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Appendix N Summary of Responses to Requests for Information VA FACILITY RESPONSES TO UCAP Protocol Adequate 32: Additional Comments ˇ At the time the protocol was established, it did serve the purpose. After several years, however, the protocol becomes less efficient and comprehensive. Particularly after completion of Phase I, there is rarely enough to assess and complete the veteran's evaluation. More and more frequently I use Phase I and II simultaneously to achieve the diagnostic work-up. These two phases should be combined into one step. . For female veterans, a laboratory hormonal profile and gynecology clinic evaluation should be part of the initial work-up, not part of Phase II. ˇ The Protocol is adequate but may be too inclusive. The initial exam documentation on "appropriate" forms is time-consuming and numerous. Phase II protocols require tests and procedures that would not all ordinarily be done on every individual. The "minimum work-ups" listed for the specific symptoms may be too invasive and in the global "risk-benefit ratio," have the potential to be too risky for the veteran. ˇ Recommending lumbar punctures for everyone with complaints of headaches or memory loss seems a bit extreme. 167
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168 ADEQUACY OF THE VA PERSL4N GULFREGISTRY AND UCAP ˇ More emphasis should be placed on the formal psychosocial assessment of veterans, especially in light of stress and its impact on an individual's medical well-being. ˇ Has lengthy paper work. ˇ Need for a psychiatric exam or clinical psychology exam to be part of the medical exam. There is also a need for a social work survey as part of the exam. We need standardized questions from headquarters. ˇ Consider incorporating one or more psychological screens in the protocol exam. ˇ Include some type of psychological screening. ~ Need some means of quantifying the symptomatology because frequently patients have multiple complaints and all complaints are not equal either in severity or frequency of occurrence. ˇ The protocol system should facilitate the exchange of Information among participating centers and physicians in a VISN in order to optimize clinical and support decision making. ˇ Lacks a detailed psychosocial assessment needed to thoroughly evaluate this patient group. ˇ For patients who have symptoms of chronic fatigue and/or sleep disorders, a sleep study would be an additional evaluation that may be indicated. ˇ Completion of the Phase II protocol is very time-intensive and the diagnoses, or lack thereof, seem to be of questionable value. ˇ The clinical protocol addresses complaints and diagnostics but not detailed history. Perhaps allowing the physician to attach pertinent history wherever applicable would help to assess the patient's concerns even though there is no diagnosis. examiner. ˇ The protocol does provide a general overview and resource to the ˇ Comprehensive and helpful. Should continue to be used without major changes. The weakness is its limitations for the diagnosis of the nature and causers) of the illnesses or symptoms presented. The routine examination and tests offered by this protocol are regularly found to be negative and the evaluations by specialists are diagnostically inconclusive most of the time. The diagnosis of chemically induced diseases involves different tests and approaches not available for routine medical practice. They should not be added to the current protocol because more disadvantages than benefits would result. But we need to speed up the research work on Gulf War veterans' illnesses. . It would be helpful to develop algorithms to guide clinicians in ordering tests/consults to assess symptoms/conditions that are identified in the evaluation. ˇ For a small minority of patients complaining of damage to the immune system, a protocol for a more detailed assessment of their immune systems would be time-saving.
