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

• DOI: 10.1002/alz.064554
• Publication Date: 2022-12-20T15:16:15Z
• Authors: Fred B Ketchum; Claire M Erickson; Nathaniel A. Chin; Carey E. Gleason; Lindsay R. Clark
• Keywords: Vignette

Abstract Background Literature on factors influencing the decision to enroll in Alzheimer’s biomarker research increasingly indicates that study partners are important this decision. Limited suggests participants comfortable sharing their results within close relationships context of clinical trials. It is unknown how feel about non‐clinical trial studies, which may be similar future settings risk information shared without an available trial. Our objective was understand whether and why prospective preclinical AD studies intend share results. Because most lacks adequate representation African American other racially ethnically minoritized individuals, we focus our analysis Americans. Methods We enrolled Americans (N = 145) between 46‐85 years age from Wisconsin Disease Research Center Clinical Core or Registry for Prevention. After hearing a vignette describing hypothetical study, indicated likely they would with loved ones using 5‐point Likert scale, then provided open‐ended responses. Using qualitative content analysis, identified themes motivated discouraged Results 72% were either ‘very’ ‘extremely’ willing ones. The common reasons motivating so could support them prepare together; monitor cognitive changes might experience; health. 16% selectively, 12% ‘not at all’ ‘a little’ share, including avoid worrying concern being treated differently. Conclusion Most wanted relationships. Increased understanding motivations enable stronger both sides dyad. This turn suggest ways increase participation inform aimed preparing translate testing disclosure into practice, particularly among