Abstract

Background Since mortality in congenital diaphragmatic hernia (CDH) is decreasing, morbidity such as neurodevelopmental delay receives increased attention. We evaluated neurodevelopmental outcome in high-risk CDH patients treated according to the Euroconsortium standardised neonatal treatment protocol (Reiss, 2010). Methods Observational, prospective cohort study in CDH patients treated in two level-III university hospitals (Rotterdam (ECMO available) and Rome (no ECMO available)) between January 2009–April 2011. Sixty-three patients underwent standardised neurodevelopmental assessment at corrected age of 12 and 24 months by using Bayley Scales of Infant Development (BSID)-II-NL (Rotterdam; Dutch reference data) or BSID-III (Rome; US reference data). Both centres were analysed separately due to differences in assessment instruments. Results are presented as n (%), mean (SD) or median (range). Results Mortality was 24.1% and 20.5% in Rotterdam and Rome, respectively. Baseline characteristics were for Rotterdam (n = 36)/Rome (n = 27): observed to expected lung-to-head ratio 53.8% (19.1)/55.4% (15.8), p = 0.67; SNAP-II score (19 (0–40)/7 (0–25), p Conclusions At two years, the majority of CDH patients have normal cognition, but they are at risk for motor function delay. Future multicenter collaboration should focus on continuation of standardisation of treatment and follow-up to identify risk factors and reduce morbidity.

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