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Executive Summary On August 2, 1990, Iraq invaded the independent nation of Kuwait and the Persian Gulf War began. Within 5 days the United States began to deploy troops, the number of which would ultimately reach almost 700,000, in Operation Desert Shield. Intense air attacks against Iraqi forces began on January 16, 1991 (Operation Desert Stonn), and a ground attack was launched on February 24, 1991. Within 4 days Iraqi resistance crumbled. Following the fighting the number of U.S. troops in the area began to decline, and by June 1991 fewer then 50,000 U.S. troops remained. Most troops returned home and resumed their normal activities. However, a number of those who had been deployed to the Persian Gulf began to report health problems that they believed were connected to their deployment. These problems included the symptoms of fatigue, memory loss, severe headaches, muscle and joint pain, and rashes. In 1992 the Department of Veterans Affairs (VA) developed a Persian Gulf Registry to assist in addressing questions about the health concerns of Persian Gulf veterans. Queries about exposures, particularly those associated with oil well fires, were included as part of the history taking. With continuing concern about the potential health consequences of service in the Persian Gulf, the Department of Defense (DoD) and VA met in 1994, revised the clinical program, and implemented this revised approach to diagnose veterans' health complaints, called the Comprehensive Clinical Evaluation Program (CCEP) by

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2 ADEQUACY OF THE VA PERSL4N GULFREGISTRY AND UCAP DoD and the Persian Gulf Registry and Uniform Case Assessment Protocol (UCAP) by VA. The Persian Gulf Registry is a basic initial examination aimed at diagnosing veterans' health problems. If a veteran's complaint cannot be diagnosed through the Registry examination, he or she is referred to UCAP for specialty consultation and testing. The President's Advisory Committee, the General Accounting Office, and the Office of Technology Assessment have evaluated these programs and have made recommendations on the basis of their reviews. In addition, the Institute of Medicine (IOM) has conducted assessments of and made recommendations regarding CCEP. In September 1996 VA asked IOM to evaluate the adequacy of the UCAP and its implementation with specific emphasis on (1) the protocol, (2) its implementation and administration, (3) outreach efforts to inform veterans of available services, and (4) education of providers. A committee of experts met; heard presentations from many groups and individuals including VA, the President's Advisory Committee, the General Accounting Office, the American Legion, and the Disabled American Veterans; conducted site visits of VA health care facilities; and solicited written testimony from VA health care facilities and veterans service organizations. A great deal of time and a great deal of effort were expended by VA in developing and implementing a diagnostic program for Persian Gulf veterans that could be conducted in all VA facilities, from small rural primary care facilities to large urban tertiary complexes. This effort was begun immediately upon the cessation of hostilities and attempted to build on lessons learned from past program efforts, for example, those directed toward Vietnam veterans' health concerns. The initial program was implemented in 1992 and the revised program was implemented in 1994, veterans were examined, and information about their symptoms and conditions was collected. The information that has emerged from the diagnostic program, from research studies, and from the veterans themselves has helped indicate where changes and improvements in the Registry and UCAP can be made. Change is part of a natural evolutionary process in developing good screening instruments for diagnosis. This is not to imply that the first efforts were inappropriate but, rather, that time leads to new knowledge, which leads to the ability to improve. Such is the case with the VA Persian Gulf protocol. Over time, information has been obtained that can be used to help identify areas where change in the protocol and its implementation will be of benefit. This report is intended to assist VA in that effort to improve. As an operational system, the Persian Gulf Registry arid UCAP have provided the opportunity for observation, evaluation, and feedback aimed at improvement. That is what the committee has done- observed, evaluated, and reported.

