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; Heiden, Sarah Van; Westmoreland, Glenda R.; Richards, Ralph C.; Richards, Mollie; Campbell, Christopher S.; Hendrie, Hugh C.; Risacher, Shannon L.; Saykin, Andrew J.; Wang, Sophia

doi:10.1002/trc2.12399

Cited by 6 publications

(1 citation statement)

References 49 publications

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“…Importantly, the most frequently incorrect item on the quiz pertained to potential benefits of study participation ("Using the mindLAMP app will help improve my cognitive functioning," yes/no). Clear communication of potential benefits in research is a core ethical requirement and future study materials should clarify expectations for potential benefits to facilitate trust, particularly among historically marginalized groups [112][113][114][115].…”

Section: Discussionmentioning

confidence: 99%

Mobility-Based Smartphone Digital Phenotypes for Unobtrusively Capturing Everyday Cognition, Mood, and Community Life-Space in Older Adults: Feasibility, Acceptability, and Preliminary Validity Study (Preprint)

Hackett,

Xu,

McKniff

et al. 2024

Preprint

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BACKGROUND Current methods of monitoring cognition in older adults are insufficient to address the growing burden of Alzheimer’s disease and related dementias (AD/ADRD). New approaches that are sensitive, scalable, objective, and reflective of meaningful functional outcomes are direly needed. Mobility trajectories and geospatial life space patterns reflect many aspects of cognitive and functional integrity and may be useful proxies of age-related cognitive decline. OBJECTIVE We investigated the feasibility, acceptability, and preliminary validity of a 1-month smartphone digital phenotyping protocol to infer everyday cognition, function, and mood in older adults based on passively-obtained GPS data. We also sought to clarify the intrinsic and extrinsic factors that are associated with mobility phenotypes for consideration in future studies. METHODS A total of 37 older adults aged 63-85 with healthy cognition (n=28), Mild Cognitive Impairment (n=5) and mild dementia (n=1) used an open-source smartphone application (mindLAMP) to unobtrusively capture GPS trajectories for 4 weeks. Raw GPS data were processed into interpretable features across categories including activity, inactivity, routine, and location diversity. Monthly average and monthly intraindividual variability (IIV) metrics were calculated for each feature to test a priori hypotheses informed by a neuropsychological model. Comprehensive validation measures collected at baseline were compared alongside monthly GPS features to examine construct validity. Feasibility and acceptability outcomes included participant retention, comprehension of study procedures, technical difficulties, and satisfaction ratings at study debriefing. RESULTS All (100%) participants completed the 4-week monitoring period without major adverse events, 100% reported satisfaction with the explanation of study procedures, and 97% reported no feelings of discomfort. Performance on the comprehension of consent quiz was 97% on average and associated with education and race. Technical issues requiring troubleshooting were relatively infrequent, though 41% of participants reported battery drain. Moderate to strong correlations (r>.3) were identified between GPS features and validators. Specifically, individuals with greater mobility activity, less routine, and more location diversity demonstrated better cognition, less functional impairment, less depression, more community participation, and more geospatial life-space on objective and subjective validation measures. Contrary to predictions, greater IIV in mobility was also associated with positive validation outcomes. While many demographic and technology-related factors were not associated with GPS features, income, native English language, season of study participation and occupational status were related. CONCLUSIONS Theoretically-informed digital phenotypes of mobility are feasibly captured from older adults’ personal smartphone devices and relate to a variety of clinically meaningful measures including cognitive test performance, reported functional decline, mood, and community activity. Future studies should consider the impact of intrinsic and extrinsic factors when interpreting mobility phenotypes. Overall, smartphone digital phenotyping is a promising method to unobtrusively capture relevant risk and resilience factors in the context of aging and AD/ADRD and should continue to be investigated in larger and more diverse samples.