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APPENDIX N 169 ˇ Protocol would be excessive if one were to follow it verbatim rather than individualize it. ˇ Endoscopies and biopsies of the gastrointestinal tract and biopsies of the skin lesions of the veterans with disorders of these organ systems are underused. ˇ It is necessary to develop a protocol for required neuropsychiatric testing to evaluate the rate of change and frequent claims of decreased mental function. ˇ It would be useful to add psychological testing to the routine protocol. The routine chest X-ray is worthless and should be deleted. ˇ The protocol lacks specificity in several areas. ˇ Adherence to the protocol is time-consuming for the physician as well as the patient who must make return visits to various clinics. ˇMany veterans are reluctant to discuss classified information on the questionnaire. Need an executive order declassifying all information related to toxic, biological, and/or chemical warfare agent exposure. Implementation Implemented and administered well 28: Additional Comments ˇA common difficulty is the long waiting period for consultations or procedures. Maybe there should be an established, required time frame for all requested consults, special tests, and/or procedures, taking into account the difference in facilities. ˇ Have experienced some problems with timely consults from specialists. Despite the fact that the consultants have been given the required protocol, they generally use their own expertise and perform tests and procedures they think are required given the symptoms. ˇA main concern relates to assessment by specialty clinics, such as neurology, which is common because of the vast number of headaches and memory loss complaints. Veterans must be referred to a distant facility (300 miles) to receive these evaluations. If the veteran is well enough to work, his or her employment interferes with keeping the appointment. There needs to be better access. For young patients with complicated problems requiring rheumatology, gastroenterology, or neurology follow-up, they just cannot keep follow-up appointments so far away. Possible solutions to these problems include offering local fee-based specialty clinic, or bringing specialists from the larger medical facilities for periodic clinics one day a month or one day every other month. . A strength is that the Registry allows for self referral- any veteran, ill or not, can obtain examination and treatment. ˇ Need a fast track approach. At the first encounter the new POW (Persian Gulf War) vet should receive information about the Registry exam and
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170 ADEQUACYOF THE VA PERSIAN GULFREGISTRYAND UCAP enrollment in VA's primary care clinic for potential treatment and follow-up, as well as a substantiation of claim for C&P exam purposes with the name of the veteran service officer to assist the vet. Follow-up should be through letters and newsletters. ˇ POW veterans should not be treated as intrinsically different from all our other veterans who may have special needs in the VA system. ˇEach VA center should identify and employ experienced, competent contact persons and physicians to serve as Environmental POW Special Program Physicians and Advisors. ˇ The Registry exam should be performed ASAP before or after separation or deactivation of the individual from active duty. Should be performed by experienced personnel at a local level. ˇ Believe a strength of our facility is that we have established one clinic that is solely responsible for the evaluation of PG veterans who wish to be enrolled on the Registry. ˇ A large number of VA medical centers do not have a sleep lab to conduct sleep studies (polysomnography). Obtaining this test from the private sector is expensive, time-consuming, and delays the evaluation process. For most small- to medium-sized VAs, however, it is not cost-effective to have a sleep lab in- house. No easy solution has been identified. ˇ Experience a number of no-shows because a majority of vets seeking evaluations maintain full-t~me jobs and may live some distance from the medical center. ˇ Foster the idea that the PG exam is not merely one evaluation, rather it is a series of evaluations until the various diagnoses are established or discounted and other conclusions can be drawn. This may require a managed care approach where designated providers would conduct both the initial and follow-up evaluations and draw on subspecialty support when indicated. ˇ Promulgate and support the option of hospitalization in complex or geographically remote cases. ˇ There are great problems with the time and availability of specialized personnel required to conduct multiple tests and procedures before a condition can legitimately be considered "undiagnosed." Only rarely can this be accom- plished with a single visit. For centers that serve an extensive geographic area, this raises the question of hospitalization. ˇ Have developed a worksheet to keep track of where patients are in the process and the results of their evaluations. ˇ Phase II has not been well implemented due to a lack of clear guidelines regarding its objectives and use. Practically speaking, to involve a large group of diverse specialists in an individual patient's care is disjointed and unproductive as the Primary Care Model is being implemented in health care.
