Impact of sharing Alzheimer’s disease biomarker results with individuals without dementia: a systematic review and meta‐analysis of empirical data

Abstract

AbstractBackgroundA biological definition of Alzheimer’s disease (AD) is increasingly used in research, but little is known about the consequences of early biomarker testing from the perspective of professional (healthcare professionals) and personal (citizens, patients, and their families) stakeholders. We aim to provide a systematic literature review and meta‐analysis of empirical evidence on expected and experienced implications of sharing AD biomarker results with individuals without dementia.MethodWe searched PubMed, Embase, APA PsycINFO, and Web of Science Core Collection on 10 November 2021 for literature on sharing AD biomarker results with individuals without dementia. Two reviewers independently screened 8034 titles and abstracts, and 192 full‐text records, for eligibility. Results from included studies were synthesized and quantitative data on psychosocial impact (anxiety, depression, stress, and suicidal ideation) were meta‐analyzed using a random‐effects model.ResultWe included 33 publications (20 quantitative and 13 qualitative data). Of these, eight reported on professional stakeholders’ attitudes and practices, 13 on personal stakeholders’ expectations, and 12 on their actual experiences. Most professional stakeholders valued biomarker testing, believing the benefits outweigh the risks, although attitudes and practices varied considerably. Most personal stakeholders expressed interest in (hypothetical) biomarker assessment, expecting to gain insight, reduce dementia risk and prepare for the future. Studies evaluating actual experiences found that sharing negative biomarker results led to relief and sometimes frustration for not having an explanation for concerns, while positive biomarkers prompted anxiety but also clarity. Those tested positive intended to adapt their lifestyle and plans, yet some worried about stigmatization. The majority did not regret being informed. Meta‐analysis of 5 studies including 2012 participants (elevated amyloid = 1324, asymptomatic = 1855) showed that short‐term psychological impact was not significant when considering all participants (random‐effect estimate = 0.026, SE = 0.018, p = 0.153), nor biomarker‐positive (estimate = 0.012, SE = 0.019, p = 0.538), or biomarker‐negative individuals (estimate = 0.061, SE = 0.043, p = 0.154) separately.ConclusionMost personal stakeholders indicate they wish to know their AD biomarker status. While sharing results could induce mixed emotions, it does not cause short‐term psychological harm and may offer actionability. There is a need for developing and harmonizing guidelines for biomarker testing and sharing results, particularly in view of the imminent advancements in disease‐modifying treatment.