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EXECUTIVE SUMMARY 3 The committee's first recommendations address the process for diagnosing Persian Gulf veterans' health complaints. These are followed by recommenda- tions regarding implementation and administration and the quality of services rendered. Next come recommendations related to outreach efforts and provider education. Broad recommendations appear in boldface type, with the subentries indicating recommendations following from these broader recommendations. FINDINGS AND RECOMMENDATIONS Diagnostic Process The diagnostic and referral process specified in VA Manual M-10 is laid out as a two-stage protocol. The protocol specifies that if, after an initial history and physical with minimal laboratory testing (Registry; Phase b, a diagnosis is not made, the veteran is referred to the UCAP for specialist consultation and additional testing (Phase II). The division of the diagnostic process into two phases is, however, an artificial designation that does not accurately reflect the way in which medicine is traditionally practiced. The committee found that the diagnostic process followed in some facilities does not adhere to the written protocol, rather it is more clinically based. For example, it was found that Registry (Phase I) evaluations are supplemented in some facilities by selected consultations and tests from He UCAP (Phase II). Although this approach may be clinically more appropriate and should be encouraged, it is not Be process specified by the current protocol. Such deviation introduces the problem of inconsistency in evaluations across facilities as well as variation in data recording and reporting. This failure, in turn, works against achieving one of the purposes for which the system was developed, Hat is, to identify previously unrecognized major diagnostic entities that could provide an explanation for the symptoms commonly reported in Persian Gulf veterans with unexplained illnesses (FA Manual M-10; see Chapter 3~. The committee believes that He goal of implementing a uniform~approach to the diagnosis of Persian Gulf veterans' health problems is admirable and should be encouraged. To accomplish that goal, the committee makes several recommendations. 1. The committee recommends that the diagnostic pathway, illustrated in Figure 1, for the evaluation and referral of Persian Gulf veterans' health problems be adopted and followed by providers in each VA facility.

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4 ADEQUACY OF THE VA PERSL4N GULFREGISTRY AND UCAP No symptoms and negative findings | Primaly Care Provider I 1 Definable disorder consistent with symptoms - ~=: periodic evaluation ~ Definable Definable disorder consistent disorder inconsistent with symptoms with symptoms 1 1 - _ Refer for treatment, periodic evaluator ~ _ , Definable disorder inconsistent Unexplained with symptoms findings - Unexplained symptom ~ r f SPECIALIST EVALUATION 1 1 1 | Unexplained | findings l Unexplained symptoms . . PROFESSIONAL DECISION Refer for treatment, l periodic reevaluation required 1 1 Refer to special center for further evaluation FIGURE 1. Pathway for diagnosing health problems of Persian Gulf veterans in the VA system.

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EXECUTIVE SUMMARY s The major differences between the current written protocol and the pathway recommended by the committee are (1) the primary care provider is encouraged to order additional tests and consultations beyond those specified in Phase I for a patient, based on symptoms and complaints, without Me requirement of initiating a Phase II evaluation, (2) patients should be referred to a designated referral center only when the resources necessary to provide appropriate evaluation of presenting complaints are unavailable at the originating facility, and (3) there must be a defined approach to be used for patients who remain undiagnosed or whose major symptoms have not been accounted for (for example, periodic reevaluation, treatment, or referral to a referral center). Adoption of the described pathway necessitates changes to specific elements of the Registry and UCAP protocols. l.a. Use of the pathway eliminates the need to designate phases of evaluation; therefore, the distinction between Phase I and Phase II (with all accompanying specifications for specialty examination and referral) should be eliminated. l.a.~1) The Persian Gulf Registry Code Sheet needs to be redesigned to reflect the elimination of Phase I and Phase II from the protocol. l.a.~2) The redesign should accommodate the need to aggregate data from the original data collection system with that of the redesigned system. A minority of patients with persistent symptoms will not receive a definitive diagnosis. Some of these patients could have disease processes that cannot be diagnosed at present because of limitations in scientific understanding and diagnostic testing. They may not benefit from further evaluation now but may receive benefit from reassessment at a later date. This undiagnosed patient cohort, some of whom are designated as having an "unexplained illness," will contain a diversity of individuals who will require monitoring and periodic reassessment. l.b. VA should plan for and include periodic reevaluations of the clinical needs ofthese undiagnosed patients. The pathway specifies an initial evaluation by a primary care provider for both the veteran presenting with complaints and those with no complaints. In traditional medical practice, the comprehensive clinical evaluation of a patient presenting to any physician includes a complete history, physical examination, and laboratory tests. This should be no different for Persian Gulf veterans. The committee believes, however, that VA should consider using an expanded set of tests for the initial laboratory evaluation.

