Care transition from a pediatric intestinal rehabilitation program to adult care and the risk of all-cause mortality: A retrospective cohort study

Infographic · Mar 2026 · 1 min read

In brief

Retrospective study of 46 intestinal failure patients found significantly higher mortality in those transitioning to adult care (33%) versus remaining in pediatric programs (5%), with median time to death of 12 months post-transition. Findings highlight critical need for specialized adult intestinal rehabilitation programs and structured transition protocols.

Patients with intestinal failure who transitioned to adult care had 33% mortality vs 5% in those who remained in pediatric programs (P=0.02)
Median time to death after transition was only 12 months, suggesting critical vulnerability during the early post-transition period
No differences in medical complexity, nutrition status, or comorbidities explained the mortality gap between transition groups
Structured transition programs with specialized adult intestinal rehabilitation expertise are urgently needed to improve survival outcomes
68% of patients had short bowel syndrome; 30% remained on parenteral nutrition at age 18, highlighting ongoing medical complexity

Written by the GCMD Library team from the infographic.

A three-column comparison layout with medical illustrations of esophageal procedures. Each column contains anatomical diagrams in blue and pink tones showing the esophagus and stomach, accompanied by bullet-pointed text describing outcomes. The left column shows Heller myotomy, the middle shows esophageal dilatation, and the right shows POEM procedure. Bar charts or percentage indicators display success rates for each approach.

Gillian R Goddard, Stephanie Oliveira, Crystal Slaughter, Kim Klotz, Marilyn Stoops, Julie Schletker, Jackie Wessel, Michael Helmrath, Samuel Kocoshis, Monique Goldschmidt, Paul W Wales

Background: As patients with intestinal failure reach adulthood, transitioning to adult care remains challenging because of a lack of specialized programs. This study evaluated outcomes of patients who transitioned care from a pediatric intestinal rehabilitation program.

Methods: A retrospective cohort study was conducted of intestinal failure patients who turned 20 years old between 2013 and 2022 with follow-up through February 2025. Patient characteristics, including demographics, anatomy, nutrition, and comorbidities, were collected for all patients at the age of 18 years. Patients were classified into exposure groups based on whether they transitioned to adult care or continued follow-up at our institution. Univariate analysis comparing groups was performed with Mann-Whitney U test or chi-square/Fisher's exact test, with P < 0.05 being significant.

Results: Forty-six patients were included, with 68% having short bowel syndrome. Nine patients (20%) had an ostomy and 14 of 46 (30%) continued to receive parenteral nutrition. Twenty-seven patients (59%) transitioned to adult care at a median age of 20.8 (interquartile range [IQR], 3.8) years. No demographic, nutrition, or comorbidity differences were observed between groups. Higher mortality rates occurred among patients who transitioned care compared with patients continuing care at our institution (33% vs 5%; P = 0.02). The median time duration to death was 12 months (IQR, 43.5).

Conclusion: Patients transitioned to adult care have a higher mortality rate, despite no obvious difference in medical complexity based on medical devices or comorbidities. Additional studies are needed to understand this difference. Increased awareness and structured transition programs are essential to ensuring optimal long-term outcomes.

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