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4 Committee on the Evaluation of the Department of Veterans Affairs Uniform Case Assessment Protocol IOM was charged by VA with evaluating the adequacy of the UCAP, its implementation, VA efforts at outreach to veterans, and education of providers. IOM assembled a committee with expertise in neurology, neurobiology, internal medicine, infectious disease, gastroenterology, psychology, psychiatry, occupational and environmental medicine, obstetrics and gynecology, chronic fatigue syndrome, trauma, and clinical assessment. The full committee met three times, heard numerous presentations, and reviewed published material. In addition, the committee conducted site visits of VA health facilities to obtain firsthand information about the system and its implementation. The committee also solicited written testimony from VA health care providers and veterans service organizations on their views of the adequacy of the protocol and its implementation. SITE VISITS The committee determined that it was necessary to visit a range of VA health care facilities to understand how the providers at the local level are using the Registry and UCAP protocols, and implementing the program for Persian Gulf veterans. It must be emphasized that these visits were in no way intended to be a comprehensive survey of how the system was working. Rather, it was the intention of the committee to collect information that would provide a general picture of how individual VA health care facilities have organized to implement the protocols, and how the program was viewed by front-line providers in terms of its strengths and weaknesses. 29

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30 ADEQUACY OF THE VA PERSIAN GULFREGISTRY AND UCAP The committee chose the sites to be visited primarily on the basis of geographic region and the total number of examinations of Persian Gulf veterans conducted. In addition, the committee decided that one of the facilities should be a referral center. With these general criteria in mind, the committee elected to visit (1) the VA Puget Sound Health Care System in Seattle, Washington; (2) the James A. Haley VA Medical Center in Tampa, Florida; and (3) the Houston Veterans Affairs Medical Center in Houston, Texas (a referral center). Before the visits the committee developed a question guide for members to use during their visits. This guide was not meant to be an interview protocol but, rather, to serve as a reminder of the topics that committee members wished to cover during their visits to the facilities (see Appendix M for a list of the questions). Meetings were scheduled with (1) designated Persian Gulf Registry providers including physicians, nurse practitioners, and administrative staff; (2) specialists commonly called upon to see Persian Gulf veterans, for example, neurologists, psychiatrists, and dermatologists; (3) primary care providers (physicians, nurse practitioners, and nurses) who were not part of the Persian Gulf provider team but who would likely be involved in providing primary care to Persian Gulf veterans; (4) outreach personnel who were the first point of contact for the veterans and who conduct the local outreach activities; and (5) Persian Gulf veterans who were patients at the facility. The committee divided into three subgroups to conduct the visits. Each subgroup consisted of at least two committee members plus one IOM staff person. All visits were conducted during April 1997 and each visit took two days. It was readily apparent that the Persian Gulf Registry and UCAP were implemented differently at each facility. One facility had formed a Persian Gulf Clinic in which all Persian Gulf veterans receive the initial Registry and UCAP examinations as well as their follow-up care from a single physician. This physician integrates all of the medical and laboratory work conducted during both Phase I and Phase II examinations. Only when the provider/patient relationship is well established is primary care provided through a different clinic. The second facility is organized so that Registry examinations are provided on certain days of the week by one of two designated physicians. The examinations are scheduled by a coordinator who arranges for the routine laboratory and X-ray studies to be carried out before the appointment. If the patient's first contact with the facility is through the Registry, the follow-up care is typically provided by one of the Registry physicians. It is not unusual, however, to assign patients to other primary care clinics for follow-up once the health Registry and UCAP examinations are completed. In the third facility, all Phase I Registry examinations are conducted by a physician's assistant and are coordinated by the Registry physician. A social worker follows all Registry patients in an attempt to ensure that scheduled

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COMMITTEE ON THE EVALUATION OF THE VA UCAP 31 specialty consultations are completed and reported. Follow-up care is provided in the primary care clinics by other than the designated Persian Gulf providers. Referral center patients are generally cared for on an inpatient basis, with services coordinated by a designated physician. Follow-up care is provided at the home VA facility. WRITTEN TESTIMONY Letters were mailed to 167 VA health care facilities and to 37 veterans service organizations asking them to provide comments, based on their own experiences, about the adequacy of the VA Persian Gulf Registry and UCAP. Specifically, each was asked to submit written information that described its experience with the VA clinical program as it related to (1) the adequacy of the clinical protocol to address the wide range of medical assessment needs of Persian Gulf veterans, (2) how well the protocol had been implemented and administered by VA, and (3) the adequacy of education for providers and veterans about the program. VA Health Facilities Responses were received from 89 VA health care facilities. About one- third of those responding stated that the protocol was adequate, that it had been implemented and administered well, and that education for providers and veterans had been sufficient. The remainder of the responses provided more specific information on both the strengths and the challenges of the program. For a more complete summary of responses, see Appendix N. High praise was given for the VA Environmental Agents Service educational efforts aimed at providers, including the annual national Persian Gulf Conference, video conferences, teleconferences, and newsletter updates, although many believed that the potential audience was much greater than the number of people who were currently participating. Respondents reported difficulties regarding communication with and scheduling of specialty consultations and referral center visits, problems in completing the Registry Code Sheet, and reported the need for more information that could be distributed to the Persian Gulf veterans. Overall, the respondents indicated they believed that the program was working fairly well in their own facilities, that minor adjustments were needed, and that they were committed to meeting the needs of their Persian Gulf veteran populations.

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COMMITTEE ON THE EVALUATION OF THE VA UCAP 31 specialty consultations are completed and reported. Follow-up care is provided in the primary care clinics by other than the designated Persian Gulf providers. Referral center patients are generally cared for on an inpatient basis, with services coordinated by a designated physician. Follow-up care is provided at the home VA facility. WRITTEN TESTIMONY Letters were mailed to 167 VA health care facilities and to 37 veterans service organizations asking them to provide comments, based on their own experiences, about the adequacy of the VA Persian Gulf Registry and UCAP. Specifically, each was asked to submit written information that described its experience with the VA clinical program as it related to (1) the adequacy of the clinical protocol to address the wide range of medical assessment needs of Persian Gulf veterans, (2) how well the protocol had been implemented and administered by VA, and (3) the adequacy of education for providers and veterans about the program. VA Health Facilities Responses were received from 89 VA health care facilities. About one- third of those responding stated that the protocol was adequate, that it had been implemented and administered well, and that education for providers and veterans had been sufficient. The remainder of the responses provided more specific information on both the strengths and the challenges of the program. For a more complete summary of responses, see Appendix N. High praise was given for the VA Environmental Agents Service educational efforts aimed at providers, including the annual national Persian Gulf Conference, video conferences, teleconferences, and newsletter updates, although many believed that the potential audience was much greater than the number of people who were currently participating. Respondents reported difficulties regarding communication with and scheduling of specialty consultations and referral center visits, problems in completing the Registry Code Sheet, and reported the need for more information that could be distributed to the Persian Gulf veterans. Overall, the respondents indicated they believed that the program was working fairly well in their own facilities, that minor adjustments were needed, and that they were committed to meeting the needs of their Persian Gulf veteran populations.