Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults

被引:5
|
作者
Eliacin, Johanne [1 ,2 ,3 ,4 ,5 ]
Polsinelli, Angelina J. [2 ,6 ,12 ]
Epperson, Francine [2 ]
Gao, Sujuan [2 ,7 ]
Van Heiden, Sarah [2 ]
Westmoreland, Glenda [8 ]
Richards, Ralph [2 ]
Richards, Mollie [2 ]
Campbell, Christopher [2 ]
Hendrie, Hugh [2 ,9 ]
Risacher, Shannon L. [2 ,10 ]
Saykin, Andrew J. [2 ,10 ,11 ]
Wang, Sophia [2 ,9 ]
机构
[1] Indiana Univ Sch Med, Dept Internal Gen Med, Indianapolis, IN USA
[2] Indiana Alzheimers Dis Res Ctr, Indianapolis, IN USA
[3] Roudebush VA Med Ctr, VA HSR&D Ctr Hlth Informat & Commun, Indianapolis, IN USA
[4] Regenstrief Inst Inc, Indianapolis, IN USA
[5] VA Boston Healthcare Syst, Natl Ctr PTSD, Womens Hlth Sci Div, Boston, MA USA
[6] Indiana Univ Sch Med, Dept Neurol, Indianapolis, IN USA
[7] Indiana Univ Sch Med, Dept Biostat & Hlth Data Sci, Indianapolis, IN USA
[8] Indiana Univ Sch Med, Dept Med, Indianapolis, IN USA
[9] Indiana Univ Sch Med, Dept Psychiat, Indianapolis, IN USA
[10] Indiana Univ Sch Med, Dept Radiol & Imaging Sci, Indianapolis, IN USA
[11] Indiana Univ, Network Sci Inst, Bloomington, IN USA
[12] ABPP CN 355 16th St Suite 2500 GH, Indianapolis, IN 46202 USA
基金
美国国家卫生研究院;
关键词
Alzheimer's disease; biomarker research procedures; Black adults; community engaged research; health disparities; minority health; research participation; neuroimaging; SOCIOECONOMIC-STATUS; AFRICAN-AMERICANS; RECRUITMENT; INTERVENTION; PREDICTORS; RETENTION; KNOWLEDGE;
D O I
10.1002/trc2.12399
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
IntroductionThe study examined Black and White prospective participants' views of barriers to and facilitators of participation in Alzheimer's disease (AD) biomarker research. MethodsIn 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. ResultsMost 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). ConclusionOur 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.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. HIGHLIGHTS
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页数:15
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