Biomarker-based risk prediction of Alzheimer's disease dementia in mild cognitive impairment: Psychosocial, ethical, and legal aspects

A Rostamzadeh, C Schwegler… - Journal of …, 2021 - content.iospress.com
A Rostamzadeh, C Schwegler, S Gil-Navarro, M Rosende-Roca, V Romotzky, G Ortega…
Journal of Alzheimer's Disease, 2021content.iospress.com
Background: Today, a growing number of individuals with mild cognitive impairment (MCI)
wish to assess their risk of developing Alzheimer's disease (AD) dementia. The expectations
as well as the effects on quality of life (QoL) in MCI patients and their close others through
biomarker-based dementia risk estimation are not well studied. Objective: The PreDADQoL
project aims at providing empirical data on effects of such prediction on QoL and at
developing an ethical and legal framework of biomarker-based dementia risk estimation in …
Background
Today, a growing number of individuals with mild cognitive impairment (MCI) wish to assess their risk of developing Alzheimer’s disease (AD) dementia. The expectations as well as the effects on quality of life (QoL) in MCI patients and their close others through biomarker-based dementia risk estimation are not well studied.
Objective
The PreDADQoL project aims at providing empirical data on effects of such prediction on QoL and at developing an ethical and legal framework of biomarker-based dementia risk estimation in MCI.
Methods
In the empirical study, 100 MCI-patients and their close others will be recruited from two sites (Germany and Spain). They receive standardized counselling on cerebrospinal fluid (CSF) biomarker-based prediction of AD dementia and a risk disclosure based on their AD biomarker status. A mixed methods approach will be applied to assess outcomes.
Results
The pilot-study yielded a specification of the research topics and newly developed questionnaires for the main assessment. Within this binational quantitative and qualitative study, data on attitudes and expectations toward AD risk prediction, QoL, risk communication, coping strategies, mental health, lifestyle changes, and healthcare resource utilization will be obtained. Together with the normative part of the project, an empirically informed ethical and legal framework for biomarker-based dementia risk estimation will be developed.
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