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

*Corresponding author for this work

Research output: Contribution to journalReview articleAcademicpeer-review

4 Citations (Scopus)
39 Downloads (Pure)

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. Discussion: Interest in AD biomarker testing was high and sharing their results did not cause psychological harm. Highlights: Most personal stakeholders expressed interest in Alzheimer's disease biomarker assessment. Personal motivations included gaining insight, improving lifestyle, or preparing for the future. There was no short-term psychological impact of sharing biomarker status, implying it can be safe. Most professional stakeholders valued biomarker testing, believing the benefits outweigh the risk. Harmonized guidelines on biomarker testing and sharing results are required.

Original languageEnglish
Pages (from-to)5773-5794
Number of pages22
JournalAlzheimer's and Dementia
Volume19
Issue number12
Early online date26 Jul 2023
DOIs
Publication statusPublished - Dec 2023

Bibliographical note

Funding Information: ZonMW, Grant/Award
Number:#73305095007;Health∼Holland,TopsectorLifeSciences&Health,Grant/Award Number:#LSHM20106;YOD-MOLECULAR,Grant/Award Number:#KICH1.GZ02.20.004

Publisher Copyright:
© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.

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