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Published on: December 1, 2012
Interdisciplinary transition of care for congenital gastrointestinal malformations: analysis of a standardized
Rim Kiblawi1, Lars Giese1, Sabine Klamt2
1Department of Pediatric and Adolescent Surgery, 9177 Hannover Medical School , Hannover, Germany.
Insights
A structured transition of care program improved transition competence and patient satisfaction in adolescents with congenital gastrointestinal malformations. This approach is vital for managing long-term sequelae in these patients.
Area of Science:
- Pediatric Surgery
- Gastroenterology
- Adolescent Medicine
Background:
- Adolescents with congenital gastrointestinal malformations (CGIMs) experience significant physical and psychological challenges.
- Existing transition of care (TOC) programs lack standardization, impacting long-term patient outcomes.
- Structured TOC is crucial for managing the complex needs of adolescents with CGIMs.
Purpose of the Study:
- To evaluate the effectiveness of a structured interdisciplinary TOC program for adolescents with CGIMs.
- To assess improvements in patient well-being, gastrointestinal quality of life, transition competence, and satisfaction.
- To establish a standardized TOC model for CGIMs in Germany.
Main Methods:
- Prospective observational study of patients aged ≥14 years with CGIMs (esophageal atresia, anorectal malformations, Hirschsprung's disease).
- Multidisciplinary team involvement: pediatric/adult gastroenterologists, nutritionists, psychologists, surgeons.
- Validated instruments used: WHO-5 (well-being), GIQLI (GI quality of life), TCS (transition competence), ZAP (satisfaction).
Main Results:
- Patients with CGIMs reported lower well-being (WHO-5) and GI quality of life (GIQLI) compared to controls.
- Transition competence scores (TCS) significantly improved from 27.35 to 31.80 (p=0.015).
- High patient satisfaction reported, especially regarding program interaction (93.1%) and organization (91.3%).
Conclusions:
- The study introduced the first standardized TOC program for CGIMs in Germany.
- The program effectively enhanced transition competence and patient satisfaction.
- Further research is recommended to validate findings and support broader implementation of structured TOC.
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.
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