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.
