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3 The Department of Veterans Affairs Persian Gulf Registry and Uniform Case Assessment Protocol This section of the report describes the special VA program designed to diagnose the health complaints of Persian Gulf veterans. The topics covered include the initial examination (the Persian Gulf Registry), the secondary level of examination (the UCAP), the process for referral, the data collection and reporting system, the designated VA providers and their responsibilities, the performance monitoring system, some descriptive statistics of program participants, VA outreach efforts, and VA provider education activities. PERSIAN GULF REGISTRY In 1992, VA implemented a program aimed at diagnosing the health problems of Persian Gulf veterans. In 1994, a revised VA clinical program for diagnosing the health problems of Persian Gulf veterans vitas implemented. This revised program is formally divided into two phases, the Registry examination (Phase I) and the UCAP (Phase II). During the Phase I Registry examination, (see Appendix F) a complete medical history is to be taken and is to include a family history; an occupational history; a social history including tobacco, alcohol, and drug use; a civilian history of possible exposures to toxic agents; a psychosocial history; and finally, a review of systems. The examiner is to record the time of onset of symptoms or condition, their intensity, the degree of physical incapacitation, and details of any treatment received. In addition, each veteran is to be given a complete blood count (CBC), an electrolyte glucose 21

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22 ADEQ US CY OF THE VA PERSIAN G ULF REGISTR Y AND UCAP (SMA-6, SMA-12) or equivalent blood chemistries and enzyme studies, and a . ~ urma. .ySlS. PHASE II: UNIFORM CASE ASSESSMENT PROTOCOL The manual specifies that, "Individuals who after completing Phase I or Registry evaluations, have a disability and do not have a clearly defined diagnosis which explains their symptoms, must receive the following supplemental baseline laboratory tests and consultations." This level of examination is called Phase II or UCAP. According to VA Manual M-10, "The concept behind the protocol was to identify previously unrecognized major diagnostic entities which could provide an explanation for the symptoms commonly reported in Persian Gulf veterans with unexplained illnesses." The protocol states that those referred to UCAP "must receive" the tests listed for the Phase II protocol. For example, all patients are to receive a set of supplemental baseline laboratory tests that include a CBC, Sedimentation Rate Erythrocyte Sedimentation Rate, C-Reactive Protein, Rheumatoid Factor, Anti-Nuclear Antibody, Liver Function, Creatine Phosphokinase, Hepatitis Serology, Human Immunodeficiency, VDRL, B-12 and Folate, Thyroid Function Test, Urinalysis, and Tuberculosis skin test Purified Protein Derivative. In addition, the patient is to receive certain consultations including (1) dental, but only if the participant's annual screening is not done; (2) infectious disease; (3) psychiatry, but only with physician-administered instruments; and (4) neuropsychological testing, but only as indicated by a psychiatry consult. Additional examinations ordered are symptom-specific, that is, tests are specified based on the symptoms. For example, if a patient complains of a headache, he or she undergoes magnetic resonance imaging and receives a lumbar puncture, which includes glucose, protein, cell count, VDRL, oligoclonal (IgC), myelin basic protein, opening pressure, and neurology. Other tests are required if patients exhibit other symptoms. (See Appendix G for the complete Phase II protocol.) REFERRAL If, after completing the UCAP investigation of the veteran's symptoms and conditions, a diagnosis is still elusive, the veteran may be referred to one of four Persian Gulf Referral Centers. The centers located in Washington, D.C., Houston, and Los Angeles were established in 1992, and the one in Birmingham, Alabama was established in 1995. The referral centers offer inpatient stays during which the veteran is observed, multidisciplinary

