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影响美国黑人和白人参与阿尔茨海默病生物标志物研究的因素。

Factors influencing the participation of Black and White Americans in Alzheimer's disease biomarker research.

作者信息

Eliacin Johanne, Hathaway Elizabeth, Wang Sophia, O'Connor Caitlin, Saykin Andrew J, Cameron Kenzie A

机构信息

VA HSR&D Center for Health Information and Communication Richard L. Roudebush VA Medical Center Indianapolis Indiana USA.

Regenstrief Institute Indianapolis Indiana USA.

出版信息

Alzheimers Dement (Amst). 2022 Dec 7;14(1):e12384. doi: 10.1002/dad2.12384. eCollection 2022.

DOI:10.1002/dad2.12384
PMID:36505397
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9728547/
Abstract

INTRODUCTION

Alzheimer's disease (AD) is a public health priority. AD biomarkers may vary based on race, but the recruitment of diverse participants has been challenging.

METHODS

Three groups of Black and White participants with and without prior research advocacy or participation were interviewed individually or in focus groups to better understand perspectives related to AD biomarker research participation. A rapid qualitative data analytic approach was used to analyze the data.

RESULTS

Identified barriers to AD biomarker research participation included hesitancy due to fear, distrust of research and researchers, lack of relevant knowledge, and lack of research test results disclosure. Drivers for engagement in biomarker research procedures included knowledge about research, AD, and related clinical procedures, perceived benefits of participation, and outreach from trusted sources.

DISCUSSION

Participants' comments related to the need for diversity in research and desire for results disclosure suggest opportunities to engage Black individuals.

HIGHLIGHTS

Black Americans experience more salient barriers to Alzheimer's disease (AD) biomarker research participation.Concerns about research diversity influence research participation decisions.Research test disclosure may affect research participation and retention.

摘要

引言

阿尔茨海默病(AD)是公共卫生领域的重点关注对象。AD生物标志物可能因种族而异,但招募不同种族的参与者一直具有挑战性。

方法

对三组有或没有先前研究宣传或参与经历的黑人和白人参与者进行了单独或焦点小组访谈,以更好地了解与AD生物标志物研究参与相关的观点。采用快速定性数据分析方法对数据进行分析。

结果

确定的AD生物标志物研究参与障碍包括因恐惧而犹豫不决、对研究和研究人员的不信任、缺乏相关知识以及缺乏研究测试结果披露。参与生物标志物研究程序的驱动因素包括对研究、AD及相关临床程序的了解、参与的感知益处以及来自可信来源的宣传。

讨论

参与者关于研究多样性需求和结果披露愿望的评论表明存在吸引黑人参与的机会。

要点

美国黑人在参与阿尔茨海默病(AD)生物标志物研究方面面临更突出的障碍。对研究多样性的担忧会影响研究参与决策。研究测试披露可能会影响研究参与和留存率。

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