Infographic1 min read·Published Jul 2026

Surveillance practices of pediatric intestinal failure patients by North American intestinal rehabilitation programs

Infographic · Jul 2026 · 1 min read

In brief

Cross-sectional survey of 25 North American intestinal rehabilitation programs reveals wide variation in surveillance practices for children on long-term parenteral nutrition. While most programs monitor liver function and venous patency, fewer systematically assess renal function, bone health, or quality of life, highlighting the need for consensus surveillance guidelines.

No consensus exists on surveillance frequency or parameters for pediatric intestinal failure patients on long-term parenteral nutrition.
Only 8% of programs routinely assess renal function despite known PN-associated nephrotoxicity risk in children.
Formal neurocognitive follow-up occurs in only 20% of programs, representing a significant gap in developmental monitoring.
72% monitor venous patency but approaches vary widely, highlighting need for standardized catheter surveillance protocols.
Consensus surveillance schedule needed to ensure early complication detection and improve long-term outcomes in this growing population.

Written by the GCMD Library team from the infographic.

The infographic uses a pink, teal, and yellow color scheme with illustrated icons including a clipboard, IV bag, and medical professional with an X-ray. Information is organized in distinct colored sections flowing from top to bottom, with key statistics prominently displayed in large text. The layout contrasts 'Most Common' and 'Least Common' monitoring practices in side-by-side panels.

Christina Belza, Glenda Courtney-Martin, Yaron Avitzur, Paul W Wales

Introduction: Advancements in the survival of pediatric intestinal failure (IF) has resulted in a larger population of children requiring long-term parenteral nutrition (PN). Monitoring to prevent or address complications is vital in IF management, but currently there is no consensus on what to monitor or frequency. Our objective was to determine surveillance practices in North American (Canada and the United States) intestinal rehabilitation programs (IRPs).

Material and methods: A cross-sectional survey was completed using a questionnaire developed by our center. Surveys were emailed to centers identified from the American Society of Parenteral and Enteral Nutrition IF working group. Data collected included program demographics and surveillance of liver and renal function, venous patency, bone health, macro- and micronutrients, growth, neurocognitive development, and quality of life (QoL). Descriptive analysis was performed on pooled responses with programs stratified into those with greater and lesser than 50 patients on home PN.

Results: Twenty-five of 49 programs (51 %) responded with a total representation of 2995 patients including 971 patients on PN. Twenty IRPs (79.2 %) perform routine abdominal ultrasounds, however only 2 programs report evaluation of renal function. Eighteen IRPs (72 %) monitor venous patency and 56 % have schedule to evaluate bone health. Five programs (20 %) report formal neurocognitive follow up and 25 % monitor child and family QoL.

Conclusion: There is wide variation in surveillance practices among Canada and US based pediatric IRPs. Data to support surveillance practices is needed. A consensus surveillance schedule could ensure early recognition and mitigation of complications to help improve outcome in this population.

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