Health Care Journeys of Veterans With Gulf War Illness

Abstract

Background: There is an acknowledged need to improve care for patients with persistent physical symptoms. Veterans who served in the 1990–91 Gulf War are a subpopulation of U.S. military Veterans who have been struggling with persistent physical symptoms for decades. The current study sought to characterize Veterans’ historic path through the health care system and current experience of care to identify opportunities to improve care. Methods: Analysis of interviews conducted with 31 Veterans who met criteria for Gulf War Illness (GWI) was conducted to understand Veterans’ health care journeys, from symptom onset to the present. Results: Early in their journey, Veterans felt uncertain about the nature of their condition and how to explain it to clinicians. Veterans described a cycle of referrals to specialists to pursue individual symptoms and subsequent return to primary care with few actionable findings. During this cycle, Veterans often felt dismissed or invalidated by clinicians. Over time, most Veterans felt care became increasingly fragmented, with multiple clinicians caring for them without a plan to manage GWI and little acknowledgement of GWI as a discrete illness. Further in their journey, some Veterans were referred to tertiary centers where they encountered a more holistic approach. Conclusions: Findings point to the need to shift care for Veterans with GWI, and similar conditions, away from overly focusing on individual symptoms. Instead, primary care clinicians need training and support, potentially from tertiary care experts, to develop and implement holistic care plans that recognize GWI as a complex chronic condition.

Affiliated Institutions

• Center for Innovation US
• Palo Alto University US
• Stanford University US
• Iowa State University US
• University at Albany, State University of New York US
• VA New Jersey Health Care System US
• VA New England Healthcare System US
• Brandeis University US
• VA Palo Alto Health Care System US
• Veterans Health Administration US
• Boston University US
• Michael E. DeBakey VA Medical Center US
• Baylor College of Medicine US
• Albany State University US

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