Dementia Care Research and Psychosocial Factors

Diverse communities remain underrepresented in Alzheimer's disease (AD) research, particularly clinical trials. Preclinical AD trials uniquely require cognitively unimpaired individuals to undergo and learn results of biomarker testing.

We studied racial and ethnic differences in willingness to undergo amyloid PET scans and learn results, both generally and for preclinical Alzheimer's disease trials. Participants (n = 257) were grouped as Hispanic/Latino (n = 66), Non-Hispanic (NH) Asian (n = 74), NH Black (n = 46), and NH White (n = 71). Using logistic regression, we assessed willingness across contexts and examined discordant responses, controlling for confounding factors.

As seen in Table 1, the proportions of participants willing to undergo an amyloid PET and learn the results overall differed by group (Hispanic/Latino: 0.67, NH Asian: 0.86, NH Black: 0.70, NH White: 0.72; p = 0.034). Similarly, the proportions willing to undergo biomarker testing in the context of a preclinical AD trial differed by group (Hispanic/Latino: 0.68, NH Asian: 0.81, NH Black: 0.61, NH White: 0.79; p = 0.005). When conditioning upon participants that indicated willingness to undergo biomarker testing outside of a clinical trial, we estimated that the odds of not being willing to undergo testing in the context of a trial was higher among the underrepresented groups as compared to the NH White group (Hispanic/Latino EST: 30.3863, 95 CI: [2.7909, 330.8355]; NH Asian EST: 2.9922, 95 CI: [0.2916, 30.7086]; NH Black EST: 28.4249, 95 CI: [3.0136, 268.1096]; p < 0.001 for a test of difference across all groups). Alternatively, conditional on being unwilling to undergo biomarker testing outside of a trial setting, we estimated that the odds of being willing to undergo testing in the context of a preclinical AD trial were observed to be lower among Hispanic/Latino and NH Black subpopulations when compared to the NH White subpopulation, though these difference were not statistically significant (Hispanic/Latino EST: 0.2276, 95 CI: [0.0159, 3.2580]; NH Black EST: 0.3446, 95 CI: [0.0431, 2.7535]; p = 0.495 for a test of differences across all groups).

Our findings suggest race and ethnicity are associated with willingness to undergo biomarker testing and learn results, both generally and in preclinical Alzheimer's disease trials.