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Understanding excess child and adolescent mortality in the United Kingdom compared with EU15+ countries
The rate at which children and young people (CYP) die in the UK is higher than in many other developed countries. I will investigate why this occurs, and thus inform policies to improve UK child survival. In the 1970s UK child mortality rates (the number of child deaths per 100,00 population) were similar to those in comparable wealthy nations, and in many areas the UK performed well. Although UK child mortality has been falling since then, the rate of decline has been slower than in other countries, and the UK now has one of the highest child mortality rates in Europe. If the UK had a mortality rate similar to Sweden, about 2000 fewer children would die each year. I will establish an up to date picture of CYP mortality compared with similar wealthy nations, and then identify which causes of death and age groups show the greatest difference. My project will concentrate on causes of death after the newborn period, where the UK performs poorly but about which little is known. Previous studies have shown that many outcomes (including mortality) for long-term conditions (also known as non-communicable diseases (NCDs)) such as asthma, diabetes and cancer, are worse in the UK than other wealthy nations. I will look at these causes of death in much greater detail than has been done previously, to identify which causes contribute to the high rates of child mortality in the UK. Because many of these conditions affect teenagers and young adults, the project will focus on deaths in young people to age 24 years as well as in younger children. I will examine where in the UK children are more likely to die and whether some of the high child death rates are due to high levels of poverty, social exclusion, and other markers of deprivation known to affect child health. Finally, I will look at trends in health service use, and specifically within conditions where the UK performs poorly internationally. I will explore whether access to and use of outpatient clinics, attendances to Accident and Emergency, and rates of missed appointments prior to death, and the way these vary across England, may be related to greater risk of dying. Use of health data for this project I will request to use personal data which have been collected without consent on attendances to hospital in CYP in England from 2007 - 2018. These data are collected so that hospitals receive the right funding for services they provide. The categories of personal data requested from NHS digital will include information about health (the reason for admission), and socio-demographic data including age, sex, ethnicity and usual place of residence (lower super output area). None of the data requested from NHS digital, or results from this study, will be identifiable. I will hold these data securely within UCL for 5 years for this research. Using these data will help to understand why children and young people have a higher risk of dying in the UK than in other rich countries. The legal basis for the use of this data is that this is a task in the public interest. If parents and anyone over the age of 13 do not wish their health data to be made available for any non-clinical uses for similar projects in the future, they are able to request this via https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/. UCL is the sponsor for this study and will act as the data controller responsible for looking after the personal data needed for this research. The rights of CYP/parents to access, change, or move these data are limited as we need to manage the information in specific ways in order to conduct the research. To safeguard the rights of CYP and parents in this study, we will use the minimum amount of personally identifiable information as possible. Further information on UCL data protection and privacy policies are available here https://www.ucl.ac.uk/legal-services/privacy
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