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

EPICure是一项在英国和爱尔兰出生的处于临界生存能力（妊娠25周或以下）的婴儿的人群研究。存活的儿童被评估为2.5岁和6岁。只有26%的活产婴儿能够存活回家，其中四分之一的人有严重的残疾;整个队列的认知得分比他们的同学低25分，许多人有胸部问题。该申请包括EPICure队列的评估，重点是进入青春期后10年的心理、精神和呼吸状态。重要的是，这一独特的队列是通过青少年到成年生活更好地了解他们的问题，既规划适当的服务，以支持他们的持续需求，并告知那些照顾妇女和新生儿今天的重要长期问题，他们可能面临的。有些人质疑使用1995年EPICure数据对目前在我们托儿所的婴儿进行统计的有效性，但我们相信，虽然存活率可能略有增加，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2006年在英格兰出生的25周或更少的婴儿的新队列。出生前后的数据收集将比1995年更详细，以便我们可以评估不同产科并发症，医疗干预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，一个需要经常进行重症监护的年龄。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期呼吸问题的机制，我们将在2.5岁时对所有儿童进行全面评估。如果像我们预期的那样，残疾率没有改变，这将证实继续随访1995年队列的相关性，这些信息将有助于父母和专业人员共同决策，并为公众辩论提供关于在临界生存能力下提供重症监护的伦理和经济学信息。

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.