1
Introduction

On August 2, 1990, Iraq invaded the independent nation of Kuwait. Within 5 days the United States began to deploy troops to the region. Ultimately, in response to United Nations Resolution 678, a coalition of 41 countries mobilized a force of almost 1 million soldiers, 700,000 of whom were U.S. troops. (See Appendix A for a list of participating countries and numbers of troops.)

From August 1990 through early January 1991, troops settled into position and prepared for war. On January 16, 1991, intense air attacks against the Iraqi forces were begun, and on February 24 a ground attack was launched. Within 4 days Iraqi resistance crumbled. Following the fighting, the number of troops in the area declined rapidly. By June 13, 1991, the last U.S. troops who participated in the ground war returned home.

The demographic characteristics of the U.S. troops deployed to the Gulf War differed from those involved in previous military engagements. Overall, they were older, a large proportion (about 17%) were from National Guard and Reserve units, and almost 7% of the total forces were women.

U.S. casualties were low during the Gulf War. There were 148 combat deaths, with an additional 145 deaths due to disease or injury. Deployed personnel were, however, exposed to a number of stressors. The term stressor generally refers to the external circumstances that challenge or obstruct an individual (IOM, 1997a). Stressors to which those deployed to the Gulf War may have been exposed are listed in Table 1-1.

Following the war, most veterans returned home and resumed their normal activities. Within a relatively short time, however, some began to report health problems they believed were connected to their service in the Gulf. Commonly reported problems include fatigue, moodiness, cognitive problems, muscle and joint pain, shortness of breath, and rashes (Fukuda et al., 1998; Iowa Persian Gulf Study Group, 1997).



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1 Introduction On August 2, 1990, Iraq invaded the independent nation of Kuwait. Within 5 days the United States began to deploy troops to the region. Ultimately, in response to United Nations Resolution 678, a coalition of 41 countries mobilized a force of almost 1 million soldiers, 700,000 of whom were U.S. troops. (See Appendix A for a list of participating countries and numbers of troops.) From August 1990 through early January 1991, troops settled into position and prepared for war. On January 16, 1991, intense air attacks against the Iraqi forces were begun, and on February 24 a ground attack was launched. Within 4 days Iraqi resistance crumbled. Following the fighting, the number of troops in the area declined rapidly. By June 13, 1991, the last U.S. troops who participated in the ground war returned home. The demographic characteristics of the U.S. troops deployed to the Gulf War differed from those involved in previous military engagements. Overall, they were older, a large proportion (about 17%) were from National Guard and Reserve units, and almost 7% of the total forces were women. U.S. casualties were low during the Gulf War. There were 148 combat deaths, with an additional 145 deaths due to disease or injury. Deployed personnel were, however, exposed to a number of stressors. The term stressor generally refers to the external circumstances that challenge or obstruct an individual (IOM, 1997a). Stressors to which those deployed to the Gulf War may have been exposed are listed in Table 1-1. Following the war, most veterans returned home and resumed their normal activities. Within a relatively short time, however, some began to report health problems they believed were connected to their service in the Gulf. Commonly reported problems include fatigue, moodiness, cognitive problems, muscle and joint pain, shortness of breath, and rashes (Fukuda et al., 1998; Iowa Persian Gulf Study Group, 1997).

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TABLE 1-1 Stressors of the Gulf War Chemical Environmental Combat Related Oil fire smoke Sand Rapid mobilization leading to unexpected disruption of lives, particularly for Reserve and Guard units Diesel and jet fuel Fleas and other insects Waiting for combat to begin Solvents and other petrochemicals Extreme heat Potential cumulative effect of repeated deployments to conflict Insect repellents Relatively primitive living conditions Rapid demobilization, particularly for Reserve and Guard units CARC paint Unfamiliar character of region SCUD missile attacks Depleted uranium Prohibition against interaction with indigenous population Multiple chemical alarms Anthrax and botulinum vaccines Exposure to dead and mutilated bodies   Pyridostigmine bromide pills Exposure to dead animals     SOURCE: IOM, 1996b, 1998. There have been a variety of responses to these reports. The Department of Veterans Affairs (VA) and the Department of Defense (DoD) developed programs to examine Gulf War veterans and diagnose and treat their illnesses. Researchers and policymakers also responded with studies to characterize the veterans' health problems, explore potential causes of those problems, and assess the adequacy of the response by VA and DoD. VA and DoD Programs for Gulf War Veterans VA Persian Gulf Registry and Uniform Case Assessment Protocol In 1992, the VA developed and implemented the Persian Gulf Registry. The original purposes of the registry were to create a database containing medical and other data on Gulf War veterans that would assist in addressing questions about possible future effects of exposures to air pollutants and other environmental agents; and

