GULF WAR and HEALTH
Treatment for
Chronic Multisymptom Illness
Committee on Gulf War and Health:
Treatment for Chronic Multisymptom Illness
Board on the Health of Select Populations
INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES
THE NATIONAL ACADEMIES PRESS
Washington, D.C.
www.nap.edu
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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.
This study was supported by Contract VA241-P-2024 between the National Academy of Sciences and the Department of Veterans Affairs. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the authors and do not necessarily reflect the views of the organizations or agencies that provided support for the project.
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Suggested citation: IOM (Institute of Medicine). 2013. Gulf War and Health: Treatment for Chronic Multisymptom Illness. Washington, DC: The National Academies Press.
THE NATIONAL ACADEMIES
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COMMITTEE ON GULF WAR AND HEALTH:
TREATMENT FOR CHRONIC MULTISYMPTOM ILLNESS
BERNARD M. ROSOF (Chair), Chairman, Board of Directors, Huntington Hospital, Huntington, NY
DIANA D. CARDENAS, Professor and Chair, Department of Rehabilitation Medicine, University of Miami Leonard M. Miller School of Medicine, Miami, FL
FRANK V. deGRUY, Woodward-Chrisholm Professor and Chair, Department of Family Medicine, University of Colorado School of Medicine, Aurora, CO
DOUGLAS A. DROSSMAN, Adjunct Professor of Medicine and Psychiatry, Center for Functional Gastrointestinal and Motility Disorders, University of North Carolina School of Medicine, and Drossman Center for the Education and Practice of Biopsychosocial Care, Chapel Hill, NC
FRANCESCA C. DWAMENA, Professor and Acting Chair, Department of Medicine, Michigan State University, East Lansing, MI
JAVIER I. ESCOBAR, Associate Dean for Global Health, University of Medicine & Dentistry of New Jersey, New Brunswick, NJ
WAYNE A. GORDON, Jack Nash Professor and Vice Chair, Department of Rehabilitation Medicine, Mount Sinai School of Medicine, New York, NY
ISABEL V. HOVERMAN, Physician, Austin Internal Medicine Associates, LLP, Austin, TX
WAYNE JONAS, President and CEO, Samueli Institute, Alexandria, VA
JOANNA G. KATZMAN, Associate Professor, Department of Neurosurgery, University of New Mexico School of Medicine, Albuquerque, NM
ELAINE L. LARSON, Associate Dean for Research, Columbia University School of Nursing, New York, NY
STEPHEN RAY MITCHELL, Dean of Medical Education, Georgetown University School of Medicine, Washington, DC
KAREN A. ROBINSON, Assistant Professor, Departments of Medicine, Epidemiology, and Health Policy and Management, Johns Hopkins University, Baltimore, MD
KASISOMAYAJULA VISWANATH, Associate Professor, Department of Society, Human Development, and Health, Harvard School of Public Health, Boston, MA
LORI ZOELLNER, Associate Professor, Department of Psychology, University of Washington, Seattle, WA
Reviewers
This report has been reviewed in draft form by persons 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 institution in making its published report as sound as possible and to ensure that the report meets institutional standards of objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We thank the following for their review of the report:
Niloofar Afari, University of California, San Diego
Melvin S. Blanchard, Washington University School of Medicine
Paul W. Brandt-Rauf, University of Illinois at Chicago School of Public Health
Sandro Galea, Columbia University Mailman School of Public Health
Naomi L. Gerber, George Mason University
Thomas V. Holohan, Clinical Evaluation, LLC; formerly Veterans Health Administration
David R. Nerenz, Henry Ford Health System
Eliseo J. Perez-Stable, University of California, San Francisco
Karen S. Quigley, Northeastern University and Edith Nourse Rogers Memorial VA Medical Center
Sandra J. W. Smeeding, Veterans Affairs Salt Lake City Health Care System
Nancy Fugate Woods, University of Washington School of Nursing
Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations, nor did they see the final draft of the report before its release. The review of the report was overseen by Lynn R. Goldman, Dean, the George Washington University School of Public Health and Health Services, and Enriqueta C. Bond, President Emeritus, Burroughs Wellcome Fund. Appointed by the National Research Council and the Institute of Medicine, respectively, they were responsible for making certain that an independent examination of the report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of the report rests entirely with the authoring committee and the institution.
