Long term health outcomes for women and their children after assisted reproductive technologies: a data linkage study for England

点击翻译按钮获取中文摘要

Infertility affects 1 in 7 couples, and the number of babies using Assisted Reproductive Technologies (ART) such as IVF is increasing. Since 1991 over 200,000 children have been born in the UK as a result of ART, which now accounts for about 1-2% of births each year. Most IVF births result in healthy children, but there is good evidence that IVF pregnancies are at higher risk of poor perinatal outcomes (prematurity, low birth weight, a higher incidence of caesarean section), congenital malformations and some rare epigenetic syndromes. Cognitive, developmental and behavioural problems have also been identified, though the evidence is limited and findings are less convincing - in part, because studies in this area are difficult to conduct and sometimes flawed. Higher rates of other adverse outcomes, such as asthma and autism, have also been reported but, again, the evidence is sparse. Studies of health and developmental outcomes of children born after ART tend to focus only on early childhood, so that the long term health and development of ART children is still relatively under-researched. There are also well-recognised risks to the woman at the time of ART treatment, and the negative impact of unsuccessful treatment on women and their partners has been documented. However, when treatment is successful the longer-term implications for the mother are often overlooked. The difficulty of becoming pregnant, perceived high-risk pregnancies and anxiety about birth can all have a lasting impact. The incidence of postnatal depression is higher after ART, and sufferers appear to be more vulnerable to later depressive episodes. Fears about increased cancer risks in women who have undergone treatment appear unfounded, but there remain unanswered questions regarding long-term impacts of ART on maternal physical and mental health, and use of health services. This research seeks to address these issues, and provide evidence for the health and wellbeing of ART mothers and their children in the longer term. The project uses data that is collected by infertility clinics (on behalf of the Human Fertilisation and Embryology Authority) on all ART treatments in the UK since 1991, and links it to GP medical records for the women and their children held in the Clinical Practice Research Datalink mother-baby dataset. It is anticipated that over 280,000 mother-baby pairs will be included, of whom about 4,000 will have been born after ART. The oldest children will have been followed up for over 20 years. We will be exploring the health of children and their mothers using information that is recorded by the doctor or nurse practitioner when they visit their doctor's surgery, such as diagnoses of medical conditions, prescriptions for medication and referrals for specialist treatment. The increased use of health services, if any, among ART mother-baby pairs will also be assessed. Currently the HFEA seeks consent from all couples undergoing ART to allow scientists to use their data in research, but less than half agree. Another aspect of this project will be to assess the effect of this low participation rate on the results of research using the HFEA data, and to explore ways that the effects of missing data can be reduced or removed. These projects all use routine data, but we will also be conducting a study that recruits couples undergoing treatment and explores why they choose to give, or to refuse, consent for research. The aim of this part of the study is to provide information to try and help increase consent rates in the future. The research will be led by Claire Carson, an epidemiologist at the National Perinatal Epidemiology Unit, University of Oxford, who will be working with specialists in perinatal and maternal epidemiology (Jennifer Kurinczuk, Maria Quigley, Alistair Sutcliffe), qualitative research methods (Lisa Hinton), health economics (Oliver Riviera-Arias) and the management of missing data (Mike Kenward).