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Appendix B Workshop Summary

The Institute of Medicine's Committee on Identifying Effective Treatments for Gulf War Veterans' Health Problems held an information-gathering workshop and public hearing on August 14, 2000. The purpose of this meeting was to obtain information that would assist the committee in accomplishing its charge. Dr. Bernard Rosof, committee chair, reviewed the three main tasks of the committee charge. These are (1) to identify and describe methods for evaluating treatment effectiveness, regardless of disease or condition; (2) to identify illnesses and conditions prevalent among Gulf War veterans, including medically unexplained physical symptoms; and (3) to identify valid models of treatment for such illnesses (to the extent that they exist) or identify new approaches, theories, or research on management of patients with these conditions if validated treatment models are not available. The following is a summary of material presented during this workshop and public testimony.

IRRITABLE BOWEL SYNDROME

Howard Spiro, M.D., spoke about diagnosing irritable bowel syndrome (IBS). He defined it as beginning in adolescence and consisting of abdominal pain related to, relieved by, or worsened by bowel movements. A person who develops a change in his or her bowel habits later in life does not, according to Dr. Spiro, have IBS. In the case of later life changes in bowel habits, one must search for a cause for the change, for the disordered bowel. For example, it is possible that infection can lead to



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Page 141 Appendix B Workshop Summary The Institute of Medicine's Committee on Identifying Effective Treatments for Gulf War Veterans' Health Problems held an information-gathering workshop and public hearing on August 14, 2000. The purpose of this meeting was to obtain information that would assist the committee in accomplishing its charge. Dr. Bernard Rosof, committee chair, reviewed the three main tasks of the committee charge. These are (1) to identify and describe methods for evaluating treatment effectiveness, regardless of disease or condition; (2) to identify illnesses and conditions prevalent among Gulf War veterans, including medically unexplained physical symptoms; and (3) to identify valid models of treatment for such illnesses (to the extent that they exist) or identify new approaches, theories, or research on management of patients with these conditions if validated treatment models are not available. The following is a summary of material presented during this workshop and public testimony. IRRITABLE BOWEL SYNDROME Howard Spiro, M.D., spoke about diagnosing irritable bowel syndrome (IBS). He defined it as beginning in adolescence and consisting of abdominal pain related to, relieved by, or worsened by bowel movements. A person who develops a change in his or her bowel habits later in life does not, according to Dr. Spiro, have IBS. In the case of later life changes in bowel habits, one must search for a cause for the change, for the disordered bowel. For example, it is possible that infection can lead to

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Page 142chronic diarrhea in people who never before had that problem, or malignancy can be responsible for a change in bowel habits. Therapy for irritable bowel depends on symptoms and other contributing factors. If the problem is due to lactose intolerance, one ceases to ingest lactose-containing products. Antimuscarinic agents are used to reduce spasm. Small doses of antidepressants are used for patients who have abdominal pain that one cannot characterize; antidiarrheal agents are used for those with diarrhea. It may be that in some cases the physician will recommend hypnotism or psychotherapy, depending on his or her concept of the cause. GULF WAR VETERANS IN THE UNITED KINGDOM Col. John Graham, M.D., spoke about the British experience with the Gulf War. The British government deployed about 50,000 troops. During deployment, health concerns focused on infectious, communicable, and diarrheal diseases as well as battle casualties. There was also a great deal of concern about the possible use of chemical and biological warfare agents. Dr. Graham reported that veterans' health concerns in the United Kingdom following the Gulf War could be divided into two time frames: before a 1993 British Broadcasting program about illnesses in U.S. Gulf War veterans, and after. Before the program, concerns in the U.K. focused on health effects of exposure to smoke from burning oil wells and to depleted uranium and on treatment for posttraumatic stress disorder (PTSD). Following the program, veterans' concerns coalesced into what became known as Gulf War illnesses and underfinancing of the medical assessment program. About 3000 veterans have been referred to the British medical assessment program. Symptoms reported are very similar to those reported by U.S. Gulf War veterans. British soldiers do, however, have a higher rate of diagnosed PTSD than that reported in the United States. A research program was commissioned to determine if there was an excess of ill health in the veteran community, to find if such ill health could be related to exposures in the Gulf, and to come up with treatment and preventive strategies. A study by Simon Wessley found that British Gulf veterans report the same kinds of symptoms that British Bosnian veterans do but at two to three times the rate. Nicholette Cherry's study of mortality did not find any statistically significant differences between the Gulf veteran cohort and the Erie group (veterans deployed to Northern Ireland), although there was a slight excess in the number of deaths due to external causes (e.g., automobile accidents) in the Gulf veteran group. These findings mirror the findings of Han Kang's study in the United States. Simon Wessley has conducted a second-phase study where ill veterans and ill controls are brought in for clinical evaluation. Dr. Wessley

