Impact of sharing Alzheimer’s disease biomarkers with individuals without dementia: A systematic review and meta-analysis of empirical data

Jetske van der Schaar, Leonie N. C. Visser, Johannes C. F. Ket, Colin Groot, Yolande A. L. Pijnenburg, Philip Scheltens, Annelien L. Bredenoord, Mariëtte A. van den Hoven, Wiesje M. van der Flier

 

Abstract

Introduction

We conducted a systematic literature review and meta-analysis of empirical evidence on expected and experienced implications of sharing Alzheimer’s disease (AD) biomarker results with individuals without dementia.

Methods

PubMed, Embase, APA PsycInfo, and Web of Science Core Collection were searched according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Results from included studies were synthesized, and quantitative data on psychosocial impact were meta-analyzed using a random-effects model.

Results

We included 35 publications. Most personal stakeholders expressed interest in biomarker assessment. Learning negative biomarker results led to relief and sometimes frustration, while positive biomarkers induced anxiety but also clarity. Meta-analysis of five studies including 2012 participants (elevated amyloid = 1324 [66%], asymptomatic = 1855 [92%]) showed short-term psychological impact was not significant (random-effect estimate = 0.10, standard error = 0.23, P = 0.65). Most professional stakeholders valued biomarker testing, although attitudes and practices varied considerably.

Conclusions

Interest in AD biomarker testing was high and sharing their results did not cause psychological harm.