Background:

Our aims were (1) to improve understanding of regional variation in early-life mortality rates and the UK’s poor performance in international comparisons; and (2) to identify the extent to which late and moderately preterm (LMPT) birth contributes to early childhood mortality and morbidity.

Objective:

To undertake a programme of linked population-based research studies to work towards reducing variations in infant mortality and morbidity rates.

Design:

Two interlinked streams: (1) a detailed analysis of national and regional data sets and (2) establishment of cohorts of LMPT babies and term-born control babies.

Setting:

Cohorts were drawn from the geographically defined areas of Leicestershire and Nottinghamshire, and analyses were carried out at the University of Leicester.

Data sources:

For stream 1, national data were obtained from four sources: the Office for National Statistics, NHS Numbers for Babies, Centre for Maternal and Child Enquiries and East Midlands and South Yorkshire Congenital Anomalies Register. For stream 2, prospective data were collected for 1130 LMPT babies and 1255 term-born control babies.

Main outcome measures:

Detailed analysis of stillbirth and early childhood mortality rates with a particular focus on factors leading to biased or unfair comparison; review of clinical, health economic and developmental outcomes over the first 2 years of life for LMPT and term-born babies.

Results:

The deprivation gap in neonatal mortality has widened over time, despite government efforts to reduce it. Stillbirth rates are twice as high in the most deprived as in the least deprived decile. Approximately 70% of all infant deaths are the result of either preterm birth or a major congenital abnormality, and these are heavily influenced by mothers’ exposure to deprivation. Births at < 24 weeks’ gestation constitute only 1% of all births, but account for 20% of infant mortality. Classification of birth status for these babies varies widely across England. Risk of LMPT birth is greatest in the most deprived groups within society. Compared with term-born peers, LMPT babies are at an increased risk of neonatal morbidity, neonatal unit admission and poorer long-term health and developmental outcomes. Cognitive and socioemotional development problems confer the greatest long-term burden, with the risk being amplified by socioeconomic factors. During the first 24 months of life each child born LMPT generates approximately £3500 of additional health and societal costs.

Conclusions:

Health professionals should be cautious in reviewing unadjusted early-life mortality rates, particularly when these relate to individual trusts. When more sophisticated analysis is not possible, babies of < 24 weeks’ gestation should be excluded. Neonatal services should review the care they offer to babies born LMPT to ensure that it is appropriate to their needs. The risk of adverse outcome is low in LMPT children. However, the risk appears higher for some types of antenatal problems and when the mother is from a deprived background.

Future work:

Future work could include studies to improve our understanding of how deprivation increases the risk of mortality and morbidity in early life and investigation of longer-term outcomes and interventions in at-risk LMPT infants to improve future attainment.

Funding:

The National Institute for Health Research Programme Grants for Applied Research programme.

Article history

The research reported in this issue of the journal was funded by PGfAR as project number RP-PG-0407-10029. The contractual start date was in July 2008. The final report began editorial review in December 2013 and was accepted for publication in March 2015. As the funder, the PGfAR programme agreed the research questions and study designs in advance with the investigators. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The PGfAR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.

Declared competing interests of authors

Neil Marlow reports personal fees from Novartis (Basel, Switzerland), Shire plc (Dublin, Ireland) and GlaxoSmithKline plc (Middlesex, UK), outside the submitted work.