Movement disorders clinical practice · 2024
Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study.
СтатьяМногоцентровое исследованиеНазвание и аннотация: Перевод пока не подготовлен
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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, HeBA Consortium
Аннотация
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.
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.