Sara Santos

Background/Objectives: Transitioning from pediatric to adult services can be challenging for youth with complex chronic health conditions, especially those with multi-morbidity. These youth often require extra coordination and support during this phase of their healthcare journey. Building upon existing provincial and national initiatives for transitions from pediatric to adult healthcare services, we have developed a hospital-wide program within one of Canada’s largest children’s hospitals that incorporates an integrated care model aimed at better serving these patients and improving outcomes. Methods: Guided by provincial quality standards, an environmental scan and knowledge user engagement were conducted to develop the program, followed by an implementation phase, where the model was piloted. Ongoing learnings from the pilot continue to inform program implementation and evaluation. Results: The Transition to Adult Care (TAC) program offers disease-agnostic care to youth with complex needs for 1–3 years, including 1-year post-transfer, addressing the fragmentation of care across multiple services, organizations and providers. Our interdisciplinary team works in partnership with youth and caregivers to deliver transition navigation, easing the burden on patients and families by tailoring transition supports to each individual youth and caregiver. Preliminary data from the pilot revealed a lack of awareness about transition resources and timelines; however, with early engagement and flexible support beyond age 18, youth were able to complete their transition successfully. Conclusions: The TAC program demonstrates a systems-level approach to improving transition to adult care for youth with complex health needs by integrating individualized support, cross-sectoral collaboration, and continuous quality improvement. Early engagement, flexible post-transfer support, and close partnership with youth, caregivers, and providers are key to facilitating transition. These learnings can inform broader implementation efforts and help address persistent gaps in transitional care across healthcare systems.

Introduction Children with medical complexity (CMC) have chronic, intensive care needs managed by many healthcare practitioners. Medical advances have enabled CMC to survive well into adulthood. However, the availability of supports as CMC transition into the adult care system remain suboptimal, contributing to poor care coordination, and discontinuity. Promoting Intensive Transitions for Children and Youth with Medical Complexity from Paediatric to Adult Care (PITCare) aims to assess whether intensive patient and caregiver-oriented transition support beyond age 18 will improve continuity of care for CMC compared with usual care. Methods and analysis This is a pragmatic superiority randomised controlled trial in a parallel group, two-arm design with an embedded qualitative component. CMC turning 17.5 years old will be recruited (n=154), along with their primary caregiver. Participants randomised to the intervention arm will be provided with access to a multidisciplinary transition team who will support patients and caregivers in care planning, integration with an adult primary care provider (PCP), adult subspecialty facilitation and facilitation of resource supports for 2 years. Outcomes will be measured at baseline, 12 and 24 months. The primary outcome measure is successful transfer completion, defined as continuous care in the 2 years after age 18 years old. Secondary outcomes include satisfaction with transitional care, self-management, care coordination, healthcare service use, caregiver fatigue, family distress, utility and cost-effectiveness. Qualitative interviews will be conducted to explore the experiences of patients, caregivers, the transition team, and healthcare providers with the PITCare intervention. Ethics and dissemination Institutional approval was obtained from the Hospital for Sick Children Research Ethics Board. Our findings and resources will be shared with child health policymakers and transitions advocacy groups provincially, nationally, and internationally. Trial registration number ClinicalTrials.gov, US National Library of Medicine, National Institutes of Health, #NCT06093386.