Building bridges Optimizing transitional care for children with medical complexity

Children with medical complexity (CMC) are a relatively small but highly resource-intensive group. Medical advances have increased survival, often with dependence on medical technology and 24/7 care. The hospital-to-home (H2H) transition is a vulnerable yet crucial phase: parents shift from care recipients to primary caregivers and take on complex, sometimes high-tech tasks under major emotional and organizational pressure. Meanwhile, structured evidence-based care pathways are often lacking, and interventions are hard to compare because outcomes are measured inconsistently.
This thesis aims to understand and improve H2H care for CMC. It maps current H2H practices in the Netherlands and identifies where and why transitions break down. It also determines which outcomes are essential to evaluate transitional care. Building on international evidence and consensus with healthcare professionals and parents, a core outcome set was developed.
The thesis further describes and evaluates the Jeroen Pit Huis as an innovative Transitional Care Unit that supports families step-by-step toward discharge home. Finally, it presents national recommendations and a practical care pathway to make H2H transitions more consistent, family-centred, and better organized.