Preface
The committee was convened to review, evaluate, and summarize the available scientific and medical literature regarding the best treatments for chronic multisymptom illness (CMI) in Gulf War veterans. We accepted that responsibility in recognition of the personal and family sacrifices that all soldiers—both deployed and nondeployed—undertake in times of conflict. About 700,000 military personnel served in the 1991 Gulf War, and as of September 2011, about 2.6 million military personnel had been deployed to the Iraq and Afghanistan wars. There is no script for the stresses that are endured; they are personal and many. The committee was most appreciative of the willingness of many veterans to share their experiences and thoughts with us so that we would be better prepared to move forward with our task. We undertook a thorough review of the studies1 already completed by the Institute of Medicine (IOM) on this general topic and then expanded the evidence base by conducting a systematic search of the available scientific and medical literature regarding the best treatments for CMI. The committee evaluated the evidence by using the scientifically rigorous process detailed in this report. As we approached the task at hand, we stood firm on the concerns for patient-centered care and our abilities to communicate our thoughts, conclusions, and recommendations to all interested audiences.
_____________
1IOM (Institute of Medicine). 2001. Gulf War Veterans: Treating Symptoms and Syndromes. Washington, DC: National Academy Press; IOM. 2010. Gulf War and Health, Volume 8: Update of Health Effects of Serving in the Gulf War. Washington, DC: The National Academies Press.
To focus our efforts, we defined CMI as the presence of a spectrum of chronic symptoms experienced for 6 months or longer in at least two of six categories—fatigue, mood and cognition, musculoskeletal, gastrointestinal, respiratory, and neurologic—that may overlap with but are not fully captured by known syndromes (such as irritable bowel syndrome, chronic fatigue syndrome, and fibromyalgia) or other diagnoses.
Our review of the literature revealed that specific etiologic agents or histopathologic findings often are not associated with such symptoms, and the causes of many of the symptoms ascribed to CMI remain unknown. However, the lack of diagnostic and etiologic clarity does not undermine the legitimacy of the reports of the symptoms. The multiple manifestations of the symptoms make directed treatment more challenging, and clinicians are often frustrated by the difficulties in managing care for people who have CMI. However, for veterans whose function and life satisfaction are limited by their symptoms, it remains no less important.
We hope that our recommendations will make a difference in the lives of people who have CMI. It is clear that this condition has adversely affected the health and well-being of a substantial number of our veterans and their families. Anecdotal reports appear regularly in the mass media.2 We encourage the Department of Veterans Affairs (VA) to apply the principles set forth in this report, including at a minimum adequate resources to ensure early entry into the VA health care system and adherence to the principles of patient-centered and compassionate care, shared decision making, and regular clinical follow-up as necessary. Our veterans deserve the very best health care.
The committee thanks everyone who presented and participated in discussions during the public meetings, which informed our work and helped us to develop our approach to and thought process regarding the statement of task. The wide variety of viewpoints were expressed during those information sessions provided valuable insight into the complexity of medical treatment for CMI in Gulf War veterans. The time and effort to travel to the public meetings and prepare written materials and statements are greatly appreciated.
The committee is particularly appreciative of the many Gulf War veterans who spoke and submitted written accounts of their experiences in the gulf and on their return to the United States. They provided valuable understanding of the symptoms and medical conditions of CMI and of medical treatment for it as experienced by the many men and women who served in the Gulf War.
The committee also owes a debt of gratitude to the following persons who traveled to and presented valuable information at our public meetings:
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2For example, Kristof, N. D. 2012. War wounds. New York Times, August 10, SR1.
Caroline Blaum, University of Michigan Health System; Daniel Clauw, University of Michigan Health System; Jeffery Dusek, Abbott Northwestern Hospital; Charles Engel, Deployment Health Clinical Center; Beatrice Golomb, University of California, San Diego, School of Medicine and San Diego VA Medical Center; Stephen Hunt, VA Puget Sound Health Care System; Kenneth Kendler, Virginia Commonwealth University; Kurt Kroenke, Regenstrief Institute; Ronald Poropatich, US Army Medical Research and Materiel Command; and Matt Reinhard, War-Related Illness and Injury Study Center, Washington, DC.