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APPENDIX N 171 ˇ Because of an increase in the number of vets seeking exams and the time it takes to adequately accomplish these exams, need a full-time physician to perform PG and other environmental contaminant examinations. ˇ From the clinical perspective, our physicians conducting the PG exams feel that there are frequently changing directives for conducting these exams. ˇ Delays have been experienced in the timeliness with which consultations are obtained. ˇ We have had difficulties getting the affiliated medical school to complete examinations in a timely and appropriate manner. Of particular difficulty is their problem with the concept of"undiagnosed illness." ˇ More feedback to the examining physician after the exams are completed would be beneficial. It would allow the physician to be appraised as to any improvements he or she could make such as the acceptability of diagnosis. ˇ Have fully implemented the protocol. ˇ Because of evaluations in numerous specialty clinics, a great deal of effort must be expended to coordinate the medical information. It would be good to have the generalist staff facilitate the overview of all the specialist exams. ˇ Gulf War veteran satisfaction at our facility is high because the VRP is in charge of both the Registry and the return and follow-up clinics. The VRP dedicates unlimited time for these veterans. Because he or she is responsible for both the exams and the follow-up care, there is continuity of care and availability of medical assistance when needed. ˇ Current system is only limited by waiting times due to a lack of examiners and primary care providers. ˇ I believe the implementation is successful because there is a specific interdisciplinary clinic established to specifically capture this population of veterans. Concentrating PG veterans in one clinic with a specific group of providers establishes a "uniform approach to their unique concerns." ˇ Since not all services are available at our facility (e.g., neurology, orthopedics, MRI), the waiting period for an appointment at another VA facility is several months. ˇ There are limitations because of the availability of medical specialists and the need to refer to another VA facility. Referral Centers ˇ There are long delays in acceptance of patients to referral centers. Several of our patients had to wait 9 months. Also, physician's assistants are the primary care givers in at least one referral center, and the veterans interpret this as a lessening in priority of the program.
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172 ADEQUACYOFTHEVAPERSIANGULFREGISTRYAND UCAP ˇReferral centers should take a leadership role in integrating and communicating information among their local and VISN areas to standardize, process, and optimize service and research efforts. ˇ There is a problem accessing regional centers to discuss possible patient referrals. Calls to the telephone numbers provided frequently are not answered and there is no provision for leaving messages. ˇ It is very difficult to get through to the tertiary care centers for referral. They rarely get back to us, and it is very difficult to obtain copies of their examination results. This is a major annoyance to myself and my patients. ˇ There is a delay in the communication between the referral center and the clinic making the referral. This is due to both delay in the completion and mailing of reports from the referral center and to completed reports being received but placed in a record unbeknownst to the primary care physician. ˇ The consultation process with our research facility in Houston does not provide easy consultation with physicians knowledgeable in the latest aspects and research regarding Gulf War illnesses. ˇ Need some form of communication from the physicians and staff of the Stage 2 hospitals about their findings and diagnoses. ˇ It would help the Registry physicians to have the name of the contact person of the referral centers so that certain difficult cases could be referred in a timely manner. ˇ Referrals are tedious and difficult to accomplish with facilities far away. Consultant information is not always easily accessible for follow-up after referral. Better access to consultations and special tests should be provided and reports kept in a file separate from the general medical record. Would recommend a fast track to these centers for appropriately selected veterans. ˇ While the Phase I protocol is adequate for the vast majority of patients seen, about 5°/0 require further evaluation by specialists at another facility. This presents several problems. First, inconvenience to the veteran, who is required to devote 2 to 4 days for travel and exams/tests. Another is the poor com- munication between the referral centers and the referring facilities. There is often no written response from the specialists or, if there is one, its receipt is greatly delayed. . Patients who go to the referral centers must remain for a great deal of time. This concern was expressed primarily by those veterans who are employed and have families. Other Recommendations ˇ Following the veteran's PG exam, an appointment should be made with his other primary care physician and a list of recommendations should be given to that physician for a workup of the veteran's complaints. If the workup does
