1. Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults.
- Author
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Eliacin J, Polsinelli AJ, Epperson F, Gao S, Van Heiden S, Westmoreland G, Richards R, Richards M, Campbell C, Hendrie H, Risacher SL, Saykin AJ, and Wang S
- Abstract
Introduction: The study examined Black and White prospective participants' views of barriers to and facilitators of participation in Alzheimer's disease (AD) biomarker research., Methods: In a mixed-methods study, 399 community-dwelling Black and White older adults (age ≥55) who had never participated in AD research completed a survey about their perceptions of AD biomarker research. Individuals from lower socioeconomic and education backgrounds and Black men were over-sampled to address perspectives of traditionally under-represented groups. A subset of participants ( n = 29) completed qualitative interviews., Results: Most participants expressed interest in biomarker research (overall 69%). However, Black participants were comparatively more hesitant than White participants (28.9% vs 15.1%), were more concerned about study risks (28.9% vs 15.1%), and perceived multiple barriers to participating in brain scans. These results persisted even after adjusting for trust and perceived knowledge of AD. Information was a primary barrier (when absent) and incentive (when provided) for AD biomarker research participation. Black older adults desired more information about AD (eg, risk, prevention), general research processes, and specific biomarker procedures. They also desired return of results to make informed decisions about their health, research-sponsored community awareness events, and for researchers to mitigate the burden placed on participants in research (eg, transportation, basic needs)., Conclusion: Our findings increase representativeness in the literature by focusing on individuals with no history of AD research experience and those from traditionally underrepresented groups in research. Results suggest that the research community needs to improve information sharing and raising awareness, increase their presence in the communities of underrepresented groups, reduce incidental costs, and provide valuable personal health information to participants to increase interest. Specific recommendations for improving recruitment are addressed. Future studies will assess the implementation of evidence-based, socioculturally sensitive recruitment strategies to increase enrollment of Black older adults into AD biomarker studies. HIGHLIGHTS: Individuals from under-represented groups are interested in Alzheimer's disease (AD) biomarker research.After adjusting for trust and AD knowledge, Black participants were still more hesitant.Information is a barrier (when absent) to and incentive (when given) for biomarker studies.Reducing burden (e.g., transportation) is essential for recruiting Black older adults., Competing Interests: None of the investigators have a conflict of interest. JE receives support from Veterans Affairs (VA) IK2 HX002283, National Institute on Aging (NIA; P30 AG10133, P30 AG072976), Veterans Health Affairs, Health Services Research and Development Career Development Award [16‐153], and Academy of Communication in Health Putnam Scholar Fellowship. AJP receives support from NIA (U01 AG057195, P30AG072976, P30AG010133) and Alzheimer's Association (LDRFP‐21‐818464). SG receives report from the NIA (P30AG072976, P30AG010133). SLR receives support from the NIA (K01AG049060; R01 AG061788; P30 AG010133, P30 AG072976; New Vision Award) and Eli Lilly, Biogen, and Eisai. AJS receives support from multiple NIH grants (P30 AG010133, P30 AG072976, R01 AG019771, R01 AG057739, U01 AG024904, R01 LM013463, R01 AG068193, T32 AG071444, and U01 AG068057 and U01 AG072177). He has also received support from Avid Radiopharmaceuticals, a subsidiary of Eli Lilly (in kind contribution of Positron Emission Tomography [PET] tracer precursor); Bayer Oncology (Scientific Advisory Board); Eisai (Scientific Advisory Board); Siemens Medical Solutions USA, Inc. (Dementia Advisory Board); Springer‐Nature Publishing (Editorial Office Support as Editor‐in‐Chief, Brain Imaging and Behavior). SW receives support from the NIA (K23AG062555, P30AG072976, P30AG010133, R21AG074179) and the VA for clinical services. She receives book royalties from American Psychiatry Publishing Institute and consultant fees from Data Safety Monitoring Board., (© 2023 The Authors. Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)
- Published
- 2023
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