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

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.