Current state of neonatal intestinal rehabilitation care in North America: A descriptive survey-based study

Area of Science:

• Pediatric Gastroenterology
• Neonatal Care
• Intestinal Rehabilitation

Background:

• Multidisciplinary care via intestinal rehabilitation programs (IRPs) is recommended for pediatric intestinal failure (IF) to improve survival.
• The extent to which these recommendations are implemented for neonatal IF is not well understood.
• This study aimed to assess the current landscape of neonatal IF care in North America.

Purpose of the Study:

• To evaluate the availability and characteristics of IRPs managing neonatal IF across North America.
• To identify variations in diagnostic, management, and follow-up protocols for neonatal IF.
• To understand the current state of multidisciplinary care for neonates with IF.

Main Methods:

• A web-based survey was distributed in July 2023 to North American centers.
• The survey included adaptive questioning (10-54 questions) covering IF diagnosis, IRP management, protocols, and follow-up.
• Spearman correlation was used to analyze the relationship between respondent role and answers.

Main Results:

• A high response rate of 93% (42/45 centers) was achieved.
• 79% of centers reported having an IRP for neonatal patients, but program composition and care varied.
• 60% of centers utilized specific protocols for neonatal IF management, and 76% offered multidisciplinary follow-up.

Conclusions:

• Neonatal IF care exhibits significant variability across North America.
• Despite the known benefits of IRPs, a notable number of centers lack access to this specialized care for neonates.
• Further research into neonatal-specific IF care strategies is essential for optimizing patient outcomes.