Improving outcomes for very preterm babies in England: does place of birth matter? Findings from OPTI-PREM, a national cohort study.

Objective: Babies born between 27 and 31 weeks of gestation contribute substantially towards infant mortality and morbidity. In England, their care is delivered in maternity services colocated with highly specialised neonatal intensive care units (NICU) or less specialised local neonatal units (LNU). We investigated whether birth setting offered survival and/or morbidity advantages to inform National Health Service delivery.

Recommendations for data collection in cohort studies of preterm born individuals - The RECAP Preterm Core Dataset.

Background: Preterm birth (before 37 completed weeks of gestation) is associated with an increased risk of adverse health and developmental outcomes relative to birth at term. Existing guidelines for data collection in cohort studies of individuals born preterm are either limited in scope, have not been developed using formal consensus methodology, or did not involve a range of stakeholders in their development. Recommendations meeting these criteria would facilitate data pooling and harmonisation across studies.

Estimated neonatal survival of very preterm births across the care pathway: a UK cohort 2016-2020.

Objective: Currently used estimates of survival are nearly 10 years old and relate to only those babies admitted for neonatal care. Due to ongoing improvements in neonatal care, here we update estimates of survival for singleton and multiple births at 22 to 31 weeks gestational age across the perinatal care pathway by gestational age and birth weight.

Design: Retrospective analysis of routinely collected data.

Methods for Constructing Normalised Reference Scores: An Application for Assessing Child Development at 24 Months of Age.

The use of the lambda-mu-sigma (LMS) method for estimating centiles and producing reference ranges has received much interest in clinical practice, especially for assessing growth in childhood. However, this method may not be directly applicable where measures are based on a score calculated from question response categories that is bounded within finite intervals, for example, in psychometrics. In such cases, the main assumption of normality of the conditional distribution of the transformed response measurement is violated due to the presence of ceiling (and floor) effects, leading to biased fitted centiles when derived using the common LMS method.

Understanding ethnic inequalities in stillbirth rates: a UK population-based cohort study.

Objectives: To investigate inequalities in stillbirth rates by ethnicity to facilitate development of initiatives to target those at highest risk.

Design: Population-based perinatal mortality surveillance linked to national birth and death registration (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK).

Setting: UK.

Development of a data classification system for preterm birth cohort studies: the RECAP Preterm project.

Background: The small sample sizes available within many very preterm (VPT) longitudinal birth cohort studies mean that it is often necessary to combine and harmonise data from individual studies to increase statistical power, especially for studying rare outcomes. Curating and mapping data is a vital first step in the process of data harmonisation. To facilitate data mapping and harmonisation across VPT birth cohort studies, we developed a custom classification system as part of the Research on European Children and Adults born Preterm (RECAP Preterm) project in order to increase the scope and generalisability of research and the evaluation of outcomes across the lifespan for individuals born VPT.

EPICE cohort: two-year neurodevelopmental outcomes after very preterm birth.

Objective: To determine whether the variation in neurodevelopmental disability rates between populations persists after adjustment for demographic, maternal and infant characteristics for an international very preterm (VPT) birth cohort using a standardised approach to neurodevelopmental assessment at 2 years of age.

Design: Prospective standardised cohort study.

Setting: 15 regions in 10 European countries.

Optimising neonatal service provision for preterm babies born between 27 and 31 weeks gestation in England (OPTI-PREM), using national data, qualitative research and economic analysis: a study protocol.

Introduction: In England, for babies born at 23-26 weeks gestation, care in a neonatal intensive care unit (NICU) as opposed to a local neonatal unit (LNU) improves survival to discharge. This evidence is shaping neonatal health services. In contrast, there is no evidence to guide location of care for the next most vulnerable group (born at 27-31 weeks gestation) whose care is currently spread between 45 NICU and 84 LNU in England.

Standardisation of the Parent Report of Children's Abilities-Revised (PARCA-R): a norm-referenced assessment of cognitive and language development at age 2 years.

Background: The Parent Report of Children's Abilities-Revised (PARCA-R) can be used to identify preterm born children at risk for developmental delay at age 24 months. However, standardised scores for assessing all children in the general population and quantifying development relative to the norm are unavailable, thus limiting the use of the questionnaire. We aimed to develop scores that are standardised by age and sex for the PARCA-R to assess children's cognitive and language development at age 24-27 months.

Assessing the deprivation gap in stillbirths and neonatal deaths by cause of death: a national population-based study.

Objective: To investigate socioeconomic inequalities in cause-specific stillbirth and neonatal mortality to identify key areas of focus for future intervention strategies to achieve government ambitions to reduce mortality rates.

Design: Retrospective cohort study.

Setting: England, Wales, Scotland and the UK Crown Dependencies.

