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Biomarker-Based Risk Prediction of Alzheimer's Disease Dementia in Mild Cognitive Impairment: Psychosocial, Ethical, and Legal Aspects Study Protocol of the PreDADQoL Project

Authors :
Rostamzadeh, Ayda
Schwegler, Carolin
Gil-Navarro, Silvia
Rosende-Roca, Maitee
Romotzky, Vanessa
Ortega, Gemma
Canabate, Pilar
Moreno, Mariola
Schmitz-Luhn, Bjoern
Boada, Merce
Jessen, Frank
Woopen, Christiane
Rostamzadeh, Ayda
Schwegler, Carolin
Gil-Navarro, Silvia
Rosende-Roca, Maitee
Romotzky, Vanessa
Ortega, Gemma
Canabate, Pilar
Moreno, Mariola
Schmitz-Luhn, Bjoern
Boada, Merce
Jessen, Frank
Woopen, Christiane
Publication Year :
2021

Abstract

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. Conclusion: The empirical research of the PreDADQoL study together with the ethical and legal considerations and implications will help to improve the process of counselling and risk disclosure and thereby positively affect QoL and health of MCI-patients and their close others in the context of biomarker-based dementia risk estimation.

Details

Database :
OAIster
Notes :
English
Publication Type :
Electronic Resource
Accession number :
edsoai.on1312206463
Document Type :
Electronic Resource