Building a bridge for transition: A user-driven study on developing a transition clinic for adolescents with epilepsy

Area of Science:

• Healthcare Management
• Patient Transition Support
• Epilepsy Care

Background:

• Adolescents with epilepsy (AWE) face challenges transitioning from pediatric to adult healthcare.
• Existing transition models may not adequately address the complex needs of AWEs.

Purpose of the Study:

• To develop and design the Joint Transition Clinic, a collaborative healthcare model.
• To support adolescents with epilepsy during their transition from pediatric to adult care.

Main Methods:

• Utilized a participatory design (PD) approach involving AWEs, parents, nurses, and physicians.
• Conducted iterative development and co-design workshops.
• Integrated user-suggested ideas, focusing on "The Bridge" concept with elements from "The Knowledge Giraffe."

Main Results:

• Successfully developed the Joint Transition Clinic, addressing identified needs and preferences of AWEs.
• The PD approach facilitated patient and parent involvement in intervention design.
• The clinic design is ready for pilot testing.

Conclusions:

• The Joint Transition Clinic is an effective, patient-centered organizational intervention.
• Participatory design is a valuable method for developing healthcare transition solutions.
• The developed clinic supports AWEs' self-management and healthcare needs.