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Weaning infants with short bowel syndrome associated intestinal failure from parenteral nutrition: An ERNICA
Susan Hill1, Rebecca Pulvirenti2, Dominique Guimber3
1Department of Gastroenterology, Great Ormond Street Hospital for Children, London WC1N 3JH, UK.
Insights
Practices for weaning short bowel syndrome (SBS)-intestinal failure (IF) infants from parenteral nutrition (PN) varied widely among European centers. Further multicenter studies are needed to establish evidence-based guidelines for optimal infant outcomes.
Area of Science:
- Pediatric Gastroenterology
- Neonatology
- Clinical Nutrition
Background:
- Short bowel syndrome (SBS) with intestinal failure (IF) in infants necessitates parenteral nutrition (PN).
- Weaning infants from PN is a critical step in managing SBS-IF.
- European Reference Network for rare Inherited and Congenital Anomalies (ERNICA) facilitates collaboration among specialist centers.
Purpose of the Study:
- To explore and compare the diverse practices of European Intestinal Rehabilitation Centres in weaning SBS-IF infants from PN.
- To identify variations in nutritional strategies, feeding methods, and guideline utilization.
Main Methods:
- A questionnaire was emailed to 49 ERNICA centers focusing on weaning practices for neonatal onset SBS-IF.
- Data collected included oral/nasogastric (NG) feeding, protocol use, PN cycling criteria, dietary recommendations, teduglutide use, antibiotic strategies, and follow-up.
- Descriptive statistical analysis was performed on responses from 35 participating centers across 15 countries.
Main Results:
- Most centers (74.3%) used NG feeding to supplement oral intake in non-thriving infants <6 months, continuing for >6 months if needed.
- While 63% used local/national guidelines for weaning PN, practices for PN cycling, dietary recommendations, and antibiotic use varied significantly.
- Teduglutide was utilized in 92% of centers where approved and funded; 95% reduced PN infusion rates before discontinuation, and 88.6% monitored patients until adult care transition.
Conclusions:
- Significant variability exists in nutritional strategies for weaning SBS-IF infants from PN, even among specialist centers employing guidelines.
- Nasogastric tube feeding is common, but other weaning practices differ substantially.
- Multicenter studies are essential to investigate practices associated with optimal outcomes and develop evidence-based guidelines for SBS-IF infant management.
Background:
To explore and compare practices of European Intestinal Rehabilitation Centres participating in the European Reference Network for rare Inherited and Congenital Anomalies (ERNICA) intestinal failure (IF) working group when weaning short bowel syndrome (SBS)-IF infants from parenteral nutrition (PN).
Material And Methods:
Questionnaires were distributed by email to 49 ERNICA centres. Details regarding oral/nasogastric (NG) feeding when weaning PN, use of protocols/guidelines, criteria for PN cycling/reducing infusion hours, dietary recommendations, use of synthetic glucagon-like peptide-2 (teduglutide), antibiotics for intestinal bacterial overgrowth and long-term follow-up practices were requested in children with neonatal onset SBS-IF. Descriptive statistical analysis was conducted.
Results:
Thirty-five/49centers from 15 countries participated. In non-thriving infants aged < 6months, 74.3% centres supplemented oral intake with NG feeding and 94.3% continued it for > 6months if needed. Local/national guidelines were used by 63% when weaning PN. Criteria for cycling PN included age (range: term-3 months), weight (3-4.5 kg), and enteral feed tolerance with 95% centres reducing PN infusion rate before disconnecting. In 88.6% centres patients were monitored until transitioned to adult care (even if weaned from PN). Dietary recommendations and antibiotic usage varied widely. Teduglutide was used in 23/25(92%) centres from 11 countries where it was approved and funded.
Conclusion:
A variety of nutritional strategies were used to wean PN in SBS-IF infants even in specialist centres using guidelines. NG-tube feeding was used alongside oral intake in most centres, but other practices differed widely. Multicentre studies investigating which practices are associated with the best outcome for infants with SBS-IF are needed to develop evidence-based guidelines.
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