一项基于人群的研究中关于帕金森病风险披露的偏好。
Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study.
作者信息
Mahlknecht Philipp, Leiter Simon, Horlings Corinne, Schwarzová Katarína, Egner Iris, Stockner Heike, Marini Kathrin, Theyer Christoph, Zamarian Laura, Djamshidian Atbin, Seppi Klaus, Farfan Fernanda, Garrido Alicia, Ghosh Soumyabrata, Krüger Rejko, McIntyre Deborah, Mollenhauer Brit, Noyce Alastair, Pauly Claire, Pilco-Janeta Daniel F, Rege Kavita, Satagopam Venkata P, Schade Sebastian, Simonet Cristina, Trenkwalder Claudia, Poewe Werner
机构信息
Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria.
Neurology Service, Hospital Clínic de Barcelona/IDIBAPS, Barcelona, Spain.
出版信息
Mov Disord Clin Pract. 2025 Feb;12(2):203-209. doi: 10.1002/mdc3.14264. Epub 2024 Nov 18.
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.
背景
到目前为止，尚未评估在基于人群的帕金森病（PD）风险评估研究中对风险披露的偏好。
目的
在欧洲健康大脑衰老（HeBA）多中心研究的一个子集中，研究对风险披露的偏好。
方法
在进行远程PD风险评估后，首先在因斯布鲁克研究地点的面对面访问中，向参与者（≥50岁，无神经退行性疾病）展示一份关于风险披露的结构化试点问卷。
结果
在纳入的81名参与者（63%为女性，中位年龄65岁）中，79%表示无条件希望了解自己的PD风险。面对阳性、特定的PD检测这一假设情景，大多数人会尝试过上更健康的生活方式。关于未来的安慰剂对照疾病修饰试验，66%表示他们可能或肯定会参与。
结论
这项试点研究表明，参与者对披露未来患PD的风险持开放态度，并且在应对自身风险方面态度积极。
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