The words community dwelling, Spanish preferring Hispanic/Latino adults use to talk about Alzheimer's disease and genetic testing: Implications for education and outreach

Abstract

INTRODUCTION Hispanic/Latino (H/L) adults are more likely than non-Hispanic white adults to have Alzheimer’s disease (AD), but fewer than 1 in 5 H/L adults has APOE ε4. H/L adults are underrepresented in AD research studies and trials, which use genetic data to stratify participants. Successful research programs representative of the entire U.S. population, including over 16 million Spanish speakers, require culturally appropriate educational materials about AD and genetic testing. We sought to learn the culturally salient words Spanish-preferring H/L adults use to talk about AD and genetic testing.

METHODS Participants were community-residing and self-identified as Spanish preferring H/L adults. Fourteen individuals completed freelisting interviews, which yielded lists featuring all the words that came to participants’ minds about AD-related domains. We performed inductive thematic analysis and calculated theme frequency.

RESULTS Participants were aware of AD as a memory disorder due to advancing age and genes, but were unfamiliar with AD genetic testing. Participants suggested genetic testing was more useful for diagnosis than future risk prediction. They also suggested genetic testing of individuals with intact cognition and no AD family history had limited value.

DISCUSSION Findings suggested individuals are motivated by a technological imperative to participate in AD research, reflecting a responsibility to use genetic testing despite having limited knowledge about it. Interest among H/L adults in AD research could be leveraged to develop educational materials co-created by community members and researchers. Content about primary and secondary findings and the use of AD genetic results to inform a future-oriented disposition to health comprises a useful framework for AD outreach serving diverse populations.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

This study was funded by a Health Disparities Grant from the Office of the President at Baylor College of Medicine.

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

The Institutional Review Board of Baylor College of Medicine gave ethical approval for this work.

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

Data Availability

All data produced in the present study are available upon reasonable request to the authors.

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