Gulf War Veterans

Measuring Health

Lyla M. Hernandez, Jane S. Durch, Dan G. Blazer II, and Isabel V. Hoverman, Editors

Committee on Measuring the Health of Gulf War Veterans

Division of Health Promotion and Disease Prevention

INSTITUTE OF MEDICINE

NATIONAL ACADEMY PRESS
Washington, D.C.



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Gulf War Veterans Measuring Health Lyla M. Hernandez, Jane S. Durch, Dan G. Blazer II, and Isabel V. Hoverman, Editors Committee on Measuring the Health of Gulf War Veterans Division of Health Promotion and Disease Prevention INSTITUTE OF MEDICINE NATIONAL ACADEMY PRESS Washington, D.C.

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NATIONAL ACADEMY PRESS 2101 Constitution Avenue, 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 competences and with regard for appropriate balance. 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 its own initiative in identifying issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine. Support for this study was provided by the Departments of Defense (Contract No. DASW01-98-K-0002) and Veterans Affairs (Contract No. V101[93]P-1580). The views presented are those of the Institute of Medicine Committee on Measuring the Health of Persian Gulf Veterans and are not necessarily those of the funding organization. International Standard Book Number 0-309-06580-1 Additional copies of this report are available for sale from: National Academy Press Lockbox 285 2101 Constitution Avenue, N.W. Washington, DC 20055 Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area) or visit the NAP's on-line bookstore at www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at www2.nas.edu/iom. Copyright 1999 by the Institute of Medicine. All rights reserved. Printed in the United States of America 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 Staatliche Museen in Berlin.

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Committee on Measuring the Health of Persian Gulf Veterans DAN BLAZER, II, M.D., Ph.D., M.P.H. (Cochair), Dean of Medical Education and Professor of Psychiatry and Community and Family Medicine, Office of the Dean, Duke University Medical Center, Durham, N.C. ISABEL V. HOVERMAN, M.D. (Cochair), Austin Internal Medicine Associates, L.L.P., Austin, Texas, and Clinical Assistant Professor of Medicine, University of Texas Medical Branch, Galveston MARTHA C. BEATTIE, Ph.D., Director of Research and Evaluation, Department of Alcohol and Drug Services, Santa Clara County, Calif., and Scientist, Alcohol Research Group, Berkeley, Calif. PENNIFER ERICKSON, Ph.D., Associate Professor, Department of Health and Evaluation Services, Hershey Medical School, Pennsylvania State University, State College NELSON GANTZ, M.D., Chairman, Department of Medicine, and Chief, Division of Infectious Diseases, Pinnacle Health Hospitals, Harrisburg, Pa., and Allegheny University of the Health Sciences RICHARD M. GARFIELD, Dr. P.H., R.N., Bendixen Professor of Clinical International Nursing, Columbia University, New York WILLIAM GOLDEN, M.D., Director, Division of General Internal Medicine, University of Arkansas for Medical Sciences, Little Rock KATHLEEN N. LOHR, Ph.D., Director, Health Services and Policy Research, Research Triangle Institute, Research Triangle Park, N.C. DAVID NERENZ, Ph.D., Director, Center for Health System Studies, Henry Ford Health System, Detroit, Mich. DONALD L. PATRICK, Ph.D., M.S.P.H., Professor, Department of Health Services, School of Public Health and Community Medicine, University of Washington, Seattle ROBERT O. VALDEZ, Ph.D., Professor, Health Policy and Management, University of California at Los Angeles School of Public Health Board on Health Promotion and Disease Prevention Liaison ROBERT B. WALLACE, M.D., Professor of Preventive and Internal Medicine, Department of Preventive Medicine, University of Iowa, Iowa City Staff LYLA M. HERNANDEZ, M.P.H., Study Director JANE S. DURCH, M.A., Senior Program Officer KELLY NORSINGLE, Project Assistant CARA N. CHRISTIE, Project Assistant KATHLEEN R. STRATTON, Ph.D., Director, Division of Health Promotion and Disease Prevention DONNA D. DUNCAN, Division Assistant

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Preface Many individuals, groups, and federal agencies have a strong interest in finding answers to the numerous and complex questions regarding the health of Gulf War veterans. Various types of research and health measurement are needed to address these diverse issues. The Institute of Medicine (IOM) was asked by the Department of Veterans Affairs (VA) and the Department of Defense (DoD) to undertake a study to identify important questions concerning the health of Gulf War veterans and then to design a study to answer those questions. The committee determined that it is of fundamental importance to ask how healthy are Gulf War veterans? Are they as healthy as others? What characteristics are associated with differences between the health of Gulf War veterans and the health of others? To address these questions, it will be necessary to measure not only the health status of those who served in the Gulf War, but also to compare Gulf War veterans with other groups. Further, one must continue to follow these groups through time to determine whether the groups differ in the way their health status is changing. As the committee began to develop a design that would address the fundamental questions identified, it realized that such a study could have important implications for understanding not only the health of Gulf War veterans, but also the health of veterans of other conflicts. There exists a rich body of literature on the health effects of participation in specific conflicts prior to the Gulf War, including World War II and Vietnam. Research has examined the health effects of exposure to mustard gas and Agent Orange and the long-term health consequences for those who were prisoners of war. More recently, there has been renewed interest in studying poorly understood, multisymptom clusters that have been reported following every conflict since the U.S. Civil War. Similar health problems have been reported by some Gulf War veterans. Questions are beginning to emerge about whether there are

