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Published on: November 6, 2012
Pediatric Intestinal Rehabilitation and Transplantation Registry: Initial Report from a European Collaborative
Giorgia Totonelli1, Roberto Tambucci1,2, Alessandro Boscarelli1
1Department of Medical and Surgical Neonatology, Bambino Gesù Children's Research Hospital, Rome, Italy.
Insights
Pediatric intestinal failure (IF) due to short bowel syndrome (SBS) is common. The Pediatric Intestinal Rehabilitation and Transplantation (PIRAT) registry shows 114 children with SBS-related IF, with 68% achieving intestinal autonomy.
Area of Science:
- Pediatric Gastroenterology
- Intestinal Rehabilitation
- Transplantation
Background:
- Short bowel syndrome (SBS) is a primary cause of intestinal failure (IF) in children.
- The Pediatric Intestinal Rehabilitation and Transplantation (PIRAT) registry was established to standardize care.
- This study describes patients with IF using the PIRAT database.
Purpose of the Study:
- To describe the characteristics of pediatric patients with intestinal failure (IF) using the PIRAT database.
- To analyze data from two European referral centers within the PIRAT registry.
- To establish a foundation for a standardized international network for IF management.
Main Methods:
- Analysis of data from two tertiary European referral centers registered in PIRAT (1994-2015).
- Definition of neonatal SBS-related IF: parenteral nutrition (PN) for >75 days post-neonatal resection.
- Collected data included demographics, disease, residual small intestine length, and PN status.
Main Results:
- 114 children with SBS-related IF were identified; 60% were male.
- Common causes included intestinal atresia (27%), midgut volvulus (25%), and necrotizing enterocolitis (20%).
- Median residual small bowel length was 46 cm, and 68% achieved intestinal autonomy.
Conclusions:
- The PIRAT registry provides valuable data on pediatric IF.
- This initial analysis highlights the heterogeneity of SBS-related IF.
- PIRAT facilitates the development of an international network (IF-net) to standardize and improve IF care.
Introduction:
Short bowel syndrome (SBS) is the main cause of intestinal failure (IF) in the pediatric population. To promote the standardization of care of these patients, the registry of Pediatric Intestinal Rehabilitation and Transplantation (PIRAT) has been established. The aim of this study is to describe patients with IF using PIRAT database.
Materials And Methods:
Data from two tertiary care European referral Centers registered in PIRAT (https://www.studeon.eu/pirat) were analyzed (1994-2015). Neonatal SBS-related IF was defined as need for parenteral nutrition (PN) to sustain life and growth for more than 75 days, after extensive bowel resection during neonatal period. Data included patient demographics, disease at birth, residual small intestine, and intestinal autonomy (PN on/off).
Results:
In this study, 114 children with SBS-related IF were identified (male 60%). Median gestational age was 35.3 weeks (interquartile range [IQR]: 33.0-38.0); median birth weight was 2,440 g (IQR: 1,700-2,990). The main causes of SBS were intestinal atresia in 31 (27%), midgut volvulus in 29 (25%), necrotizing enterocolitis in 23 (20%), and gastroschisis in 12 (11%). Nine (7.9%) patients died on PN (six sepsis, two IF-associated liver disease, and one multiorgan failure). Median residual small bowel length was 46 cm (IQR: 13.0-92.5). Ileocecal valve was resected in 48 patients (42%). Intestinal autonomy was achieved in 68% patients.
Conclusion:
We present the web-based registry PIRAT and the first results of patients with IF registered from two European Centers. PIRAT could give the opportunity to create a dedicated international network (IF-net) to standardize, improve, and spread the therapeutic paths for the rare and heterogeneous condition of SBS-related IF.
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