Cohort Profile: Effective Perinatal Intensive Care in Europe (EPICE) very preterm birth cohort

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The Effective Perinatal Intensive Care in Europe (EPICE) cohort includes all births between 22 + 0 and 31 + 6 weeks of gestation in 2011/12 in 19 regions in 11 European countries. This cohort was set up to investigate the use of evidence-based interventions for prenatal and postnatal care of infants born very preterm (VPT) and to explore the associations between evidence-based care and their health and developmental outcomes. The first phase, ‘Effective perinatal intensive care in Europe’ (EPICE) focused on obstetric and neonatal care before and around the time of birth and during the neonatal hospitalization period, with follow-up at 2 years of corrected age (CA), while a second phase, ‘Screening for Health in Infants born very Preterm’ (SHIPS), assessed follow-up care provided in the first 5 years of life and neurodevelopmental outcomes at 5 years of age. Both phases were funded by the European Union [Seventh Framework Programme (FP7/2007–2013, No 259882; Horizon 2020 Research and Innovation Programme, No 633724]. Both phases are based on the premise that survival, neurodevelopmental outcome and health-related quality of life can be improved for children born VPT by promoting the use of evidence-based health care. Improving these outcomes is important as VPT birth, occurring in about 1–2% of births, constitutes one of the principal determinants of infant mortality and morbidity, accounting for up to 75% of neonatal deaths in 2015.1 Further, despite significant medical advances in survival over recent decades, after discharge from the neonatal intensive care unit (NICU), survivors of VPT birth remain at high risk of neurodevelopmental impairment, including cerebral palsy, cognitive impairment, visual and auditory deficits and behavioural problems. Several recent studies have found that rates of impairments are not decreasing over time.2,3 Countries in the European Union provide fertile ground for research comparing the care and outcomes of these babies. Despite having high national incomes, universal insurance or health coverage for pregnant women and newborns and widespread access to medical knowledge and care, >2-fold disparities exist in risk-adjusted VPT mortality and morbidity.4,5 These differences, which are also observed outside of Europe,6–8 strongly suggest that some of the variation in outcome relates to differences in obstetric and neonatal practices. This claim is supported by research within individual countries showing that practices in many obstetric and neonatal units are not based on the latest scientific evidence.9–15 The perinatal period is paramount for VPT infants, as care quality during this period impacts strongly on mortality and severe morbidity, but high-quality post-discharge care is also essential for infant and child development.16,17 Long-term adverse outcomes are related to neonatal morbidities, including brain lesions and respiratory morbidity and risks are higher with decreasing gestational age.18–20 However, prediction of outcomes is difficult and children with no identified neonatal morbidity may experience moderate or severe impairments and, conversely, children with neonatal morbidities may develop normally.21,22 Consequently, follow-up programmes aim to identify health problems early, enable interventions to improve outcome and to allow optimal management and coordination of health care. Despite the recognised importance of these programmes, little is known about their actual application and impact. As with perinatal care, there is a hypothesized wide variation in approaches to providing follow-up in Europe. The EPICE cohort is a geographically defined study of stillbirths and live births from 22 + 0 to 31 + 6 weeks of gestation in 19 European regions (Fig. 1). Regions were selected with respect to geographic and organizational diversity and feasibility, meaning they had systems for collecting population data on VPT babies that could be modified to integrate the study protocol. In France, the EPICE study includes three regions of the national EPIPAGE 2 cohort study.23 Participating regions started data collection between March and July 2011 and the inclusion period lasted 12 months, except in France where it was 6 months. The study also collected information from the hospitals where these children were born and hospitalized. Questionnaires were sent to neonatal units with at least 10 VPT admissions and their associated maternity units in the spring of 2012. Regions included in the EPICE/SHIPS cohort: Flanders in Belgium; the Eastern Region of Denmark; Estonia (entire country); Burgundy, Ile-de-France and the Northern regions in France; Hesse and Saarland in Germany; Emilia- Romagna, Lazio and Marche regions in Italy; the Central and Eastern regions of The Netherlands; Wielkopolska in Poland; the Lisbon and Northern regions of Portugal; and the East Midlands, Northern and Yorkshire and Humber regions in the UK; and the Stockholm region in Sweden. Regions included in the EPICE/SHIPS cohort: Flanders in Belgium; the Eastern Region of Denmark; Estonia (entire country); Burgundy, Ile-de-France and the Northern regions in France; Hesse and Saarland in Germany; Emilia- Romagna, Lazio and Marche regions in Italy; the Central and Eastern regions of The Netherlands; Wielkopolska in Poland; the Lisbon and Northern regions of Portugal; and the East Midlands, Northern and Yorkshire and Humber regions in the UK; and the Stockholm region in Sweden. Investigators abstracted data from medical records in obstetric and neonatal units for all births with a gestational age between 22 + 0 and 31 + 6 weeks. Gestational age was defined as the best obstetric assessment based on information on last menstrual period and antenatal ultrasounds, which are part of routine obstetric care in all regions. Inclusions were cross-checked against delivery ward registers or another external data source. During the study period, 10 329 VPT births were included out of 743 641 total births, of which 815 were terminations of pregnancy and 9514 VPT stillbirths or live births (Fig. 2). Because the number of terminations reflect screening policies for congenital anomalies which differ greatly between countries,24 these are reported separately from calculations related to the baseline birth cohort. Inclusions in the EPICE very preterm birth cohort and maternity and neonatal unit study. Large units are neonatal units with ≥10 very preterm admissions per year and associated maternity units. Inclusions in the EPICE very preterm birth cohort and maternity and neonatal unit study. Large units are neonatal units with ≥10 very preterm admissions per year and associated maternity units. The VPT birth rate for live births and stillbirths was 1.3%. Of all the VPT births, 7900 were live born (83.0%) and 6792 survived to discharge (71.4%). Regions in participating countries had VPT birth rates ranging from 0.9 to 1.5% (Table 1). The percentage of live born infants ranged from 77.8 to 88.9% and survival after live birth from 79.1 to 92.2%. Of the whole cohort of births, including stillbirths, the percentage discharged alive ranged from 63.6 to 78.8%. There were 532 maternity hospitals and 270 neonatal units in the EPICE regions. Of the 134 maternity units eligible for the unit study, 91.8% (123) responded to the questionnaire; 99.3% of eligible neonatal units (134/135) responded. Table 2 provides unit information by country. Inclusions in the cohort and selection related to very preterm birth rates and very preterm stillbirths and in-hospital deaths; TOP, termination of pregnancy TOP, termination of pregnancy. Terminations could not be collected in Hesse, only terminations from Saarland are included. Inclusions over a 6 month period, so total births refer only to this period. 102 infants were not included because of parental refusals. Terminations could not be collected in Marche and Emilia, only terminations from Lazio are included. Two cases with no information on ou

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