Experienced based co-design to improve transition care for young people with epilepsy

Epilepsy care is particularly important during adolescence because of the possibility to strengthen healthcare participation and health behaviours which improve future well-being. However, transition programs are notably difficult to implement and often not available for all young people with epilepsy. The aim of this project was to improve the transition process for young people with epilepsy with feasible and relevant intervention strategies tailored to local circumstances.

A healthcare quality improvement study was performed using experience-based co-design. The co-designers (young people with epilepsy, their caregivers and healthcare staff) brainstormed on possible intervention strategies, which were analysed with qualitative analysis and thereafter prioritized with an importance vs. feasibility matrix.

The experience-based co-design resulted in a deeper understanding of the process and the prioritized intervention strategies included: starting early with transition preparation, time alone with the treating physician, general and personalised epilepsy information online, transition process guide for caregivers and ways to contact healthcare staff.

The proposed intervention strategies are in line with other transition research in epilepsy and other chronic diseases, but via this experience-based co-design method the intervention strategies were specifically tailored to our local conditions leading to an increased feasibility and fidelity. While many clinics lack the resources to establish complete transition programs, identifying and implementing important and feasible strategies can drive meaningful improvement for young people with epilepsy transferring to adult life and care.