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Page 143found that about 40% of the veterans who reported themselves as being unwell in Phase I of the study report that they are better in Phase II. MEDICALLY UNEXPLAINED PHYSICAL SYMPTOMS A recent article by Craig Hyams, M.D., reviewed the medical literature from the U.S. Civil War through the present. He found that concern about medically unexplained physical symptoms (MUPS) has occurred following every war. According to Dr. Engel, disease is something that is identified by biological indices or exam findings. When we find symptoms but no biological indices or examination findings, then these symptoms are unexplained. This does not, however, mean that they do not have an explanation. But it is not necessary to know the cause of symptoms to treat them. Dr. Engel stated that a problem in caring for patients with MUPS is “medicine as usual,” that is, the physician takes a history, listens to how the patient feels, examines the patient, then does some laboratory testing with the idea of identifying a diagnosis and a treatment. If the physician is unable to diagnose the problem, several things might happen—treatment may end; there may be further testing, retesting, and referral; the patient may be given pills; or there is surgical intervention. For patients with MUPS, this may result in more harm than good. Certain diagnostic tests have important morbidities associated with them. Additionally, overtesting conveys to the patient the message that he or she has to prove his or her illness, that it is necessary for a test to show something to validate the patient's problem. It is also possible that if symptoms are unexplained, many physicians will describe them as somatization or psychological in nature. However, according to Dr. Engel, the first step in caring for patients with MUPS is to legitimize the patient's illness. Disability already exists; it only becomes worse if it is not acknowledged. Acknowledging the illness allows the patient and the physician to proceed to devising strategies for treating the symptoms. There are multiple levels at which intervention can occur, ranging from the intensive kind of program at Walter Reed for those with severe disability, to much less intensive strategies at the primary care level aimed at preventing patients from developing such severe problems that they require the specialty care approach. At Walter Reed's intensive program, the goal for treating MUPS is to improve outcomes through structured care targeting behavior and knowledge, to prevent disability in people with MUPS. The approach advocated is collaborative; that is, the patient and the physician collaborate and negotiate exact and explicit behavioral goals. Many patients are defeated by symptoms they view as out of control. It is the job of the health professional to help the patient become more activated, both physically

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Page 144and psychologically, to find ways that the patient can help himself or herself to some degree. Progress is monitored by using outcomes the patients have decided are important (e.g., symptom reports, quality of life estimates, or capacity to function and fulfill roles) rather than use of strict biological indices that involve tests. Dr. Engel stated that, in his opinion, postdeployment symptoms will continue to exist and the best approach is to address them through veteran-centered care that acknowledges illness, rather than disease-centered care that demands diagnosis. TREATING U.S. GULF WAR VETERANS About 1800 Registry examinations have been completed at the Seattle VA since the program began in 1993, and the Gulf War Veterans Clinic (established in 1994) is designed to provide long-term follow-up care for veterans. The team of health care providers in the clinic includes a physician, clinical psychologist, nurse practitioner, nurse researcher, female physician for women who prefer a female provider, and specialty consultants and support service providers (physical therapy, dietary, SW, C&P, occupational and vocational therapy). The clinic provides primary care and follow-up, compensation pension examinations, and outreach services, and it conducts research. The top three symptoms of patients being seen at the Seattle clinic are feeling tired, joint pain problems, and problems of concentration or cognitive difficulties. The average number of symptoms these patients report is five. Data show that these patients have a great deal of distress, as noted by elevated scores on almost all psychiatric self scales. Upon closer examination, the Gulf clinic patients are even more distressed than other Gulf War veterans who are not using the clinic. The SF-36 is administered to determine patient level of functioning, and findings show that on all subscales the clinic's patients fall in the considerably impaired range. Patients report physical symptoms as well as psychiatric difficulties. Approximately 14% of male and 15% of female veterans using the clinic have symptoms consistent with the diagnosis of PTSD. When veterans at the clinic are asked whether they believe their symptoms will go away on their own, almost 70% indicate strong disagreement; to the statement that “my symptoms are permanent,” over 60% express very strong agreement. About 40% of veterans agree they need some type of psychiatric intervention, but more than 80% believe that they need a medical or biomedical intervention to treat their symptoms. A survey was conducted of internal medicine providers and mental health providers at three Northwest VA hospitals. This survey asked the

