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Adequacy of the VA Persian
Gulf Registry and Uniform
Case Assessment Protocol
Committee on the Evaluation of the Department of Veterans
Affairs Unifonn Case Assessment Protocol
Division of Heady Promotion and
Disease Prevention
INSTITUTE OF MEDICINE
IOM
NATIONAL ACADEMY PRESS
Washington, D.C. 1998
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NATIONAL ACADEMY PRESS · 2101 Constitution Avenue, N.W. · Washington, DC 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 appropriate professions in the examination of policy
matters pertaining to the health of the public. In this, the Institute acts under both 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 the president of the Institute of Medicine.
This study was supported by the Department of Veterans Affairs under Contract Number
V101~93)P-1580. The views presented are those of the Institute of Medicine Committee
on the Evalution of the Department of Veterans Affairs Uniform Case Assessment
Protocol and are not necessarily those of the funding organization.
International Standard Book No. 0-309-06046-X
Additional copies of this report are available for sale from:
National Academy Press
2101 Constitution Avenue, N.W.
Box 285
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 http://www.nap.edu.
For more information about the Institute of Medicine, visit the IOM home page at
http :I/www2.n as.ed u/io m.
Copyright 1998 by the National Academy of Sciences. All rights reserved.
Printed in the United States.
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 serpent adopted as a
logotype by the Institute of Medicine is a relief carving from ancient Greece, now held
by the Staatliche Museen in Berlin.
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COMMITTEE ON THE EVALUATION OF THE DEPARTMENT OF
VETERANS AFFAIRS UNIFORM CASE ASSESSMENT PROTOCOL
Arthur K Asbury, M.D. (ChairJ, Van Meter Professor of Neurology, Hospital of
the University of Pennsylvania, Philadelphia
Dan G. Blazer, II, M.D., Ph.D., M.P.H., Dean of Medical Education and J.P.
Gibbons Professor of Psychiatry and Community and Family Medicine, Office
of the Dean, Duke University Medical Center, Durham, North Carolina
Dedra Stefanie Buchwald, M.D., Associate Professor, Department of Medicine,
University of Washington, Harborview Medical Center, Seattle, Washington
Jerrold J. Ellner, M.D., Executive Vice Chair, Department of Medicine, Case
Western Reserve University, Cleveland, Ohio
William E. Golden, M.D., Director, Division of General Internal Medicine,
University of Arkansas for Medical Sciences, Little Rock, Arkansas
Bonnie Lepper Green, Ph.D., Professor of Psychiatry, Department of Psychiatry,
Georgetown University Medical School, Washington, D.C.
Isabel V. Hoverman, M.D., Austin Internal Medicine Associates, L.L.P., Austin,
Texas and Clinical Assistant Professor of Medicine, University of Texas
Medical Branch, Galveston, Texas
Karl T. Kelsey, M.D., M.O.H., Associate Professor of Occupational Medicine,
Harvard School of Public Health, Boston, Massachusetts
David L. Olive, M.D., Department of Obstetrics and Gynecology, Yale University
School of Medicine, New Haven, Connecticut
Bernard M. Rosof, M.D., F.A.C.P., Senior Vice President, Medical Affairs,
Huntington Hospital, Huntington, New York
Board on Health Promotion and Disease Prevention Liaison
Elena O. Nightingale,* Scholar-in-Residence, Institute of Medicine and Board on
Children, Youth and Families, Washington, D.C.
Board on Neuroscience and Behavioral Health Liaison
William E. Bunney, Jr.,* Distinguished Professor and Della Martin Chair of
Psychiatry, University of California, Irvine, California
Staff
Lyla M. Hernandez, Study Director
Donna D. Thompson, Division Assistant
Sanjay S. Baliga, Research Associate
Donna M. Livingston, Project Assistant
Kathleen R. Stratton, Director, Division of Health Promotion and Disease
Prevention
Constance M. Pechura, Director, Division of Neuroscience and Behavioral Health
*
Member Institute of Medicine.
