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

国家EPICure研究关注的是极早产（EP）婴儿的长期结局。在这些妊娠期出生的婴儿只占总出生人数的一小部分，但在新生儿期消耗了很大比例的资源，许多婴儿需要10周或更长时间的特别护理。媒体经常突出报道有缺陷和残疾的幸存者比例很高的问题。死亡风险高或结果受损往往被用作不为这些儿童提供积极支持的理由。在2006年，我们招募了EPICure 2队列的出生<27周的妊娠（14周或更长时间前正常的“足月”），并证明了在24和25周的无损伤生存率比我们在1995年的第一项研究增加。有趣的是，我们还发现，在我们评估的那些婴儿中，3岁时患有中度至重度脑瘫的婴儿较少，发育评分较高。在这种情况下，我们只设法评估了1000名幸存者中的一半多一点，对于这一组的结局改善的真实程度仍然存在一些疑问。因此，我们建议在这些人大约11岁时（初中最高年级）对他们进行进一步评估。我们之所以选择这个年龄段，是因为在这个年龄段，我们可以比早期年龄段更详细地调查学习和行为的细节，并获得有关EP儿童所面临的潜在问题的新信息;此外，这些发现更有可能预测整个青春期的最终进展，最后，我们还检查了1995年11岁和19岁的队列，因此，可以比较结果，并评估结果的预测价值。我们将通过两种方式评估人口：首先，我们将从国家学生数据库中获取所有EPICure 2出生的信息，该数据库包含11岁（及以上）的学校教育信息。这将使我们能够评估绝大多数同龄人的成绩，并为我们提供有关他们的学校进度，特殊教育支持需求等的明确信息。其次，我们将研究两个地区（北伦敦和东米德兰兹）的EPICure 2儿童，为我们提供一个基于学校的评估，与我们之前使用的强大方法相比，这些儿童所面临的学习和思考问题的详细结果。我们还将直接测试他们的呼吸和血管功能，并通过问卷调查和访谈来评估他们的行为。这将使我们能够了解与1995年的出生情况相比，我们预期的结果改善在哪里，并使我们能够对未来做出预测。我们还将采访父母，以了解他们对EP分娩问题的看法，因此，这项研究将为极早产儿的父母提供有价值的信息，以了解他们未来可能面临的问题，它将帮助医生了解到2006年护理的进步如何改变这些长期结果，并将提供深入了解这些问题产生和解决的机制。

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.