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Fetal Alcohol Syndrome Diagnosis, Epidemiology, Prevention, and Treatment Kathleen Stratton, Cynthia Howe, Frederick Battaglia, Editors Committee to Study Fetal Alcohol Syndrome Division of Biobehavioral Sciences and Mental Disorders INSTITUTE OF MEDICINE NATIONAL ACADEMY PRESS Washington, D.C. 1996
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Page ii NATIONAL ACADEMY PRESS • 2101 Constitution Ave., N.W. • Washington, D.C. 20418 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competencies and with regard for appropriate balance. This report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this the Institute acts under the Academy's 1863 congressional charter responsibility to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Kenneth I. Shine is President of the Institute of Medicine. The project was supported by funds from the National Institute on Alcohol Abuse and Alcoholism (contract no. NO1-AA-4-1002). Library of Congress Cataloging-in-Publication Data Institute of Medicine (U.S.). Division of Biobehavioral Sciences and Mental Disorders. Committee to Study Fetal Alcohol Syndrome. Fetal alcohol syndrome: diagnosis, epidemiology, prevention, and treatment / Committee to Study Fetal Alcohol Syndrome, Division of Biobehavioral Sciences and Mental Disorders, Institute of Medicine; Kathleen Stratton, Cynthia Howe, and Frederick Battaglia, editors. p. cm. "The project was supported by funds from the National Institute on Alcohol Abuse and Alcoholism (contract no. NO1-AA-4-1002)"T.p. verso. Includes bibliographical references and index. ISBN 0-309-05292-0 1. Fetal alcohol syndrome. I. Stratton, Kathleen R. II. Howe, Cynthia J. III. Battaglia, Frederick C., 1932- . IV. National Institute on Alcohol Abuse and Alcoholism (U.S.) V. Title. [DNLM: 1. Fetal Alcohol Syndrome. WQ 211 I59f 1995] RG629.F45I57 1995 618.3'268dc20 DNLM/DLC for Library of Congress 95-49289 CIP Copyright 1996 by the National Academy of Sciences. All rights reserved. First Printing, April 1996 Printed in the United States of America. Second Printing, October 1997 The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The image adopted as a logotype by the Institute of Medicine is based on a relief carving from ancient Greece, now held by the Staatlichemuseen in Berlin.
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Page iii COMMITTEE TO STUDY FETAL ALCOHOL SYNDROME Frederick C. Battaglia,* Chair, Professor of Pediatrics, University of Colorado Health Sciences Center, Denver, CO Hoover Adger, Associate Professor, General Pediatrics/Adolescent Medicine, Johns Hopkins School of Medicine, Baltimore, MD Nancy C. Andreasen,* Professor of Psychiatry, Mental Health Clinical Research Center, The University of Iowa, Iowa City, IA Kathleen M. Carroll, Assistant Professor of Psychiatry, Director of Psychotherapy Substance Abuse Center, Yale University School of Medicine, New Haven, CT Sterling K. Clarren, Professor of Pediatrics, Division of Congenital Defects, Children's Hospital and Medical Center, University of Washington, Seattle, WA Claire D. Coles, Associate Professor, Department of Psychiatry/Pediatrics, Emory University School of Medicine, Atlanta, GA Henry W. Foster, Jr.,* Professor, Obstetrics and Gynecology, Meharry Medical College, Nashville, TN Donald E. Hutchings, Research Scientist, Department of Psychobiology, New York State Psychiatric Institute, New York, NY Philip A. May, Professor of Sociology and Psychiatry, and Director, Center on Alcoholism, Substance Abuse and Addictions, University of New Mexico, Albuquerque, NM Bennett A. Shaywitz, Professor of Pediatrics, Neurology and Child Study Center, Yale University School of Medicine, New Haven, CT Robert J. Sokol, Dean, School of Medicine, Professor, Obstetrics and Gynecology, Wayne State University, Detroit, MI R. Dale Walker, Professor, Department of Psychiatry and Behavioral Sciences, University of Washington, VA Medical Center, Seattle, WA Joanne Weinberg, Professor of Anatomy, University of British Columbia, Vancouver, BC, Canada Sharon C. Wilsnack, Chester Fritz Distinguished Professor, Department of Neuroscience, University of North Dakota School of Medicine, Grand Forks, ND * Member, Institute of Medicine
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Page iv Project Staff Kathleen R. Stratton, Project Director Cynthia J. Howe, Program Officer Dorothy R. Majewski, Project Assistant Shanta Henderson, Intern Jamaine Tinker, Financial Associate Constance M. Pechura, Director,Division of Biobehavioral Sciences and Mental Disorders Michael A. Stoto, Director, Division of Health Promotion and Disease Prevention
