Designing integrated transitional care for adolescents and young adults with a rare disease (DITHARD)

The shift from paediatric to adult care is often bumpy for young people with a rare disease. DITHARD co-creates a new care model that truly meets their complex needs.

Research theme: Leadership in healthcare

Field of interest: Health and Care

Duration: 1/10/2025 - 30/09/2029

Financing: FWO

In short

DITHARD investigates how adolescents and young adults with a rare disease can better transition from paediatric to adult healthcare. Together with them, their families and care providers, we develop a new, integrated care model that recognises both medical and social needs.

Need and relevance

The transition from paediatric to adult care often fails, especially for young people with a rare disease. They fall between two systems that are poorly aligned, leading to disrupted care, lower quality of life, and added stress for families and professionals. This project responds to a real societal need by designing structural solutions based on the lived experiences of the target group.

From approach to impact

Through co-creation with adolescents, families and care professionals, we develop a feasible and affordable care model. We use service design methods in combination with academic research such as literature reviews, interviews, focus groups, patient journeys and pilot testing. The process consists of seven work packages, from design to implementation. The model aims to support a smoother and safer transition to adult care, with improved access to specialised services, fewer hospitalisations and better quality of life. The findings will lead to practical tools and policy recommendations to structurally improve transitional care.