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APPENDIX N 173 not uncover the cause of his or her complaint, the veteran should be referred to the PG physician for further evaluation and/or referral to one of the four referral centers. ˇ There needs to be better coordination between the Registry exam and the C&P exam to avoid duplication. Should any additional findings be uncovered during the C&P exam, they should be forwarded to the v~t`,r~n'~ nrimar~r bore physician. ~BIAS ~ ~ L~l ~1 V ~1 1lll~ ~= ~ ˇ One physician in each facility should be responsible for the PG Reoistrv for consistent. good aualitv evaluatinn.s _ _ O. ~ v-^ ~ ~ ~ O ~ J - , ~ ~v. ˇ Need a methodology for screening-out veterans who are simply voicing symptoms that they have read about. ˇ No changes needed. ˇ Need quarterly or semi-annual review/recommendations on diagnosis and follow-up. ˇ Tests should be specified up front. ˇ Residents who are performing the PG evaluations need to be closely supervised by their attending physicians and need to be educated about possible exposures and outcomes. ˇ Recommendations for lab tests and X-rays should have studies completed at referral centers rather than at the parent facility so consultants might benefit from results and provide timely conclusions and recommendation. ˇ The physician and clerk assigned to the Persian Gulf program should be kept as a team to better address issues. At the completion of all tests and consults, the physician should review the chart for any possible omissions. Education ˇ Need "in-service" training for primary health care providers and specialty clinics within the VAMC. ˇ An inclusive discussion, made available to VRPs, of the "alternative" explanations and proposed treatments and VA's resn`,n~e ~n them nrnnr`~o would be helpful. ˇ There should be educational programs geared to the veterans and broadcast on local television to bring them up to date on PG health care issues. ˇ Education of the primary care providers in the treatment of such conditions as chronic pain, headaches, fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and rashes would be of great benefit. . Continuing Medical Education programs should be developed for periodic updates, as well as interfaces with new VA providers in a cooperative educational manner. ˇ The most important factor in the care of these patients is the role of education of the vets as to what is known about the exposures at this point in r ~.~v_ in Vend
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174 ADEQUACYOFTHEVAPERSIANGULFREGISTRYANDUCAP time, and reassurance that research has not shown evidence of a communicable disease or an increase in the birth defect rate. An open, informative, and compassionate attitude in dealing with these patients helps to allay fears and makes for better rapport with the patients and overall better outcome. ˇ Education provided to the environmental physicians through the annual national conferences, video conferences, teleconferences, and the distribution of new research and development materials has been very beneficial. However, access to this kind of information for the veteran appears to be very limited. It would be beneficial to develop an educational system utilizing newsletters, brochures, etc. to continually educate the vets regarding new developments and research studies. ˇ Many channels exist for the PG Registry physician to be educated about new developments, but not for the specialists who see PG vets on consult. They need education too. ˇOutreach efforts should be enhanced through the VISN level by coordination among the veteran service officer, and National Guard, Reserve and active veterans' service organizations, as well as community service and employers. ˇ We have a very high no-show rate among PG vets and assume one of the reasons is because the vets are unable to get time off from work to come in for the exam which takes two half-day sessions. Employers must be better educated. ˇ Need information on the epidemiology of ieishmaniasis, and the interaction, both hypothetically and practically, of cholinesterase inhibitors and insecticides and their potential for lasting neurological complications. Need a list and description of ongoing research relevant to the medical issues of PG illness~es) and abstracts on published articles. ˇ While the recent national meeting was excellent, the veterans and the general public have not been properly informed or prepared. The only infor- mation most of them have access to is via the news media, which is spotty, inadequate, and often distorted. ˇ Need to continue annual 2-day conferences. Also need to train clerical staff on the importance of clear documentation and what information is needed to assist staff in headquarters. One unified and indexed handbook to assist the clerical staff processing PG exams would be beneficial. ˇ Training should be continued on the clinical treatment and ongoing re- search studies of Persian Gulf veterans. On a local level, ongoing outreach is needed to educate agencies and vets on the registry program and other VA services. . Veterans need to understand the purpose of the protocol exam and the Registry and the fact that it has nothing to do with claims of disability or compensation determination.
