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

被引:17
作者
van der Schaar, Jetske [1 ,2 ,11 ]
Visser, Leonie N. C. [1 ,2 ,3 ,4 ,5 ]
Ket, Johannes C. F. [6 ]
Groot, Colin [1 ,2 ]
Pijnenburg, Yolande A. L. [1 ,2 ]
Scheltens, Philip [1 ,2 ,7 ]
Bredenoord, Annelien L. [8 ]
van den Hoven, Mariette A. [9 ]
van der Flier, Wiesje M. [1 ,2 ,10 ]
机构
[1] Vrije Univ Amsterdam, Alzheimer Ctr Amsterdam, Dept Neurol, Amsterdam UMC Locat VUmc, Amsterdam, Netherlands
[2] Amsterdam Neurosci, Neurodegenerat, Amsterdam, Netherlands
[3] Univ Amsterdam, Dept Med Psychol, AMC, Amsterdam UMC Locat, Amsterdam, Netherlands
[4] Amsterdam Publ Hlth, Qual Care, Amsterdam, Netherlands
[5] Karolinska Inst, Ctr Alzheimer Res, Dept Neurobiol Care Sci & Soc, Div Clin Geriatr, Stockholm, Sweden
[6] Vrije Univ Amsterdam, Med Lib, Amsterdam, Netherlands
[7] EQT Life Sci, Amsterdam, Netherlands
[8] Erasmus Univ, Erasmus Sch Philosophy, Rotterdam, Netherlands
[9] Amsterdam UMC, Dept Eth Law & Humanities, Amsterdam, Netherlands
[10] Vrije Univ Amsterdam, Dept Epidemiol & Data Sci, Amsterdam UMC, Amsterdam, Netherlands
[11] Amsterdam UMC Locat VUmc, Alzheimer Ctr Amsterdam, Dept Neurol, Boelelaa 1118, NL-1081 HZ Amsterdam, Netherlands
关键词
Alzheimer's disease; amyloid; biomarkers; diagnosis; disclosure; ethics; preclinical; prodromal; risk; tau; DISCLOSURE; SAFETY; CARE; NEURODEGENERATION; PERSPECTIVES; DEFINITION; BEHAVIOR; HISTORY; MCI;
D O I
10.1002/alz.13410
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
IntroductionWe 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. MethodsPubMed, 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. ResultsWe 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. DiscussionInterest in AD biomarker testing was high and sharing their results did not cause psychological harm. HighlightsMost 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.
引用
收藏
页码:5773 / 5794
页数:22
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