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

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 partic...

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Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10242196/
https://www.ncbi.nlm.nih.gov/pubmed/37287470
http://dx.doi.org/10.1002/trc2.12399
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author 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
author_facet 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
author_sort Eliacin, Johanne
collection PubMed
description 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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spelling pubmed-102421962023-06-07 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 Alzheimers Dement (N Y) Research Articles 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. John Wiley and Sons Inc. 2023-06-05 /pmc/articles/PMC10242196/ /pubmed/37287470 http://dx.doi.org/10.1002/trc2.12399 Text en © 2023 The Authors. Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals LLC on behalf of Alzheimer's Association. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
spellingShingle Research Articles
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
Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults
title Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults
title_full Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults
title_fullStr Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults
title_full_unstemmed Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults
title_short Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults
title_sort barriers and facilitators to participating in alzheimer's disease biomarker research in black and white older adults
topic Research Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10242196/
https://www.ncbi.nlm.nih.gov/pubmed/37287470
http://dx.doi.org/10.1002/trc2.12399
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