Deaths in children with epilepsies: A UK-wide study

• Most deaths in children with epilepsies are as a result of associated co-morbidities.
• One quarter of deaths reviewed were judged to be preventable.
• We found evidence of fragmentation of care and poor support for families.
• Poor recognition and response to acute illness may have contributed to some deaths.

PurposeThis UK-wide review of deaths in children with epilepsies was undertaken to ascertain any demographic, clinical, organisational, or management factors associated with the deaths, and to determine the extent to which any of these may have deviated from nationally agreed best practice.MethodPaediatricians across the UK were asked to notify any deaths in children with epilepsies over a 10-month period. Hospital and community case notes were reviewed by pairs of case assessors using a structured assessment tool combining holistic and criterion-based approaches.ResultsOf 46 deaths notified, case notes were obtained on 33. The majority of children had associated developmental impairments. The majority (24), died of an associated co-morbidity rather than of epilepsy. Seven died of convulsive status epilepticus and seven as sudden unexpected deaths in epilepsy. Twenty four percent of deaths were judged to be preventable; potentially modifiable factors included fragmentation of care, support for families, and recognition of and response to acute illness in the child, including the appropriate management of prolonged seizures.ConclusionsAlthough this audit has demonstrated significant improvements in quality of care when compared with the last national audit of epilepsy deaths in 2002, further improvement is still required.