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THE VA PERSIAN GULF REGISTRYAND UCAP 23 consultations and serial physical examinations are conducted, and lengthy occupational and exposure histories are documented. Each center has available providers with clinical and academic expertise in multispecialty areas including pulmonary and infectious diseases, neurology, immunology, neuropsychology, and toxicology. Once veterans have completed their stay at the referral center, information is to be sent to the veteran's home VA medical center which is then to assume responsibility for providing follow-up care. DATA COLLECTION AND REPORTING A Persian Gulf Registry Code Sheet (see Appendix H) has been developed to collect basic information on all veterans seen through the Persian Gulf Registry, UCAP, or Referral Center evaluations. Part I of the code sheet is completed with the cooperation of the veteran and requests basic demographic information, exposure history, the veteran's evaluation of his own health status, and reproductive information. Part II of the Code Sheet is completed by the examining physician and requests information on symptoms, consultations needed, diagnoses, and the disposition of the patient (e.g., examination completed, hospitalized for future tests, or referred for outpatient care). If UCAP is undertaken because of significant symptoms but no identifiable diagnosis, the remaining three pages of the Code Sheet are completed. The information requested on these pages includes tests performed, consultations completed, diagnoses made, and whether the physician believes that the veteran has an unexplained illness. A copy of each coded form is submitted to the Austin Automation Center, and the information on the form is entered into the computerized database. The original code sheet is to be filed in the patient's medical record. Copies are not returned to the medical center of origin unless corrections are required. The code sheets are then forwarded to the central VA headquarters in Washington, D.C. The information gathered by this process is to be analyzed for detection of patterns of disease. In addition to the Persian Gulf Registry Code Sheet, a bimonthly report is required from all VA facilities (see Appendix I). This report provides statistical information on the total number of initial and follow-up examinations as well as cumulative totals, pending appointments, next appointment date, and number of missed appointments. PERSONNEL Each VA health facility is to designate a Veterans' Registry Physician (VRP) who is responsible for the clinical management of the Persian Gulf veteran and who serves as the primary health care provider until another one has

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24 ADEQUACY OF THE VA PERSIAN GULF REGISTRY AND UCAP been assigned. As defined in the VA manual, the major responsibilities of the VRP include (1) explaining the purpose of the physical examination to the veteran, (2) determining the focus of the initial examination and care provided for the symptomatic veterans, and (3) conducting and documenting the physical examination. This physician is also responsible for ensuring that a follow-up letter is mailed to each veteran explaining the results of the examination and laboratory tests (see Appendix J for sample follow-up letter). In addition, each of the facilities is to have an identified Veterans' Registry Coordinator (VRC) who is responsible for the administrative management of the program including scheduling of appointments, monitoring time frame compliance, reviewing records for accuracy and completeness, and collecting data for the reporting process. PERFORMANCE MONITORING VA has developed an instrument (Appendix K) to be used "to assess and monitor the appropriateness of medical care being provided" through the Registry. Each VA medical center is to use the instrument to review at least 10% of its Registry examinations. The form elicits information on the required components of the Registry examination including the presence or absence of a Persian Gulf Registry Code Sheet in the health record; a "thorough history and physical exam such as completion of an SF88"; a breast examination and a gynecological examination for women; laboratory test results including CBC, blood chemistries, urinalysis, and chest X ray; record of follow-up visit; record of follow-up letter containing examination results and recommendations; and whether or not specific examinations were ordered if the veteran complained of persistent diarrhea, memory loss, shortness of breath, or chronic cough. A summary form for recording the monitoring results is also completed by each facility. DESCRIPTIVE STATISTICS Phase I Persian Gulf Registry examinations have been provided in 170 VA health facilities. Between August 1992 and May 1997, 67,989 veterans had received initial evaluations in these facilities. In September 1995 data began to be collected in such a manner that it became possible to identify whether veterans received Phase II examinations. From September 1995 to May 1997 data were collected on 5,970 patients. Of those patients, 695 received a Phase II examination and 422 patients were referred to one of the four Referral Centers for further evaluation.

