Dataset Information

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

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.

SUBMITTER: Eliacin J

PROVIDER: S-EPMC9728547 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature

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Publications

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

Eliacin Johanne J Hathaway Elizabeth E Wang Sophia S O'Connor Caitlin C Saykin Andrew J AJ Cameron Kenzie A KA

Alzheimer's & dementia (Amsterdam, Netherlands) 20221207 1

<h4>Introduction</h4>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.<h4>Methods</h4>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. ...[more]

PMID: 36505397

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Project description: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.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.

Project description:Psychological well-being is associated with cognition in later life but has not been examined across diverse populations-including minoritized communities at disproportionately high risk of dementia. Further, most previous work has not been able to examine links between specific facets of psychological well-being and performance within distinct cognitive domains that can capture subclinical impairment. Using a well-characterized sample followed through enrollment in an NIH-funded Alzheimer's Disease Center, we sought to test these associations within three racial groups at baseline. Participants were N = 529 cognitively unimpaired Black, American Indian/Alaska Native (AI/AN), and white middle-aged and older adults (mean age = 63.6, SD = 8.1, range = 45-88 years) enrolled in the Wisconsin Alzheimer's Disease Research Center's Clinical Core. Predictors included validated NIH Toolbox Emotion Battery scales assessing positive affect, general life satisfaction, and meaning and purpose. Outcomes included performance on widely used tests of executive functioning and episodic memory. We conducted race-stratified regression models to assess within-group relationships. Black and AI/AN participants reported lower life satisfaction than white participants. Racial disparities were not observed for positive affect or meaning and purpose scores. Across groups, life satisfaction predicted better executive functioning. Similar associations were observed for positive affect in Black and AI/AN samples but not among whites. In general, well-being measures were not related to performance on tests of episodic memory. Our results highlight well-being as a potentially important determinant of late-life cognitive health, particularly executive functioning, that is modifiable if older adults are connected with appropriate resources and supports. Further, psychological well-being may represent a potent target for brain health interventions tailored for Black and Native communities.

Project description:BackgroundLow levels of total 25-hydroxyvitamin D are common among black Americans. Vitamin D-binding protein has not been considered in the assessment of vitamin D deficiency.MethodsIn the Healthy Aging in Neighborhoods of Diversity across the Life Span cohort of blacks and whites (2085 participants), we measured levels of total 25-hydroxyvitamin D, vitamin D-binding protein, and parathyroid hormone as well as bone mineral density (BMD). We genotyped study participants for two common polymorphisms in the vitamin D-binding protein gene (rs7041 and rs4588). We estimated levels of bioavailable 25-hydroxyvitamin D in homozygous participants.ResultsMean (±SE) levels of both total 25-hydroxyvitamin D and vitamin D-binding protein were lower in blacks than in whites (total 25-hydroxyvitamin D, 15.6±0.2 ng per milliliter vs. 25.8±0.4 ng per milliliter, P<0.001; vitamin D-binding protein, 168±3 μg per milliliter vs. 337±5 μg per milliliter, P<0.001). Genetic polymorphisms independently appeared to explain 79.4% and 9.9% of the variation in levels of vitamin D-binding protein and total 25-hydroxyvitamin D, respectively. BMD was higher in blacks than in whites (1.05±0.01 g per square centimeter vs. 0.94±0.01 g per square centimeter, P<0.001). Levels of parathyroid hormone increased with decreasing levels of total or bioavailable 25-hydroxyvitamin D (P<0.001 for both relationships), yet within each quintile of parathyroid hormone concentration, blacks had significantly lower levels of total 25-hydroxyvitamin D than whites. Among homozygous participants, blacks and whites had similar levels of bioavailable 25-hydroxyvitamin D overall (2.9±0.1 ng per milliliter and 3.1±0.1 ng per milliliter, respectively; P=0.71) and within quintiles of parathyroid hormone concentration.ConclusionsCommunity-dwelling black Americans, as compared with whites, had low levels of total 25-hydroxyvitamin D and vitamin D-binding protein, resulting in similar concentrations of estimated bioavailable 25-hydroxyvitamin D. Racial differences in the prevalence of common genetic polymorphisms provide a likely explanation for this observation. (Funded by the National Institute on Aging and others.).

Dataset Information

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

Introduction

Methods

Results

Discussion

Highlights

Publications

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

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