COCCOS: a blueprint transition program for young people with chronic conditions using experience-based co-design

BACKGROUND: Adolescents and young adults (AYAs) with chronic conditions are expected to transfer from pediatric to adult healthcare services during adolescence. Up to 40% experience disruption in care during their transfer. To prevent adverse health outcomes, structured healthcare transition (HCT) programs are recommended, emphasizing early preparation and guidance. Despite this, many existing programs focus on more complex conditions, are implemented ad hoc and follow a top-down design approach. This study aimed to co-design a HCT program for AYAs with less complex chronic conditions, actively involving stakeholders at multiple levels in Flanders, Belgium. METHODS: A multicenter, participatory study was conducted using the accelerated Experience-Based Co-Design methodology. Participants included AYAs (aged 15–22y) diagnosed with obesity, type 1 diabetes, or asthma, along with their parents and healthcare providers. The process encompassed seven consecutive stages: observations, interviews/focus groups, trigger film development, feedback sessions, co-design workshops and an evaluation. Photovoice was incorporated as a complementary method to capture AYA’s lived experiences at the interview stage. RESULTS: The study engaged 21 AYAs, five parents, and 45 healthcare providers as co-designers of the HCT program. Together, they defined the essential components of an effective HCT. Four key moments were identified: (i) introducing HCT, (ii) a split visit, (iii) a joint consultation and (iv) a feedback moment following the actual transfer to adult care. An individualized HCT plan was deemed mandatory to provide guidance and structure in HCT for AYAs and healthcare providers. CONCLUSION: Effective healthcare transition is critical to mitigating negative health outcomes among AYAs with chronic conditions. This study offers a set of stakeholder-derived, minimum criteria for a person-centered HCT program, co-designed to address the needs of those involved.