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APPENDIX N 175 ˇ Need short video or short closed-circuit presentation that goes over the Registry form to make sure we are complying with everything that needs to be done. It would be helpful to have information on such things as depleted uranium, microplasma, etc. to be able to respond to veterans who bring up these topics. ˇ Education for both providers and veterans could be improved. It would be helpful to have pamphlets available for veteran and service officer education on the purpose of the Registry. Publications and articles of interest to both veterans and providers need to be available in the treatment areas. ˇProviders of primary care need to be better informed as to new information that would assist them in treating PG vets. An annual presentation coordinated by the PG physician at each station would be a valuable contribution. ˇContinue education via yearly national conference, live satellite conferences, and regular relay of current publications/articles. ˇ The physician and clerk assigned to the Persian Gulf program should be properly trained. ˇVeterans need to be better informed about the workup and referral process, that is, only unexplained cases are referred to Houston facility. ˇ Need a "fact sheet" published quarterly that separates facts from media reporting. ˇ One way to alleviate concern may be to frequently communicate with all veterans via newsletter so that they will not be confused by the conflicting reports in the press. ˇ The VA could have seminars that would keep physicians who do the Registry exams abreast of new developments. ˇ After 5 years of the program, it may be time to compile a current manual for the program with information such as the purpose of and eligibility for the program, exam protocols with lab and X-ray requirements, coding sheets, and sample follow-up letters. ˇ Outreach programs or new letters should provide the results of studies that are reassuring, such as the information regarding birth defects. . VA personnel turnover creates difficulties for maintaining a well- informed staff that understands PG issues and eligibility. ˇ Efforts to provide education and outreach are fine. . Persian Gulf program in Long Beach was excellent. . Need medical education on medical and industrial toxicology given the concerns and question of PG veterans relating to exposures to various chemical agents. ˇ Providers and support staff need up-to-date information on the latest developments in Persian Gulf illnesses. The continuing medical education credit is good and needs to continue.
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176 ADEQUACY OF THE VA PERSIAN GULF REGISTRY AND UCAP ˇ Perhaps a brief training film or program similar to the one produced for the ex-POW protocol program would be useful for orienting new staff. ˇ Teleconferences and educational conferences have been extremely beneficial in keeping providers aware of the current status of research and in helping to defuse the multiple myths surrounding this complex problem. ˇ Insufficient work has been done in educating providers other than the PG providers about the clinical protocol and Gulf War health issues. The annual conference on Gulf War health consequences is excellent. Unfortunately, access is limited. The organization and planning of conferences and workshops to be held within each VISN would offer greater opportunities for other providers. ˇ ()verall implementation has been quite successful due to the continuing education efforts by VA headquarters. ˇ While Persian Gulf providers have been educated well, other staff and particularly residents who are affiliated with VA medical centers have not had the benefit of that education. They and the staff who are not directly involved in the program but who regularly see Persian Gulf patients need to be more familiar with the program, the current research and understanding on the illnesses of PG vets, and how best to met the needs of these veterans. ˇ Education for PG-designated providers is great, but there needs to be more education at the local level so that other clinicians who treat PG veterans in their practices may learn about recent research and medical management updates. ˇ Each facility needs to improve the awareness of the providers, other staff, and veterans on PG issues. ˇ It would be good to have a succinct one-page monthly update to hand out to providers who do exams and care. ˇ Providers have indicated they would like the Persian Gulf Review and news releases from the central VA to be sent directly to them so as to reduce any delay in receiving this information. ˇ There is a tremendous need to educate all the physicians involved with the veterans' care concerning Persian Gulf medical issues. Often we use our consultants for the completion of the exams. By educating the providers, they would become more sensitive toward those Persian Gulf issues and subsequently could address the requirements of the examination and the patient's needs. ˇ Need more publicity about the nature and current findings of ongoing epidemiologic studies for veterans. ˇ Some veterans are unaware that they could return for further care.
