Conclusion

The VA Gulf War Registry Health Examination Program was a nationwide effort to provide Gulf War veterans with access to high quality health care. This clinical evaluation program served as entr´┐Że into the VA health care system for a new generation of war veterans. The VA registry also has been an effective tool for educating both health care providers and Gulf War veterans. By creating a specific program within VA, it was possible to furnish designated health care personnel with up-to-date information on a complex and rapidly changing health issue. As a result, VA physicians were able to offer veterans knowledgeable health care soon after the Gulf War. In addition, the VA registry generated a mailing list of concerned veterans, which has been used to provide information directly to this population as new clinical and research findings have become available.

In 1994, the Department of Defense developed the Comprehensive Clinical Evaluation Program (CCEP) and the VA upgraded its Gulf War registry. These two clinical evaluation programs were designed to collect comparable data on the health of Gulf War veterans. The initiation of DoD’s Gulf War clinical evaluation program was critical in addressing the health concerns of veterans still on active duty. Because the DoD and VA clinical registries focused on different groups of veterans, they provided enhanced health care for the entire population of Gulf War veterans. Together, VA and DoD Gulf War clinical registries have provided a systematic clinical examination for over 14% of this population of war veterans. No previous military population has been as extensively evaluated as have Gulf War veterans.

In addition to patient care, the CCEP has assisted DoD in its outreach and educational efforts among military health care providers and among veterans and their families. Because of the DoD and VA clinical evaluation programs, informed health care professionals were available to answer many of the questions that veterans had about their wartime experiences, which is a prime responsibility of the government after sending troops to war.

Over the past 10 years, the clinical data obtained from the VA and DoD registries also contributed to health surveillance efforts among Gulf War veterans. Computerized clinical data obtained from this population of health care-seeking veterans has been continuously evaluated to identify unusual patterns of disease. Data from these clinical programs served another important role in research, by helping to generate hypotheses for further scientific studies on the health consequences of service in the Arabian Gulf.

The registries, which are in effect large clinical case-series, have increased our awareness and understanding of the wide spectrum of symptoms and health problems experienced by Gulf War veterans. More directly than any other method, face-to- face clinical examinations by VA and DoD physicians brought home the distress and needs of Gulf War veterans. The knowledge gained from examining veterans in the initial VA registry also proved critical in providing government assistance. Clinical registry data were used to develop and implement legislation that provided Gulf War veterans with disability assistance for unexplained symptoms (Public Law103-446, November 2, 1994; "The Persian Gulf War Veterans Benefits Act").

Because of the inherent limitations of even very large clinical case-series, caution has to be exercised in the interpretation of registry data. The participants of these clinical evaluation programs are a self-selected group of veterans who were concerned about possible adverse exposures during military service. As a result, these veterans are not entirely representative of the overall population of Gulf War veterans. In fact, data from the VA National Survey of Gulf War veterans and results from other studies of U.S. and British veterans indicate that registry participants are more ill than other Gulf War veterans.

Because registry participants are not a random sample of Gulf War veterans, it is difficult to compare specific rates of various illnesses in the registries with other military and civilian populations. For example, it is not possible to determine whether a higher than expected percentage of registry patients have developed cancer, a neurological disorder, psychological problems, or kidney disease. Nor is it possible to determine whether a particular exposure in the Gulf caused an illness. Nevertheless, alarm bells would have sounded if a large number of registry participants had presented severely ill with a particular disease that could be associated with a wartime exposure.

Just as clinical case series cannot be used to determine specific rates of disease, conclusions about the overall health of Gulf War veterans cannot be drawn by considering the total number of registry participants (over 100,000 to date). Although one out of seven U.S. Gulf War veterans enrolled and were evaluated in one of the three registries, this does not mean that 100,000 Gulf War veterans have an unusual syndrome or are experiencing a serious illness. More than 80% of veterans evaluated in the registries had well-known health problems and received conventional diagnoses and treatment. Moreover, 6% to 9% of evaluated veterans reported that they were in very good or excellent health, or that they did not have a clinically significant new illness. Both VA and DoD have repeatedly encouraged all veterans with health concerns or questions to enroll in one of the clinical evaluation programs, whether they felt ill or not. This inclusive approach was taken in order to ensure that the health needs of all Gulf War veterans were adequately addressed by the government.

Although the registries cannot provide specific rates of disease, the massive outreach effort brought large numbers of veterans into the VA and DoD health care system for a standardized clinical evaluation, which increased the chances of identifying anything unusual. A clinical case-series, as provided by the VA and DoD registries, is the optimum initial approach for determining whether a population is suffering from a new or unique illness.241 Whenever the question arises about a possible new syndrome the first step that has to be taken is to actually examine sick patients. It is no t possible to draw conclusions from unconfirmed reports of an unusual disease or to design scientific studies before information is obtained by directly observing the nature of the problem. Consequently, the clinical data provided by the Gulf War registries in the USA, Britain, and Canada were critical in designing the initial research studies of Gulf War veterans.

