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

一个典型的怀孕持续大约40周，在怀孕37周之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，而那些存活下来的婴儿在童年和成年期更有可能出现健康和发育问题。出生早的孩子也更有可能有特殊的教育需求，或者在学校考试中表现不如他们的同学。最近的研究表明，即使是那些提前几周出生的婴儿，在童年时期也可能比那些足月怀孕后出生的婴儿有更多的问题。对早产长期影响的研究需要包括大量儿童（至少10万）。也有类似规模的研究，但他们的发现可能与今天出生的孩子无关。例如，它们是基于出生在20世纪60年代至90年代的孩子，他们经历了与今天出生的婴儿不同的新生儿护理。此外，大多数研究都是基于斯堪的纳维亚或美国的儿童，他们将经历与英国儿童不同的健康和教育体系。有必要在英国进行一项大型研究，以评估21世纪出生的婴儿中与早产有关的健康和教育成果和成本。目的和目标我们的目的是对2005- 2006年在英格兰出生的儿童进行一项研究，并利用它来调查早产儿童与足月妊娠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是否对生活贫困或社会弱势的儿童有更大的影响。我们还将衡量早产对保健和教育服务造成的损失。方法该研究将包括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这些孩子进行随访。我们将设法获得儿童在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成绩。学校的成绩也将表明孩子是否有特殊的教育需要，以及给予什么样的支持。这些信息将使我们了解每个孩子的健康状况和学习成绩，并使我们能够了解早产对这些状况的影响程度。将成立两个小组对该项目提出建议。一个小组将包括相关专家、利益攸关方（例如“过早、太小、病得太重的婴儿BLISS”支持小组），并将包括受早产影响的家庭代表。另一组将提供用户对项目所有方面的看法。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有关的专业人士。研究结果将告知教师和其他教育专业人员，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向父母提供有关可能出现的问题类型的咨询，这将使他们对可能发生的情况和何时寻求专业人士的帮助有更充分的准备。我们关于早产相关成本的研究结果将有助于在医院、学校或社区规划或提供服务的组织。它们还将有助于确保查明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链接研究的研究人员创建一个资源，该资源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.