Estimating neonatal length of stay for babies born very preterm.

Objective: To predict length of stay in neonatal care for all admissions of very preterm singleton babies.

Setting: All neonatal units in England.

Patients: Singleton babies born at 24-31 weeks gestational age from 2011 to 2014.

Wide variation in severe neonatal morbidity among very preterm infants in European regions.

Objective: To investigate the variation in severe neonatal morbidity among very preterm (VPT) infants across European regions and whether morbidity rates are higher in regions with low compared with high mortality rates.

Design: Area-based cohort study of all births before 32 weeks of gestational age.

Setting: 16 regions in 11 European countries in 2011/2012.

Differentiating the Preterm Phenotype: Distinct Profiles of Cognitive and Behavioral Development Following Late and Moderately Preterm Birth.

Objectives: To explore patterns of comorbidity in cognitive and behavioral outcomes at 2 years' corrected age among children born late or moderately preterm (LMPT) and to identify predictors of different patterns of comorbidity.

Study Design: Geographical, prospective population-based cohort study of 1139 infants born LMPT (32 to 36 weeks' gestation) and 1255 infants born at term (37 to 42 weeks' gestation). Parent questionnaires were obtained to identify impaired cognitive and language development, behavioral problems, delayed social-emotional competence, autistic features, and clinically significant eating difficulties at 24 months corrected age for 638 (57%) children born LMPT and 765 (62%) children born at term.

Updated birth weight centiles for England and Wales.

Objectives: Construct updated birth weight-for-gestational age centile charts for use in the UK and compare these to the currently used UK-WHO charts.

Design: Secondary analysis of national birth data.

Participants: Centiles were constructed using 1 269 403 singleton births occurring in England and Wales in 2013-2014 as part of the MBRRACE-UK national perinatal surveillance programme.

Variability in Very Preterm Stillbirth and In-Hospital Mortality Across Europe.

Background And Objective: Stillbirth and in-hospital mortality rates associated with very preterm births (VPT) vary widely across Europe. International comparisons are complicated by a lack of standardized data collection and differences in definitions, registration, and reporting. This study aims to determine what proportion of the variation in stillbirth and in-hospital VPT mortality rates persists after adjusting for population demographics, case-mix, and timing of death.

Variability in the management and outcomes of extremely preterm births across five European countries: a population-based cohort study.

Objective: To explore international variations in the management and survival of extremely low gestational age and birthweight births.

Design: Area-based prospective cohort of births SETTING: 12 regions across Belgium, France, Italy, Portugal and the UK PARTICIPANTS: 1449 live births and fetal deaths between 22 and 25 weeks gestation born in 2011-2012.

Main Outcome Measures: Percentage of births; recorded live born; provided antenatal steroids or respiratory support; surviving to discharge (with/without severe morbidities).

Causes and temporal changes in nationally collected stillbirth audit data in high-resource settings.

Few high-income countries have an active national programme of stillbirth audit. From the three national programmes identified (UK, New Zealand, and the Netherlands) steady declines in annual stillbirth rates have been observed over the audit period between 1993 and 2014. Unexplained stillbirth remains the largest group in the classification of stillbirths, with a decline in intrapartum-related stillbirths, which could represent improvements in intrapartum care.

What factors predict length of stay in a neonatal unit: a systematic review.

Objective: In the UK, 1 in 10 babies require specialist neonatal care. This care can last from hours to months depending on the need of the baby. The increasing survival of very preterm babies has increased neonatal care resource use.

Modelling Neonatal Care Pathways for Babies Born Preterm: An Application of Multistate Modelling.

Modelling length of stay in neonatal care is vital to inform service planning and the counselling of parents. Preterm babies, at the highest risk of mortality, can have long stays in neonatal care and require high resource use. Previous work has incorporated babies that die into length of stay estimates, but this still overlooks the levels of care required during their stay.

Use of evidence based practices to improve survival without severe morbidity for very preterm infants: results from the EPICE population based cohort.

Objectives:  To evaluate the implementation of four high evidence practices for the care of very preterm infants to assess their use and impact in routine clinical practice and whether they constitute a driver for reducing mortality and neonatal morbidity.

Design:  Prospective multinational population based observational study.

Setting:  19 regions from 11 European countries covering 850 000 annual births participating in the EPICE (Effective Perinatal Intensive Care in Europe for very preterm births) project.

Correcting for prematurity affects developmental test scores in infants born late and moderately preterm.

Background: Corrected age is typically applied when assessing the development of children born <32 weeks of gestation. There is no consensus as to whether corrected age should be applied when assessing children born late/moderately preterm (LMPT; 32-36 weeks of gestation).

Aims: This study explored the impact of corrected age on developmental test scores in infants born LMPT.