EPICure: population-based studies of survival and later health status of infants of 25 weeks gestation or less

EPICure是一项针对英国和爱尔兰出生在边缘生存能力（怀孕25周或更少）的婴儿的人口研究。幸存儿童在2.5岁和6岁时进行评估。只有26%的活产婴儿存活回家，其中四分之一有严重的残疾；整个队列的认知得分比他们的同学低25个智商点，许多人有胸部问题。该应用程序包括对EPICure队列的心理、精神和呼吸状态的评估，重点关注他们进入青春期后的10年。重要的是，要对这一独特的群体进行跟踪，从青春期一直到成年，更好地了解他们的问题，既要计划适当的服务，以支持他们的持续需求，又要让今天照顾妇女和新生儿的人了解他们可能面临的重要长期问题。一些人质疑使用1995年EPICure数据来预测目前在我们托儿所的婴儿的有效性，但我们相信，虽然存活率可能会增加一点，但严重残疾儿童的比例不会改变。为了证明这一点，我们将招募一组2006年在英格兰出生的25周或更短的婴儿。关于分娩的数据收集将比1995年更加详细，以便我们能够评估不同的产科并发症、医疗干预措施和专业人员的态度对结果的影响，并将结果与妊娠26周的分娩进行比较，这一年龄通常提供重症监护。使用新的方法，我们将研究一些儿童的早期肺功能，以帮助我们了解导致后来呼吸问题的机制，我们将对所有儿童在2.5岁时进行全面评估。如果象我们预期的那样，残疾率没有改变，这将证实继续对1995年的队列采取后续行动的重要性。这些信息将有助于家长和专业人士共同决策，并告知公众关于在边缘生存能力下提供重症监护的伦理和经济问题的辩论。

EPICure is a population study of babies born at borderline viability (25 weeks of gestation or less) in the UK and Ireland. The surviving children have been assessed at 2.5 and 6 years. Only 26% of liveborn babies survived to go home and one in four of these have a significant disability; cognitive scores for the whole cohort are 25 IQ points below their classmates and many have chest problems. This application includes an assessment of the EPICure cohort focussing on psychological, psychiatric and respiratory status at 10 years as they enter adolescence. It is important that this unique cohort is followed through adolescence into adult life better to understand their problems, both to plan appropriate services to support their ongoing needs and to inform those caring for the women and newborn babies today of important long term problems that they may face. Some question the validity of using 1995 EPICure data to prognosticate for babies currently in our nurseries, but we believe that while survival might have increased a little, the proportion of children with severe disability will not have changed. To show this we will recruit a new cohort of babies born in England in 2006 at 25 weeks or less. The data collection around birth will be more detailed than in 1995 so that we can assess the impact on outcome of different obstetric complications, of medical interventions and the attitude of the professionals and compare outcome to births at 26 weeks of gestation, an age when intensive care is routinely provided. Using new methodology, we will study early lung function in a number of the children to help us understand the mechanisms leading to later respiratory problems and we will perform a full assessment of all the children at 2.5 years. If, as we anticipate, disability rates have not changed, this will confirm the relevance of continued follow-up of the 1995 cohort.This information will help parents and professionals in their joint decision making and inform public debate about the ethics and economics of providing intensive care at borderline viability.