Transition of care for children with complex congenital surgical conditions as they age into adulthood

INTRODUCTION: Advances in neonatal care have created an expanding population of adults living with congenital surgical conditions, yet structured transition of care (TOC) pathways between pediatric and adult surgical systems are poorly defined. This study aims to understand the current national landscape of TOC for congenital surgical conditions. METHODS: A survey exploring TOC for short bowel syndrome (SBS), esophageal atresia (EA), Hirschsprung disease (HSCR), anorectal malformation (ARM), and congenital diaphragmatic hernia (CDH) was distributed to program directors of all ACGME-accredited pediatric surgery fellowships and pediatric surgery chairs at non-fellowship pediatric surgery programs across the U.S. RESULTS: From 172 surveys distributed, 79 (45.9%) responses were received. Half (50.6%) were from free-standing children's hospitals, and most (79.7%) were affiliated with an adult institution. Six (8.3%) had a formal TOC policy, and 20 (27.8%) reported a TOC program for at least one of the conditions. Eleven (13.9%) had TOC programs for SBS, 6 (7.6%) for EA, 13 (16.5%) for HSCR, 15 (19.0%) for ARM, and 5 (6.3%) for CDH. TOC programs were similarly present at free-standing and adult-affiliated children's hospitals (26.3% vs 29.4%, p = 0.48). Patients with HSCR and ARM were more frequently followed by pediatric surgeons into adulthood; patients with SBS were more commonly transitioned to non-surgical pediatric specialists. TOC commonly included transition-specific education and facilitation of meetings with adult specialists. CONCLUSION: TOC programs for congenital surgical conditions are uncommon in the U.S. These findings highlight a gap in structured TOC pathways, underscoring the need for coordination between pediatric and adult care.