Caregiver perspectives on barriers and facilitators affecting quality of life in pediatric intestinal failure

Background: As intestinal failure patients (IF) reach adulthood, transitioning to adult care remains a challenge due to a lack of specialized programs.This study examined the characteristics of patients who transitioned care from a quaternary pediatric intestinal rehabilitation program and evaluated their outcomes.Methods: A retrospective cohort study was conducted in 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 stratified 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 or Chi square/Fishers exact test with P<0.05 being significant.Results: Forty-six patients were included with 68% having a diagnosis of short bowel syndrome, 20% with an ostomy, and 30% on parenteral nutrition.Twenty-seven patients (59%) transitioned to adult care at a median age of 20.3 years.No demographic, nutritional, or comorbidity differences were observed between groups (Table 1).Higher mortality occurred within median time of transfer at 12 months in transitioning vs patients continuing care (33 % vs 0.5%, p = 0.02).Conclusions: Advancements in pediatric IF management have improved survival while creating a growing need for adult IF programs.Patients transitioned to adult care have a higher mortality 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.