part present not only the results of the most well-known "ultralong-term studies," including those with observation times of over 30 years (Russell, Theander, Tolstrup). Based on their wealth of experience as clinicians and researchers, the authors have also summarized their thoughts on prognosis, on a new concept of chronicity, and also on the question of what can be learned from the longterm study of patients with eating disorders. The third part of the book deals with "Special Issues." A broad spectrum of methods have been used to analyze various aspects of the subject of long-term follow-up in eating disorders. A biomedical approach was taken in twin studies (Schepank), and a thorough analysis of menstrual disorders and hormonal disturbances is also presented (Beumont). Eating behavior has been studied epidemiologically, too, in healthy individuals and in those with eating disorders (Rathner). The recovery process is presented through the eyes of the women affected (Noordenboos) and is followed by studies of psychosocial conceptions such as "social support" in the long-term follow-up of anorexia (Manz et at.) or the significance of ego strength, object relations, and life events as predictors of outcome (Sohlberg and Norring), as well as a historical follow-up of what happened to the fasting girls (Van Deth and Vandereycken). In the last chapter an experienced therapist describes his personal view of the developments and changes in the treatment of eating disorders over the past two decades (Petzold). Here, the question which from the start

6 Preface VII has been the main motivation for studying long-term follow-up arises again: How can we use and integrate our knowledge of the outcome of anorexia and bulimia nervosa so as to develop and offer optimal treatment? December 1991 W. Herzog H.-C. Deter W. Vandereycken

7 Contents Part 1: General Aspects of Follow-up Research 1 The Significance of Follow-up Investigations W Vandereycken and R. Meermann Long-Term Course of Anorexia Nervosa: A Review of the Literature W Herzog, C. Rathner, and W. Vandereycken Outcome Assessment H. C. Morgan, I. M. P. Macquire-Samson, J. Purgold, and CA. Vassilas The Anorexia Nervosa Symptom Score: AMultidimensional Tool for Evaluating the Course of Anorexia Nervosa H. -C. Deter Follow-up of Males with Eating Disorders A. E. Andersen Part II: Follow-up Studies of Anorexia and Bulimia Nervosa The Heidelberg-Mannheim Study: Long-Term Follow-up of Anorexia Nervosa Patients at the University Medical Center - Background and Preliminary Results H.-C Deter, W Herzog, and E. Petzold Somatic Findings at 12-Year Follow-up of 103 Anorexia Nervosa Patients: Results of the Heidelberg-Mannheim Follow-up W Herzog, H. C Deter, D. Schellberg, S. Seilkopf, E. Sarembe, F. Kroger, H. Minne, H. Mayer, and E. Petzold

8 X Contents A Prospective Follow-up Study in Early-Onset Eating Disorders H.-c. Steinhausen and R. Seidel Long-Term Outcome in Anorexia Nervosa Inpatients K. Engel, A.E. Meyer, M. Hentze, and M. Wittern The German Longitudinal Bulimia Nervosa Study I M.M. Fichter, N. Quadflieg, and W. Rie! Long-Term Follow-up of Bulimic Patients Treated in Integrated Behavioural and Psychodynamic Treatment Programmes f. H. Lacey A Long-Term Follow-up Study of Outpatients with Bulimia Nervosa Treated in a Structured Group Psychotherapy Program f.e. Mitchell and R.L. Pyle...,. 174 A Large-Scale Longitudinal Follow-up Study of Patients with Eating Disorders: Methodological Issues and Preliminary Results W. Vandereycken and C. Pieters The Prognosis of Eating Disorders: A Clinician's Approach C.F.M. Russell Chronicity in Anorexia Nervosa: Results from the Swedish Long-Term Study S. Theander What Can We Learn from Long-Term Outcome of Anorexia and Bulimia Nervosa? K. Tolstrup Part III: Special Issues Genetic Determinants in Anorexia Nervosa: Results of Studies in Twins H. Schepank Menstrual Disorder and Other Hormonal Disturbances P.f. V. Beumont

