Understanding excess child and adolescent mortality in the United Kingdom compared with EU15+ countries

The rate at which children die in the United Kingdom 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. However, 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 (the best performing country), about 2000 fewer children would die each year, or 5 fewer a day.

I will establish an up to date picture of child mortality compared with similar wealthy nations, and then investigate where the UK performs badly - i.e. identify which causes of death and age groups show the greatest difference. The comparator group I will use is the EU15+ - meaning the countries of the EU before 2004 plus Canada, Australia and Norway. Previous studies have shown a high risk of dying around the time of birth in the UK, which has been explained by high rates of early delivery and low birth weights. My project will concentrate on causes of death after the newborn period, where the UK also 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 also examine where in the UK children are more likely to die. I will examine whether some of the high child death rates are due to high levels of poverty, social exclusion, and other markers of deprivation which are known to affect child health. Previous research has shown that poverty in the UK is more concentrated among children than adults, in contrast to other European countries, and I will explore if this a factor in high UK child mortality rates. This part of the project looking at social determinants of health will help identify which groups will need particular attention to reduce child mortality, and identify particular policy areas outside of health where intervention could save lives.

Finally, I will look at how health services are used in the years before children die in the UK. Previous studies have shown wide variation in the care that children receive for common illnesses in different parts of the country. I will explore whether access to and use of health care services such as outpatient clinics, attendances to Accident and Emergency departments, and rates of missed appointments prior to death, and the way these vary across England, may be related to greater risk of dying.

I will use data on causes of death collected routinely by national statistics offices in England, Wales, Northern Ireland and Scotland. These organisations also provide data on levels of poverty and inequality needed for my analysis. This information can be linked with data collected by hospitals on which children were admitted, had clinic appointments, or attended emergency department, to describe use of health services before death.

I will describe patterns of UK child mortality in detail and identify which groups are at greatest risk and how much deprivation and healthcare factors are related to this risk. My findings may enable effective policies to be developed to reduce child deaths in the UK, a key healthcare priority.

Background: There is growing concern that mortality outcomes for children and young people (CYP) in the UK have lagged behind other wealthy countries, and the UK now has one of the highest CYP mortality rates in Europe.

Aims: To investigate the causes of excess UK CYP mortality outcomes by 1) updating international comparisons of CYP mortality trends 2008 - 2015 between the UK and EU15+ countries (the pre-2004 European Union plus Norway, Canada, Australia); 2) identifying causes of deaths with excess CYP mortality relative to EU15+ nations; 3) understanding demographic, socioeconomic and regional variation in excess UK CYP mortality; 4) assessing the contribution of health systems factors to explain variation in UK CYP mortality.

Methods:
Data sources: WHO World mortality database for international comparisons (grouped and primary cause of death). Mortality and socioeconomic variables from Office for National Statistics (ONS) (England and Wales), and equivalent national databases for Northern Ireland and Scotland. ONS data will be linked with Hospital Episodes Statistics (HES) to analyse healthcare utilisation in domains of excess CYP mortality in England.

Analyses:
Study(S)1: Compare trends in UK total and cause mortality by 5-year age group (0-24) and sex, to EU15+ countries 2008-2015

S2: Identify groups of causes of CYP mortality (post-neonatal to 24 years) where the UK has excess mortality compared with the EU15+ from 2000-2015.

S3: Analyse variation in CYP mortality within the UK for groups of causes by level of deprivation and local measures of income inequality.

S4: Explore the contribution of health service utilisation prior to death and individual demographic factors (as exposures) to mortality risk in England (as outcome) in groups of causes where the UK has excess mortality.

This project will increase the understanding of high UK child and young person mortality, directly impacting efforts to improve outcomes, and so enhance the quality of life, health and wellbeing of the population. This will bring clear social and economic benefits for the UK; improvements CYP health will translate to increased health of the adult workforce, increased productivity, and foster the UK's global economic performance. The project will reduce CYP mortality through specific impacts relating to each of the four outputs of my research project:

Outcome 1: Quantification of trends in UK CYP mortality post 2008 compared with other wealth nations (the EU15+ countries).

Impact: This analysis will directly inform proposed initiatives to monitor UK CYP mortality rates by government and the royal colleges. Previous projections have indicated UK child and adolescent mortality will continue to diverge away from other wealthy nations. My project will establish if this is the case, and so will have a direct impact in highlighting a pressing need to intensify government and professional interest, further research, and charity involvement in this issue. It will contribute to the Royal College of Paediatrics and Child Health's (RCPCH) and British Association for Child and Adolescent Public Health's campaign to raise awareness of high UK child mortality, advocate to protect children's lives, and lobby government to continue to prioritise improving UK child mortality outcomes. Both local and national government will be able to use my research findings to develop targeted initiatives where there is greatest excess mortality. Charitable organisations such as the National Children's Bureau, who worked with the RCPCH to publish the "Why Children Die" report 2014, will be able to use my research findings to continue to advocate for initiatives to reduce mortality.

Outcome 2: Identified causes/groups of causes where the UK has clear evidence of excess CYP mortality, by age-group;

Impact: Through identifying specific mortality causes contributing to excess CYP mortality within the UK, my research will highlight causes and age-groups with the greatest need of improvement. The results will have direct benefit for public health and clinical researchers specializing in these fields by highlighting where to target interventions to improve outcomes. Charities specializing in causes where there is excess mortality will be able to use these results to advocate and campaign to developing improvements within services, and academics in these fields will be able to use these results to support a case for research funding.

Outcome 3: Understanding of variation in excess mortality across the UK by region and level of deprivation

Impact: This analysis will help policy makers and academics to target initiatives to improve environments where children live. Charities with an interest in the effect of child poverty, inequality, housing, and other social determinants will be able to use these results to lobby for further funding to address these issues.

Outcome 4: Estimates of contributions of a range of health system and provider factors to excess CYP UK mortality

Impact: This analysis will enable health providers (e.g. NHS England; Clinical Commissioning Groups; Trusts) to improve outcomes by identifying variation in outcomes for certain groups of causes of death relating to provider levels. These findings may be used by health systems researchers to argue for different ways of delivering services, for example through more integrated approaches used in countries with lower child mortality. The third sector / health charities may use findings to campaign for improvements in services.

Timescales:
My work will directly influence researchers and policymakers within 1-3 years of the ending of the PhD. The timing of impact on mortality is likely to be longer and depend on intervention type.