The committee thanks Patrick Furey of Consumersphere, a consultant who provided an analysis of the social media discussion surrounding CMI in veterans of the Gulf War. We also thank Michael Peterson and Terry Walters, of the VA Office of Public Health, for providing helpful background information.
I would like to thank the committee members for their time commitment to this important project, their diligence in reviewing every detail of complex issues, and their sensitivity to the concerns of our veterans. Finally, I thank the IOM staff for their thoroughness, knowledge, research expertise, and guidance throughout this journey to try to make a contribution to the understanding of a complex subject.
Bernard M. Rosof, Chair
Committee on Gulf War and Health:
Treatment for Chronic Multisymptom Illness
Contents
Prior Efforts to Address Chronic Multisymptom Illness in Gulf War Veterans
The Gulf War Veteran Population
Gulf War Veterans’ Experiences with Diagnosis of and Treatment for Chronic Multisymptom Illness
2 CHARACTERIZING CHRONIC MULTISYMPTOM ILLNESS
The Committee’s Working Definition of Chronic Multisymptom Illness
Chronic Multisymptom Illness in Civilian and Veteran Populations
Veteran vs Civilian Populations
Systematic Review of Treatments for Chronic Multisymptom Illness
Treatments for Comorbid Conditions with Shared Symptoms
Additional Sources of Information
Current Research on Chronic Multisymptom Illness
4 TREATMENT FOR CHRONIC MULTISYMPTOM ILLNESS
5 REVIEW OF TREATMENTS FOR COMORBID AND RELATED CONDITIONS
Functional Gastrointestinal Disorders: Irritable Bowel Syndrome and Functional Dyspepsia
Substance-Use and Addictive Disorders
6 PATIENT-CENTERED CARE OF VETERANS WHO HAVE CHRONIC MULTISYMPTOM ILLNESS
Clinician Training, Practice Behaviors, and Chronic Multisymptom Illness
Improving Communication Skills and the Patient–Clinician Relationship
7 IMPLEMENTATION AND MODELS OF CARE FOR VETERANS WHO HAVE CHRONIC MULTISYMPTOM ILLNESS
Gulf War Veterans’ Experience of Care
An Approach to Organizing Services for Care of Veterans Who Have Chronic Multisymptom Illness
Select Models of Care Used by Other Organizations
Disseminating Evidence-Based Guidelines Through the Department of Veterans Affairs System
Clinicians’ Behavior Change: System and Interpersonal Determinants
Treatments for Chronic Multisymptom Illness
Improving Care of Veterans Who Have Chronic Multisymptom Illness
Improving Data Collection and Quality
A Committee Biographic Sketches
B Possible Factors Underlying Chronic Multisymptom Illness
C Examples of Effective and Ineffective Patient–Clinician Discussions
Boxes, Figures, and Tables
BOXES
5-1 Definitions of Chronic Fatigue Syndrome
5-2 Rome III Diagnostic Criteria for Irritable Bowel Syndrome
5-3 Rome III Diagnostic Criteria for Functional Dyspepsia
5-4 Assessing for Suicidal Ideation
6-1 Additional Resources for Clinicians
7-1 Department of Veterans Affairs (VA) Health Care Enrollment Priority Groups
C-1 Example of an Ineffective Patient–Clinician Discussion
C-2 Example of an Effective Patient–Clinician Discussion, 209
FIGURES
3-1 Summary of search and review process
7-1 Institute for Healthcare Improvement Plan Do Study Act model
B-1 Putative mechanism by which the body perceives symptoms
TABLES
3-1 AHRQ’s Strength-of-Evidence Grades and Definition
4-1 Strength of Evidence on Pharmacologic Interventions
4-2 Pharmacologic Interventions
4-3 Strength of Evidence on Other Biologic Interventions
4-4 Other Biologic Interventions
4-5 Strength of Evidence on Psychotherapies
4-7 Strength of Evidence on Biofeedback Interventions
4-9 Strength of Evidence on Cognitive Rehabilitation Therapies
4-10 Cognitive Rehabilitation Therapy