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THE VA PERSIAN GULFREGISTRY AND UCAP 25 Of the 5,970 veterans for whom data were collected on Me revised Code Sheet, 90.2% were male and 9.8% were female. In addition, 70.6% were in active-duty units during the Persian Gulf War, 12.7% ~ Reserve units, and 11.1% were in the Guard; the unit status was unknown for 5.6% of those participating in the program. Most Sequent complaints are listed in Table 3.1 while Table 3.2 lists the distribution of diagnoses. TABLE 3.1 Most Frequent Complaints among 5,970 Patients Complaint NumberPercent Loss of memory and other general symptoms 1,68728.3 Headache 1,55226.0 Fatigue 1,49225.0 Muscle, joint pain 1,42323.8 Skin rash 1,37723.1 Sleep disturbances 71812.0 Shortness of breath 67911.4 Diarrhea and other gastrointestinal 65711.0 symptoms Choking sensitivity 3656.1 Chest pain 2754.6 Abdominal 2634.4 Other symptoms involving skin and 244 4.2 integumentary tissue Cough 222 3.7 TABLE 3.2 Distribution of Diagnoses among 5,970 Patients Diagnosis NumberPercent Musculoskeletal and connective 2,11135.4 tissue Mental disorders 1,90932.0 Loss of memory and other general 1,68728.3 symptoms No medical diagnosis 1,25220.9 Skin arid subcutaneous tissue 1,15619.4 Respiratory system 1,12018.8 Nervous system 1,02217.1 Digestive system 97116.3 Injury and poisoning 66611.1 Circulatory system 61310.3 Infectious diseases 5389.0 Genitourina~y system 3335.6 Neoplasm 450.8

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26 ADEQUACY OF THE VA PERSIAN GULFREGISTRYAND UCAP Information obtained from the VA on the 5,970 patients seen through May 1997 indicates that 80.1% Of patients presenting with symptoms and examined through the Registry and UCAP received a diagnosis whereas 19.9% Of patients with symptoms received no diagnosis. Of those who did not receive a diagnosis, 11.6% were classified as having an unexplained illness. An unexplained illness is defined by VA as "a single or multiple signs or symptoms which do not fulfill the definition of any conventional medical diagnosis but have a significant impact on the veteran's quality of life or functional status." It is possible, therefore, for an individual veteran to have symptoms but no diagnosis and not fulfill the criteria for unexplained illness. OUTREACH The Environmental Agents Service is the focal point within VA for clinical issues related to Persian Gulf veterans. It is from this office that many outreach efforts are organized and implemented. Extensive efforts have been expended to inform Persian Gulf veterans of the services available through the VA health care system. VA maintains a toll-free number (1-800-PGW-VETS or 1-800- 749-8387) for persons with questions about Persian Gulf health issues, research findings, and applying for VA disability compensation. Veterans can request information over this automated helpline 24 hours a day, 7 days a week, or speak with a personal representative between 7:30 a.m. and 8:30 p.m. (central time). Helpline representatives encourage veterans to obtain a Registry examination. A VA Persian Gulf War veterans' illnesses home page is also available on the world wide web (http://www.va.gov/gulf.htm). The primary vehicle for disseminating updated Persian Gulf War-related information to veterans is the Persian Gu/Review newsletter. This publication is produced three to four times annually and is sent directly to all Registry participants as well as to veterans who have asked to be placed on the mailing list. Approximately 180,000 veterans receive the publication, as do all VA medical centers, VA regional offices, and veterans' centers. To date, 14 issues have been published, the most recent being in September 1997. Other items produced for mass distribution include a brochure entitled "Persian Gulf Veterans' Illnesses: Questions and Answers" and a two-page fact sheet entitled "A Report to Veterans Department of Veterans Affairs Persian Gulf Research." A few facilities have developed their own brochures describing their programs for Persian Gulf veterans. VA also offers an on-line bulletin board with updated information on Persian Gulf issues. On that bulletin board one may access the most recent issues of Persian Gu/Review, the most recent developments in Persian Gulf concerns, and facts about VA benefits and medical care for Persian Gulf War veterans.

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THE VA PERSIAN GULFREGISTRY AND UCAP PROVIDER EDUCATION 27 Extensive educational materials aimed at VA health care providers have been developed. The Environmental Agents Service periodically mails material related to Persian Gulf veterans' concerns directly to the Registry physicians and Registry coordinators in each VA health care facility. Medical center staff also receive a substantial amount of information via interactive satellite teleconferences, interactive quarterly national telephone conference calls, and. annual educational conferences. The most recent national conference on health consequences of service in the Persian Gulf War was held in early June 1997. This program covered a range of subjects related to Persian Gulf concerns (see Appendix L for a detailed agenda). In addition, a manual filled with reference material was distributed to each participant.

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