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6 ADEQUACYOF THE VA PERSIAN GULFREGISTRYAND UCAP 2. The committee recommends that both patients presenting with and those presenting without complaints should receive an initial evaluation which includes (1) a comprehensive history and physical as defined in the American Medical Association publication Physicians' Current Procedural Terminology (1998), (2) a very specific set of questions related to the Gulf War setting, and (3) a standardized laboratory evaluation. 2.a. A national panel of experts should be convened to (1) review the current set of Gulf War-related questions contained on the Persian Gulf Registry Code Sheet to determine whether additions or deletions are needed, (2) identify the set of standardized laboratory tests to be used in the initial evaluation, and (3) conduct periodic reevaluations of the usefulness of each element in the initial evaluation. Specific Gulf War-related questions to which veterans are asked to respond include the exposure questions contained on the Persian Gulf Registry Code Sheet (see Appendix H). Given the importance placed by veterans and clinicians on the potential contribution of exposures to health complaints of Persian Gulf veterans, the committee decided to examine the exposure questions in detail. At some facilities the questionnaire portion of this Code Sheet is given to the veteran to complete as a self-report form, whereas at other facilities this is completed during an interview with the provider. The committee believes that many of these questions are appropriate if administered by an interviewer but are not optimal as a self-report. The information collected with this question- naire is not intended to be used for research purposes. Rather, the purpose of the questionnaire is to provide information to the clinician that might be used to assist in the diagnosis of health problems. It is important, therefore, that the patient understand what is being asked of him or her so as to provide the clinician with accurate information. In addition, the questions related to traumatic experiences may miss important experiences that can affect physical and mental health and about which the physician should know when conducting the patient's evaluation. 2.b. The section on traumatic experiences on the Persian Gulf Registry Code Sheet (Question 19) should be expanded by the addition of (1) specific questions inquiring about experiences not presently assessed that have been reported by Persian Gulf veterans, and (2) an open-ended questioners) that Clowns) the veteran to report idiosyncratic or particularly distressing experiences that may play a role in the veteran's current health status. 2.c. The questionnaire should be administered in an interview format. If the information on environmental exposure, immunizations, and exposure

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EXECUTIVE SUMAI4RY 7 to traumatic situations cannot be collected in an interview format, all yes and don't know responses should be reviewed with the patient in a face-to- face evaluation. When the Registry and UCAP protocols were developed, they were designed to be very broad and to capture as much information as possible about potential health concerns that could affect Persian Gulf veterans. The information collected through that system as well as the information obtained from other providers and through scientific studies allows efforts to be more appropriately focused on identifying and diagnosing Persian Gulf veterans' health problems. One mechanism that can aid these efforts is the development of clinical practice guidelines which are statements developed for the purpose of assisting the provider and the patient in making decisions about appropriate health care. 3. The committee recommends that VA, to the extent possible, use an evidence-based approach to develop and continuously reevaluate clinical practice guidelines for the most common presenting symptoms and the difficult-to-diagnose, ill-defined, or medically unexplained conditions of Persian Gulf veterans. Because the Persian Gulf War was the first engagement in which women formed such a large proportion of deployed troops (7%) and because potential exposure of this group of women to stressors, reproductive system toxicants, and other health hazards may produce disorders distinct from those seen in prior conflicts, the committee believes that VA has a unique opportunity to examine the health of women deployed under such conditions. Therefore, there should be increased examination of and attention directed toward women's health issues. The current Registry and UCAP do investigate infertility or subLertility. However, evaluation of miscarriages, stillbirths, and congenital malformations and the evaluation of genitourinary or other hormonally related diseases are limited. 3.a. Clinical practice guidelines for the evaluation and management of women's health issues should be developed. A major principle in the development and use of clinical practice guidelines is that there must be a mechanism that encourages feedback on the adequacy of the guidelines and their ease of implementation. 3.b. VA should develop a formal mechanism that enables practitioners to provide feedback on the practice guidelines and the diagnostic process used in the VA clinical program for Persian Gulf veterans.

