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
Department of Internal General Medicine Indiana University School of Medicine Indianapolis Indiana USA.
Indiana Alzheimer's Disease Research Center Indianapolis Indiana USA.
Alzheimers Dement (N Y). 2023 Jun 5;9(2):e12399. doi: 10.1002/trc2.12399. eCollection 2023 Apr-Jun.
The study examined Black and White prospective participants' views of barriers to and facilitators of participation in Alzheimer's disease (AD) biomarker research.
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 ( = 29) completed qualitative interviews.
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).
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. 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.
本研究调查了黑人和白人潜在参与者对参与阿尔茨海默病（AD）生物标志物研究的障碍和促进因素的看法。
在一项混合方法研究中，399名从未参与过AD研究的社区居住的黑人和白人老年人（年龄≥55岁）完成了一项关于他们对AD生物标志物研究看法的调查。来自社会经济和教育背景较低的个人以及黑人男性被过度抽样，以了解传统上代表性不足群体的观点。一部分参与者（n = 29）完成了定性访谈。
大多数参与者对生物标志物研究表示感兴趣（总体为69%）。然而，黑人参与者比白人参与者相对更犹豫（28.9%对15.1%），更担心研究风险（28.9%对15.1%），并且认为参与脑部扫描存在多种障碍。即使在调整了对AD的信任和认知后，这些结果仍然存在。信息是AD生物标志物研究参与的主要障碍（缺乏时）和激励因素（提供时）。黑人老年人希望获得更多关于AD的信息（如风险、预防）、一般研究过程和特定生物标志物程序的信息。他们还希望得到研究结果，以便就自己的健康、研究赞助的社区宣传活动做出明智的决定，并希望研究人员减轻参与者在研究中的负担（如交通、基本需求）。
我们的研究结果通过关注没有AD研究经验的个体以及研究中传统上代表性不足的群体，提高了文献的代表性。结果表明，研究界需要改善信息共享和提高认识，增加在代表性不足群体社区中的影响力，降低附带成本，并向参与者提供有价值的个人健康信息，以提高兴趣。针对改进招募提出了具体建议。未来的研究将评估基于证据、对社会文化敏感的招募策略的实施情况，以增加黑人老年人参与AD生物标志物研究的人数。代表性不足群体的个体对阿尔茨海默病（AD）生物标志物研究感兴趣。在调整了信任和AD知识后，黑人参与者仍然更犹豫。信息是生物标志物研究的障碍（缺乏时）和激励因素（提供时）。减轻负担（如交通）对于招募黑人老年人至关重要。
