title: After sudden unexpected death in epilepsy: Lessons learned and the road forward.
abstract: The devastating effects of sudden unexpected death in epilepsy (SUDEP) can be difficult to navigate, even for experienced clinicians. Mounting evidence supports full disclosure of the risks of epilepsy to those affected and their caregivers, and recommendations from regulatory and professional groups encourage the same. Following a death, families are faced with tragedy, guilt, and sometimes anger. Clinicians are often called upon to provide information and support. The development of a comprehensive approach to SUDEP education requires careful consideration of the people living with epilepsy, facts about SUDEP and known risk factors, as well as experiences of families and care providers. In this article, we share the experiences of those working in SUDEP education and epilepsy care, including the voluntary sector. We explore the experience of bereaved families and clinicians, derive lessons from published research, highlight areas where more research is needed, and report on preliminary data from a nationwide study from France.
authors.affiliation: Department of Paediatrics, Division of Neurology, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Elizabeth J
authors.initials: EJ
authors.lastname: Donner
authors.affiliation: Department of Clinical Neurosciences, Western General Hospital, Edinburgh, United Kingdom.
authors.forename: Briony
authors.initials: B
authors.lastname: Waddell
authors.affiliation: SUDEP Action, Wantage, Oxon, United Kingdom.
authors.forename: Karen
authors.initials: K
authors.lastname: Osland
authors.affiliation: Queen Elizabeth University Hospital, University of Glasgow, Glasgow, United Kingdom.
authors.forename: John P
authors.initials: JP
authors.lastname: Leach
authors.affiliation: Edinburgh and South East Scotland Epilepsy Service, Department of Clinical Neurosciences, Western General Hospital, Edinburgh, United Kingdom.
authors.forename: Susan
authors.initials: S
authors.lastname: Duncan
authors.affiliation: Department of Neurology, King's College Hospital, London, United Kingdom.
authors.forename: Lina
authors.initials: L
authors.lastname: Nashef
authors.affiliation: CHRU Montpellier, Clinical Investigation Center (CIC) & Clinical Research and Epidemiology Unit (URCE and INSERM), Montpellier, France.
authors.forename: Marie Christine
authors.initials: MC
authors.lastname: Picot
mesh_terms: D000293:Adolescent; D000328:Adult; D000927:Anticonvulsants / Q000627:therapeutic use; D001601:Bereavement; D035843:Biomedical Research; D017028:Caregivers; D015331:Cohort Studies; D003645:Death, Sudden; D004827:Epilepsy / Q000628:therapy*; D005190:Family; D005260:Female; D005602:France; D006801:Humans; D008297:Male; D010353:Patient Education as Topic; D010819:Physician's Role; D010817:Physician-Patient Relations; D012042:Registries; D012648:Self Care; D014342:Truth Disclosure; D006113:United Kingdom; D055815:Young Adult
chemical_list: D000927:Anticonvulsants
keywords: Bereaved relatives; Epilepsy; Patient education; SUDEP; SUDEP aftermath; Sudden death