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SDR 17-151 – HSR Study

SDR 17-151
Listening to Gulf War Vets: A Qualitative Inquiry into the Health Experience and Treatment of those with Chronic Multisymptom Illness
Shannon Nugent, PhD
VA Portland Health Care System, Portland, OR
Portland, OR
Funding Period: September 2018 - March 2024


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 these Veterans, identify better illness-specific health measures and promising therapeutic approaches, and activate Veterans to be more engaged with the health system and improve communication with providers about their care. 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 multisystem illnesses. Moreover, Gulf War registry studies have used methods that are suited to epidemiologic inquiry but are not well suited to characterize the atypical symptoms, particular challenges, and variations among Veterans with this disease. Project Objectives The overarching goal is to create a comprehensive repository of qualitative patient interviews about experiences related to Gulf War-related chronic multisymptom illness that can be used to motivate system change, inform research, and provide an ongoing resource for Veterans, caregivers, researchers, clinicians, and 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, 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, and socially excluded groups; (2) extensive interviews with Veterans and caregivers rather than focus groups or questionnaires; (3) dissemination strategies that are designed to accelerate system change and make it more responsive 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. The 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, geographic region, previous treatment regimen, etc.).

External Links for this Project

NIH Reporter

Grant Number: I01HX002148-01A1

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Journal Articles

  1. Cohen DE, Sullivan KA, McNeil RB, Gulf War Illness Common Data Elements Working Group:, Symptoms Assessment Working Group:, McNeil RB, Ashford W, Bested A, Bunker J, Cheema A, Cohen DE, Cook D, Cournoyer J, Craddock T, Golier J, Hardie A, Helmer D, Lindheimer JB, Lloyd PJ, Kerr K, Krengel M, Nadkarni S, Nugent S, Paris B, Reinhard M, Rumm P, Schneiderman A, Sims KJ, Steele L, Turner M, Systems Assessment Working Group:, Sullivan KA, Abdullah L, Abreu M, Abu-Donia M, Aenlle K, Arocho J, Balbin E, Baraniuk J, Block K, Block M, DeBeer B, Engdahl B, Filipov N, Fletcher MA, Kalasinsky V, Kokkotou E, Lidie K, Little D, Loging W, Morris M, Nathanson L, Nichols MD, Pasinetti G, Shungu D, Waziry P, VanLeeuwen J, Younger J. A common language for Gulf War Illness (GWI) research studies: GWI common data elements. Life sciences. 2022 Feb 1; 290:119818. [view]
  2. Nugent SM, Freeman M, Ayers CK, Winchell KA, Press AM, O'Neil ME, Paynter R, Kansagara D. A Systematic Review of Therapeutic Interventions and Management Strategies for Gulf War Illness. Military medicine. 2021 Jan 30; 186(1-2):e169-e178. [view]
  3. Nugent SM, Cottrell E, Knight SJ, Helfand M. Health Experiences Research as a Resource and Mechanism for Veteran Engagement in VA Healthcare Research and Care Delivery. Journal of general internal medicine. 2022 Apr 1; 37(Suppl 1):118-122. [view]
  4. Lafferty M, Winchell K, Cottrell E, Knight S, Nugent SM. Women of the Gulf War: Understanding Their Military and Health Experiences Over 30 Years. Military medicine. 2023 Aug 29; 188(9-10):3191-3198. [view]

  1. Gean E, Ayers CK, Winchell KA, Freeman M, Press AM, Paynter R, Kansagara D, Nugent S. Biological Measures And Diagnostic Tools For Gulf War Illness: A Systematic Review. Management eBriefs. Portland, Oregon: VA/HSR&D Evidence Synthesis Program; 2020 Oct 20. 109 p. Report No.: 176. [view]

DRA: Military and Environmental Exposures, Other Conditions
DRE: TRL - Applied/Translational
Keywords: Gulf War Illness
MeSH Terms: None at this time.

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