Witness Testimony of Dr. Bernard M. Rosof, Chairman, Board of Directors, Huntington Hospital Chair, Committee on Gulf War and Health: Treatment for Chronic Multisymptom Illness Institute of Medicine of the National Academies
Mr. Chairman, Ranking Member Kirkpatrick, and Members of the Subcommittee, I am Bernard Rosof, Chairman of the Board of Directors at Huntington Hospital in Huntington, New York. I also served as Chair of the Institute of Medicine’s Committee on Gulf War and Health: Treatment for Chronic Multisymptom Illness. The Institute of Medicine, or IOM, is the health arm of the National Academy of Sciences, an independent, nonprofit organization that provides unbiased and authoritative advice to decision makers and the public. Thank you for the opportunity to submit testimony for the record based on the IOM’s report Gulf War and Health: Treatment for Chronic Multisymptom Illness.
Chronic multisymptom illness (CMI) is a serious condition that imposes an enormous burden of suffering on our nation’s veterans. Veterans who have CMI often have physical symptoms (such as fatigue, joint and muscle pain, and gastrointestinal symptoms) and cognitive symptoms (such as memory difficulties) and may have shared symptoms with known syndromes (such as chronic-fatigue syndrome [CFS], fibromyalgia, and irritable-bowel syndrome [IBS]) and other clinical entities (such as depression and anxiety). In its report, the IOM committee 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 CFS, fibromyalgia, and IBS) or other diagnoses.
Despite considerable efforts by researchers in the United States and elsewhere, there is no consensus among physicians, researchers, and others as to the cause of CMI. The constellation of unexplained symptoms experienced by people who have CMI could result from multiple factors, but the etiology remains unknown.
The Charge to the Committee
The IOM study was mandated by Congress in the Veterans Benefits Act of 2010 (Public Law 111-275, October 13, 2010). That law directs the secretary of veterans affairs “to enter into an agreement with the Institute of Medicine of the National Academies to carry out a comprehensive review of the best treatments for CMI in Persian Gulf War veterans and an evaluation of how such treatment approaches could best be disseminated throughout the Department of Veterans Affairs [VA] to improve the care and benefits provided to veterans.”
In August 2011, VA asked that IOM conduct a study to address that charge, and IOM appointed the Committee on Gulf War and Health: Treatment for Chronic Multisymptom Illness. The complete charge to the committee follows.
The IOM will convene a committee to comprehensively review, evaluate, and summarize the available scientific and medical literature regarding the best treatments for CMI among Gulf War veterans. In its evaluation, the committee will look broadly for relevant information. Information sources to pursue could include, but are not limited to:
• Published peer-reviewed literature concerning the treatment of multisymptom illness among the 1991 Gulf War veteran population;
• Published peer-reviewed literature concerning treatment of multisymptom illness among Operation Enduring Freedom, Operation Iraqi Freedom, and Operation New Dawn active duty service members and veterans;
• Published peer-reviewed literature concerning treatment of multisymptom illness among similar populations such as allied military personnel; and
• Published peer-reviewed literature concerning treatment of populations with a similar constellation of symptoms.
In addition to summarizing the available scientific and medical literature regarding the best treatments for CMI among Gulf War veterans, the IOM will:
• Recommend how best to disseminate this information throughout the VA to improve the care and benefits provided to veterans.
• Recommend additional scientific studies and research initiatives to resolve areas of continuing scientific uncertainty.
• Recommend such legislative or administrative action as the IOM deems appropriate in light of the results of its review.
The IOM Committee’s Conclusions and Recommendations
The committee’s conclusions and recommendations are in five major categories:
• Treatments for CMI.
• The VA health-care system as it is related to improving systems of care and the management of care for veterans who have CMI.
• Dissemination of information through the VA health-care system about caring for veterans who have CMI.
• Improving the collection and quality of data on outcomes and satisfaction of care for veterans who have CMI and are treated in VA health-care facilities.
• Research on diagnosing and treating CMI and on program evaluation.
Treatments for CMI
The committee conducted a de novo systematic assessment of the evidence on treatments for symptoms associated with CMI. The committee also identified evidence-based guidelines and systematic reviews on treatments for related and comorbid conditions (fibromyalgia, chronic pain, CFS, somatic symptom disorders, sleep disorders, IBS, functional dyspepsia, depression, anxiety, posttraumatic stress disorder, traumatic brain injury, substance-use and addictive disorders, and self-harm) to determine whether any treatments found to be effective for one of these conditions may be beneficial for CMI. On the basis of the extensive evidence reviewed, the committee cannot recommend any specific therapy as a set treatment for veterans who have CMI. The committee concluded that a “one size fits all” approach is not effective for managing veterans who have CMI and that individualized health-care management plans are necessary. Specifically, the committee recommends that VA implement a system-wide, integrated, multimodal, long-term management approach to manage veterans who have CMI.
