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Published on: September 1, 2023
Deaths in children with epilepsies: a UK-wide study
Peter Sidebotham1, Lindsey Hunter2, Richard Appleton3
1Warwick Medical School, University of Warwick, Coventry, UK.
Insights
Review of childhood epilepsy deaths in the UK found that while care has improved, 24% of deaths were preventable. Factors like fragmented care and delayed response to illness contributed, highlighting needs for better support and seizure management.
Area of Science:
- Pediatric Neurology
- Epilepsy Research
- Public Health Surveillance
Background:
- Childhood epilepsy is a significant neurological condition with potential for mortality.
- Previous national audits have identified areas for improvement in care for children with epilepsy.
Purpose of the Study:
- To review deaths in children with epilepsy across the UK.
- To identify demographic, clinical, organizational, and management factors associated with these deaths.
- To assess adherence to nationally agreed best practices in pediatric epilepsy care.
Main Methods:
- UK-wide prospective review of child epilepsy deaths over 10 months.
- Notification of deaths by pediatricians.
- Review of hospital and community case notes using a structured assessment tool.
Main Results:
- 33 cases reviewed; most children had developmental impairments.
- 24 deaths (73%) were due to co-morbidities, 7 to status epilepticus, 7 to sudden unexpected death in epilepsy.
- 24% of deaths were preventable, linked to fragmented care, inadequate family support, and delayed recognition/management of acute illness.
Conclusions:
- Significant improvements in the quality of care for childhood epilepsy deaths since 2002.
- Further improvements in care delivery and management are still necessary.
- Addressing modifiable factors could reduce preventable deaths in children with epilepsy.
Purpose:
This 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.
Method:
Paediatricians 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.
Results:
Of 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.
Conclusions:
Although 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.
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