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 projects:
- themed review of cases of mortality and morbidity in children and young people with epilepsy, described below
- retrospective epidemiological review of all-cause mortality
Epilepsy is the most common chronic childhood neurological condition and is associated with serious morbidity and mortality.
About one in 200 children in the UK has a form of epilepsy, and between 40 and 80 children die as a result of their epilepsy every year. There is a significant burden of care, associated with epilepsy, with 5% of emergency department and outpatient paediatric attendances being seizure-related.
Epilepsy-related deaths result from a range of direct causes including seizures themselves, which can lead to fatal accidental or aspiration-related events, and sudden unexpected death in epilepsy. Effective clinical management and emergency treatment are necessary to reduce the risk of serious morbidity resulting from epilepsy, which can include cognitive impairment and reduced educational potential.
In the years preceding the study, there was a renewed focus on improving care for people with epilepsy. This was partly in response to high-profile cases of mortality, with efforts being made to address geographical variation in service provision, high rates of misdiagnosis and mismanagement.
However, in spite of this, the clinical care received by children and young people with epilepsy who have died had not been reviewed since the 2002 National Sentinel Clinical Audit of Epilepsy-Related Death, which found that 59 per cent of child deaths were potentially or probably avoidable.
This review has therefore contributed to the evidence base in this area. It benefited from close alignment with the national Epilepsy12 audit managed by the RCPCH and led by Dr Colin Dunkley.
The project was managed by staff at the RCPCH. The clinical lead was Dr Peter Sidebotham, Consultant Paediatrician and Associate Professor of Child Health at the University of Warwick.