The VA health-care system as it is related to improving systems of care and the management of care for veterans who have CMI
To identify veterans who have CMI and bring them into the VA health-care system, VA should commit the necessary resources to ensure that veterans complete a comprehensive health examination immediately upon separation from active duty. The results should become part of a veteran’s health record and should be made available to every clinician caring for the veteran, whether in or outside the VA health-care system. Coordination of care, focused on transition in care, is essential for all veterans to ensure quality, patient safety, and the best health outcomes. Additionally, VA should include in its electronic health record a “pop-up” screen to prompt clinicians to ask questions about whether a patient has symptoms consistent with the committee’s definition of CMI.
Once a veteran has been identified as having CMI and has entered the VA health-care system, the next step is to provide comprehensive care for the veteran, not only for CMI but also for any comorbid conditions. Existing VA programs, such as postdeployment patient-aligned care teams (PACTs), could be adapted to best serve veterans who have CMI. VA should develop PACTs specifically for veterans who have CMI (that is, CMI-PACTs) or CMI clinic days in existing PACTs at larger facilities, such as VA medical centers. A needs assessment should be conducted to determine what expertise is necessary to include in a CMI-PACT. Furthermore, VA should commit the resources needed to ensure that PACTs have the time and skills required to meet the needs of veterans who have CMI as specified in the veterans’ integrated personal-care plans, that the adequacy of time for clinical encounters is measured routinely, and that clinical case loads are adjusted in response to the data generated by measurements. VA should use PACTs that have been demonstrated to be centers of excellence as examples so that other PACTs can build on their experiences. VA should develop a process for evaluating awareness among teams of professionals and veterans of its programs for managing veterans who have CMI, including PACTs, specialty care access networks (SCANs), and war-related illness and injury study centers (WRIISCs); for providing education where necessary; and for measuring outcomes to determine whether the programs have been successfully implemented and are improving care. Finally, VA should take steps to improve coordination of care among PACTs, SCANs, and WRIISCs so that veterans can transition smoothly across these programs.
Dissemination of information through the VA health-care system about caring for veterans who have CMI
A major determinant of VA’s ability to manage veterans who have CMI is the training of clinicians and teams of professionals in providing care for these patients. To disseminate information about CMI to clinicians, VA should provide resources for and designate “CMI champions” at each VA medical center. The champions should be integrated into the care system (for example, PACTs) to ensure clear communication and coordination among clinicians. VA also should develop learning, or peer, networks to introduce new information, norms, and skills related to managing veterans who have CMI. Because many veterans receive care outside the VA health-care system, clinicians in private practice should be offered the opportunity to be included in the learning networks and VA should have a specific focus on community outreach. Another dissemination opportunity is for VA to provide required education and training for its clinicians in communicating effectively with and coordinating the care of veterans who have unexplained conditions, such as CMI.
Improving the collection and quality of data on outcomes and satisfaction of care for veterans who have CMI and are treated in VA health-care facilities
To improve outcomes and ultimately to improve the quality of care that the VA health-care system delivers, VA should provide the resources needed to expand its data collection efforts to include a national system for the robust capture, aggregation, and analysis of data on the structures, processes, and outcomes of care delivery and on the satisfaction with care among patients who have CMI so that gaps in clinical care can be evaluated, strategies for improvement can be planned, long-term outcomes of treatment can be assessed, and this information can be disseminated to VA health-care facilities.
Research on diagnosing and treating CMI and on program evaluation
Many studies on treatments for CMI reviewed by the committee have methodological flaws. Therefore, future studies funded and conducted by the VA to assess treatments for CMI should adhere to the methodologic and reporting guidelines for clinical trials, including appropriate elements (problem–patient–population, intervention, comparison, and outcome of interest) to frame the research question, extended follow up, active comparators (such as standard of care therapies), and consistent, standardized, validated instruments for measuring outcomes. VA should fund and conduct studies of interventions that evidence suggests may hold promise for treatment of CMI.
The committee did not find comprehensive evaluations of VA programs, such as the PACTs, SCAN-ECHO programs, and WRIISCs. Program evaluation—including assessments of structures, processes, and outcomes—is essential if VA is to continually improve its services and research. Therefore, the VA should apply principles of quality and performance improvement to internally evaluate VA programs and research related to treatments for CMI and overall management of veterans who have CMI. This task can be accomplished using such methods as comparative-effectiveness research, translational research, implementation-science methods, and health-systems research.
As detailed above, numerous opportunities exist for VA to improve and expand its health-care services for veterans who have CMI. The IOM committee encourages VA to apply the principles set forth in its 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.
Thank you, again. I would be happy to answer any questions the Subcommittee might have.