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serve as the basis for future medical surveillance (VA, 1995). Exposures, particularly those associated with the oil well fires, were included as part of the veterans' history taking. As time passed, it became apparent that several exposure issues and a host of symptoms needed further investigation. The VA diagnostic program for Gulf War veterans is divided into two phases, the Registry Exam and the Uniform Case Assessment Protocol (UCAP). During the Registry Exam, a complete medical history is taken; time of onset of symptoms or condition, intensity, the degree of physical incapacitation and details of any treatment received are recorded; and basic laboratory tests are administered. UCAP provides for the additional examination and testing given to those veterans who, after completing the registry evaluation, are found to have a disability but no clearly defined diagnosis that explains their health problems. Symptom-specific supplemental baseline laboratory tests and consultations are ordered. If a diagnosis is not made after completing the UCAP investigation of the veteran's symptoms and conditions, the veteran may be referred to one of four Gulf Referral Centers. These centers offer inpatient stays during which observation, multidisciplinary consultation, documentation of lengthy occupational and exposure histories, and serial physical examinations are conducted. DoD Comprehensive Clinical Evaluation Program In 1994, the DoD implemented a clinical diagnostic program similar to that of the VA, called the Comprehensive Clinical Evaluation Program (CCEP). This program was intended to provide a thorough, systematic clinical evaluation for the diagnosis of health problems of Gulf War veterans. Specifically, the CCEP was designed to (1) assess possible Gulf War-related conditions; (2) streamline patient access to medical care; (3) make clinical diagnoses in order to treat patients; (4) provide a standardized, staged evaluation and treatment program; and (5) strengthen the coordination between DoD and the VA in the provision of health care (IOM, 1997a). The CCEP is a two-phase process as is the VA program. It consists of a medical history, physical examinations, and laboratory tests. All participants in the CCEP are evaluated by a primary care physician at their local medical treatment facility and receive specialty consultations, if the primary care physician deems them to be appropriate. Evaluation at this phase includes a survey for nonspecific patient symptoms, including fatigue, joint pain, diarrhea, difficulty concentrating, memory and sleep disturbances, and rashes. Primary care physicians may refer patients to Phase II for further specialty consultations if they determine that such referrals are clinically indicated. These Phase II evaluations are conducted at a regional medical center and consist of targeted, symptom-specific examinations, lab tests, and consultations. In March 1995, DoD established the Specialized Care Center at Walter Reed Army Medical Center to provide additional evaluation, treatment, and re-

