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How Participation in Gulf War Veteran Research Can Lead to Action: The Big Picture

How Participation in Gulf War Veteran Research Can Lead to Action: The Big Picture. Erin K. Dursa, PhD, MPH Post Deployment Health Services Department of Veterans Affairs. Why do people participate in research STUDIES?. Want to help others by contributing to medical knowledge

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How Participation in Gulf War Veteran Research Can Lead to Action: The Big Picture

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  1. How Participation in Gulf War Veteran Research Can Lead to Action: The Big Picture Erin K. Dursa, PhD, MPH Post Deployment Health Services Department of Veterans Affairs

  2. Why do people participate in research STUDIES? • Want to help others by contributing to medical knowledge • Personal experience of disease under study (oneself, friend, family member) • Monetary or other incentive Research Advisory Committee

  3. Why don’t PEOPLE PARTICIPATE IN RESEARCH STUDIES? • Distrust • Time commitment • Participant burden • Belief that participation will not have any impact Research Advisory Committee

  4. The Gulf War Longitudinal Cohort Study: Research to Action

  5. Early research studies in gulf war veterans • Soon after the 1990-1991 Gulf War, Veterans began to report a variety of symptoms and illnesses • VA implemented Gulf War Health Registry in 1992 • DoD implemented Comprehensive Clinical Evaluation Program in 1994 • Limitations of these types of data • No comparison group • Cannot establish causation Research Advisory Committee

  6. Early research studies in gulf war veterans • National Health Survey of Gulf War Veterans and Their Families (1995-1997) • Department of Veterans Affairs • Cross sectional, population based study of 15,000 Gulf War (deployed) and 15,000 Gulf Era (non-deployed) Veterans across the United States • Sampled from the entire known population of deployed Gulf War Veterans (n=693,826) and one half of all non-deployed Gulf Era Veterans (n=800,680) Kang et al., 1999 Research Advisory Committee

  7. Early research studies in gulf war veterans • National Health Survey of Gulf War Veterans and Their Families (1995-1997) • Mail and computer assisted telephone interview (CATI) survey • Deployment exposures, functioning, general health, symptoms, and diagnosed medical conditions • Gulf War Veterans reported significantly higher prevalence of functional impairment, health care utilization, symptoms, and medical conditions Kang et al., 1999 Research Advisory Committee

  8. Early research studies in gulf war veterans • National Health Survey of Gulf War Veterans and Their Families (1995-1997) • The top five medical conditions reported by Gulf War Veterans were sinusitis, gastritis, dermatitis, arthritis and frequent diarrhea • The top ten severe symptoms reported by Gulf War Veterans were back pain, runny nose, joint pain, headaches, being anxious, difficulty getting to sleep, feeling tired, skin rash, excessive fatigue, and heartburn Kang et al., 1999 Kang et al., 1999 Research Advisory Committee

  9. Early research studies in gulf war veterans • National Health Survey of Gulf War Veterans and Their Families (1995-1997) • First population based study to demonstrate a significant burden of disease • Characterized the disease among deployed Gulf War Veterans that later was named Gulf War illness • This study paved the way for future studies of Gulf War illness, other health outcomes, studies of spouses and children of Gulf War Veterans. Kang et al., 1999 Research Advisory Committee

  10. Additional SUB-studies from this cohort • Factor Analysis of Fatiguing Syndrome in Gulf War Era Veterans: Implications for Etiology and Pathogenesis (Young et al., 2003) • Post-traumatic Stress Disorder and Chronic Fatigue Syndrome-like Illness Among Gulf War Veterans: A Population-based Survey of 30,000 Veterans (Kang et al., 2003) • A Study of Gulf War Veterans with a Possible Deployment-Related Syndrome (Levine et al., 2006) Research Advisory Committee

  11. Additional studies • Spouses of Persian Gulf War I Veterans: Medical Evaluation of a U.S. Cohort (Eisen et al., 2006) • Increased Risk of Chronic Multisymptom Illness in Spouses of Gulf War Era Veterans (Blanchard et al., 2017) • Mental health in Spouses of U.S. Gulf War Veterans (Toomey et al., 2019) Research Advisory Committee

  12. Additional studies • Pregnancy Outcomes Among U.S. Gulf War Veterans: A Population Based Study of 30,000 Veterans (Kang et al., 2001) • Birth Defects Among 788 Children Born to Gulf War Veterans Based on Physical Examination (Shinawi et al., 2019) Research Advisory Committee

  13. Additional studies • Follow Up Study of a National Cohort of Gulf War and Gulf Era Veterans (2012-2014) • Report a significantly higher prevalence of chronic illnesses including Gulf War illness, COPD, tachycardia, coronary heart disease, hypertension, asthma, neuralgia, seizures, migraine headaches, irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia, and dermatitis Dursa et al, 2016 DOCUMENT TYPE/STATUS

  14. All These Studies.So What?

  15. IMPACT OF RESEARCH • Policy • Laws • Regulations • Compensation • Practice • Clinical guidelines • Diagnostic guidelines • Treatment guidelines DOCUMENT TYPE/STATUS

  16. Impact of research • PL 102-585 (November 4, 1992) • Directed VA to contract with the National Academies • Health Consequences of Service During the Persian Gulf War: Initial Findings and Recommendations for Immediate Action (1995) • Directed VA to create the Gulf War Registry DOCUMENT TYPE/STATUS

  17. IMPACT OF RESEARCH • Policy • PL 105-277, Persian Gulf War Veterans Act • PL 105-368, Veterans Program Enhancement Act • Direct the Secretary of VA to enter into a contractual agreement with National Academy of Engineering, Science and Medicine (NAESM) to review and evaluate the scientific and medical literature on the relationship between exposures associated with Gulf War Service and disease. Research Advisory Committee

  18. IMPACT OF RESEARCH • Policy • NAESM reviews published research studies to make determinations about the strength of exposure disease relationships • Numerous peer-reviewed publications from VA’s Longitudinal Cohort Study have been reviewed by the NAESM committees and have been used to make determinations about deployment related exposure and disease relationships Research Advisory Committee

  19. IMPACT OF RESEARCH • Policy • Sufficient evidence of an association between deployment to the Gulf War and the following conditions • Gulf War illness • Chronic fatigue syndrome • Irritable bowel syndrome • Functional dyspepsia • Generalized anxiety disorder • Depression Research Advisory Committee

  20. IMPACT OF RESEARCH • Policy • Limited/Suggestive Evidence of an Association • Amyotrophic Lateral Sclerosis (ALS) • Fibromyalgia and widespread pain Research Advisory Committee

  21. Impact of research • Practice (research and clinical) • Case definition project • Project INDEPTH • WRIISC Research Advisory Committee

  22. IMPACT OF RESEARCH • Personal • Rapport with investigators • Can link to other services and programs • Stay current on Gulf War Veteran research Research Advisory Committee

  23. THANK YOU! ERIN.DURSA2@VA.GOV

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