Congenital diaphragmatic hernia outcomes: navigating center-to-center variability in level 4 NICUs in the Children’s Hospitals Neonatal Consortium

BACKGROUND: This study examined inter-center variation (ICV) in inpatient outcomes for infants with congenital diaphragmatic hernia (CDH), aiming to contribute to quality metrics and clinical benchmarks in neonatal care.

METHODS: We retrospectively analyzed CDH cases from the Children's Hospitals Neonatal Consortium (CHNC) database (2010-2022), focusing on infants without prior surgical repair or discharge. Our outcomes of interest included inpatient survival, survival without ECMO, and hospital length of stay (LOS). We incorporated centers with ≥30 cases into multivariable models to adjust for patient and clinical factors.

RESULTS: Analysis of 3639 infants revealed significant ICV. Unadjusted inpatient survival rate was 76.5%, with ICV ranging from 55.4% to 90.7%. The composite outcome of survival without ECMO was 63.3% (ICV: 38.6-87.9%). The median LOS for survivors was 50 days (ICV: 29-68 days). Multivariable analyses confirmed these trends, indicating an 18-fold variation in survival, a 35-fold variation in survival without ECMO, and a 3.3-fold variation in LOS across centers (p < 0.001 for all).

CONCLUSION: The treating center was a significant predictor of risk-adjusted inpatient outcomes for infants with CDH. These findings highlight substantial disparities in care and support the integration of these metrics into future research and quality improvement efforts in level IV NICUs.

IMPACT STATEMENT: This study reveals considerable inter-center differences in CDH outcomes, contributing extensive, multicenter data to the existing body of literature. It underscores how center-specific practices affect survival and ECMO use, suggesting that organized high-level care could enhance outcomes for CDH patients. These insights lay the groundwork for center-specific quality improvement initiatives to elevate the standard of care.