9 Contents XI Aspects of the Natural History of Normal and Disordered Eating and Some Methodological Considerations G. Rathner Important Factors in the Process of Recovery According to Patients with Anorexia Nervosa G. Noordenbos Social Support and Long-Term Course of Anorexia Nervosa R. Manz, H.-C Deter, and W. Herzog Ego Strength, Object Relations, and Life Events as Outcome Predictors in Restricting Anorexia Nervosa and Normal-Weight Bulimia Nervosa S. Sohlberg and C Norring What Happened to the "Fasting Girls"? A Follow-up in Retrospect R. van Deth and W. Vandereycken Treatment of Anorexia Nervosa: An Interview E. Petzold Outlook W. Herzog, H.-C Deter, and W. Vandereycken Subject Index

10 List of Contributors Andersen, A.E., M.D., Professor Department of Psychiatry, The University of Iowa 500 Newton Road, Iowa City, IA 52242, USA Beumont, P.l.v., M.D., Professor and Sub-dean Department of Psychiatry, University of Sydney Head of Royal Prince Alfred Hospital and Lynton Hospital Camperdown, N.S.W. 2050, Australia Deter, H.-C., Prof. Dr. Abteilung fur Psychosomatik und Psychotherapie U niversitatsklinikum Stegli~z Hindenburgdamm 30, 1000 Berlin 45, FRG Engel, K., Priv.-Doz. Dr. Westfalische Klinik fur Psychiatrie, Universitat Bochum MarsbruchstraBe 179, W-4600 Dortmund, FRG Fichter, M.M., Prof. Dr. Psychosomatische Klinik Roseneck Am Roseneck 6, W-8210 Prien, FRG Hentze, M., Dr. Benkiser GmbH AchenbachstraBe 58, W-6700 Ludwigshafen, FRG Herzog, W., Dr. Abteilung fur Allgemeine Klinische und Psychosomatische Medizin, Medizinische Universitatsklinik Bergheimer StraBe 58, W-6900 Heidelberg, FRG Kroger, F., Dr. Psychosomatische Klinik Universitat Aachen, RWTH PauwelsstraBe, W-5100 Aachen, FRG

11 XIV List of Contributors Lacey, J.H., M.D., Professor Adult Psychiatry Section, St. George's Hospital Medical School, University of London Department of Psychiatry, Jenner Wing Cranmer Terrace, Tooting, London SW17 ORE United Kingdom Macquire-Samson, I.M.P.J., M.B., B.S., M.R.C. Psych., Senior Registrar, Department of Psychiatry, Barrow Hospital 41 St. Michael's Hill, Bristol BS2 8DZ, United Kingdom Manz, R. Dip!. Psych. Psychosomatische Klinik, Universitat Heidelberg ThibautstraBe 2, W-6900 Heidelberg, FRG Mayer, H. StreB-Forschungsgruppe, Universitat Heidelberg Bergheimer StraBe 58, W-6900 Heidelberg, FRG Meyer, A.E., Prof. Dr. Abteilung fur Psychosomatische Medizin Medizinische Universitatsklinik MartinistraBe 52, W-2000 Hamburg 20, FRG Meermann R., Dr. Dip!. Psych., Priv.-Doz. Psychosomatische Fachklinik Bombergallee 10, W-3280 Bad Pyrmont, FRG Minne, H., Prof. Dr. Abteilung fur Endokrinologie Medizinische U niversitatsklinik Bergheimer StraBe 58, W-6900 Heidelberg, FRG Mitchell, J.E., M.D., Associate Professor Department of Psychiatry, University of Minnesota University Hospitals Mayo Box 393, 420 Delaware Street S.E. Minneapolis, MN 55455, USA Morgan, H.G., M.A., M.D., Professor Department of Mental Health, University of Bristol 41 St. Michael's Hill, Bristol BS2 8DZ, United Kingdom Noordenbos, G., Ph.D. Department of Women's Studies, State University of Leiden Wassenaarseweg 52, 2333 AK Leiden, The Netherlands Norring, c., M.D. Department of Clinical Psychology, U ppsala University P.O. Box 1225, Uppsala, Sweden