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health effects that are attributable to participation in military conflict in general, as well as to service in specific conflicts. The committee recognizes that the study it is recommending will be challenging and that it will require a sustained commitment of resources by VA and DoD, and of time and cooperation by study participants. Nevertheless, we feel that these commitments are important and worthwhile if the nation is to adequately understand and respond to the health needs of Gulf War veterans. In fact, the study designed by the committee to focus on Gulf War veterans could, with slight modification, be used to longitudinally monitor the health status of veterans of any conflict. Additionally, if a cohort were identified and the study begun immediately upon return from participation in a conflict, many of the problems we face in attempting to resolve Gulf War veterans health issues, several years removed from the end of that conflict, could be eliminated. The committee believes that such efforts would contribute greatly to our understanding of the impact of military conflict on the health of the men and women who serve in those conflicts. In closing, we note that this committee's work complements that of several other current studies at the IOM and the National Academy of Sciences. A study on strategies to protect the health of deployed U.S. forces is scheduled for completion of the first phases in the fall of 1999 and is addressing health risk assessment and issues related to health protection, health consequences and treatment, and medical record keeping in the U.S. military services. The study of the health effects of Gulf War exposures has recently begun and will review the scientific and medical literature regarding adverse health effects associated with exposures experienced during the Gulf War. This study will include an assessment of biologic plausibility that exposures, or synergistic effects of combinations of exposures, are associated with illnesses experienced by Gulf War veterans. We want to thank the many people, listed by name in the Acknowledgments, who contributed to this study. As cochairs of this committee, we wish to express our appreciation to the members of the committee for their insight, creativity, and hard work in developing the study approaches and methods recommended in this report. We also wish to commend Lyla Hernandez and Jane Durch for their enormous effort in producing a clearly written, well-organized report that reflects the collective thought of the committee. DAN G. BLAZER, II ISABEL V. HOVERMAN COCHAIRS

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Acknowledgments The committee wishes to express its appreciation to the many individuals who contributed in various ways to the completion of this project. Naihua Duan, consultant to the committee, provided advice and, with Robert O. Valdez, wrote an exceptional detailed discussion of design issues to be considered in developing the Gulf War Veterans Health Study. This information appears as Appendix B in this report. Presenters at the May 1998 workshop provided an excellent overview of the health concerns of Gulf War veterans and of research efforts aimed at better understanding those concerns. The presenters were: David Cowan, Nancy Dalagar, Albert Donnay, COL John T. Graham, CAPT Gregory Gray, MAJ Charles Engel, COL Bruce Jones, Han K. Kang, Mark Meterko, Frances M. Murphy, LTC Mark Rubertone, and David A. Schwartz. Additional information was provided by Matthew Puglisi. This report has been reviewed by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council's Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the authors and the Institute of Medicine in making the published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The content of the review comments and draft manuscripts remain confidential to protect the integrity of the deliberative process. The committee thanks the following individuals for their participation in the review of this report: Gerard N. Burrow, M.D., Yale University School of Medicine; Bradley N. Doebbeling, M.D., University of Iowa College of Medicine; Edward B. Perrin, Ph.D., University of Washington; Dana Gelb Safran, Sc.D., New England Medical Center; and Jonathan M. Samet, M.D., Johns Hopkins University.

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Although the individuals listed above have provided many constructive comments and suggestions, responsibility for the final content of this report rests solely with the authoring committee and the IOM.

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Contents     Executive Summary   1     Committee Charge,   3     Conclusions and Recommendations,   6     Summary,   10 1   Introduction   12     VA and DoD Programs for Gulf War Veterans,   13     Gulf War Reports and Evaluations: A Brief Summary,   17     Measuring the Health of Gulf War Veterans,   20     Defining Gulf War Veterans,   22     Structure of Report,   23 2   Studies of the Health of Gulf War Veterans   24     Introduction,   24     Specific Studies of Gulf War Veterans,   25     Limitations of Previous Studies,   36     Remainder of this Report,   37 3   Measure Health   38     The Evolving Definition of Health,   38     Core Concepts of Health,   40     Correlates of Health,   45     Measuring Health-Related Quality of Life,   48     Summary,   54 4   The Gulf War Veterans Health Research Portfolio   55     Research Portfolio to Guide Studies of the Health of Gulf War Veterans,   55     Summary,   61

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5   Gulf War Veterans Health Study   63     Study Questions and Design,   64     Sampling,   67     Scheduling,   70     Mode of Survey,   71     Improving Response Rates,   71     Pilot Study,   75     Data Collection Instruments,   76     Cost,   78     Ethical Considerations,   79     Independent Advisory Board,   80     Summary,   81 6   Conclusion   83     References   87 Appendix A:   Coalition Forces and Force Strength   95 Appendix B:   Design Issues in the Gulf War Veterans Health Study   96