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Page v Preface The last 20 years have brought home to most Americans the profound impact of substance abuse on individuals, their families, and society. Most extended families have had some experience with this problem. We are only recently becoming more aware of the terrible effects of substance abuse on pregnant women and their unborn children. Of all current substance abuse, alcohol is the most serious problem by far, whether judged by its frequency or by its capacity to injure the fetus. In its most obvious form, it leads to a constellation of findings in the infant that are referred to as the fetal alcohol syndrome (FAS). Because of concerns about the magnitude of the problem, the U.S Congress mandated this study, under the auspices of the Institute of Medicine (IOM) of the National Academy of Sciences. From the outset, the committee was aware of treading on new ground in addressing alcohol abuse during pregnancy since the approach used in this study might serve as a paradigm for other studies of substance abuse in pregnancy. What are the unique characteristics of alcohol abuse in pregnancy that make it such a challenge for medicine and for society in general? First, this is not a disease that affects only the child with FAS; it involves both the mother and her baby. FAS is a classic example of a family problem. A mother who abuses alcohol needs and deserves treatment for this problem, not only during pregnancy but afterward. If she continues to be alcohol-dependent she may very well die from the disease in a few years and, in the interim, have additional affected pregnancies. Alcohol abuse affects her ability to care properly for her children throughout childhood. The affected child needs continued
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Page vi medical care aimed at minimizing any of the developmental handicaps imposed by FAS. As with many birth defects, optimal care requires coordinated effort from many groups, including providers of health care, social services, and schools. Secondly, as with many risk factors for a fetus, whether influenced by maternal behavior (e.g., infection with sexually transmitted diseases) or not (e.g., inborn errors of metabolism), if the mother does not receive treatment the effects can be amplified by recurrence, that is by births to that mother of additional affected children, or by the childrenwhen they reach reproductive agebearing affected infants of their own. Given these effects of alcohol abuse during pregnancy, the committee addressed the issue of updating the diagnostic criteria that should be used for FAS. We were concerned that, without well-defined criteria, any developmental delay or behavioral abnormality in children whose mothers had any level of alcohol intake might lead to inappropriate labeling with the FAS diagnosis. The criteria recommended are as close as possible to those commonly used by workers in this field and, at the same time, follow the guidelines generally used for setting diagnostic criteria in other areas of medicine. A consideration of diagnostic criteria brought out the fact that many infants with FAS are not being diagnosed at birth, either because they cannot be or because professionals do not have the tools and training to do so. Pattern recognition is part of the diagnostic criteria in a disease of dysmorphogenesis. In this case it involves recognition of the pattern of facial abnormalities and of the neurobehavioral and developmental characteristics associated with FAS. Who is to be trained for diagnosis in the newborn period, or at any time in childhood? This is an important issue when one considers surveillance approaches that might be applicable on a public health basis. The committee was impressed that this area needs some focused clinical research before widespread surveillance approaches can be recommended. Such research and field testing is considered an urgent priority. Also relevant to both diagnosis and prevention is the issue of whether there are problems of development or behavior from any alcohol intake, no matter how low, during pregnancy. Since this is not yet known, the committee focused on the constellation of infant problems for which good evidence exists of a relationship with maternal abuse of alcohol. There have been excellent reviews of animal studies relating to FAS. For this reason, the report does not include a detailed review of this topic. Animal models have been established, and studies at the levels of integrative physiology and cell biology have contributed substantially to our understanding of some aspects of the disease. The report attempts to place these basic studies in context in terms of their contribution to our understanding of pathogenesis and prevention. For example, basic research contributed to our understanding of FAS by firmly establishing alcohol as a teratogen. It was also important in highlighting those organ systems likely to be most affected during in utero development. In
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Page vii terms of developmental timing, basic research established the important concept that alcohol can injure the fetus, particularly the central nervous system, not only during embryogenesis, but also later in pregnancy. It was clear to the committee that there are many areas in which additional basic research could make substantial contributions to our understanding of the relationship of dosage, developmental timing, genetic susceptibility, gender differences, and differences in tolerance imposed by the endocrine changes of pregnancy. Such research could contribute by pointing toward additional therapeutic approaches that might be used during pregnancy. The sections on prevention and treatment once again emphasize that two patients must be considered. Treatment of alcohol abuse and dependence in a pregnant woman is also