Intrusive thoughts and distress following amyloid status disclosure in a preclinical Alzheimer’s disease trial: Comparisons across racial and ethnic groups

Abstract

AbstractBackgroundPreclinical Alzheimer’s disease (AD) trials require biomarker testing and disclosure. Efforts are underway to improve the diversity and inclusivity of enrollment in these trials. While previous studies have shown that disclosure can be performed safely, trialists need a more thorough understanding of whether reactions to AD biomarker disclosure differ among racial and ethnic groups.MethodsUsing data from the Anti‐Amyloid treatment in Asymptomatic AD (A4) study, we analyzed participant responses on the Impact of Events Scale (IES), a 15‐item questionnaire that assesses avoidance and intrusive thoughts after disclosure of amyloid imaging results. We fit a linear regression model to test the hypothesis that mean IES scores differed by racial and ethnic group. Confounding factors included age, sex, years of education, study partner type, family history of AD, and amyloid status. We considered potential effect modification by amyloid status by including an interaction term between race and amyloid group.ResultsIES data were available for 4311 participants (3795 = non‐Hispanic [NH] White; 147 = NH Black; 165 = NH Asian; 135 = Hispanic; 69 = Other). Figure 1 illustrates total IES scores for the groups, stratified by amyloid status. NH Asians demonstrated the highest mean IES among those with elevated amyloid. Hispanics demonstrated the lowest mean IES among those with elevated amyloid, but the highest among those with not elevated amyloid. In a regression model, younger age, female sex, and family history of AD were associated with higher IES. Overall, the association between race and ethnicity groups and IES did not significantly differ by amyloid status (p = 0.200). Among not elevated amyloid individuals, Hispanics had a significantly higher mean IES when compared to NH Whites (est: 2.38; 95% CI: 0.57, 4.19; p = 0.10). Among elevated amyloid individuals, this estimate decreased to ‐1.47 (95% CI: ‐4.36, 1.42; p = 0.319).ConclusionsWhen stratified by amyloid status, all racial and ethnic groups showed higher mean IES in the elevated compared to the not elevated amyloid group, except for Hispanics. This may suggest that, for Hispanics, having an AD biomarker test at all may lead to avoidance and intrusive thoughts, regardless of the specific test result.