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8 ADEQUACY OF THE VA PERSIAN GULFREGISTRY AND UCAP Implementation and Administration The committee focused its examination of the implementation and administration of the Registry and UCAP on four elements that it believes are of prime importance to the adequate functioning of the program. These four areas are (1) referral for specialty consultation both within and across facilities, (2) quality of services provided, (3) patient satisfaction, and (4) data collection and reporting. Referrals The committee found that problems often exist with referrals for specialty consultations. Within facilities, consultant practices are often booked weeks in advance resulting in long delays for specialty services. The referral specialist is frequently unaware that the referred patient is a Persian Gulf veteran, and the specialist may have little experience with the special needs and concerns of this group of patients. In addition, veterans undergoing this tertiary level of evaluation frequently have unrealistic expectations about the process and the outcome of their visit. One approach to addressing this problem is the use of clinical pathways which are clinical management tools that organize, sequence, and specify the timing of the major patient care activities and interventions of the entire interdisciplinary team for a particular diagnosis, procedure, or process. 4. The committee recommends that the process and procedures for referral be modified. 4.a. In those facilities where specialist consultations are provided, certain individuals within each specialty should be designated as the one~s) who will provide the consultative services to Persian Gulf veterans. 4.b. Clinical pathways should be developed to specify the events and processes involved in referrals for specialty consultation. 4.c. In the case of an inpatient evaluation, a site-specific clinical pathway should be used to facilitate the timely and efficient evaluation of patients. 4.d. The diagnostic pathway should specify that a patient be referred to another facility for evaluation only when the resources necessary to provide appropriate evaluation of the patient's presenting complaints are unavailable at the originating facility. 4.e. VA should develop a transfer protocol that specifies procedures for initial contact and scheduling as well as the materials and processes necessary for a transfer, for example, a full copy of the veteran's record to date including all laboratory tests and consultations, the differential diagnosis, and a procedure for the transfer of records from the tertiary

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EXECUTIVE SUMMARY 9 institution to the originating provider upon completion of the diagnostic workup. Quality There is a great deal of interest in and concern about the quality of care that Persian Gulf veterans are receiving in VA facilities. Although the VA has developed procedures for what it terms the Quality Management/Assessment Monitor (see Appendix K), this information is not adequate to evaluate the quality of care provided to Persian Gulf veterans. The committee believes that, overall, the clinicians involved in the VA Persian Gulf Registry and UCAP examinations are practicing medicine according to acceptable standards but there does not appear to be, across facilities, a systematic approach to documenting the quality of care provided or to identifying areas where improvement is needed. Traditional quality improvement programs examined the structure within which care is provided, the process for providing care, or the outcomes of care in an attempt to identify the outliers or "bad apples." More recent approaches focus on performance improvement and are aimed at involving practitioners in the use of nonpunitive efforts that result in more effective changes and improvements to the system than was the case with approaches aimed at identifying practitioners with deficiencies. The development and use of clinical practice guidelines, as recommended earlier, can be an important tool in a program for continuous quality improvement. Additionally, the participation of a multidisciplinary group of providers in the development of such guidelines increases the likelihood that needed changes will be more readily accepted. 5. The committee recommends that VA should establish an evaluation feedback mechanism that includes the elements of a performance improvement system. Patient Satisfaction The VA has implemented a well-developed and structured approach for assessing general patient satisfaction with VA care. However, there is no system in place specifically addressing the substantial number of issues and concerns specific and relevant to Persian Gulf veterans, or the special Persian Gulf diagnostic program. 6. The committee recommends that VA design and implement a brief yet comprehensive questionnaire to survey patient satisfaction with the special program for Persian Gulf veterans.

