# Care transition from a pediatric intestinal rehabilitation program to adult care and the risk of all-cause mortality: A retrospective cohort study — GCMD Library
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.
Type: video · 1 min · posted 2026-05-04
Canonical: https://library.globalcastmd.com/watch/care-transition-from-a-pediatric-intestinal-rehabilitation-program-to-adult-care-and-the-risk-of-all-cause-mortality-a-retrospective-cohort-study-11901
## Chapters
- [0:00](https://library.globalcastmd.com/watch/care-transition-from-a-pediatric-intestinal-rehabilitation-program-to-adult-care-and-the-risk-of-all-cause-mortality-a-retrospective-cohort-study-11901?t=0) Introduction: Survival Advances and Transition Risk
- [0:09](https://library.globalcastmd.com/watch/care-transition-from-a-pediatric-intestinal-rehabilitation-program-to-adult-care-and-the-risk-of-all-cause-mortality-a-retrospective-cohort-study-11901?t=9) Study Design and Population
- [0:23](https://library.globalcastmd.com/watch/care-transition-from-a-pediatric-intestinal-rehabilitation-program-to-adult-care-and-the-risk-of-all-cause-mortality-a-retrospective-cohort-study-11901?t=23) Key Findings: Mortality Disparity
- [0:46](https://library.globalcastmd.com/watch/care-transition-from-a-pediatric-intestinal-rehabilitation-program-to-adult-care-and-the-risk-of-all-cause-mortality-a-retrospective-cohort-study-11901?t=46) Clinical Implications
## Statements
- "Advances in medicine have dramatically improved survival rates for children with intestinal failure" — Julian Goddard (clinical) [0:00](https://library.globalcastmd.com/watch/care-transition-from-a-pediatric-intestinal-rehabilitation-program-to-adult-care-and-the-risk-of-all-cause-mortality-a-retrospective-cohort-study-11901?t=0)
- "The study tracked 46 patients who turned 20 to evaluate outcomes during care transition" — Julian Goddard (epidemiological) [0:13](https://library.globalcastmd.com/watch/care-transition-from-a-pediatric-intestinal-rehabilitation-program-to-adult-care-and-the-risk-of-all-cause-mortality-a-retrospective-cohort-study-11901?t=13)
- "59% of patients transitioned to adult focused programs while the rest continued receiving care at Cincinnati Children's" — Julian Goddard (epidemiological) [0:23](https://library.globalcastmd.com/watch/care-transition-from-a-pediatric-intestinal-rehabilitation-program-to-adult-care-and-the-risk-of-all-cause-mortality-a-retrospective-cohort-study-11901?t=23)
- "Patients who transitioned to adult care had a 33% mortality rate" — Julian Goddard (epidemiological) [0:29](https://library.globalcastmd.com/watch/care-transition-from-a-pediatric-intestinal-rehabilitation-program-to-adult-care-and-the-risk-of-all-cause-mortality-a-retrospective-cohort-study-11901?t=29)
- "Patients who stayed in pediatric care had a 5% mortality rate" — Julian Goddard (epidemiological) [0:29](https://library.globalcastmd.com/watch/care-transition-from-a-pediatric-intestinal-rehabilitation-program-to-adult-care-and-the-risk-of-all-cause-mortality-a-retrospective-cohort-study-11901?t=29)
- "The two groups showed no obvious differences in medical complexity or disease burden" — Julian Goddard (clinical) [0:29](https://library.globalcastmd.com/watch/care-transition-from-a-pediatric-intestinal-rehabilitation-program-to-adult-care-and-the-risk-of-all-cause-mortality-a-retrospective-cohort-study-11901?t=29)
- "The median time from transition to death was approximately 12 months" — Julian Goddard (epidemiological) [0:42](https://library.globalcastmd.com/watch/care-transition-from-a-pediatric-intestinal-rehabilitation-program-to-adult-care-and-the-risk-of-all-cause-mortality-a-retrospective-cohort-study-11901?t=42)
- "Young adults with a history of intestinal failure aging out of pediatric care remain a critically vulnerable population" — Julian Goddard (opinion) [0:46](https://library.globalcastmd.com/watch/care-transition-from-a-pediatric-intestinal-rehabilitation-program-to-adult-care-and-the-risk-of-all-cause-mortality-a-retrospective-cohort-study-11901?t=46)
- "Structured transition programs need to be developed and widely implemented for this population" — Julian Goddard (opinion) [0:46](https://library.globalcastmd.com/watch/care-transition-from-a-pediatric-intestinal-rehabilitation-program-to-adult-care-and-the-risk-of-all-cause-mortality-a-retrospective-cohort-study-11901?t=46)
## Transcript
Advances in medicine have dramatically improved survival rates for children with intestinal failure. Yet the moment they age out of pediatric care may represent one of the most dangerous transitions of their lives. Hi, I'm Dr. Julian Goddard from Cincinnati Children's. Our intestinal rehabilitation team tracked 46 patients who turned 20 to see what happened when they transitioned their medical care to adult healthcare centers or continued care at our pediatric institution. 59% of patients transitioned to adult focused programs while the rest continued receiving care at Cincinnati Children's. Strikingly, patients who transitioned to adult care had a significantly higher mortality rate, 33% compared to just 5% among those who stayed, despite showing no obvious differences in medical complexity or disease burden. Even more concerning, the median time from transition to death was only about 12 months. Until structured transition programs are developed and widely implemented, young adults with a history of intestinal failure, aging out of pediatric care remain a critically vulnerable population in need of greater attention and support. Stay tuned and subscribe for more articles you should know about.
---
Not medical advice · citation policy: https://library.globalcastmd.com/ai