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Page 145providers to indicate what they believe to be the cause of Gulf War veterans' illnesses. About 50% of those surveyed (both internal medicine and mental health providers) responded that they believed the conditions experienced by Gulf War veterans had both biological and psychological aspects with regard to etiology and required treatment consisting of both biological and psychological interventions. The remaining 50% of the mental health providers were more likely to believe that the problems were physical in nature, whereas the remaining half of the internal medicine providers were more likely to believe that the problems are psychological or psychiatric in nature. These same mental health providers were significantly more likely to endorse biological interventions, while the internal medicine providers were more likely to endorse psychological interventions. It was frequently the case that a Gulf War veteran would go to a medicine clinic, tests would be run but would show no definitive cause or abnormality, and the veteran would be referred for mental health services. Mental health would do a work-up, perhaps identify a psychiatric diagnosis, but the focus would still be on the veteran's symptoms so the veteran would be referred again to the medicine clinic, resulting in a frustrated veteran, frustrated clinicians, and an ineffective treatment model. Therefore, a new treatment model was developed for patients seen at the Seattle Gulf War Veterans Clinic. For patients with medically unexplained physical symptoms we shift from a biomedical management model to a model that emphasizes self-management. In this approach the patient's symptoms are recognized as chronic and the physician and patient work together to define strategies that will help the patient minimize the symptoms' negative impact. The focus is shifted from the cause of the symptoms to the effects of the symptoms. The goal is not necessarily to make the symptoms disappear but to diminish their impact on the patient's life and to increase function. Therapies used include cognitive-behavioral therapy, diet and exercise programs, vocational rehabilitation training, developing coping skills, and referral for compensation and benefit examination. Patient's beliefs about their illness and its causes are examined, and integrated physical and mental health care are provided. The goal of the program is to maximize health and overall function, not just to diagnose an illness. The focus is on health, not disease, on clear, open communication and access, and on continuity in providers of care. Regularly scheduled visits are important, as is ongoing care. The philosophy driving the care at the Seattle VA Gulf War Veterans Clinic is that we do not have to fully understand the cause of the symptoms the veterans are experiencing to provide treatment that might be helpful.

