Supporting informed decision‐Making about Alzheimer’s biomarker disclosure: identifying areas of knowledge and information needs in a research cohort

Abstract

AbstractBackgroundEducation and counseling are recommended prior to Alzheimer’s disease (AD) biomarker disclosure to allow individuals to make an informed decision about whether they want to learn their results. Disclosure is occurring more frequently in research settings, and will likely be implemented in clinical populations in the future. Effective and feasible approaches to education and counseling are needed to ensure individuals are appropriately informed and supported prior to biomarker testing and disclosure.MethodsEligible participants from the Wisconsin Registry for Alzheimer’s Prevention (WRAP) elected to learn their amyloid PET results (n = 97). The disclosure process included an education session, disclosure visit, and lifestyle counseling visit. At the education session, baseline knowledge was assessed using a 15‐item quiz. Next, participants were guided through a 15‐minute interactive presentation on dementia, lifestyle and genetic risk factors for AD, significance of PET results, and potential psychosocial outcomes post‐disclosure. The quiz was then administered again.ResultsParticipants (age = 71.9±4.8, 94.8% non‐Hispanic White) with elevated (n = 28) and not‐elevated (n = 69) biomarker results were enrolled. Mean quiz scores were 12.1 before the educational session and 14.3 after the session, and did not differ based on amyloid positivity. Most participants correctly answered pre‐test questions about the progression of AD and risk factors, the significance of amyloid, and that biomarker results were part of research. The main areas of knowledge gained were about the causes of dementia (22.7% pre‐test vs 69.1% post‐test), significance of APOE genes (57.8% vs 90.7%), and extent of existing protections against discrimination on the basis of genetic tests (48.5% vs 93.8%). For one question about early symptoms of AD, knowledge decreased (70.1% vs 58.8%).ConclusionIn a cohort of currently enrolled AD research participants, baseline knowledge about amyloid and research was high, but information needs existed around causes of dementia, early AD symptoms, genetic information, and protections against psychosocial consequences such as discrimination. To support informed decision‐making about disclosure, future research should determine educational needs among clinical populations and adapt materials to effectively and feasibly communicate this information.