Listening to Gulf War Vets: A Qualitative Inquiry into the Health Experience and Treatment of those with Chronic Multisymptom Illness

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Anticipated Impacts on Veterans Healthcare: The first comprehensive qualitative study of the health experiences of Gulf War era Veterans will yield significant insight into the features of effective care models and treatments, as well as satisfaction with care. It will also create a rich, ongoing resource that can inform VA's effort to improve customer service and care for Gulf War Veterans including a specific focus on those with multisymptom illness and their caregivers. This research will identify better illness-specific health measures and promising therapeutic approaches appropriate to VA settings. Finally, our goal is to activate Veterans to be more engaged with the health system and VA research and policy processes, as well as to improve Gulf War Veteran communication with VA care providers. Project Background: While the proportion of Gulf War era Veterans seen in the VA is increasing rapidly, a disproportionate number of these Veterans suffer from chronic multisymptom illnesses. Although great efforts have been made to study the causes, we know little about the health experiences of Gulf War era Veterans with or without multisymptom illnesses. Gulf War registry studies have used rigorous quantitative methods that are well suited to broad and large-scale epidemiologic inquiry but are not well suited to characterize the atypical symptoms, effects of co-occurring symptoms, particular challenges related to symptoms and symptom combinations, and variations in symptom presentation among Gulf War Veterans with multisymptom illness. Project Objectives: The overarching goal is to create a comprehensive repository of qualitative patient interviews about experiences of Gulf War-related, chronic, multisymptom illness that can be used to motivate system change; inform research, clinical practice, and VA policy; and provide an ongoing resource for Veterans, caregivers, researchers, clinicians, and VA system leaders. The specific aims are: (1) Using qualitative methods, amplify patient and caregiver voices in Gulf War-related research and clinical care to improve understanding of experiences of illness and illuminate patient preferences which will contribute to the design and conduct of patient-centered research and care models; (2) Using mixed methods, improve understanding of the character of symptoms and functional problems specific to Gulf War era Veterans with multisymptom illness, and provide this information as a resource to develop improved patient-reported outcome measures; and (3) Using the results of these studies, develop products that identify promising treatments, regimens, and care models that can be studied in randomized trials or implemented broadly throughout the VA health system. Project Methods: To achieve these objectives, we will use a proven methodology to structure the conduct of video- and audio-taped interviews. The key features of this approach are (1) maximum variation sampling to capture the widest possible range of views and experience and to ensure representation from marginalized, seldom heard, historically underrepresented, and socially excluded groups; (2) in depth, individual interviews with Veterans and caregivers rather than focus groups or questionnaires; (3) dissemination strategies that are designed to accelerate system change and responsiveness to Veterans' problems; and (4) development of a repository in which health experience research can be reapplied and updated rather than used for a particular study and then lost. We will also employ mixed methods to ensure that broad and unbiased perspectives are incorporated in our research and products, including (1) conducting surveys of Veteran participants to use in triangulation and expansion mixed methods approaches, (2) linking findings with existing epidemiological research, and (3) conducting a literature assessment according to IOM recommendations. These comprehensive methods avoid bias in interpreting interview data and ensure consideration of factors associated with key differences in patient experience (e.g., race/ethnicity, socio-economic status, gender identity, sexual orientation, geographic region, previous treatment regimen, etc.).