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habilitation for patients suffering from chronic debilitating symptoms. The Specialized Care Program consists of an intensive 3-week evaluation and treatment protocol designed to improve the health status of participants. As of March 1999, the program had served 200 patients. Participation in the VA and DoD Programs Participation in the VA and DoD special diagnostic programs for Gulf War veterans is voluntary. By March 1999, almost 125,000 Gulf War veterans had participated in one of these programs, 72,000 in the VA Registry and 52,000 in the CCEP. Table 1–2 displays some of the basic demographic and military service characteristics of the first 83,000 participants as of late 1997, the latest date for which complete information is available for both. As can be seen from these data, the demographic and military characteristics of those participating in the registries differ from the distributions of those characteristics in all Gulf War veterans. TABLE 1-2 Demographic and Military Service Characteristics of All Gulf War Veterans and Veterans Participating in the VA PGR/UCAP or the DoD CCEP Demographic or Military Service Characteristics % All Gulf War Veteransa (n = 696,530) % PGR/UCAPb (n = 57,253) % CCEPc (n = 27,747) % PGR or CCEPd (n = 83,197) Age Group (yrs.) (1991) <25 42.0 37.0 24.2 33.1 25–34 39.7 34.6 48.9 39.4 35–44 15.5 21.5 23.7 21.9 45–54 2.6 6.2 2.9 5.0 55–64 0.2 0.7 0.2 0.6 >65 0.0 0.0 0.0 0.0 Sexe Male 89.1 89.8 89.7 89.9 Female 6.9 10.2 10.3 10.1 Unknown 4.0 0.0 0.0 0.0 Race White 65.3 64.5 55.4 61.5 Black 21.8 23.6 32.9 26.6 Hispanic 4.8 5.5 5.1 5.4 American Indian 0.6 0.8 0.6 0.7 Asian 2.2 1.1 1.5 1.2 Other 1.3 1.3 2.3 1.6 Unknown 4.1 3.2 2.3 3.0

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Demographic or Military Service Characteristics % All Gulf War Veteransa (n = 696,530) % PGR/ UCAPb (n = 57,253) % CCEPc (n = 27,747) % PGR or CCEPd (n = 83,197) Marital Status Married 48.0 49.8 66.4 54.9 Single 45.1 42.6 26.8 37.7 No longer married 2.8 4.4 4.5 4.4 Unknown 4.1 3.2 2.3 2.9 Highest Level of Education Elementary school 0.5 1.4 0.3 1.0 High school 1.8 1.3 0.8 1.1 High school diploma 73.7 74.9 73.7 74.7 Some college 2.5 2.8 5.0 3.5 Bachelor's degree 10.0 10.2 8.3 9.5 Master's degree 2.2 1.4 2.2 1.6 Post-master's degree 4.1 4.0 6.1 4.7 Other/unknown 5.2 4.1 3.5 3.9 Branch Army 50.4 73.3 84.5 76.8 Air Force 11.9 6.4 6.8 6.5 Marine Corps 14.9 13.0 5.0 10.5 Navy 22.7 7.1 3.7 6.0 Coast Guard 0.1 0.2 0.1 0.2 Pay Grade Enlisted 89.3 93.2 89.9 92.2 Officer 9.5 5.6 7.7 6.3 Warrant 1.2 1.1 2.4 1.5 Military Component Active duty 83.9 60.7 91.1 70.9 Reserve and guard 16.1 39.3 8.9 29.1 a Gulf War veterans include military personnel deployed to the Gulf between August 1, 1990, and July 31, 1991. b VA PGR/UCAP participants from inception to November 27, 1997. c DoD CCEP participants from inception to December 10, 1997. d Unique veterans from both registries; 1,803 individuals are enrolled in both registries. e If sex was unknown in the Defense Manpower Data Center roster, sex as recorded in the registry was used to tabulate the data. SOURCE: Department of Veterans Affairs, 1998b.