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Page 146 PUBLIC TESTIMONY Seventeen individuals testified during the period of public testimony. Of those, 10 are Gulf War veterans, one is the wife of a Gulf War veteran, one is a civilian experiencing the same kinds of problems reported by Gulf War veterans, two are physicians who have treated Gulf War veterans with health problems, one represents a veterans' service organization, one is a physician involved in research, and one is the director of a testing laboratory. Seven presenters called for more extensive testing to arrive at appropriate diagnoses, although the kinds of tests desired varied among presenters and included tests for activation of coagulation and concomitant hereditary risk factors, bone density, ANA, creatinine, hyperalbumin, spec scans, viral screens, and specialized MRIs and tests for streptococcus and staphylococcus, peripheral nerve dysfunction, upper motor neuron dysfunction, dysautonomia, brain stem dysfunction, and cranial nerve dysfunction. Several presenters put forward the idea that massive doses of intravenous antibiotics were effective treatments for reducing the severity of symptoms, which they believed were due to infections. Others stated that they believe symptoms are due to immune suppression, autoimmunity, and coagulation activity. Suggested treatments varied based upon laboratory findings. The diagnosis of a genetically mutated strain of leishmaniasis was suggested as a cause of severe symptoms in Gulf War veterans. One presenter stated that cognitive-behavioral therapy and aerobic exercise had helped tremendously in managing pain and anxiety and in getting along with others. A common theme among those testifying was the call for more responsive service from the VA. Many emphasized that they felt the providers encountered did not believe they were ill, did not understand the circumstances that Gulf War veterans faced during deployment, and were unsympathetic to the impairments and diminished quality of life experienced. It was pointed out that there is a catch-22 for those wishing to receive compensation benefits from the VA. That is, if a Gulf War veteran has an undiagnosed illness, he or she is eligible to receive compensation from the VA. But if the veteran receives a diagnosis, he or she must prove service connection before being allowed compensation. One presenter stated that enormous amounts of time, money, and effort have been expended to find answers to the questions surrounding the health problems of Gulf War veterans. He suggested that agencies need to better coordinate with each other, that there should be a central repository for blood samples and tissue data, and that there should be a central database and national archives where researchers and others could consolidate their records and make information available to others in

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Page 147order to enable more efficient examination and analysis of what we know and what we need to find out. CONCLUDING REMARKS Dr. Rosof, M.D., chair, thanked those who had provided testimony to the committee. He reviewed the committee charge and reminded those present that while the committee greatly appreciated the information provided, some of the issues raised were beyond the scope of the committee's charge and could not be addressed within the bounds of the current study. Dr. Rosof then concluded the public meeting.

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Page 148 COMMITTEE ON IDENTIFYING EFFECTIVE TREATMENTS FOR GULF WAR VETERANS' HEALTH PROBLEMS August 14, 2000 WORKSHOP AGENDA 9:00 Welcome and Introduction Bernard Rosof, MD, Chair 9:15 Treating U.S. Gulf War Veterans—Presentation and Discussion Stephen Hunt, MD Ralph Richardson, PhD 10:00 Gulf War Veterans' Health in the United Kingdom—Presentation and Discussion Col. John Graham, British Liaison Officer (Gulf Health) 10:30 BREAK 10:45 Irritable Bowel Syndrome—Presentation and Discussion Howard Spiro, MD 11:30 Medically Unexplained Physical Symptoms Charles Engel, MD 12:15 Concluding Discussion 12:30 LUNCH 1:30–1:40 Introduction—Bernard Rosof, MD, Chair 1:45–1:55 David Berg, MS Director, Hemex Laboratories, Inc. 2:00–2:10 Janyce E. Brown, BFA Editor/Publisher, The Surface Report

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Page 149 2:15–2:25 Edward J. Bryan, veteran Health Care Liaison, VA-Boston University Advisory Group 2:30–2:40 Kathleen Hannan, MD, Radiologist Osceola Regional Hospital, Orlando, Florida 2:45–2:55 Edward Hyman, MD, FACP 3:00–3:10 James Johnson, US Army (Ret.) 3:10–3:30 BREAK 3:35–3:45 Kirt Love (Venus Hammack presenting) Desert Storm Battle Registry 3:50–4:00 Mark Colins Maryan Gulf War veteran 4:05–4:15 Ruth McGill, MD 4:20–4:30 Kevin G. Messer Staff Sergeant, USMC Ret. 4:35–4:45 Harold Nelson Staff Sergeant, US Army 4:50–5:00 Denise Nichols, Vice Chairman National Vietnam and Gulf War Veterans Coalition 5:05–5:15 Michael Oldaker USMC, Ret. Medical 5:20–5:30 Lawrence Plumlee, Co-President National Coalition for the Chemically Injured 5:35–5:45 Frank Sauer, Sergeant Major US Army Ret. 5:50–6:00 Steve Smithson, Assistant Director for Veterans' Affairs and Rehabilitation, American Legion 6:00 Closing Remarks, Dr. Bernard Rosof, Chair

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