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Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults.
Eliacin, Johanne; Polsinelli, Angelina J; Epperson, Francine; Gao, Sujuan; Van Heiden, Sarah; Westmoreland, Glenda; Richards, Ralph; Richards, Mollie; Campbell, Christopher; Hendrie, Hugh; Risacher, Shannon L; Saykin, Andrew J; Wang, Sophia.
Affiliation
  • Eliacin J; Department of Internal General Medicine Indiana University School of Medicine Indianapolis Indiana USA.
  • Polsinelli AJ; Indiana Alzheimer's Disease Research Center Indianapolis Indiana USA.
  • Epperson F; VA HSR&D Center for Health Information and Communication Roudebush VA Medical Center Indianapolis Indiana USA.
  • Gao S; Regenstrief Institute, Inc. Indianapolis Indiana USA.
  • Van Heiden S; Women's Health Sciences Division National Center for PTSD VA Boston Healthcare System Boston Massachusetts USA.
  • Westmoreland G; Indiana Alzheimer's Disease Research Center Indianapolis Indiana USA.
  • Richards R; Department of Neurology Indiana University School of Medicine Indianapolis Indiana USA.
  • Richards M; Indiana Alzheimer's Disease Research Center Indianapolis Indiana USA.
  • Campbell C; Indiana Alzheimer's Disease Research Center Indianapolis Indiana USA.
  • Hendrie H; Department of Biostatistics and Health Data Science Indiana University School of Medicine Indianapolis Indiana USA.
  • Risacher SL; Indiana Alzheimer's Disease Research Center Indianapolis Indiana USA.
  • Saykin AJ; Department of Medicine Indiana University School of Medicine Indianapolis Indiana USA.
  • Wang S; Indiana Alzheimer's Disease Research Center Indianapolis Indiana USA.
Alzheimers Dement (N Y) ; 9(2): e12399, 2023.
Article in En | MEDLINE | ID: mdl-37287470
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.
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Full text: 1 Collection: 01-internacional Database: MEDLINE Type of study: Prognostic_studies / Qualitative_research Language: En Journal: Alzheimers Dement (N Y) Year: 2023 Document type: Article Country of publication: Estados Unidos

Full text: 1 Collection: 01-internacional Database: MEDLINE Type of study: Prognostic_studies / Qualitative_research Language: En Journal: Alzheimers Dement (N Y) Year: 2023 Document type: Article Country of publication: Estados Unidos