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Trends in Pediatric Intestinal Failure: A Multicenter, Multinational Study
Daniela Gattini1, Amin J Roberts2, Paul W Wales3
1Group for Improvement of Intestinal Function and Treatment, Transplant Centre, Toronto, Ontario, Canada; Division of Gastroenterology, Hepatology and Nutrition, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
Insights
Outcomes for children with intestinal failure show decreased death and transplant rates, but enteral autonomy has not improved. More parenteral nutrition dependence necessitates new strategies for better patient outcomes.
Area of Science:
- Pediatric Gastroenterology
- Intestinal Failure Research
- Clinical Outcomes Analysis
Background:
- Pediatric intestinal failure (IF) affects numerous children, necessitating long-term parenteral nutrition (PN) and posing significant risks.
- Understanding the natural history and factors influencing outcomes in IF is crucial for improving patient care.
- Contemporary data on IF outcomes are limited, especially from diverse, multicenter cohorts.
Purpose of the Study:
- To evaluate the natural history and outcomes of children diagnosed with intestinal failure.
- To identify factors associated with achieving enteral autonomy, requiring transplantation, or death.
- To analyze trends in IF outcomes within a large, multicenter cohort from 2010-2015.
Main Methods:
- Retrospective analysis of 443 children with intestinal failure across 6 pediatric IF programs.
- Competing-risk analysis to determine cumulative incidence of enteral autonomy, transplantation, and death.
- Bivariate and multivariable analyses using chi-squared tests and Cox proportional hazard regression.
Main Results:
- Short bowel syndrome (SBS) was the primary diagnosis in 84.9% of patients.
- At 6 years, cumulative incidences were 53.0% for enteral autonomy, 16.7% for transplantation, and 10.5% for death.
- Enteral autonomy was linked to SBS, adequate small bowel length, ileocecal valve presence, and absence of portal hypertension.
Conclusions:
- While death and transplantation rates have declined, significant progress in achieving enteral autonomy for children with IF has not been observed.
- A growing proportion of IF patients remain dependent on parenteral nutrition, highlighting a critical unmet need.
- Novel therapeutic strategies are essential to enhance enteral autonomy rates and improve long-term outcomes for children with intestinal failure.
Objectives:
To assess the natural history and outcomes of children with intestinal failure in a large, multicenter, geographically diverse contemporary cohort (2010-2015) from 6 pediatric intestinal failure programs.
Study Design:
Retrospective analysis of a multicenter intestinal failure cohort (n = 443). Competing-risk analysis was used to obtain cumulative incidence rates for the primary outcome (enteral autonomy, transplantation, or death). The χ2 test and Cox proportional hazard regression were used for bivariate and multivariable analyses.
Results:
The study cohort comprised 443 patients (61.2% male). Primary etiologies included short bowel syndrome (SBS), 84.9%; dysmotility disorder, 7.2%; and mucosal enteropathy, 7.9%. Cumulative incidences for enteral autonomy, transplantation, and death at 6 years of follow-up were 53.0%, 16.7%, and 10.5%, respectively. Enteral autonomy was associated with SBS, ≥50% of small bowel length, presence of an ileocecal valve (ICV), absence of portal hypertension, and follow-up in a non-high-volume transplantation center. The composite outcome of transplantation/death was associated with persistent advanced cholestasis and hypoalbuminemia; age <1 year at diagnosis, ICV, and intact colon were protective.
Conclusions:
The rates of death and transplantation in children with intestinal failure have decreased; however, the number of children achieving enteral autonomy has not changed significantly, and a larger proportion of patients remain parenteral nutrition dependent. New strategies to achieve enteral autonomy are needed to improve patient outcomes.
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