Telephone survey to identify factors predicting willingness to enroll in biomarker studies and disclosure‐related outcomes

Abstract

AbstractBackgroundAlzheimer’s disease (AD) diagnostics is evolving rapidly, moving toward biomarker‐based diagnoses characterized by amyloid, tau, and neurodegeneration. To clarify benefits and risks of using this framework with cognitively unimpaired adults, particularly those from groups under‐represented in AD biomarker research, we developed a 30‐minute telephone survey to identify factors predicting willingness to enroll in biomarker studies and hypothetical disclosure‐related outcomes.MethodExisting scales were modified for telephone administration to assess experience/concern about AD, perceived health, health locus of control, brain health social norms, trust in medical research, and experiences of discrimination. Five hypothetical scenarios assessed willingness to participate in biomarker studies with or without results disclosure. Three open‐ended items provided qualitative data on willingness to participate and share results with others. Forty‐one items assessed reasons for learning results and potential reactions following a hypothetical elevated result. Descriptive statistics were used to evaluate response patterns. Thematic analysis of open‐ended items was conducted using an inductive coding method.ResultCognitively unimpaired participants (N=334) included 148 Black/African Americans and 186 non‐Hispanic Whites; aged 45‐89; Table 1). Most participants had cared for someone with dementia (73%), desired to know if they will develop AD (82%) and trust medical research (mean RAQ‐7 = 30/35) (Table 2). Approximately 50% were very or extremely willing to participate in biomarker studies regardless of results disclosure; however, African Americans were less willing to participate if results were not disclosed. Common themes related to willingness to participate and learn results included wanting to know if at personal risk or to prevent/plan for AD and wanting to support science or help others. Misgivings/anxiety about knowing biomarker and concerns about invasiveness or lack of a cure for AD were common themes for those less willing (Table 3).ConclusionThis survey assesses AD‐relevant, health, and experiential factors, willingness to participate in biomarker research, and disclosure‐related outcomes. Initial results suggest understanding risk, prevention/planning behaviors, and helping others are reasons for participating and learning biomarker results. Results may also inform recruitment of African Americans into biomarker studies. Future analyses will investigate factors predicting potential positive (e.g., planning, risk‐reducing behavior) and negative (psychological distress/stigma) disclosure outcomes.