Tracking the health, educational and economic impact of gestational age at birth: a longitudinal record linkage study (TIGAR)

背景典型的妊娠持续约40周，怀孕37周前出生的婴儿被归类为早产或早产。这些婴儿死亡的几率更高，那些存活下来的婴儿更有可能在童年和成年后出现健康和发育问题。早产的孩子也更有可能有特殊教育需求，或者在学校考试中表现不如同学。最近的研究表明，即使是那些提前几周出生的婴儿，也可能比那些足月怀孕后出生的婴儿在童年时期有更多的问题。关于早产的长期影响的研究需要包括大量儿童(至少10万人)。已经有过规模如此之大的研究，但他们的发现可能与今天出生的孩子无关。例如，它们是基于20世纪60年代至90年代出生的儿童，他们经历了与今天出生的婴儿不同的新生儿护理。此外，大多数研究基于斯堪的纳维亚或美国儿童，他们将经历与英国儿童不同的健康和教育系统。英国需要一项大型研究，以评估在21世纪出生的婴儿群体中与早产相关的健康和教育结果以及成本。目的和目标我们的目标是对2005-2006年在英格兰出生的儿童进行研究，并利用它来调查早产和足月怀孕后出生的儿童在健康和教育结果方面的差异。我们的分析将确定早产对生活在贫困中的儿童或处于社会不利地位的儿童的影响是否更大。我们还将衡量早产对健康和教育服务的成本。方法这项研究将包括2005-2006年间在英国出生的所有婴儿(约100万)，并将通过将不同的常规信息来源联系起来对儿童进行跟踪调查。我们将努力获得儿童在10岁之前的任何住院或门诊就诊数据，以及他们在5岁、7岁和11岁时进行的全国考试的学校成绩。学校的成绩也将表明孩子是否有特殊教育需要，以及给予了什么支持。这些信息将让我们了解每个孩子的健康和学业成绩，并使我们能够看到早产对此有多大影响。将成立两个小组就该项目提供建议。一个小组将包括相关专家、利益攸关方(例如，支持小组“为早产、太小、太病的婴儿祈福”)，并将包括受早产影响的家庭的代表。另一个小组将提供用户对该项目各个方面的看法。成员将包括受早产影响的家庭(例如，早产儿的父母和早产的年轻人)。潜在的应用和好处这项研究的结果将提供给相关的专业人员。结果将告知教师和其他教育专业人员关于早产儿童可能出现的问题类型，以及需要什么样的特殊教育需求支持。调查结果还将有助于就可能发生的问题类型向家长提供咨询，使他们能够更好地准备好期待什么，以及何时向专业人士寻求帮助。我们关于早产相关成本的结果将有助于在医院、学校或社区规划或提供服务的组织。他们还将帮助确保确定最需要帮助的儿童，并给予适当的支持。最后，我们将为正在进行类似记录关联研究的研究人员创建一个资源，其中将描述我们如何访问、链接和分析这些大型数据集。

BackgroundA typical pregnancy lasts about 40 weeks and babies born before 37 weeks of pregnancy are classified as premature or preterm. These babies have a higher chance of dying and those that survive are more likely to have health and developmental problems in childhood and adulthood. Children who are born early are also more likely to have special educational needs, or may not perform as well as their classmates in their school tests. Recent research suggests that even those babies who are born a few weeks early may have more problems in childhood compared with those who are born after a full term pregnancy.Studies of the long term impact of prematurity need to include a large number of children (at least 100,000). There have been studies as large as this, but their findings may not be relevant to children born today. For example, they are based on children born in the 1960s-90s who experienced different newborn care to babies born today. Also, most of the studies are based on Scandinavian or American children, who will have experienced different health and education systems to children in the UK.There is a need for a large UK study to assess the health and educational outcomes and costs, associated with preterm birth in a population of babies born in the 21st century.Aims and objectivesOur aim is to carry out a study on children born in England in 2005-6 and use it to investigate differences in health and education outcomes for children born early compared with those born after a full term pregnancy. Our analysis will determine whether being born early has a larger impact on children who are living in poverty or are socially disadvantaged. We will also measure the costs of prematurity to health and education services.MethodsThe study will include all babies born in England during 2005-2006 (about 1 million) and will follow-up the children through linking together different routine information sources. We will try to obtain data on any hospital admissions or outpatient visits that the children experience until the age of 10, and their school results from national tests which are performed when the children are 5, 7 and 11 years. The school results will also indicate whether the child has special educational needs and what support is given. This information will give us a picture of each child's health and school results, and will enable us to see how much this is affected by being born early. Two groups will be formed to advise on the project. One group will include relevant experts, stakeholders (e.g. the support group 'BLISS for babies born too soon, too small, too sick') and will include representatives of families affected by premature birth. Another group will provide a user's perspective on all aspects of the project. Members will include families affected by premature birth (e.g. parents of preterm children, and young adults who were born early). Potential applications and benefitsThe results of this study will be made available to the relevant professionals. The results will inform teachers and other education professionals about the type of problems that may occur in children who were born early and what kind of special educational needs support is needed. The results will also assist in counselling of parents about the types of problems that may occur, which will enable them to be more prepared about what to expect and when to seek help from professionals. Our results on the costs associated with prematurity will be helpful to organisations who plan or deliver services in hospital, schools or the community. They will also help ensure that the children who need the most help are identified and given appropriate support. Finally, we will create a resource for researchers who are doing similar record linkage studies, which will describe how we accessed, linked and analysed these large datasets.