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

This study describes the development and design of the Joint Transition Clinic, a collaborative solution designed to support adolescents with epilepsy (AWE) in their transition from pediatric to adult healthcare. Using a participatory design (PD) approach, the study involved AWEs, parents, nurses, and physicians in an iterative development and co-design process. Through a series of workshops, users suggested three ideas: “The Bridge,” “The Knowledge Giraffe,” and “No rules app.” After considering all three ideas, the research team and participants agreed to proceed with the development of “The Bridge,” integrating elements from “The Knowledge Giraffe.” This process led to the creation of the Joint Transition Clinic, encompassing many of the AWEs’ needs and wishes. The PD approach proved effective in creating an organizational-based intervention that addresses patient needs and supports self-management while ensuring AWEs and their parents had a voice in its development, leading to a solution ready for pilot testing.