Social and Financial Costs of Neonatal Intestinal Failure

Neonatal short bowel syndrome with intestinal failure is rare, and observational studies are limited to small cohorts. Health disparities exist in long-term management with little known about the initial hospitalization.

To identify children with neonatal short bowel syndrome with intestinal failure and to determine whether race, ethnicity, and neighborhood opportunity are associated with length of stay during their initial hospitalizations.

This cross-sectional study of children with neonatal short bowel syndrome and intestinal failure was conducted between 2004 and 2020, with validation and analysis performed from July 2022 to April 2024. Children were identified from the Pediatric Health Information System database, which included administrative data from 50 freestanding US children's hospitals. Children were included on the basis of a diagnosis code of postsurgical malabsorption and billed charges for a neonatal intensive care unit stay and sustained parenteral nutrition use.

Race and ethnicity were included as a single variable with categories of Hispanic, non-Hispanic Black, non-Hispanic White, other (Asian and multiracial, combined because of low numbers), and unknown according to hospital report. Child Opportunity Index quintile ranged from very low (lowest quintile) to very high (highest quintile).

The primary outcome was length of stay measured in number of days from admission to discharge. The χ2 analysis was used to examine unadjusted associations between categorical variables, and Wilcoxon rank-sum test was used for continuous variables.

A total of 2267 children with neonatal short bowel syndrome with intestinal failure were identified (997 female [44%]; 410 Hispanic [18%]; 481 non-Hispanic Black [21%]; 690 non-Hispanic White [30%]; 231 other [10%]; 455 unknown [20%]), with 629 (28%) living in areas with very low Child Opportunity Index. The median (IQR) length of stay for the initial admission was 150 (112-200) days, with a median (IQR) cost of $528 628 ($374 040-$766 446). In multivariable analysis, non-Hispanic Black children remained in the hospital for 16 days longer than their non-Hispanic White counterparts (95% CI, 7-25 days; P < .001). Child Opportunity Index was not significantly associated with length of stay when controlling for race and ethnicity.

In this cross-sectional study, children with neonatal short bowel syndrome with intestinal failure experienced long initial hospital stays, incurring high costs, with non-Hispanic Black children disproportionately affected. Interventions targeting safe and efficient transition to home are needed to address both efficacy and equity for these children.