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Gulf War Reports and Evaluations: A Brief Summary As concern increased about Gulf War veterans' health problems and their causes, the media began to talk about "Gulf War Syndrome," an illness they described as characterized by the long and growing list of symptoms being experienced by Gulf War veterans. Congress enacted legislation aimed at providing medical care to veterans experiencing problems and called for investigations into the causes. U.S. General Accounting Office The U.S. General Accounting Office (GAO) conducted several evaluations of Gulf War veterans' health problems and the VA and DoD responses. GAO criticized the Army's preparation for and response to depleted uranium (DU) exposure during the Gulf War (GAO, 1993). A report on the health concerns of Gulf War veterans from the 123rd Army Reserve Command headquartered in Indianapolis, Indiana (GAO, 1995), found that most of these veterans reported having health problems that limited their physical and social activities to some extent and that veterans believed these problems were caused by their service in the Gulf. The veterans were either dissatisfied with the medical services received from DoD and VA or were unaware such services were available. A June 1997 report was extremely critical of the DoD and VA efforts to monitor the clinical progress of Gulf War veterans (GAO, 1997). In an investigation of tumors in Gulf War veterans, GAO reported that incidence could not be reliably determined from available data (GAO, 1998a). A subsequent report observed that "[w]hile the number of Gulf War veterans who participated in the military operations known as Desert Shield and Desert Storm is well established at almost 700,000, the number who actually suffer, or believe they suffer, from illnesses related to their Gulf War service remains uncertain 7 years after the war" (GAO, 1998b:2). This report recommended that VA provide a case management approach to the care of Gulf War veterans, and that VA work to fully and uniformly implement these systems in their facilities. Presidential Advisory Committee on Gulf War Veterans' Illnesses In May 1995, President Clinton established the Presidential Advisory Committee on Gulf War Veterans' Illnesses (PAC) to conduct an independent and comprehensive review of health concerns related to Gulf War service. This 12-member panel reviewed research, coordination efforts, medical treatment, outreach, reviews conducted by other governmental and nongovernmental bodies, exposures and health effects, and the possibility that chemical and biological weapons were used in the Gulf.

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The PAC deliberations resulted in six key conclusions. 1.   Although the government had been somewhat slow to act at the end of the Gulf War, it was now providing appropriate medical care to Gulf War veterans. 2.   The government's research portfolio was appropriately weighted toward epidemiological studies and studies on stress-related disorders. 3.   DoD investigations into possible chemical and biological warfare agent exposures had produced an atmosphere of mistrust surrounding every aspect of Gulf War veterans' illnesses, and the government had lost credibility with the public. 4.   Many veterans have illnesses that are likely connected to their service in the Gulf. 5.   There is no evidence of a causal link between reported symptoms and illnesses and specific exposures. 6.   Stress is likely to be an important contributing factor in these illnesses (Presidential Advisory Committee, 1996a,b, 1997). Institute of Medicine The Institute of Medicine (IOM) undertook several activities focusing on the potential health implications of deployment in the Gulf War and on the responses by the DoD and the VA to address veterans' health concerns. The IOM Medical Follow-up Agency examined the health consequences of service in the Gulf and developed recommendations for research and information systems. The first report of this group (IOM, 1995:8) recommended that "the VA Persian Gulf Health Registry should be limited and specific to gathering information to determine the types of conditions reported. There should be efforts to implement quality control and standardization of data collected by the registry." The report also recommended improved outreach to inform veterans about the availability of the registry. A second report focused on findings and recommendations concerning research and information systems needed to assess the health consequences of service during the Gulf War (IOM, 1996b). An evaluation of the adequacy of the DoD CCEP concluded that, even though the CCEP was a comprehensive effort to address the clinical needs of those who had served in the Gulf War, specific changes in the protocol would help increase its diagnostic yield (IOM, 1996a). The study also concluded that the CCEP was not appropriate as a research tool but that the results could and should be used to educate Gulf War veterans and the physicians caring for them, to improve the medical protocol itself, and to evaluate patient outcomes. IOM continued its evaluation of the CCEP, focusing attention specifically on difficult-to-diagnose problems and ill-defined conditions, the diagnosis and treatment of stress and psychiatric conditions, and the assessment of health problems of those who may have been exposed to low levels of nerve agents. The report addressing the adequacy of the CCEP relative to nerve agents con-

