Development and implementation of online patient education programme for children and adolescents with ME/CFS and their parents, siblings, and school personnel: study protocol of the prospective BayNet study (Preprint)

Abstract

The condition of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) poses significant challenges to affected children and adolescents, their social environment, as well as treating physicians, due to the marked impact on quality of life and the absence of causal therapeutic approaches. An aspect of care that has been lacking for these patients involves comprehensive education for them and their social circles.

This study protocol aims to introduce the goals, study design, and execution of the subproject within the BAYNET FOR MECFS project, where online patient education programmes were developed for children and adolescents with ME/CFS, their parents, siblings, and school staff. The objective of the programme was to enhance independent disease management and knowledge as well as promoting the exchange with other affected individuals, thus contributing to an improvement in the health and support from the social environment.

The group-based online education programmes were developed by a multidisciplinary team based on the ModuS concept created by the Competence Network for Patient Education (KomPaS). Due to the restricted physical and cognitive capacity of the affected individuals, the patient education programmes were exclusively designed in a digital format to enable participation. The primary study objective is to assess the acceptance of the patient education programmes. Additional goals include evaluating the programmes in terms of completeness, satisfaction, and usefulness, as well as enhancing disease knowledge related to ME/CFS. The qualitative assessment covers topics such as individual expectations and individual benefits from the training.

The recruitment of participants for the patient education programme occurred from January to July 2023. The first pilot programme block was completed in May 2023, leading to an adaptation of the concept. The programmes were adjusted in terms of format, content, duration, and schedule to suit the needs of the affected individuals and their social circles. A total of two programme blocks were conducted for patients and parents, while two to three blocks were planned for siblings and school staff. The patient education programmes are expected to be completed by the end of October 2023, with the evaluation concluding by the end of 2024.

The data is intended to contribute to the development of a comprehensive, interprofessional care model for children and adolescents with ME/CFS.