Session Description: 

Advances in pediatric care have enabled many children with medical complexity and rare disease to survive into adulthood, yet transition pathways remain limited or nonexistent for this population. Pediatric providers often continue care beyond traditional age limits, while families and clinicians face uncertainty, fragmentation, and system-level barriers when adult services are unavailable or unprepared to meet complex needs.

This Grand Rounds session will examine the clinical, structural, and workforce challenges that contribute to gaps in transition planning for youth with medical complexity. Through the combined perspectives of a parent with lived experience who also partners professionally with families, and physicians caring for this population, the session will explore the impact of inadequate transition pathways on patient outcomes, caregiver burden, clinician moral distress, and health system utilization.

Participants will review emerging strategies to improve continuity of care, including extended pediatric care models, shared pediatric–adult partnerships, and collaborative approaches to transition planning in systems where adult specialty care is limited.

Learning Objectives: 

1. Identify and Describe the System Gap: Examine the data on the improving longevity of patients with medical complexity and rare diseases and describe the challenges of meeting their evolving structural, clinical, and workforce needs
2. Analyze Impact on Patients, Families, and Clinicians: Examine the importance of optimizing transition planning and processes on health outcomes, caregiver burden, and health system utilization, using both clinical and lived-experience perspectives.
3. Apply Strategies to Improve Transition Pathways: Identify actionable strategies to improve care continuity, including models for extended pediatric care, shared pediatric–adult partnerships, and co-designed transition pathways for individuals with medical complexity.