Gerschel Tanita, Prokop Scally, Schulze Lara, Feige Tim, Zschieschang Anja, Barbe Michael Thomas, Bitterlich Robert, Caffier Julian, Csoti Ilona, Eggers Carsten, Gaßner Heiko, Gülke Eileen, Hähnel Tom, Herbst Heinz, Jochim Angela, Kiparski Anni, Klietz Martin, von Liel Alexa, Lingor Paul, Loewenbrück Kai, Maetzler Walter, Pürner Dominik, van Riesen Christoph, Schmitz-Pfeiffer Henning, Süß Thorsten, Tönges Lars, Weiß Daniel, Wolz Martin, Falkenburger Björn
Klinik und Poliklinik für Neurologie, Universitätsklinikum Carl Gustav Carus an der Technischen Universität Dresden, Dresden, Deutschland.
Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE), Standort Dresden, Dresden, Deutschland.
Nervenarzt. 2024 Jun;95(6):539-543. doi: 10.1007/s00115-024-01639-z. Epub 2024 Mar 14.
As the most rapidly increasing neurodegenerative disease worldwide, Parkinson's disease is highly relevant to society. Successful treatment requires active patient participation. Patient education has been successfully implemented for many chronic diseases, such as diabetes and could also provide people with Parkinson's disease with skills to manage the disease better and to participate in shared decision making.
To prepare the implementation of a concept for patient education for people with Parkinson's disease, a structured consensus study was conducted and a pilot project formatively evaluated. The structured consensus study included experts from all over Germany. It consisted of two online surveys and an online consensus conference. The formative evaluation was conducted as three focus groups. Transcripts were evaluated using content-structuring qualitative content analysis.
From the consensus procedure 59 consented statements emerged, mainly regarding the contents of a patient school and a group size of 6-8 persons. Only two statements could not be consented. The formative evaluation detected a tendency towards a positive attitude for a digital training format and a very positive evaluation of the contents.
Overall, important recommendations for a patient school can be drawn from this study. The following subjects require further investigation: format, inclusion criteria, group composition and inclusion of caregivers.
作为全球增长最为迅速的神经退行性疾病，帕金森病与社会高度相关。成功的治疗需要患者积极参与。患者教育已在许多慢性病（如糖尿病）中成功实施，也可为帕金森病患者提供更好管理疾病及参与共同决策的技能。
为准备实施针对帕金森病患者的患者教育概念，开展了一项结构化共识研究并对一个试点项目进行了形成性评估。结构化共识研究纳入了来自德国各地的专家。它包括两次在线调查和一次在线共识会议。形成性评估以三个焦点小组的形式进行。使用内容结构化定性内容分析法对文字记录进行评估。
通过共识程序得出了59条同意的陈述，主要涉及患者学校的内容以及6至8人的小组规模。只有两条陈述未获同意。形成性评估发现对数字培训形式有积极态度的趋势，且对内容评价非常积极。
总体而言，本研究可为患者学校提出重要建议。以下主题需要进一步研究：形式、纳入标准、小组构成以及照顾者的纳入。
