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

BACKGROUND

Multidisciplinary care under intestinal rehabilitation programs (IRPs) improves survival in pediatric intestinal failure (IF). Professional societies recommend the management of pediatric patients with IF by an IRP. Whether these recommendations are followed in cases of neonatal IF is currently unclear. The objective of this study was to describe the current state of neonatal IF care across North America through the Children's Hospitals Neonatal Consortium.

METHODS

A web-based survey was sent in July 2023. This survey consisted of adaptive questioning and contained 10-54 questions. The survey covered topics regarding IF care: diagnosis, rehabilitation program management, protocol use, and follow-up. To determine correlation of respondent role and answer given, Spearman correlation was used to analyze a portion of responses.

RESULTS

There was a response rate of 93% (42/45). A total of 79% (33/42) of centers report having an IRP caring for neonatal patients. The composition and care provided by the program varied by center, with 60% (25/42) having protocols for neonatal IF management. A total of 76% (32/42) of centers report a multidisciplinary intestinal rehabilitation follow-up.

CONCLUSIONS

Neonatal IF care varies across North America. Although the presence of a rehabilitation program is known to improve pediatric patient outcomes, a relevant minority of centers in this consortium do not have access to this care. Future studies comparing neonatal specific IF care strategies are critically important to optimize outcomes.