12 List of Contributors XV Petzold, E., Prof. Dr. Psychosomatische Klinik UniversiHit Aachen, RWTH PauwelsstraBe, W-5100 Aachen, FRG Pieters, G., M.D. University Psychiatric Center 3070 Kortenberg, Belgium Purgold, J., A.A.P.S.W., Research Associate (deceased) Department of Mental Health, University of Bristol 41 St. Michael's Hill, Bristol BS2 8DZ, United Kingdom Pyle, R.L., M.D., Associate Professor Department of Psychiatry, University of Minnesota Mayo Box 393, 420 Delaware Street S.E.L. Minneapolis, MN 55455, USA Quadflieg, N., Dipl. Psych. Abteilung fur Psychiatrie, Universitat Miinchen W-8000 Miinchen, FRG Rathner, G., Dr. Psychotherapeutische Abteilung UniversiHitsklinik fur Kinderheilkunde UniversiHit Innsbruck AnichstraBe 35, 6020 Innsbruck, Austria Russell, G.F.M., M.D., Professor Department of Psychiatry, University of London Bethlehem Royal Hospital and Maudsley Hospital Institute of Psychiatry, De Crespigny Park Denmark Hill, London SE5 8AF, United Kingdom Rief, W., Dr. Psychosomatische Klinik Roseneck Am Roseneck 6, W-821O Prien, FRG Sarembe, E., Dr. Abteilung fur Endokrinologie Medizinische U niversitatsklinik Bergheimer StraBe 58, W-6900 Heidelberg, FRG Schellberg, D., Dipl. Psych. Psychosomatische Klinik Zentralinstitut fur Seelische Gesundheit J5, W-6800 Mannheim 1, FRG

13 XVI List of Contributors Schepank, H., Prof. Dr. Psychosomatische Klinik Zentralinstitut fur Seelische Gesundheit J5, W-6800 Mannheim 1,.FRG Seidel, R., Dr. Psychiatrische Universitats-Poliklinik fur Kinder und Jugendliche, Universitat Zurich FreiestraBe 15, 8028 Zurich, Switzerland Seilkopf, S., Dr. Abteilung fur Allgemeine Klinische und Psychosomatische Medizin, Medizinische Universitatsklinik Bergheimer StraBe 58, W-6900 Heidelberg, FRG Sohlberg, S., Ph.D. Department of Clinical Psychology, Uppsala University P.O. Box 1225, Uppsala, Sweden Steinhausen, H.-C., Prof. Dr. Psychiatrische U niversitats-poliklinik fur Kinder und Jugendliche, Universitat Zurich FreiestraBe 15, 8028 Zurich, Switzerland Theander, S., M.D., Docent Department of Psychiatry, University Hospital Lund, Sweden Tolstrup, K., M.D., Professor (em.) Department of Child Psychiatry, University of Copenhagen Osterbrogade 212, 2100 Copenhagen, Denmark Vandereycken, W., M.D., Ph.D., Professor Department of Psychology, University of Leuven Leuvenselaan 85, 3300 Tienen, Belgium van Deth, R., Dip!. Psych. Gans 17, 2381 KA Zoeterwoudel, The Netherlands Vassilas C.A., M.D., Ch.B., M.Phi!., M.R.C. Psych. Lecturer in Mental Health and Honorary Senior Registrar University of Bristol 41 St. Michael's Hill, Bristol BS2 8DZ, United Kingdom Wittern, M., Dr. SchemannstraBe 5b, W-2000 Hamburg 67, FRG

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