African Americans' intentions to share their Alzheimer’s preclinical biomarker results with loved ones in a hypothetical vignette: the importance of support persons

Abstract

AbstractBackgroundLiterature on factors influencing the decision to enroll in Alzheimer’s biomarker research increasingly indicates that study partners are important to this decision. Limited research suggests participants are comfortable sharing their biomarker results within close relationships in the context of clinical trials. It is unknown how participants feel about sharing results in non‐clinical trial studies, which may be similar to future clinical settings in which risk information may be shared without an available clinical trial. Our objective was to understand whether and why prospective participants in preclinical AD biomarker studies intend to share their results. Because most preclinical biomarker research lacks adequate representation of African American and other racially and ethnically minoritized individuals, we focus our analysis on African Americans.MethodsWe enrolled African Americans (N = 145) between 46‐85 years of age from the Wisconsin Alzheimer’s Disease Research Center Clinical Core or the Wisconsin Registry for Alzheimer’s Prevention. After hearing a vignette describing a hypothetical biomarker research study, participants indicated how likely they would be to share their biomarker results with loved ones using a 5‐point Likert scale, and then provided open‐ended responses. Using qualitative content analysis, we identified themes that motivated and discouraged sharing results.Results72% of participants were either ‘very’ or ‘extremely’ willing to share their biomarker results with loved ones. The most common reasons motivating sharing results were so that their loved ones could support them and they could prepare together; so that their loved ones could monitor participants and understand cognitive changes they might experience; and to share important information about health. 16% would share the information selectively, and 12% were ‘not at all’ or ‘a little’ willing to share, for reasons including to avoid worrying their loved ones or concern about being treated differently.ConclusionMost participants wanted to share their biomarker results within close relationships. Increased understanding of motivations for sharing results may enable stronger support for both sides of this dyad. This in turn may suggest ways to increase participation in biomarker research and inform future research aimed at preparing to translate testing and disclosure into clinical practice, particularly among African Americans.