prevention of FAS in her fetus. The committee wrestled with the difficulty that universal prevention methods appear to have an impact on women with low or moderate alcohol intake but no impact on women who abuse alcohol. Yet, it is this latter group that produces infants with FAS and related problems. Thus, targeting specific prevention and treatment approaches to this latter group is vital if we are to reduce the incidence of FAS. Unfortunately, currently there is little evidence of successful approaches. Too often, we have assumed that whatever works in men who abuse alcohol will work in women who abuse alcohol. This is another area in which clinical research, with strong evaluation components, needs to be implemented. Treatment of the child begins whenever FAS (or a related disorder) is recognized. The later this recognition occurs in development, the less success treatment protocols will have. For this reason, training medical staff and other gatekeepers in pattern recognition and appropriate history taking in pregnancy is of paramount importance. As with many birth defects, there is a tendency to assume that the damage is done by the time the infant is born. However, this report brings out the lack of knowledge about how much subsequent developmental difficulty is due to actual organic injury at birth, how much is due to the chaotic environment in which most of these children are raised, and how much could be ameliorated by appropriate postnatal intervention and treatment. Such children should not be "discarded" by society and if, as a society, we are sincere in this belief, then the same multidisciplinary approach to their treatment and schooling should be applied as has been used for other birth defects, including joint planning and communication between medical and social services on the one hand and school systems on the other. Stability of the family environment in which the child is reared is necessary for all children, but is often not available to these children. Furthermore, even when these children are raised in stable foster or adoptive homes, appropriate treatment and schooling are often not available. It is evident throughout the report that fetal alcohol syndrome tests our ability to provide integrated services that cut across medical disciplines to the mother and child. It also presents major challenges to integrating school and support services for these children. The treatment section of the report emphasizes
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Page viii that, where it is uncertain whether developmental and behavioral characteristics are associated with permanent organic injury, children should be given the benefit of the doubt and have access to treatment measures that may substantially improve their outcome. This has been true, over and over again, for other birth defects, and there is no evidence that suggests it will not prove true for FAS. I would like to acknowledge the diligence of the committee members and thank them for their efforts. Each contributed in a unique way, bringing both area-specific expertise and a broader perspective to the problem. I enjoyed our challenging discussions. I would also like to thank the IOM staff: Kathleen Stratton for her guidance and coordination of committee activities and her patience at seeing this activity through, Constance Pechura for her perspective and help in putting our ideas into words, Dorothy Majewski for arranging our meetings and transcribing our scribbled edits, and Cynthia Howe for doing whatever needed to be done and her attention to detail. Federick C. Battaglia, M.D. Chair Committee to Study Fetal Alcohol Syndrome
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Page ix Acknowledgments The committee wishes to acknowledge the dedication and hard work of the following staff members of the National Research Council and the Institute of Medicine in the completion of this project: Laura Baird, Rhashida Beynum, Claudia Carl, Moeen Darwiesh, Michael Edington, Melvin Hairston, Kathi Hand, Carrie Ingalls, Sandra McDermin, Francesca Moghari, Carolyn Peters, Florence Poillon, Barbara Kline Pope, Terri Scanlan, Mary Lee Schneiders, Sally Stanfield, Carlton Stewart, Nancy Stoltzfus, Donna Thompson, Jamaine Tinker, and Sue Wyatt. The committee also wishes to express its gratitude to the following individuals who have assisted in various ways: Ernest Abel, Mary Applegate, Susan Astley, Thomas Babor, Marvin Bailey, Nancy Day, Peter Delaney, Edward Dembowski, Herman Diesenhaus, Thomas Donaldson, Grace Egeland, Robert Fineman, Louise Floyd, Laurie Foudin, Freda Giblin, Rebecca Goodemoot, Paula Hallberg, John Hannigan, Michelle Herron, Vicki Hild, Charlene Hill-Hamilton, Joseph Hollowell, Gail Houle, Jan Howard, Matthew Howard, Richard Johnston, Michael Katz, Michelle Kiely, Michael Kramer, Valborg Kvigne, Dow Lambert, Jane Lockmuller, Steven Long, Susan Lorenzo, Spero Manson, Ellen Marks, John Middaugh, April Montgomery, Barbara Morse, Patti Munter, Gail Shur, Ann Umemoto, Kay VanderVan, Patricia Silk Walker, Kenneth Warren, Maureen Weeks, Nancy J. White, Margaret Wilmore. We have endeavored to recognize the contributions of all who have assisted the committee throughout the course of this project and any omissions were not intentional.