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Section: Discussionmentioning

confidence: 99%

Mobility-Based Smartphone Digital Phenotypes for Unobtrusively Capturing Everyday Cognition, Mood, and Community Life-Space in Older Adults: Feasibility, Acceptability, and Preliminary Validity Study (Preprint)

Hackett,

Xu,

McKniff

et al. 2024

Preprint

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Increasing research study engagement in minoritized populations: An example from the Black Women Inflammation and Tau Study

Stradford,

Heyworth,

Jackson

et al. 2024

Alzheimer's & Dementia

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Black women are sorely underrepresented in studies of Alzheimer's disease and related dementias (ADRD) despite higher rates of ADRD diagnoses than in non‐Hispanic White women. There are many reasons for underrepresentation, including medical mistrust, limited access to clinical studies, and restrictive study inclusion criteria. These pervasive barriers to research participation are often not considered during study development and, if eventually thought of tend to be after the fact. Community‐engaged research (CER) approaches are an effective method for reducing participation barriers. This article describes how CER approaches were used to develop the Black Women Inflammation and Tau Study (BWITS), a prospective study to identify biopsychosocial risk factors for ADRD in Black women. Guidelines discussed here for future ADRD research in diverse populations are informed by Community‐Based Participatory Research (CBPR), the National Institute on Minority Health and Health Disparities (NIMHD), and the Patient‐Centered Outcomes Research Institute (PCORI).Highlights Understand the historical tragedies related to medical practices and research designs that may contribute to the underrepresentation of Black Americans in research studies today. Highlight community‐engaged research approaches that effectively reduce participation barriers in minoritized groups. Review Community‐Based Participatory Research, National Institute of Minority Health and Health Disparities, and the Patient‐Centered Outcomes Research Institute guidelines for conducting research with minoritized communities. Describe using the three frameworks to inform the study development protocol for the Black Women Inflammation and Tau Study. Conclude by offering study design considerations that we hope can be a helpful starting point for others conducting research with minoritized communities.

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Developing and applying potentially scalable recruitment strategies to accelerate ADRD research participation of Black adults

Richards,

Musema

et al. 2024

Alzheimer's & Dementia

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More than 2 million older Americans from underrepresented racial and ethnic minority groups (URGs) have early‐stage Alzheimer's disease and related dementias (ADRD). There are very few scalable recruitment strategies, particularly for Black older adults, to accelerate participation in ADRD research. The Indiana Alzheimer's Disease Research Center (IADRC) and its Community Advisory Board developed and implemented the innovative RAAISE‐D Framework. This Framework informed the creation of community‐first recruitment strategies designed to accelerate participation of Black older adults in ADRD research. Preliminary outcomes from its implementation included the doubling of Black adult enrollment (46, 13.4% to 101, 26.9%) from April 2020 to April 2024. Black adults were more likely to have normal cognition, be female, and ≤ 12 years of education than non‐Hispanic White adults. The RAAISE‐D Framework identified key concepts for URG focused recruitment strategies which successfully accelerated enrollment of Black adults in ADRD research and could be generalized to other URGs.Highlights RAAISE‐D Framework provides adaptable URG recruitment strategies. IADRC CAB‐researcher partnership was the foundation of community‐first methodology. RAAISE‐D Framework doubled the Black enrollment in the IADRC in 4 years.

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

Cited by 6 publications

References 49 publications

Mobility-Based Smartphone Digital Phenotypes for Unobtrusively Capturing Everyday Cognition, Mood, and Community Life-Space in Older Adults: Feasibility, Acceptability, and Preliminary Validity Study (Preprint)

Mobility-Based Smartphone Digital Phenotypes for Unobtrusively Capturing Everyday Cognition, Mood, and Community Life-Space in Older Adults: Feasibility, Acceptability, and Preliminary Validity Study (Preprint)

Increasing research study engagement in minoritized populations: An example from the Black Women Inflammation and Tau Study

Developing and applying potentially scalable recruitment strategies to accelerate ADRD research participation of Black adults

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