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

Area of Science:

• Pediatric Neurology
• Adolescent Healthcare
• Chronic Disease Management

Background:

• Adolescence is a critical period for epilepsy management, focusing on healthcare participation and health behaviors.
• Transition programs from pediatric to adult epilepsy care are often difficult to implement and not universally available.
• Effective transition strategies are crucial for long-term well-being in young people with epilepsy.

Purpose of the Study:

• To enhance the transition process for adolescents with epilepsy.
• To develop feasible and relevant intervention strategies tailored to local circumstances.
• To improve healthcare participation and long-term health outcomes for young people with epilepsy.

Main Methods:

• A healthcare quality improvement study utilized experience-based co-design.
• Co-design involved young people with epilepsy, caregivers, and healthcare staff.
• Intervention strategies were brainstormed, analyzed qualitatively, and prioritized using an importance-feasibility matrix.

Main Results:

• Experience-based co-design provided a deeper understanding of the transition process.
• Prioritized interventions included early transition preparation and dedicated time with physicians.
• Other key strategies were online epilepsy information, caregiver guides, and improved staff contact methods.

Conclusions:

• Intervention strategies align with existing transition research in epilepsy and chronic diseases.
• Experience-based co-design ensured strategies were locally relevant, increasing feasibility and fidelity.
• Implementing feasible, high-impact strategies can significantly improve the transition for young people with epilepsy, even with limited resources.