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APPENDIX N 177 Problems ˇ Primary care physicians are, for the most part, unaware of the Persian Gulf Registry. ˇThe issue of compensation clouds the efforts to collect objective information for the Registry. Need a greater collaborative effort between VAHS R&D and the VBA to ensure this distinction is understood by the veteran. ˇ Several veterans have become disillusioned with the care they have been offered and have given up on the system. Some have had worsening problems but have failed to return for reevaluation. ˇ The VA program lacks focus. When there is no well-defined disease entity or broadly defined clinical syndromes, and no etiologic specificity, identified with any degree of certainty, there is an unhappy doctor- (provider-) patient relationship. ˇ Frustrated at not being able to address all concerns voiced by the PG vets because there are no definitive answers. ˇ Considered not necessarily as a weakness but rather as a continuing challenge/opportunity for improvements is how best the provider can convey to the veterans' satisfaction the findings/explanations of their illnesses or the health consequences of Gulf War service in light of continuing media interest and reports that at times contain conflicting information. ˇ Our follow-up letters, which are required by central VA, prominently state that the purpose is to give veterans a brief clinical summary of exam findings. However, a number of veterans interpreted the letters to be a denial of compensation benefits. We were told to stop sending out the letters. ˇ "Undiagnosed illness" is very difficult. Providers are very uncomfortable with the formal diagnosis of"undiagnosed illness." Something like "Insufficient clinical evidence at present to warrant a diagnosis of any acute or chronic pathologic condition or residuals thereof'' would be better. ˇ Not so subtle pressure to make a diagnosis of a chronic pathologic condition has resulted in somewhat a "Catch 22" situation for the examiners. If a diagnosis of a chronic pathologic conditions can be made at the time of re- evaluation and the symptoms relating to that condition were not present while the veteran was on active duty or within 12 months of discharge, then the veteran may well have service-connection reduce or severed. ˇ Providing updated, ongoing information to dozens of staff physicians as well as a large group of residents in training has proven to be both difficult and spotty. ˇ Too many Persian Gulf war veterans do not understand there is a registry for all who served. ˇ The percentage of no-shows is high. ˇ We saw a veteran with alleged exposure to depleted uranium and sent urine samples to the depleted-uranium program in Baltimore but have had
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178 ADEQUACY OF THE VA PERSIAN GULFREGISTRYAND UCAP difficulty receiving the results of the urine tests. Maybe they could be made available through email to the respective physicians. ˇ A major weakness of program involves difficulty in diagnosis, that is the Persian Gulf syndrome is not a well-def~ned process. Veterans and the mass media continue to allege that "something is being hidden" from the public by authorities, which makes dealing with veterans somewhat difficult. ˇ Have not discerned exposures that have been reasonably linked with the myriad health concerns presented by patients. ˇ This entire process is becoming politicized like the Agent Orange program. ˇ This program, as presented to the veterans as a potential source of monetary compensation has created unrealistic expectations and has probably biased some of the veterans presenting histories that is thereby making the use of such information for statistical data collection questionable. ˇ The true workload associated with these examinations and corresponding data recording requirements is not being captured or allowed for. ˇ The waiting period for a Persian Gulf Registry evaluation, return, and follow-up clinic is several months, but the physician in charge resolves this by overbooking. ˇ There are ongoing problems with identification of in-theater PG veterans. It is difficult to determine eligibility accurately using the DHCP system. There need to be two designations-"Persian Gulf Service" and "Persian Gulf era." ˇ Funds for biopsy of lesions and testing for toxins, neuropsychological testing, or genetic testing have not been made available at the local level. Generally speaking, it is hoped that the clinical program will be expanded. As more information comes to light about toxic exposure to combustion materials from crude oil fumes, biological and/or chemical warfare agents and exposures to and effects of vaccines and depleted uranium, the testing program for veterans must also be expanded. Persian Gulf Registry Code Sheet/Data ˇ For sleep studies, a column should be designated to reflect the results from such an evaluation. ˇ Forms required for use in documentation of PG exams are ambiguous. The ICD-9 codes required for the documentation form are not specific for symptoms, but rather diagnoses. Yet they are required for each symptom. At the end of the exam, the veteran must assist in delineating which ICD-9 code for which symptom is to be listed as the most severe, and only one must be selected. Often this is difficult, as several symptoms cause the veteran concern. At the end of the form the provider must decide if the veteran has an unexplained problem or illness, but there are no formal guidelines to follow. It might be
