The CHR-UK programme aimed to inform clinical practice and improve the healthcare provided to children and young people in England, Scotland, Wales, Northern Ireland, the Channel Islands and the Isle of Man.
There were two discrete projects:
- themed review of cases of mortality and morbidity in children and young people with epilepsy
- retrospective epidemiological review of all-cause mortality, described below.
At the time of this study, the only national overview of underlying conditions and causes of death in children was based on information recorded on death certificates and published by the Office for National Statistics (ONS). These data did not provide clinicians and policy makers with a clear overview of the types of children most likely to die, or an understanding of how mortality rates for different groups of children were changing over time.
This project linked ONS death certificate data with longitudinal hospital admissions information in order to establish a new category of underlying conditions for children who die. This anonymised linked dataset provided more accurate and clinically relevant classifications of causes of death, in order to answer the questions:
- What are the characteristics of children who die?
- How are these characteristics changing over time?
The project was an all-cause analysis of mortality. However, the findings of this project were anticipated to be instrumental in identifying themes for future case reviews.
The project was led by Professor Ruth Gilbert, Professor of Clinical Epidemiology, Medical Research Council Centre for Epidemiology for Child Health, Institute of Child Health, University College London.