. . .
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Preface
This report is the third in a series of efforts by the Institute of Medicine to
review the protocols used by the DeparOnent of Veterans Affairs (VA) and the
Department of Defense (DoD) to diagnose the health complaints of Persian Gulf
veterans. The first IOM review began in September 1994 and focused on the
DoD implementation of the protocol which is referred to as the Comprehensive
Clinical Evaluation Program (CCEP). This diagnostic protocol had been jointly
developed and simultaneously implemented in mid-1994 by the VA and the
DoD. The early initiation of this review provided the opportunity to analyze
information on health complaints and programs collected from the very
beginning of the implementation process. In January 1996, the committee
issued a final report assessing the adequacy of the clinical procedures described
in Me protocol, and providing detailed recommendations to DoD for refining the
original clinical approach.
The second IOM review initiated in July 1996 again focused on the DoD
protocol, this time regarding the diagnosis of difficult-to-diagnose and ill-
defined conditions, stress and psychiatric disorders, and health complaints that
might be related to low-level exposure to nerve agents. Detailed information
available from the existing data system was essential for conducting this
evaluation on specific diagnoses in these areas. The final report was published
in January 1998.
This third review differs from previous efforts in two key respects. First,
this committee was charged with a much broader task. In conducting this
v
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V1
PREFACE
review of the diagnosis of health problems of Persian Gulf veterans, we were
asked to examine the VA health care delivery system, a system which differs
markedly from that of DoD in both size and patient population. This analysis of
the system included evaluating (1) the adequacy of the protocol as a diagnostic
toolfor the broad range of medical assessment needs of Persian Gulf veterans,
not for specific clinical diagnoses, (2) how well the program was implemented
including the process for patients referrals, (3) VA outreach activities, and (4)
VA provider education.
The timing of this review is a second critical difference. Because the
committee began deliberations in February 1997, almost two and a half years
after the initial review of the DoD protocol, we had the opportunity to draw
upon and benefit from both the IOM evaluations and additional information not
heretofore available. For example, information was available reflecting nearly
three years of VA experience in implementing the protocol, we could solicit
new information from VA facilities regarding the strengths and challenges of
the protocol, and we could draw upon recent research literature on health
problems of Persian Gulf veterans and on advances made in developing clinical
practice guidelines and pathways aimed at improving efforts to diagnose health
complaints. The committee was, therefore, in an excellent position to evaluate
the adequacy of the system used by the VA to identify and diagnose the health
complaints of Persian Gulf veterans.
Thus, the recommendations of this report are different from those of
previous reports, not only because of the much broader scope of He
committee's charge, but also because of recent advances in clinical practice
guidelines and quality evaluation approaches, and because of new information
available to the committee about the strengths and challenges of the ongoing
system. The earlier IOM studies provided important recommendations for
implementing and improving the DoD and VA protocol. But any serious
evaluation of an ongoing diagnostic screening program will lead, ultimately, to
new and improved generations of protocols and systems. The timing and
resources available to this committee allowed us to develop recommendations
toward that end.
Arthur K. Asbury, M.D.
Chair, Committee on the Evaluation of the Department of
Veterans Affairs Uniform Case Assessment Protocol
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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. Those who
made time in busy schedules to meet with us during our VA facility site visits
include Mack Anderson, Kimberly Arlinghaus, Donald Barnes, William
Binkley, Tom Bird, Carol Bodenheimer, Thomas Bowen, Andrea Cohen, Tesfai
Gabre-Kidan, Arnold Gorin, Larry Hawkins, Steve Hunt, Raye Hurwitz, Susan
Killin, Shirley Laday-Smith, Sum Lee, Linda Lewis, Jeff Lindeman, Leonard
Marcella, Miles McFall, Patricia Ordorica, Jaime Ortiz-Toto, Warrenson Payne,
Tammy Porter, Ron Ratliff, Alfredo Rohaidy, Arthur Rosenblatt, Richard
Schrot, B.J. Searles, Phillip Shenefelt, Richard Silver, Charles Smith, Glenn
Smith, Philip While, John Wicher, Ruel Wiley, and Timothy Williams.