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Page xi Contents EXECUTIVE SUMMARY 1 1 INTRODUCTION 17 History 17 The Federal Responsibility for FAS Research 21 Congressional Interest 23 The Committee's Focus and Process 26 Some Important Definitions 29 2 ISSUES IN RESEARCH ON FETAL DRUG EFFECTS 33 Principles of Teratology and Developmental Toxicology 36 Susceptible Stages of Development 37 Susceptible Species and Genotype 40 Dose-Response Effects 41 Intervention and Prevention 45 A Multifactorial Model 47 3 VIGNETTES 52 Sally 53 Ann 54 Lydia 55 Mark and James 56 Peter 58 Mary 60 Baby Herbert's Mother 61
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Page xii 4 DIAGNOSIS AND CLINICAL EVALUATION OF FETAL ALCOHOL SYNDROME 63 Purpose of Medical Diagnoses 63 Use of Diagnostic Criteria 64 Standards for Evaluating Diagnostic Criteria 64 Issues in Deciding on Diagnostic Criteria 66 Specific Issues to Be Addressed in Identifying Criteria for Fetal Alcohol Syndrome 67 Evolution of the Diagnosis of Fetal Alcohol Syndrome 70 Longitudinal Perspectives on the FAS Diagnosis 73 Diagnostic Categories 74 Differential Diagnosis 79 Clinical Utility of FAS, ARBD, and ARND Diagnoses 79 Recommendations: Diagnostic Criteria 80 5 EPIDEMIOLOGY AND SURVEILLANCE OF FETAL ALCOHOL SYNDROME 82 Incidence and Prevalence of FAS, ARBD, ARND 82 Surveillance Methods for Fetal Alcohol Syndrome 91 Conclusions and Recommendations 97 6 EPIDEMIOLOGY OF WOMEN'S DRINKING 100 Methodologic Considerations 101 Definitions and Patterns of Drinking Among U.S. Women 105 Needed Research on Pregnant Women's Drinking 107 Conclusions and Recommendations 109 7 PREVENTION OF FETAL ALCOHOL SYNDROME 112 A Public Health Model of Prevention 113 Universal Prevention Interventions 116 Selective Prevention Interventions 120 Indicated Prevention Interventions 135 Maintenance and Aftercare 142 Program Evaluation 142 Public Health Service-Funded Research 144 Summary 145 Recommendations 146 8 THE AFFECTED INDIVIDUAL: CLINICAL PRESENTATION, INTERVENTION, AND TREATMENT 154 Clinical Issues in Individuals with FAS, ARBD, or ARND 156 Intervention and Prevention of Secondary Disabilities 173 Limitations and Barriers to the Provision of Services 181
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Page xiii Summary: Intervention and Treatment 184 Recommendations 185 9 INTEGRATION AND COORDINATION: A CONCLUDING COMMENT AND RECOMMENDATION 194 APPENDIX: BIOGRAPHIES 197 INDEX 203
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Page xiv Fetal Alcohol Syndrome
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Page xv Fetal Alcohol Syndrome
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