Interdisciplinary transition of care for congenital gastrointestinal malformations: analysis of a standardized program.

Abstract

Objectives: Adolescents with congenital gastrointestinal malformations, such as esophageal atresia, anorectal malformations, and Hirschsprung's disease, frequently face long-term physical and psychological sequelae. Despite increasing recognition of the need for structured transition of care (TOC) programs, standardization remains limited. The aim of this study was to evaluate the effectiveness of a structured interdisciplinary TOC program for adolescents with gastrointestinal malformations, focusing on patient well-being, gastrointestinal quality of life, transition competence, and satisfaction.

Methods: We conducted a prospective observational study including all patients aged ≥14 years with esophageal atresia, anorectal malformations, and/or Hirschsprung's disease who participated in a standardized TOC program at Hannover Medical School. The multidisciplinary team included pediatric and adult gastroenterologists, nutritionists, psychologists, and surgeons. Patient-reported outcomes were assessed at baseline and follow-up using validated instruments: WHO-5 (well-being), GIQLI (gastrointestinal quality of life), TCS (transition competence), and the ZAP questionnaire (satisfaction).

Results: A total of 63 patients were included. Compared to healthy controls, patients scored significantly lower on the WHO-5 and GIQLI (p<0.0001), indicating reduced well-being and quality of life. TCS scores improved significantly from 27.35 to 31.80 (p=0.015) during the visits, reflecting increased transition competence. Satisfaction with the program was high across all ZAP domains, particularly in interaction (93.1 %) and organization (91.3 %).

Conclusions: This study presents the first standardized transition of care program for patients with congenital gastrointestinal malformations in Germany. The program improved transition competence and was associated with high patient satisfaction. While emphasizing the value of structured, patient-centered transition care, larger studies are needed to validate these findings and support wider implementation.