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APPENDIX N 179 better to ask whether all the veteran's symptoms can be treated with current therapies. ˇ There is no computerized data collection sheet. The present PG form is mainly for statistical purposes. A proper form for a history and physical exam should be added. ˇ Since many of the specialty exams are performed as part of Phase I in order to arrive at a final diagnosis that is coded in the Phase I section, the completion of the Phase II part of the protocol is then very problematic. We have recently tried to review these exams at 3 and 6 months to see if a Phase II coding sheet can reasonably be completed and then resubmitted. We have uniformly found that the clinic physicians do not understand the requirements of completing the code sheets. ˇ Persian Gulf Registry code sheet question 26 for diagnostic consultations is difficult to answer. This question requests information about consultation referral and diagnosis. The diagnosis is made by the consultant and therefore is not known at the time of the Phase I registry exam. The feedback the examiners have received from the veterans is that few of the questions on the form are difficult to understand. Veterans frequently have questions about the definition of the terms "petrochemical" and "microwaves" (questions 1 8J, 1 8P). ˇ The code sheet (Section 25 A/J, Column 3) mentions specifically the month and year of onset of symptoms. An "if available" in parentheses should be present after the month to simplify the process. ˇ Some veterans have difficulty converting responses on their part of the code sheet to numerical values. They need guidance. ˇThe separation of the examination protocol into phases is clumsy, inefficient (redundant), and unnecessarily confusing. Specifically, this relates to the reiteration of diagnoses, ad nauseum, in the two phases. Phase II, item 26 numerical categories have always been confusing, both in this protocol and that for the Agent Orange. They are subject to different interpretations and lead to confused data. ˇ The information in the Registry exam or the military CCEP must be a part of the consolidated medical record and should be made available with the service record to the evaluating C&P or treating site physician. The Austin Data Center should provide the treatment center with periodic feedback regarding the exam. ˇ The VA should capture the vets' special program needs through a national database at the time a VA card for service is issued. This data screen should reflect the veterans, status, POW, RVN, POW, VIS, C&P pending, SC, female veteran, or other (i.e., radiation, Bosnia, etch.
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180 ADEQUACY OF THE VA PERSIAN GULF=GISTRYAND UCAP Items of Note ˇ Compensation and pension physicians are providing Phase I exams at the same time as C&P exams in one VA. ˇ Frances Murphy and her staff have been most helpful. ˇOne suggestion from a VA is as follows: "...it may be more cost effective to eliminate the Persian Gulf exam program and treat their medical problems like [those of] any other patient. The one aspect of the exam program that provided significant assistance to the Persian Gulf veterans and their families was the Social Worker..." who is no longer funded. ˇ Guidance from headquarters has been outstanding. ˇ The approach of the VA should be to give credence to the complaints of POW veterans. VETERANS' SERVICE ORGANIZATIONS RESPONSES TO UCAP Thirty-seven letters were sent to Veterans' Service Organizations (VSOs) with details on the IOM committee on the UCAP. The letter requested the VSOs to comment on the adequacy of the protocol and its implementation as well as the need for education of providers and veterans. Five responses were received, and are summarized below. I. PROTOCOL A. Overall Comments ˇ The protocol is adequate to assess and address the wide range of veterans' illnesses (1~. ˇ The VA needs to examine the possibility of depleted uranium exposure as a cause of illness in Persian Gulf War veterans. ˇ Further assessment should be done on the health of the veterans' families. B. Medical Histories ˇ Less emphasis should be placed on the veterans' history of smoking. ˇ More information should be included in the histories to elicit a detailed history of the extent of the veterans' exposures to various hazardous agents.