We are also grateful to the following individuals with whom the committee
met or from whom information was received: Mark A. Brown, Joseph S.
Cassells, Timothy Finnegan, Patricia Jones, Stuart Fleishman, Frances M.
Murphy, George Poindexter, Joan P. Porter, Matthew Puglisi, and Joseph
Violante. The committee also wishes to extend its thanks to the VA health care
facilities and the veterans service organizations who responded to our request
for information. We hope we have included all those who contributed to this
project. Any omission is inadvertent.
This report has been reviewed by individuals chosen for their diverse
perspectives and technical expertise, in accordance with procedures approved by
the NRC's Report Review Committee. The purpose of this independent review
. .
V11
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. . .
V111
ACKNOWLEDGMENTS
is to provide candid and critical comments that wiI1 assist the authors and the
IOM 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 manuscript
remain confidential to protect the integrity of the deliberative process. We wish
to thank the following individuals for their participation in the review of this
report: Mark R. Cullen, M.D., Yale University School of Medicine; Bernard D.
Goldstein, M.D., UMDNJ-Robert Wood Johnson Medical School; John E.
Helzer, M.D., University of Vermont College of Medicine; Richard T. Johnson,
M.D., Johns Hopkins University School of Medicine; Joseph P. Newhouse,
Ph.D., Harvard University; Herbert S. Rigberg, M.D., Health Services Advisory
Group, Inc.; and M. Donald Whorton, M.D., M.P.H., M. Donald Whorton,
M.D., Inc.
While 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 SUGARY
1 INTRODUCTION
2 THE INSTITUTE OF MEDICINE'S PERSIAN GULF ACTIVITIES
3 THE DEPARTMENT OF VETERANS AFFAIRS PERSIAN GULF
REGISTRY AND UNIFORM CASE ASSESSMENT PROTOCOL
Persian Gulf Registry, 21
Phase II: Unifonn Case Assessment Protocol, 22
Referral, 22
Data Collection and Reporting, 23
Personnel, 23
Performance Monitoring, 24
Descriptive Statistics, 24
Outreach, 26
Provider Education, 27
4 COMMITTEE ON THE EVALUATION OF THE DEPARTMENT
OF VETERANS AFFAIRS UNIFORM CASE ASSESSMENT
PROTOCOL
Site Visits, 29
Written Testimony, 31
1X
15
19
21
29
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x
FINDINGS AND RECOMMENDATIONS
Discussion, 33
Diagnostic Process, 34
Implementation and Administration, 42
Outreach, 48
Provider Education, 48
6 CONCLUSION
REFERENCES AND SELECTED BIBLIOGRAPHY
APPENDIXES
A Health Consequences of Service During the Persian Gulf War:
Initial Findings and Recommendations for Immediate Action
B Health Consequences of Service During the Persian Gulf War:
Recommendations for Research and Information Systems
Evaluation of the U.S. Department of Defense Persian Gulf
Comprehensive Clinical Evaluation Program: Overall Assessment
and Recommendations
D Adequacy of the Comprehensive Clinical Evaluation Program:
Nerve Agents
Adequacy of the Comprehensive Clinical Evaluation Program:
A Focused Assessment
VA Phase I Protocol
VA Phase II Protocol
Persian Gulf Registry Code Sheet
VA Persian Gulf Bi-Monthly Report
Examples of Persian Gulf Registry Follow-Up Letters
VA Monitoring Instrument for Appropriate Medical Care
Annual Persian Gulf Conference Agenda
M Site Visit Questions
N Summary of Responses to Requests for Information
O Questions Related to Traumatic Exposure
P Patient Satisfaction
CONTENTS
33
51
53
67
79
97
105
113
117
123
135
141
145
155
163
167
185
187
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Adequacy of Abe ~ Persian
Calf Registry gad firm
Case Assessment Protocol
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