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研究关注在极早产(EP)妊娠时出生的婴儿的长期结果。在这些孕期出生的婴儿只占总出生婴儿的一小部分，但它们在新生儿期消耗了很大比例的资源，许多需要10周或更长时间的重症监护。有残障和残疾的幸存者比例很高，这一点经常在媒体上得到强调。死亡风险高或结局受损往往被用作不向这些儿童提供积极支持的理由。2006年，我们招募了EPICure2出生和怀孕27周的队列(正常足月前14周或更长时间)，并证明与1995年的第一项研究相比，24周和25周的存活率增加而没有损伤。有趣的是，我们还发现，在我们评估的婴儿中，3岁时患有中度至重度脑瘫的婴儿较少，而发育评分较高。结果，我们只评估了1000名幸存者中略多于一半的人，对这一群体的结果改善的真实程度仍有一些怀疑。因此，我们建议在这些人口大约11岁时(在初中高年级)对他们进行进一步评估。我们之所以选择这个年龄，是因为在这个年龄，我们可以比更早的年龄更详细地调查学习和行为的细节，并获得关于EP儿童面临的潜在问题的新信息；此外，这些发现更有可能预测青春期的最终进展，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得所有EPICure2出生人口的信息，该数据库包含最高11年(及以上)的学校成绩信息。这将使我们能够评估该队列中绝大多数人的成绩，并为我们提供关于他们在学校的进步、对特殊教育支持的需求等的明确信息。它将迅速提供独特的信息，但由于我们没有得到所有家长的许可，它将被匿名；因此，它将只能告诉我们广泛的结果。其次，我们将检查两个地区(伦敦北部和东米德兰兹郡)的EPICure2儿童，为我们提供基于学校的评估，与他们的一组同学相比，这些儿童面临的学习和思维问题的详细结果，就像我们之前所做的那样。我们还将直接测试他们的呼吸和血管功能，并通过问卷和访谈评估他们的行为。这将使我们能够了解与1995年出生的婴儿相比，我们预期的结局在哪里发生了改善，并使我们能够对未来做出预测。我们还将采访父母，以了解他们对早产儿出生问题的看法，因此，这项研究将为极早产儿的父母提供关于他们未来可能面临的问题的有价值的信息，它将帮助医生了解截至2006年的护理进步如何改变这些长期结果，并将为这些问题产生和可能解决的机制提供洞察力。

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.