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Mixed methods used in the refinement of an Alzheimer’s study registry to optimize recruitment of Latinx and Black individuals
Author(s) -
Aggarwal Raj,
Stowell Carter,
Plant Aaron,
Creech Deborah Neffa,
George Sheba,
Williams Emily,
Fiore Nora,
Langbaum Jessica B
Publication year - 2021
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1002/alz.054137
Subject(s) - generalizability theory , usability , disease registry , medicine , dementia , gerontology , family medicine , psychology , disease , computer science , developmental psychology , pathology , human–computer interaction
Background Alzheimer’s disease (AD) disproportionately affects Latinx and Black individuals, yet they are underrepresented in AD studies. Recruitment challenges for these populations limit generalizability of findings. The purpose of this 2020 study was to improve an existing online AD participant registry to optimize recruitment of Latinx and Black individuals. Refinements were geared toward recruitment on mobile devices, as research suggests mobile‐first approaches may be more successful within these populations. Method We used an iterative, mixed methods approach to improve the registry with 45‐75‐year‐old Latinx and Black individuals who self‐reported no mild cognitive impairment, dementia, or AD diagnoses. Strategies included (in order): four focus groups (n=39); an online survey to assess attitudes and acceptability toward the existing registry (n=677); usability testing of existing registry (n=40); development of a refined registry prototype; qualitative (n=24) and quantitative (n=392) usability testing of refined prototype; a final online survey to assess attitudes and acceptability toward refined prototype (n=769). To assess acceptability of registry improvements, quantitative and qualitative data from the initial and final surveys were compared. Result There was an increase between the surveys in the percentage of Latinx and Black respondents who agreed that: they would likely sign up for the registry (48.2% to 54.1% and 42.1% to 53.4%); the registry was designed with people like them in mind (54.4% to 63.0% and 50.1% to 61.2%); and most of their family and friends would relate to the registry (41.2% to 51.9% and 36.8% to 49.4%). Survey participants responded favorably to specific content in the refined registry (e.g., discussing challenges of recruiting Latinx and Black individuals for AD studies and showing diversity of program staff). Qualitative responses in the final survey included that the refined registry was easy to understand and navigate, and was trustworthy. Nearly half of respondents (49.4%) said they would be likely to sign up for the registry using their smartphone or tablet. Conclusion Refinements to an online study recruitment registry aimed at improving participation among traditionally underrepresented populations were successful at increasing acceptability and sign‐up intentions. These findings have important implications regarding reaching underrepresented populations for participation in AD studies.