In over 100,000 direct clinical examinations, no single type of illness predominated. Instead, Gulf War veterans were found to have a wide variety of health problems that are observed in other outpatient populations. Systematic evaluation of such a large population of veterans is unlikely to have missed examples of a serious disease. As noted seven years go by an independent scientific committee of the Institute of Medicine, which assessed the objective findings from the first 10,000 CCEP examinations, a unique illness that was both severe and common among Gulf War veterans would probably have been identified; whereas, a mild illness or a disease that affected a small number of veterans might escape detection.135

Now that over 100,000 veterans have been examined since the end of the Gulf War, it is improbable that large numbers of Gulf War veterans could have developed a particular health problem, which has remained undetected over an 11 year period. The registries are unlikely to have missed examples of serious disease because Gulf War veterans with more severe health problems have tended to enroll for a registry examination. It also is important to note that a unique war syndrome has not been identified among the military veterans deployed by the other 40 Coalition countries or among the nearly one million local inhabitants of northern Saudi Arabia and Kuwait.

Although a unique health problem has not been identified, some research studies have found indications of various abnormalities among small groups of veterans. Consequently, VA and DoD supported research is in progress to determine whether these findings apply to a larger population of veterans and whether they are related to an adverse exposure during the Gulf War.31 Gulf War veterans also could develop well-known diseases with longer latency periods, as has happened among Vietnam veterans. For instance, there has been a determination that Vietnam veterans may be at increased risk of type II diabetes from exposure to Agent Orange. The health of Gulf War veterans therefore will have to be assessed in prospective studies. The VA continues to update mortality data on Gulf War veterans. In addition, there are several Federally- funded, longitudinal studies of morbidity among Gulf War veterans, and the DoD has designed a large epidemiological study, the Millennium Cohort Study, to assess the long-term health of deployed troops.31

The findings from over 100,000 clinical examinations have substantially aided health care efforts. Gulf War veterans who report health problems are definitely ill. However, they do not have a single type of health problem. Consequently, Gulf War veterans have to be evaluated and treated as individuals. Assumptions cannot be made about the health of a Gulf War veteran who presents for clinical evaluation. Each veteran requires a medical history and screening examination, with treatment tailored to the specific needs of the patient. For Gulf War veterans who have well-known health problems effective therapy is available. Treatment also is available for veterans with chronic, unexplained symptoms. Cognitive-behavioral therapy has been show to reduce disability from many kinds of illnesses.242,243

Several important lessons have been learned from the implementation and analysis of the VA and DoD Gulf War clinical evaluation programs. These registries have clearly shown that they can:

  1. Provide high quality health care to concerned war veterans;
  2. Serve an important educational and risk communication function for veterans and their families;
  3. Generate research hypotheses; and,
  4. Provide objective clinical data needed to design appropriate clinical and epidemiological research studies

Another important lesson learned from the Gulf War registry experience has been that structural differences must be eliminated in the design stage when more than one clinical registry is established for a population of veterans. Careful attention has to be paid to what tests are done, and how the data is captured and reported. Even minor differences in the structure of large clinical programs can have a substantial effect on analysis, preventing ready integration of databases. Close coordination will thus be required between VA and DoD in any future assessment of post-deployment health problems.

When considering the use of special clinical evaluation programs in the future, their shortcomings have to be understood as well. Because a clinical registry has to ensure a systematic and uniform clinical assessment to generate consistent data, clinicians are not free to eliminate unnecessary tests and procedures based on clinical judgment -- although both VA and DoD physicians have been encouraged to expand the scope of the standardized registry examination whenever necessary to arrive at a definite diagnosis. Due to this standardization, special clinical programs waste health care resources and generate confusion from false positive test results.

These problems have to be considered before deciding to implement a clinical registry, which is not based on a specific disease category. In addition, special clinical programs do not benefit veterans presenting for routine inpatient and outpatient care and not for a registry examination.

To address the shortcomings of special clinical evaluation programs, VA and DoD have taken concrete steps to better understand and routinely manage post-deployment health problems, and to improve veterans’ satisfaction with their health care.244,245 Both VA and DoD have established deployment health research centers to determine the causes and most effective treatments for veterans’ health problems. In addition, they are using an evidence-based approach to develop clinical practice guidelines for the evaluation of military personnel and veterans following hazardous deployments.246 Just completed are a "Post-Deployment Health Evaluation and Management Guideline" and a clinical practice guideline for chronic fatigue and muscle pain. A clinical guideline for PTSD will be a future step in the development of a sound strategy for the screening, assessment, and care of veterans returning from military deployments.

The regular use of clinical practice guidelines will decrease the need for ad hoc clinical evaluation programs. For the first time, troops will be specifically screened in the primary health care setting for illnesses that may be related to a military deployment. The Gulf War registry programs were good tools for bringing veterans into the VA and DoD health care systems, providing knowledgeable health care, and facilitating risk communication and educational efforts. However, special clinical programs only reach a minority of veterans and the clinical findings from self-selected populations are difficult to interpret. In contrast, the post-deployment clinical practice guidelines will ensure that the health problems of all veterans returning from hazardous deployments are addressed whenever they seek care in the DoD or VA health systems.

In addition to deployment research centers and clinical practice guidelines, DoD and VA have developed comprehensive educational and outreach programs. They have instituted Internet web sites and augmented outreach efforts to provide deployed personnel and veterans, and their families, with timely information on health risks and the availability of clinical care and assistance.244,247 Web sites and other sources of deployment information also have been developed to assist military and VA health care personnel caring for service members and veterans following deployment.248

Eleven years after the war it is clear that the VA and DoD Gulf War clinical evaluation programs made an invaluable contribution to the health care of Gulf War veteran. Importantly, these special clinical programs pointed the way to improved systems of health care for future veterans of hazardous deployments. This report provides a summary of the clinical findings from the systematic examination of over 100,000 Gulf War veterans. These data will aid clinicians caring for Gulf War veterans and can be used to develop further research hypotheses.

 

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