Universität zu Köln

Rostamzadeh, Ayda, Schwegler, Carolin ORCID: 0000-0002-5187-7625, Gil-Navarro, Silvia, Rosende-Roca, Maitee, Romotzky, Vanessa, Ortega, Gemma, Canabate, Pilar, Moreno, Mariola, Schmitz-Luhn, Bjoern, Boada, Merce, Jessen, Frank and Woopen, Christiane (2021). Biomarker-Based Risk Prediction of Alzheimer's Disease Dementia in Mild Cognitive Impairment: Psychosocial, Ethical, and Legal Aspects Study Protocol of the PreDADQoL Project. J. Alzheimers Dis., 80 (2). S. 601 - 618. AMSTERDAM: IOS PRESS. ISSN 1875-8908

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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.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Rostamzadeh, Ayda UNSPECIFIED UNSPECIFIED UNSPECIFIED Schwegler, Carolin UNSPECIFIED orcid.org/0000-0002-5187-7625 UNSPECIFIED Gil-Navarro, Silvia UNSPECIFIED UNSPECIFIED UNSPECIFIED Rosende-Roca, Maitee UNSPECIFIED UNSPECIFIED UNSPECIFIED Romotzky, Vanessa UNSPECIFIED UNSPECIFIED UNSPECIFIED Ortega, Gemma UNSPECIFIED UNSPECIFIED UNSPECIFIED Canabate, Pilar UNSPECIFIED UNSPECIFIED UNSPECIFIED Moreno, Mariola UNSPECIFIED UNSPECIFIED UNSPECIFIED Schmitz-Luhn, Bjoern UNSPECIFIED UNSPECIFIED UNSPECIFIED Boada, Merce UNSPECIFIED UNSPECIFIED UNSPECIFIED Jessen, Frank UNSPECIFIED UNSPECIFIED UNSPECIFIED Woopen, Christiane UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-591415
DOI:	10.3233/JAD-200484
Journal or Publication Title:	J. Alzheimers Dis.
Volume:	80
Number:	2
Page Range:	S. 601 - 618
Date:	2021
Publisher:	IOS PRESS
Place of Publication:	AMSTERDAM
ISSN:	1875-8908
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language QUALITY-OF-LIFE; POSITRON-EMISSION-TOMOGRAPHY; GENETIC RISK; DISCLOSURE; HEALTH; DIAGNOSIS; COMPREHENSION; SATISFACTION; PROGRESSION; LEGISLATION Multiple languages Neurosciences Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/59141