Objective

The aim of this study was to investigate variations in mortality before neonatal intensive care unit (NICU) discharge of infants born preterm with intraparenchymal haemorrhage (IPH) in Europe with a special interest for withdrawing life-sustaining therapy (WLST).

Design

Secondary analysis of the Effective Perinatal Intensive Care in Europe (EPICE) cohort, 2011-2012.

Setting

Nineteen regions in 11 European countries.

Patients

All infants born between 24⁺⁰ and 31⁺⁶ weeks' gestational age (GA) with a diagnosis of IPH.

Main outcome measures

Mortality rate with multivariable analysis after adjustment for GA, antenatal steroids and gender. WLST policies were described among NICUs and within countries.

Results

Among 6828 infants born alive between 24⁺⁰ and 31⁺⁶ weeks' GA and without congenital anomalies admitted to NICUs, IPH was diagnosed in 234 infants (3.4%, 95% CI 3.3% to 3.9%) and 138 of them (59%) died. The median age at death was 6 days (3-13). Mortality rates varied significantly between countries (extremes: 30%-81%; p<0.004) and most infants (69%) died after WLST. After adjustment and with reference to the UK, mortality rates were significantly higher for France, Denmark and the Netherlands, with ORs of 8.8 (95% CI 3.3 to 23.6), 5.9 (95% CI 1.6 to 21.4) and 4.8 (95% CI 1.1 to 8.9). There were variations in WLST between European regions and countries.

Conclusion

In infants with IPH, rates of death before discharge and death after WLST varied between European countries. These variations in mortality impede studying reliable outcomes in infants with IPH across European countries and encourage reflection of clinical practices of WLST across European units.