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

IF 2.6 4区医学 Q2 CLINICAL NEUROLOGY Movement Disorders Clinical Practice Pub Date : 2024-11-18 DOI:10.1002/mdc3.14264

Philipp Mahlknecht, Simon Leiter, Corinne Horlings, Katarína Schwarzová, Iris Egner, Heike Stockner, Kathrin Marini, Christoph Theyer, Laura Zamarian, Atbin Djamshidian, Klaus Seppi, Fernanda Farfan, Alicia Garrido, Soumyabrata Ghosh, Rejko Krüger, Deborah McIntyre, Brit Mollenhauer, Alastair Noyce, Claire Pauly, Daniel F Pilco-Janeta, Kavita Rege, Venkata P Satagopam, Sebastian Schade, Cristina Simonet, Claudia Trenkwalder, Werner Poewe

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Abstract

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.

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一项基于人口的研究中有关帕金森病风险披露的偏好。

背景：在以人群为基础的帕金森病（PD）风险评估研究中，迄今为止尚未对风险披露的偏好进行评估：在欧洲健康脑老龄化（HeBA）多中心研究的一个子集中考察风险披露的偏好：方法：在对脑退化症风险进行远程评估后，首先在因斯布鲁克研究基地对参与者（年龄≥50岁，无神经退行性疾病）进行面对面访问，向他们发放结构化的风险披露试点问卷：在81名参与者（63%为女性，中位年龄为65岁）中，79%的人表示无条件希望了解自己的帕金森病风险。面对假想的阳性、特定的帕金森病检测结果，大多数人都会尝试过更健康的生活方式。关于未来的安慰剂对照疾病调整试验，66%的人表示他们可能会或一定会参加：这项试点研究表明，参与者对披露未来帕金森病风险持开放态度，并对应对自身风险持积极态度。

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来源期刊

Movement Disorders Clinical Practice CLINICAL NEUROLOGY-

CiteScore

4.00

自引率

7.50%

发文量

218

期刊介绍： Movement Disorders Clinical Practice- is an online-only journal committed to publishing high quality peer reviewed articles related to clinical aspects of movement disorders which broadly include phenomenology (interesting case/case series/rarities), investigative (for e.g- genetics, imaging), translational (phenotype-genotype or other) and treatment aspects (clinical guidelines, diagnostic and treatment algorithms)