Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study.

Autor: Mahlknecht P; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria., Leiter S; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria., Horlings C; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria., Schwarzová K; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria., Egner I; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria., Stockner H; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria., Marini K; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria., Theyer C; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria., Zamarian L; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria., Djamshidian A; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria., Seppi K; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria., Farfan F; Neurology Service, Hospital Clínic de Barcelona/IDIBAPS, Barcelona, Spain., Garrido A; Neurology Service, Hospital Clínic de Barcelona/IDIBAPS, Barcelona, Spain., Ghosh S; Luxembourg Centre for Systems Biomedicine, University of Luxembourg, Esch-sur-Alzette, Luxembourg., Krüger R; Luxembourg Centre for Systems Biomedicine, University of Luxembourg, Esch-sur-Alzette, Luxembourg.; Transversal Translational Medicine, Luxembourg Institute of Health, Strassen, Luxembourg., McIntyre D; Transversal Translational Medicine, Luxembourg Institute of Health, Strassen, Luxembourg., Mollenhauer B; Paracelsus-Elena-Klinik Kassel, Kassel, Germany.; Department of Neurology, University Medical Center Göttingen, Gottingen, Germany., Noyce A; Preventive Neurology Unit, Wolfson Institute of Preventive Medicine, Queen Mary University of London, London, United Kingdom., Pauly C; Luxembourg Centre for Systems Biomedicine, University of Luxembourg, Esch-sur-Alzette, Luxembourg.; Transversal Translational Medicine, Luxembourg Institute of Health, Strassen, Luxembourg., Pilco-Janeta DF; Neurology Service, Hospital Clínic de Barcelona/IDIBAPS, Barcelona, Spain., Rege K; Luxembourg Centre for Systems Biomedicine, University of Luxembourg, Esch-sur-Alzette, Luxembourg., Satagopam VP; Luxembourg Centre for Systems Biomedicine, University of Luxembourg, Esch-sur-Alzette, Luxembourg., Schade S; Paracelsus-Elena-Klinik Kassel, Kassel, Germany., Simonet C; Preventive Neurology Unit, Wolfson Institute of Preventive Medicine, Queen Mary University of London, London, United Kingdom., Trenkwalder C; Paracelsus-Elena-Klinik Kassel, Kassel, Germany.; Department of Neurosurgery, University Medical Center Göttingen, Gottingen, Germany., Poewe W; Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria.
Jazyk: angličtina
Zdroj: Movement disorders clinical practice [Mov Disord Clin Pract] 2024 Nov 18. Date of Electronic Publication: 2024 Nov 18.
DOI: 10.1002/mdc3.14264
Abstrakt: Background: Preferences for risk disclosure in population-based studies assessing Parkinson's disease (PD) risk have not been assessed so far.
Objectives: To examine preferences for risk disclosure in a subset of the European Healthy Brain Aging (HeBA) multicenter study.
Methods: After a remote PD risk assessment, a structured pilot-questionnaire on risk disclosure was first presented to participants (≥50 years, without neurodegenerative diseases) during in-person visits at the Innsbruck study site.
Results: From the included 81 participants (63% females, median age 65 years), 79% expressed an unconditional desire to be informed about their PD risk. Confronted with a hypothetical scenario of a positive, specific PD test, most would try to live a healthier lifestyle. Regarding future placebo-controlled disease-modification trials, 66% stated they would probably or definitely participate.
Conclusions: This pilot-study shows an open-minded view of participants towards disclosure of risk for future PD and a proactive attitude regarding dealing with one's risk.
(© 2024 The Author(s). Movement Disorders Clinical Practice published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.)
Databáze: MEDLINE
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