EPICure2@11 - Outcome at 11 years for a national cohort of births between 22 and 26 weeks of gestation in England in 2006

The national EPICure studies are concerned with the long term outcomes of babies who are born at extremely premature (EP) gestations. Births at these gestations form only a small proportion of total births but they consume a high proportion of resources in the newborn period, many needing 10 weeks or more intensive care. The high proportion of survivors with impairments and disabilities is often highlighted in the press. The high risk of death or an impaired outcome is often used as a reason for not providing active support for these children. In 2006 we recruited the EPICure2 cohort of births <27 weeks of gestation (14 weeks or more before normal 'full term') and demonstrated increased survival without impairment at 24 and 25 weeks over our first study in 1995. Intriguingly we also found less infants at 3 years with moderate to severe cerebral palsy and higher developmental scores in those we assessed. In the event we only managed to evaluate just over half of the 1000 survivors and some doubt remains as to the true size of improvement in outcomes for this group. We therefore propose to carry out a further assessment on this population when they are around 11 years of age (in the top year of junior school). We have chosen this age because at this age we can investigate the detail of learning and behaviour in more detail than at earlier ages and obtain novel information about the underlying problems faced by EP children; furthermore, the findings are more likely to be predictive of eventual progress across adolescence, and finally we also examined the 1995 cohort at 11 years and 19 years, so the results can be compared and the predictive value of the findings assessed. We will assess the population in two ways: Firstly, we will obtain information on all EPICure2 births from the national pupil database, which carries information on the school attainment up to 11 years (and beyond). This will allow us to evaluate the attainment great majority of the cohort and give us clear information on their school progress, need for special educational support, etc. It will provide unique information rapidly but will be anonymised as we do not have permission from all parents; thus it will only be able to tell us broad outcomes. Secondly, we will examine EPICure2 children in two areas (North London and East Midlands) to provide us with a school based assessment of the detailed outcome of the learning and thinking issues faced by these children compared to a group of their classmates using robust methodology, as we have before. We will also test their breathing and blood vessel function directly and, using questionnaires and an interview, evaluate their behaviour. This will allow us to understand where the improvements in outcomes have occurred that we expect, compared to those in the 1995 births, and allow us to make predictions for the future. We will also interview parents to gain their perspective on the problems of EP birth, This study will thus provide information of value to parents of extremely premature children as to the problems they may face in the future, it will help doctors understand how the advances in care up to 2006 have changed these long term outcomes and it will provide insights into the mechanisms by which these problems arise and may be tackled.