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10 Data Collection and Reporting ADEQUACY OF THE VA PERSIAN GULF REGISTRYAND UCAP An adequate and accurate data collection and reporting system is crucial to the understanding of Persian Gulf veterans' health problems. Such a system is needed to understand the extent of services provided, to contribute to assessments of the quality of services, to examine overall patterns in health status, and to contribute ideas for potential research studies that could be conducted on the health problems of Persian Gulf veterans. These data are not appropriate, however, for the conduct of scientific research. Data collection foes need to be standardized and easily computerized. Those completing the forms should be doing so in a consistent manner from facility to facility. The committee found variation across sites in the diagnostic categories that practitioners used to identify their patients' health problems; for example, some practitioners use Chronic Fatigue Syndrome as a diagnosis and some do not. Additionally, the methods used to determine primary versus secondary diagnoses also appear to vary. Such variation has implications for the consistency and accuracy of data collection and reporting. 7. The committee recommends that VA facilitate the consistency of data reporting in the following ways. 7.a. There should be agreement nationally, within VA, on the definition and use of specific diagnostic categories. 7.b. Clear decision rules for determining and recording the primary diagnosis should be developed. The committee also found that there was no opportunity for updating the database information gathered for each patient, even though a patient's condition can change in ways that are important for the analysis of information collected. 8. The committee recommends that there be established a mechanism by which individual patient information can be updated and incorporated in the database in a systematic fashion. Outreach The committee commends VA for Me extensive effort it has put forth to inform Persian Gulf veterans of the services available to them. In only two areas has the committee identified needs.

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EXECUTIVE SUMAL4RY 11 9. The committee recommends that VA develop informational pam- phlets for veterans. These pamphlets could be placed in facility treatment areas and could address common concerns such as the purpose and process of the VA Persian Gulf program, health effects of low-level exposure to chemical warfare agents, research activities related to Persian Gulf veterans and their results to date, and so forth. When first entering a VA health care facility to receive services, all veterans complete an intake form that requests infonnation about their service in the military. This presents an opportunity for the identification of Persian Gulf veterans who may not yet have participated in the special VA program for Persian Gulf veterans but who may wish to do so. 10. The committee recommends that VA consider redesigning intake forms so that the veteran is asked to identify whether or not she or he was deployed to the Persian Gulf War (or any other specific engagement). Provider Education VA has designed a number of high-quality programs to educate its designated Persian Gulf providers. These programs would be more effective if they reached a broader audience. 11. The committee recommends that primary care providers, in addition to the Registry practitioners, as well as the specialists who see Persian Gulf veterans, be provided the opportunity and encouraged to participate in the educational programs. 1 l.a. The audience for whom existing educational activities are developed related to providing health care for Persian Gulf veterans should be expanded to include other providers involved in the evaluation process, for example, designated specialty consultants. 1 l.b. VA should consider the following options for educating its providers: periodic team conferences (perhaps quarterly) to be held with all designated providers (including specialists) to discuss activities and findings and to provide updates on Persian Gulf issues and concerns, and the development of site-specific clinical pathways by designated specialists and Registry providers. Although reproductive issues have been addressed in VA educational efforts, other women's health issues have been less thoroughly explored.