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cluded that the CCEP provided an appropriate screening approach to the diagnosis of neurological diseases and conditions but recommended certain refinements to enhance the program (IOM, 1997b). In addressing the issues of medically unexplained conditions, and stress and psychiatric disorders, the IOM (1997a) emphasized the need to treat veterans' symptoms whether or not there had been a diagnosis; the need to provide increased screening for depression, traumatic exposure, and substance abuse; the importance of conducting an evaluation across facilities to determine consistency in terms of examination and patterns of referral; and the need for greater coordination between the DoD and the VA, particularly relating to the ongoing treatment of patients. A separate IOM committee evaluated the adequacy of the VA medical program for Gulf War veterans (IOM, 1998). Its report complimented the VA for its overall provider education and outreach efforts. Recommendations called for the development of clinical practice guidelines for the difficult-to-diagnose or unexplained symptom constellations, and for the establishment of a system of feedback and continuous quality improvement to monitor the care received by Gulf War veterans. Other Investigations In April 1997, the U.S. Senate Committee on Veterans' Affairs created an expert bipartisan special investigation unit (SIU) to undertake a comprehensive and detailed review of what may have caused the illnesses of Gulf War veterans. This unit also investigated what should be done to treat these veterans and how to avoid such uncertainty in future situations. Its report found that "while there does not appear to be any single 'Gulf War syndrome,' there is a constellation of symptoms and illnesses whose cause or causes eludes explanation at this time" (U.S. Senate Committee on Veterans' Affairs, 1998:3). Further, there is a great need to monitor Gulf War veterans to determine whether their health is getting better or worse and to define the long-term health effects they may experience. The Executive Office of the President (EOP, 1998) issued a report making several recommendations aimed at improving the federal government's responses to the health needs of its military, veterans and their families. When health problems are identified following a military deployment, the report states, there must be plans in place to improve and facilitate cooperation and coordination among DoD, VA, and HHS. The report recommended (1) creating a Military and Veterans Health Coordinating Board, (2) developing an Information Management/Information Technology Task Force, and (3) implementing strategies aimed at deployment health, record keeping, health risk communication, and research (EOP, 1998).

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Measuring the Health of Gulf War Veterans Committee Charge and Activities Because of continuing questions and concerns about the health of Gulf War veterans, VA and DoD asked IOM in December 1997 to convene a group of experts to consider the numerous questions and determine how best to address the issues of measuring and monitoring the health of Gulf War veterans. The charge to IOM was to (1) identify relevant questions regarding the evaluation of the health status of active-duty troops and veterans deployed to the Gulf War; (2) identify issues to be addressed in the development of study designs and methods that would be used to answer such questions; and (3) develop a research design(s) and methods that could be used to address such questions. In response to the request from DoD and VA, IOM convened the Committee on Measuring the Health of Gulf War Veterans. The committee is composed of experts in outcomes analysis, study design, research methods, statistics, epidemiology, health status measurement, military health databases, clinical medicine, and Gulf War veterans' health. As a starting point for its deliberations, the committee held a workshop on May 7, 1998, to obtain background information on the health concerns of Gulf War veterans and an overview of relevant research. During subsequent meetings the committee reviewed and analyzed additional information on the following topics: symptoms, complaints, and diagnoses of veterans; completed population-based and sample-survey research on the health of Gulf War veterans (United States, Canada, and the United Kingdom); VA and DoD health databases; the reports of the PAC, the GAO, and other IOM committees; and books and articles describing and evaluating approaches and instruments for measuring health status. Questions Regarding the Health of Gulf War Veterans The first task before the committee was to identify questions regarding the health of Gulf War veterans. A review of sources such as congressional testimony, GAO reports, and presentations to the committee pointed to several key groups and their questions. Some of these questions can be addressed by research, but others are in the realm of policy. Gulf War veterans want to know how many of them are ill and why. They are concerned about their medically unexplained symptoms. They want to know whether they will get better or not, and they want reassurance that the government is trying to help them. Veterans also want to know whether DoD and VA are providing them with the treatments they need in an appropriate and timely manner. VA and DoD are also asking questions. They want to know whether the health of ill veterans is getting better, worse, or remaining constant; how to best track the health of Gulf War veterans over time, especially for ill-defined or undiagnosed conditions; and what scientific studies should be conducted to resolve

