Epilepsy deaths in children: Improvements driven by data and surveillance in pediatrics.

Epilepsy-related death in children and young people deserves understanding and intervention along with epilepsy-related deaths in adults. Risk of death from epilepsy varies at different ages, and the specific calculations of risk remains complex and varies between studies. There have been several UK studies examining factors associated with epilepsy-related deaths. A UK national audit with other national initiatives has evidenced improving quality of care and more recently allowed service provision factors associated with reduced epilepsy-related death to be evidenced. A national program of health education, formalized epilepsy networks, commissioned surgical pathways, and patient information resources around risk and participation are examples of quality improvement initiatives. Epilepsy-related death is a key outcome, and there remains many difficulties and opportunities at local, regional, and national level to better understand and improve this outcome for children and young people and the adults that they should become. This paper is for the Special Issue: Prevent 21: SUDEP Summit - Time to Listen.