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12 ADEQUACYOF THE VA PERSIAN GULFREGISTRY AND UCAP ll.c. Future educational efforts should place greater emphasis on women's health concerns. ll.d. VA should provide resources to establish a repository for accumulated knowledge of, expertise in, and experience win the health issues and problems of Persian Gulf veterans. Specialists who possess such expertise should be identified and available for consultation by telephone e-mail or telemedicine connections with local providers in all VA facilities. TABLE 1. Summary of Recommendations Topic Recommendation . . Diagnostic Process 1. A national diagnostic pathway for evaluation of Persian Gulf veterans' health problems should be adopted. l.a. The distinction between Phase I and Phase II should be eliminated. l.a(1~. The Persian Gulf Registry Code Sheet needs to be redesigned to reflect the elimination of Phase I and Phase II. l.a.~2) Provision should be made for the aggregation of data from both the original arid the revised systems. l.b. There should be a pearl for periodic reevaluation of patients without a diagnosis. 2. All patients entering the special VA program for Persian Gulf veterans should receive an expanded initial evaluation. 2.a. A national panel of experts should be con vened to determine the specific questions arid tests to be included in this expanded evaluation. 2.b. The section on exposures should be expanded to include additional questions about traumatic experiences. 2.c. The questionnaire should be administered in art interview format, but at a minimum, all yes and don't know responses should be reviewed with the patient. 3. Clinical practice guidelines should be developed for the most common presenting symptoms and the difficult-to-diagnose, ill-defined, or medically unex plained conditions. Continued

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EXECUTIVE SUMMARY TABLE 1 Continued - Topic Recommendation 13 - Diagnostic Process 3.a. Clinical practice guidelines for the investi (cont'd.) gation of women's health issues should be developed. 3.b. A formal mechanism that enables practitioners to provide feedback on the practice guidelines and their implementation should be developed. Referral 4. The committee recommends that the process and procedures for referral be modified. 4.a. Within facilities providing specialty consultation, certain individuals within each specialty should be designated to provide consultative services to Persian Gulf veterans. 4.b. Clinical pathways should be developed to specify the events and processes involved in referrals for specialty consultation. 4.c. If an inpatient evaluation is conducted, a site specif~c clinical pathway should be used to facilitate timely arid efficient evaluation. 4.d. Patients should be referred to another facility for evaluation only when the necessary resources are unavailable at the originating facility. 4.e. A transfer protocol should be developed to facilitate referral to another facility. 5. VA should establish an evaluation feedback mechanism that includes the elements of a performance improvement system. 6. VA should design and implement a brief yet comprehensive questionnaire to survey patient satisfaction with the special program for Persian Gulf veterans. Quality Patient Satisfaction Data 7. VA should facilitate the consistency of data reporting in the following ways: a. There should be agreement nationally, within VA, on the definition and use of specific diagnostic categories. b. Decision rules for determining arid recording the primal and the secondary diagnoses should be developed 8. A mechanism to allow updating of individual patient information should be developed. Continued

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14 ADEQUACYOF THE VA PERSIAN GULFREGISTRYAND UCAP TABLE 1 Continued Topic Recommendation Outreach 9. VA should develop for veterans informational pamphlets that address their concerns. 10. Intake forms should be redesigned to more easily identify the war or conflict in which veterans served. 11. Primary care providers, in addition to the Registry practitioners, as well as the specialists who see Persian Gulf veterans, should be provided the opportunity and encouraged to participate in the educational programs. ll.a. The audience for whom existing Persian Gulf educational activities are developed should be expanded to include other providers involved in the evaluation process. ll.b. VA should consider as educational activities team conferences that include spe cialists and should consider development of site specif~c clinical pathways. ll.c. Future efforts should place greater emphasis on women's health concerns. 1 l.d. Resources should be provided to establish a repository for accumulated knowledge, exper tise, and experience in Persian Gulf health issues alla problems. Education SUMMARY Change is inevitable and as such, it is important to plan for that change on the basis of new information and techniques that have emerged from past experiences. The committee believes that the changes recommended in this report build on the strengths and lessons learned through research, the implementation of the Registry and UCAP, and advances made in the field of clinical practice evaluation. It is with the intent to assist VA with better serving Persian Gulf veterans as well as facilitating the practice of VA practitioners that these recommendations are offered. The committee believes that the recommendations contained in this report will clarify areas of confusion and engage VA practitioners in efforts to design practice guidelines and pathways that will result in the rendering of better, more timely diagnostic services to Persian Gulf veterans. The committee urges VA to make the implementation of these recommendations a priority.