JMIR Publications

ABSTRACT

Background:

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.

Objective:

This study protocol aims to introduce the goals, study design, and execution and evaluation of the subproject within the BAYNET FOR MECFS project. In it, online patient education programmes are developed for children and adolescents with ME/CFS, their parents, siblings, and school staff in order to enhance independent disease management and knowledge as well as promoting the exchange with other affected individuals.

Methods:

In phase I 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), piloted and finalized. Phase II included the recruiting of participants and implementation of the finalized programs. 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. In Phase III the programmes will be evaluated regarding the acceptance, completeness, and satisfaction of the participants. The qualitative assessment covers topics such as individual expectations and individual benefits from the training.In Phase IV the evaluation will investigate the programmes in terms of gain of disease knowledge, improvement in health related quality of live, life satisfaction and family burden.

Results:

The programmes were developed, piloted and finalized in phase I lasting from December 2022 to May 2023 with the pilot programmes block lasting from March to 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. In Phase II, the recruitment of participants for the patient education programme occurred from January to July 2023. A total of two programme blocks for patients and parents and two to three blocks for siblings and school staff were started in May 2023 and were completed in 2023. In Phase III the evaluation started after Phase II and will be concluded by the end of 2024. Phase IV roll out of the program is planned in 2025-2026 (N=150 children and their caretakers) for evaluation of disease knowledge, hrQoL, life satisfaction, family burden including longitudinal evaluation.

Conclusions:

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