Deaths in children with epilepsy
Surveillance of deaths in children and young people with epilepsy (excluding Scotland) commenced in October 2016. The study team were hoping to determine the size of the problem of deaths in children affected by epilepsy, to compare the differences between sudden unexplained death in epilepsy (SUDEP) and other causes of epilepsy deaths, and to allow future studies in this field.
Overview
Epilepsy is the most common long-term disabling condition of the nervous system affecting around 600,000 people in the UK. People with epilepsy are two to three times more likely to die early than the general population.
Children with epilepsy may die from a number of causes including sudden unexplained death in epilepsy (SUDEP). Different studies with different cohorts show that SUDEP is responsible for anything between 2-18% of all deaths in patients with epilepsy.
The risk in children remains uncertain but is thought to be considerably less. Although the causes of SUDEP are undetermined, the most important risk factor in adults seems to be the frequency of seizures.
Young people with severe epilepsy and learning disabilities may be at an even higher risk of SUDEP, with one previous study showing a death rate almost 16 times greater than expected.
Using the BPSU national surveillance system we aim to investigate the incidence of deaths in children with epilepsy in the UK and Ireland, and describe the demographic characteristics of affected children. The study will contribute to our understanding of the epidemiology of mortality in epilepsy in children in the UK and Ireland, and help us to evaluate the effectiveness of current public health measures.
Published papers
O Abdel‐Mannan, AG Sutcliffe. A national surveillance study of childhood epilepsy mortality in the UK and Ireland. European Journal of Neurology. 2020 Feb;27(2):327-33.
Investigators
Dr Omar Abdel-Mannan
NIHR Academic Clinical Fellow
Population, Policy and Practice, Programme
UCL Great Ormond Street Institute of Child Health
30 Guildford Street
London WC1N 1EH
Email: ich.bpsu.sudep@ucl.ac.uk
Duration
November 2016 – November 2017