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Surveillance practices of pediatric intestinal failure patients by North American intestinal rehabilitation programs
Christina Belza1,2, Glenda Courtney-Martin1,2,3,4,5, Yaron Avitzur1,2,5
1Group for Improvement of Intestinal Function and Treatment (GIFT), The Hospital for Sick Children, Toronto, Canada.
Insights
Pediatric intestinal failure (IF) patients on long-term parenteral nutrition (PN) have varied monitoring practices. A consensus on surveillance is needed to improve outcomes and prevent complications in IF management.
Area of Science:
- Pediatric Gastroenterology
- Clinical Nutrition
- Health Services Research
Background:
- Improved survival in pediatric intestinal failure (IF) necessitates long-term parenteral nutrition (PN).
- Current monitoring practices for IF patients lack standardization, hindering complication prevention.
- North American intestinal rehabilitation programs (IRPs) require evaluation for surveillance consistency.
Purpose of the Study:
- To assess current surveillance practices in North American IRPs for children with IF on PN.
- To identify variations in monitoring for potential complications.
- To highlight the need for standardized surveillance protocols.
Main Methods:
- A cross-sectional survey was distributed to IRPs in Canada and the United States.
- Data collected included program demographics and surveillance of various health parameters (e.g., liver function, bone health, neurocognition).
- Responses were analyzed descriptively, stratifying programs by patient volume.
Main Results:
- Fifty-one percent of surveyed IRPs responded, representing 971 patients on PN.
- Significant variation exists in monitoring practices, with only 2 programs reporting renal function evaluation.
- Routine abdominal ultrasounds (79.2%) and venous patency monitoring (72%) were common, but bone health, neurocognitive, and quality of life assessments varied widely.
Conclusions:
- Wide variability in surveillance practices exists among pediatric IRPs in North America.
- Evidence-based data is crucial to support the development of standardized surveillance protocols.
- A consensus surveillance schedule could enhance early complication detection and management, improving patient outcomes.
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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