4-11 Strength of Evidence on Complementary and Alternative Therapies
4-12 Complementary and Alternative Therapies
4-13 Strength of Evidence on Exercise Interventions
5-2 Stratification of Severity of Traumatic Brain Injury
AACH | American Academy on Communication in Healthcare |
ACP | American College of Physicians |
AHRQ | Agency for Healthcare Research and Quality |
ALS | amyotrophic lateral sclerosis |
AMSTAR | Assessment of Multiple Systematic Reviews |
AOC | alteration of consciousness |
APA | American Psychiatric Association |
BMI | body mass index |
CACTUS | Classical Acupuncture Treatment for People with Unexplained Symptoms |
CAM | complementary and alternative medicine |
CBOC | community-based outpatient clinic |
CBT | cognitive behavioral therapy |
CDC | Centers for Disease Control and Prevention |
CFS | chronic fatigue syndrome |
CI | confidence interval |
CINAHL | Cumulative Index to Nursing and Allied Health Literature |
CMI | chronic multisymptom illness |
CPAP | continuous positive airway pressure |
CPG | clinical practice guideline |
CQI | continuous quality improvement |
CRT | cognitive rehabilitation therapy |
DARE | Database of Abstracts of Reviews of Effects |
DNA | deoxyribonucleic acid |
DOD | Department of Defense |
DSM | Diagnostic and Statistical Manual of Mental Disorders |
DU | depleted uranium |
EBI | evidence-based information |
ECHO | Extension for Community Healthcare Outcomes |
ECT | electroconvulsive therapy |
EMC | enhanced medical care |
EMDR | eye-movement desensitization and reprocessing |
FD | functional dyspepsia |
FDA | Food and Drug Administration |
FGID | functional gastrointestinal disorder |
FPOW | former prisoner of war |
FSS | functional somatic syndrome |
FY | fiscal year |
GET | graded exercise therapy |
GI | gastrointestinal |
GMT | geographically adjusted income threshold |
GWI | Gulf War illness |
GWV | Gulf War–deployed veterans |
GWVI | Gulf War veterans illness |
IBS | irritable bowel syndrome |
ICT | information and communication technology |
IHI | Institute for Health Improvement |
IOM | Institute of Medicine |
LOC | loss of consciousness |
ME | myalgic encephalomyelitis |
MI | motivational interviewing |
mTBI | mild traumatic brain injury |
MUPS | medically unexplained physical symptoms |
MUS | medically unexplained symptoms |
NHS | National Health Service (UK) |
NICE | National Institute for Health and Clinical Excellence (UK) |
NSAID | nonsteroidal anti-inflammatory drug |
OEF | Operation Enduring Freedom |
OIF | Operation Iraqi Freedom |
OND | Operation New Dawn |
OR | odds ratio |
PC | primary care |
PCMH | patient-centered medical home |
PCS | postconcussive symptom |
PD-PACT | postdeployment patient-aligned care team |
PIT | psychodynamic interpersonal therapy |
PTA | posttraumatic amnesia |
PTSD | posttraumatic stress disorder |
RAC | VA Research Advisory Committee on Gulf War Veterans’ Illnesses |
RCT | randomized controlled trial |
REAC-BS | radioelectric asymmetric brain stimulation |
REM | rapid eye movement |
RoB | risk of bias |
SCAN | Specialty Care Access Network |
SHAD | Shipboard Hazard and Defense |
SIGLE | System for Information on Grey Literature in Europe |
SNRI | serotonin norepinephrine reuptake inhibitor |
SSD | somatic symptom disorder |
SSRI | selective serotonin reuptake inhibitor |
TBI | traumatic brain injury |
TENS | transcutaneous electric nerve stimulation |
UK | United Kingdom |
VA | Department of Veterans Affairs |
VAMC | VA medical center |
VA-OIG | VA Office of the Inspector General |
VBA | Veterans Benefits Administration |
VHA | Veterans Health Administration |
VISN | Veterans Integrated Service Network |
WGO | World Gastroenterology Organisation |
WRIISC | War-Related Illness and Injury Study Center |