Wie die Umsetzung einer Schule für Menschen mit Parkinson-Krankheit gelingen kann – Ergebnisse eines Konsensusverfahrens und einer formativen Evaluation

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2024年3月14日

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Tanita Gerschel,
Scally Prokop,
Lara Schulze,
Tim Feige,
Anja Zschieschang,
Michael Thomas Barbe,
Robert Bitterlich,
Julian Caffier,
Ilona Csoti,
Carsten Eggers,
Heiko Gaßner,
Eileen Gülke,
Tom Hähnel,
Heinz Herbst,
Angela Jochim,
Anni Kiparski,
Martin Klietz,
Alexa von Liel,
Paul Lingor,
Kai Loewenbrück,
Walter Maetzler,
Dominik Pürner,
Christoph van Riesen,
Henning Schmitz-Pfeiffer,
Thorsten Süß,
Lars Tönges,
Daniel Weiß,
Martin Wolz,
Björn Falkenburger

摘要

Background

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.

Material and methods

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.

Results

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.

Discussion

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.