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 ID: 927045
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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
Slide2Why 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
June 11, 2019
Research Advisory Committee
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Slide3Why don’t PEOPLE PARTICIPATE IN RESEARCH STUDIES?
Distrust
Time commitment
Participant burdenBelief that participation will not have any impact
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Research Advisory Committee
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Slide4The Gulf War Longitudinal Cohort Study: Research to Action
Slide5Early 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
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Research Advisory Committee
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Slide6Early 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
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Research Advisory Committee
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Slide7Early 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
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Research Advisory Committee
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Slide8Early 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
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Research Advisory Committee
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Slide9Early 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
June 11, 2019
Research Advisory Committee
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Slide10Additional 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)
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Research Advisory Committee
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Slide11Additional 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)
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Research Advisory Committee
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Slide12Additional 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)
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Research Advisory Committee
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Slide13Additional 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
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DOCUMENT TYPE/STATUS
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Slide14All These Studies.So What?
Slide15IMPACT OF RESEARCH Policy
Laws
Regulations
Compensation PracticeClinical guidelinesDiagnostic guidelines
Treatment guidelines
DATE
DOCUMENT TYPE/STATUS
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Slide16Impact of researchPL 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
DATE
DOCUMENT TYPE/STATUS
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Slide17IMPACT OF RESEARCH
Policy
PL 105-277, Persian Gulf War Veterans Act
PL 105-368, Veterans Program Enhancement ActDirect 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.
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Research Advisory Committee
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Slide18IMPACT 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
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Research Advisory Committee
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Slide19IMPACT OF RESEARCH
Policy
Sufficient evidence of an association between deployment to the Gulf War and the following conditions
Gulf War illnessChronic fatigue syndromeIrritable bowel syndrome
Functional dyspepsiaGeneralized anxiety disorderDepression
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Research Advisory Committee
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Slide20IMPACT OF RESEARCH Policy
Limited/Suggestive Evidence of an Association
Amyotrophic Lateral Sclerosis (ALS)
Fibromyalgia and widespread pain
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Research Advisory Committee
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Slide21Impact of research
Practice (research and clinical)
Case definition project
Project INDEPTHWRIISC
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Slide22IMPACT OF RESEARCH Personal
Rapport with investigators
Can link to other services and programs
Stay current on Gulf War Veteran research
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Slide23THANK YOU!
ERIN.DURSA2@VA.GOV