title: Understanding Death in Children With Epilepsy.
abstract: Death in children with epilepsy is profoundly disturbing, with lasting effects on the family, community, and health care providers. The overall risk of death for children with epilepsy is about ten times that of the general population. However, the risk of premature death for children without associated neurological comorbidities is similar to that of the general population, and most deaths are related to the cause of the epilepsy or associated neurological disability, not seizures. The most common cause of seizure-related death in children with epilepsy is sudden unexpected death in epilepsy (SUDEP). SUDEP is relatively uncommon in childhood, but the risk increases if epilepsy persists into adulthood. Although the direct cause of SUDEP remains unknown, most often death follows a generalized convulsive seizure and the risk of SUDEP is strongly related to drug-resistant epilepsy and frequent generalized tonic-clonic seizures. The most effective SUDEP prevention strategy is to reduce the frequency of seizures, although a number of seizure detection devices are under development and in the future may prove to be useful for seizure detection for those at particularly high risk. There are distinct benefits for health care professionals to discuss mortality with the family soon after the diagnosis of epilepsy. An individual approach is appropriate. When a child with epilepsy dies, particularly if the death was unexpected, family grief may be profound. Physicians and other health care professionals have a critical role in supporting families that lose a child to epilepsy. This review will provide health care providers with information needed to discuss the risk of death in children with epilepsy and support families following a loss.
authors.affiliation: Division of Neurology, Department of Paediatrics, The Hospital for Sick Children and University of Toronto, Toronto, ON, Canada. Electronic address: elizabeth.donner@sickkids.ca.
authors.forename: Elizabeth J
authors.initials: EJ
authors.lastname: Donner
authors.affiliation: Department of Pediatrics, Dalhousie University and the IWK Health Centre, Halifax, NS, Canada.
authors.forename: Peter
authors.initials: P
authors.lastname: Camfield
authors.affiliation: The SUDEP Institute, Epilepsy Foundation, Landover, Maryland.
authors.forename: Linda
authors.initials: L
authors.lastname: Brooks
authors.affiliation: Department of Paediatrics, Alberta Children's Hospital, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada; Department of Clinical Neuroscience, Alberta Children's Hospital, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
authors.forename: Jeffrey
authors.initials: J
authors.lastname: Buchhalter
authors.affiliation: Department of Pediatrics, Dalhousie University and the IWK Health Centre, Halifax, NS, Canada.
authors.forename: Carol
authors.initials: C
authors.lastname: Camfield
authors.affiliation: Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital and Harvard Medical School, Boston, Massachusetts.
authors.forename: Tobias
authors.initials: T
authors.lastname: Loddenkemper
authors.affiliation: Mayo Clinic, Rochester, Minnesota.
authors.forename: Elaine
authors.initials: E
authors.lastname: Wirrell
mesh_terms: D002648:Child; D003645:Death, Sudden / Q000453:epidemiology*; D004827:Epilepsy / Q000453:epidemiology* / Q000401:mortality*; D006801:Humans
keywords: children; epilepsy; mortality; sudden death in epilepsy