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Published on: February 10, 2022

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

Erica C Arnold1, Megan A Read Ivaturi1, Elizabeth A Barmash2

  • 1Center for Surgical Outcomes Research, Abigail Wexner Research Institute, Nationwide Children's Hospital, Columbus, OH, USA.

Journal of Pediatric Surgery
|July 8, 2026
PubMed

Insights

Structured transition of care (TOC) programs for adults with congenital surgical conditions are uncommon in the U.S. This study reveals a significant gap in coordinated pediatric to adult surgical care pathways.

Area of Science:

  • Pediatric Surgery
  • Healthcare Systems
  • Patient Transition of Care

Background:

  • Growing population of adults with congenital surgical conditions due to advances in neonatal care.
  • Lack of defined transition of care (TOC) pathways between pediatric and adult surgical systems.
  • Need to understand the current national landscape of TOC for these patients.

Purpose of the Study:

  • To assess the current national landscape of transition of care (TOC) for adults with congenital surgical conditions.
  • To identify the prevalence and characteristics of TOC programs for specific conditions.

Main Methods:

  • National survey distributed to program directors of pediatric surgery fellowships and chairs of non-fellowship pediatric surgery programs in the U.S.
  • Survey focused on TOC for short bowel syndrome (SBS), esophageal atresia (EA), Hirschsprung disease (HSCR), anorectal malformation (ARM), and congenital diaphragmatic hernia (CDH).

Main Results:

  • Low response rate (45.9%) to the survey.
  • Only 27.8% of responding institutions reported a formal TOC program for at least one condition.
  • Prevalence of TOC programs varied by condition, with ARM (19.0%) and HSCR (16.5%) being more common.
  • Patients with HSCR and ARM were more likely to be followed by pediatric surgeons into adulthood.
  • TOC commonly involved transition-specific education and facilitated meetings with adult specialists.

Conclusions:

  • Formal transition of care (TOC) programs for congenital surgical conditions are infrequent in the U.S.
  • A significant gap exists in structured TOC pathways, necessitating improved coordination between pediatric and adult surgical care.
  • Further development and implementation of standardized TOC protocols are crucial for this growing patient population.
Abstract

Keywords:
Anorectal malformationCongenitalCongenital diaphragmatic herniaEsophageal atresiaHirschsprung diseaseShort bowel syndromeTransition of care

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