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Abstract Details
Willingness to Participate in Research among Black Patients with Liver Disease: A National Cross-Sectional Study
J Viral Hepat. 2021 Mar 4. doi: 10.1111/jvh.13493. Online ahead of print.
F Hunter McGuire12, Kat André23, Minyone L Bradsher2, Dawn Harrison4, Richard K Sterling5, K Rajender Reddy6, Marina Serper6, Carol E Golin17, Nancy Reau8, Joseph K Lim9, David R Nelson10, Souvik Sarkar11, Donna M Evon24
Author information
1Department of Health Behavior, UNC Gillings School of Global Public Health, Chapel Hill, NC, USA.
2Center for Gastrointestinal Biology and Disease, UNC School of Medicine, Chapel Hill, NC, USA.
3College of Psychology, Nova Southeastern University, Fort Lauderdale, FL, USA.
4Division of Gastroenterology and Hepatology, UNC School of Medicine, Chapel Hill, NC, USA.
5Division of Gastroenterology, Virginia Commonwealth University, Hepatology & Nutrition, Richmond, VA, USA.
6Division of Gastroenterology and Hepatology, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA.
7Division of General Medicine and Epidemiology, UNC School of Medicine, Chapel Hill, NC, USA.
8Department of Internal Medicine, Section of Hepatology, Rush University Medical Center, Chicago, IL, USA.
9Digestive Diseases, Department of Internal Medicine, Yale School of Medicine, New Haven, CT, USA.
10Division of Gastroenterology, Hepatology, and Nutrition, Department of Medicine, University of Florida, Jacksonville, FL, USA.
11Division of Gastroenterology and Hepatology, University of California Davis School of Medicine, Sacramento, CA, USA.
Abstract
In the United States, Black people are disproportionately diagnosed with hepatitis C virus (HCV) compared to White people but are under-represented in HCV studies. In this US-based cross-sectional telephone survey study, we assessed willingness to participate (WTP) in health/medical research and attitudes and beliefs that may influence WTP among Black patients with HCV. Two hundred participants who had current or prior HCV diagnosis and self-identified as Black or African-American were recruited from a national HCV cohort study and an outpatient hepatology clinic. WTP responses ranged from 1 (not at all willing) to 5 (very willing). Multivariable models were used to identify factors associated with the overall mean WTP score. In addition, an open-ended question solicited strategies to help increase research participation from the Black community. Overall, participants reported moderate WTP in research (Mean [95% Confidence Interval (CI)] = 3.78 [3.68, 3.88]). Of 13 types of research presented, participants reported lowest WTP for randomized controlled trials of medications (Mean [95% CI] = 2.31 [2.11, 2.50]). The initial multivariable model identified higher subjective knowledge of research as positively associated with WTP (Parameter estimate [95% CI] = 0.15 [0.02, 0.27]). Sensitivity analyses also identified higher perceived benefits of research as an additional factor associated with WTP. Qualitative findings indicate that greater community-based outreach efforts would increase accessibility of research opportunities. When given the opportunity to participate, Black participants with HCV reported moderate WTP in health/medical research. Research sponsors and investigators should employ community-based outreach to expand access and awareness of research opportunities.