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areas of continued scientific uncertainty related to health outcomes and treatment efficacy. Questions from Congress and GAO concern how many veterans are ill and their clinical progress over time, that is, whether ill veterans are better or worse now than when first examined. They want to know whether veterans are receiving appropriate, effective, high-quality care; about plans for collecting longitudinal information on the health of ill veterans; whether the number of ill veterans is increasing; and whether these veterans are ill because of something that happened in the Gulf. Furthermore, many individuals and groups are now beginning to ask if these questions apply only to Gulf War veterans or if they also apply to the veterans of any conflict. The committee concluded that no one study can answer all the questions, but that it is possible to design a study that will measure the health of Gulf War veterans and permit comparisons with the public in general, veterans who were not deployed to a conflict, and veterans of other conflicts. This report discusses the deliberations and recommendations of the committee, including a research portfolio designed to help answer some of the questions being asked about the health of Gulf War veterans. The research portfolio and its centerpiece, a prospective cohort study, are intended to (1) monitor the current and future health status of Gulf War veterans; (2) identify the extent to which there are differences in health between Gulf War veterans and other groups who did not serve in the Gulf War; and (3) provide information that can be used to generate hypotheses about why any such differences exist. Specifically, the study designed by the committee is intended to answer the following questions: 1.   How healthy are Gulf War veterans? 2.   In what ways does the health of Gulf War veterans change over time? 3.   Now and in the future, how does the health of Gulf War veterans compare with that of the general population; persons in the military at the time of the Gulf War but not deployed; persons in the military at the time of the Gulf War who were deployed to nonconflict areas; and persons in the military deployed to other conflicts, such as Bosnia and Somalia? 4.   What individual and environmental characteristics are associated with observed differences in health between Gulf War veterans and comparison groups?

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Defining Gulf War Veterans Various definitions related to the Gulf War are relevant to this committee's work. The definitions used by the VA and DoD differ, making it essential that the committee specify those that it has adopted. The VA defines the Gulf War Era as beginning on August 2, 1990, and continuing to the present. Other definitions used by the VA include Gulf War Conflict Veteran—discharged from active duty status on or after August 2, 1990, and with service in the Southwest Asia theater of operations and with in-theater service occurring between August 2, 1990, and July 31, 1991. Gulf War Theater Veteran—discharged from active duty status on or after August 2, 1990, and with service in the Southwest Asia theater of operations. Gulf War Era Veteran—discharged from active duty status on or after August 2, 1990. The definitions generally followed by DoD are those published in the final report of the Presidential Advisory Committee on Gulf War Veterans' Illnesses (1996a). Gulf War theater of operations is defined as including the Persian Gulf, Kuwait, Iraq, Saudi Arabia, Red Sea, Gulf of Oman, Gulf of Aden, northern portion of the Arabian Sea, Oman, Bahrain, Qatar, and the United Arab Emirates. Gulf War veteran is a person who served on active duty in the Gulf War theater of operations anytime during the period from August 2, 1990 (Iraq invaded Kuwait) to June 13, 1991 (last U.S. service member who participated in the ground war returned to the United States). Gulf War era veteran is defined as anyone who served on active duty anywhere other than the Gulf War theater of operations during the August 2, 1990, through June 13, 1991, time frame. For purposes of this report, the committee has followed the PAC definition of a Gulf War veteran, that is, any person who served on active duty in the Gulf War theater between August 2, 1990, and June 13, 1991. Thus, the population of Gulf War "veterans" includes individuals who were on active duty at the time of Iraq's invasion of Kuwait as well as individuals called up for active duty from reserve and National Guard units. It may include individuals who remain on active duty or continue to serve in reserve units or the National Guard. Similarly, "veterans" of other conflicts (e.g., Bosnia, Somalia), who are of interest as a comparison group, are persons who served on active duty in a designated area during a specified period of time, regardless of their current service status.

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Structure of the Report Chapter 2 reviews some of the numerous research studies that have examined specific aspects of the health of Gulf War veterans. Chapter 3 discusses concepts of health and approaches used to measure it. Chapter 4 describes the committee-developed portfolio of research studies for coordinating research efforts aimed at addressing questions about the health of Gulf War veterans. Chapter 5 details the components of the prospective cohort study designed by the committee, including its general design, sampling and scheduling issues, selection of survey modes and instruments, cost, ethical issues, and oversight responsibilities. The final chapter presents the committee's conclusions regarding the need to establish a means for measuring the health of Gulf War veterans and assessing changes over time.