How the implementation of a school for people with Parkinson's disease can succeed-Results of aconsensus study and aformative evaluation

Abstract

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 aconcept for patient education for people with Parkinson's disease, astructured consensus study was conducted and apilot 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 59consented statements emerged, mainly regarding the contents of apatient school and agroup size of 6-8persons. Only two statements could not be consented. The formative evaluation detected atendency towards a positive attitude for adigital training format and avery positive evaluation of the contents. Overall, important recommendations for apatient school can be drawn from this study. The following subjects require further investigation: format, inclusion criteria, group composition and inclusion of caregivers.