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APPENDIX N C. Exams 181 ˇ Cease the use of urinalysis for depleted-uranium testing and tell all previously tested vets that their results were probably inaccurate. ˇ Doctors should conduct standard clinical testing for fatigue, the most common complaint of Persian Gulf War veterans. ˇ Many of the protocol tests are improperly performed and interpreted. D. Diagnosis ~ The protocol is designed only to find common and easily detected problems. It is not adequate for detecting, assessing, or treating exposure to low-level chemical agents, biological agents, depleted uranium, etc. ˇ The protocol often has inconclusive results, and veterans are Heated for each symptom, rather than for an illness. ˇ Less emphasis should be placed on stress and posttraumatic stress disorder (PTSD) as diagnoses. E. Treatment ˇ Should PTSD patients be treated differently from other mentally ill patients? ˇ There is little evidence that the VA is effectively treating veterans. F. Implementation ˇ Many facilities were slow to be educated on the UCAP and slower to implement the protocol. ˇ Veterans in the protocol should be assigned to a primary care physician to oversee all phases of testing and treatment. ˇ Information on subsequent specialty consults does not get back to the physician who conducted the original Registry exam. ˇ National referral centers (NRCs) should be able to diagnose patients, but often do not fulfill that duty. Furthermore, only 1,000 veterans have been referred, and over 13,000 do not have a . . c Diagnosis. ˇ NRCs need to have specific teams assigned to provide Phase II exams. ˇ VISNs should be made able to handle Phase II exams because veterans often have difficulty getting to an NRC.
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182 ADEQUACY OF THE VA PERSIAN GULF REGISTRY AND UCAP II. EDUCATION AND OUTREACH A. Veterans ˇ Not enough spouses and dependents are aware of, or have taken advantage of, Registry exams. ˇ VHA does not inform vets about new efforts in the Registry. ˇ Many veterans would not have known about the Registry without the veterans' service organizations. ˇ Veterans should be educated by VA about what exposures in the Gulf could be hazardous. B. VA Personnel ˇ The VA needs a better understanding of possible toxic exposures. ˇ The VA needs to stop relying on information from the Deparunent of Defense, which has proven to be inaccurate before. ˇ Some believe Registry providers seem to be concerned and dedicated. Others see a lack of information and interest on the part of the . ˇ . physicians. ˇ VA should consider new tests identified by non-VA groups that could help the veteran. ˇ Many VA physicians do not have access to the most recent medical infonnation the veterans often have to educate their physicians on recent developments. ˇ Physicians need to put current medical knowledge into practice. ˇ Many of the health care providers are first-year residents or physicians' assistants. The VA should have more experienced doctors. Inexperienced doctors are less likely to recognize difficult-to-diagnose illnesses. ˇ VA staff often generate more health hazards to the veterans by continuing harmful actions such as imposing fumes from chlorine and other agents on the veterans in the facilities. III. ADDITIONAL COMMENTS ˇ An independent organization should investigate the cause of veterans' illnesses. ˇ The VA should conduct formal outcome studies on the effectiveness of medical treatments.
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183 ~ Me VA should evaluate We merits of Me cubed UCAP Pbase I Ed Pbase ~ systems Ed consider Belong VISKs to complex Pbase ~ exam Veterans oRen complain God Sensitive p~sici~s, ineffective coed bad llow-~, Ed a Egg ~ Hey He s11pp~g Womb He cracks. Me Calm of care ~ di~rem cemers varies widely.
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Representative terms from entire chapter: