{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T12:09:39Z","timestamp":1788264579457,"version":"build-2803163510"},"reference-count":37,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2015,7,1]],"date-time":"2015-07-01T00:00:00Z","timestamp":1435708800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2015,7,1]],"date-time":"2015-07-01T00:00:00Z","timestamp":1435708800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2016,7,1]],"date-time":"2016-07-01T00:00:00Z","timestamp":1467331200000},"content-version":"vor","delay-in-days":366,"URL":"http:\/\/www.elsevier.com\/open-access\/userlicense\/1.0\/"}],"funder":[{"name":"Epilepsy Australia"}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","seizure-journal.com","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Seizure"],"published-print":{"date-parts":[[2015,7]]},"DOI":"10.1016\/j.seizure.2015.05.007","type":"journal-article","created":{"date-parts":[[2015,5,25]],"date-time":"2015-05-25T10:01:45Z","timestamp":1432548105000},"page":"162-168","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":31,"special_numbering":"C","title":["Epilepsy-related deaths: An Australian survey of the experiences and needs of people bereaved by epilepsy"],"prefix":"10.1016","volume":"29","author":[{"given":"Michelle","family":"Bellon","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rosemary June","family":"Panelli","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fiona","family":"Rillotta","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"10","key":"10.1016\/j.seizure.2015.05.007_bib0190","doi-asserted-by":"crossref","first-page":"812","DOI":"10.1016\/j.seizure.2013.07.014","article-title":"Sudden unexpected death in epilepsy (SUDEP): development of a safety checklist","volume":"22","author":"Shankar","year":"2013","journal-title":"Seizure"},{"issue":"1","key":"10.1016\/j.seizure.2015.05.007_bib0195","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1684\/j.1950-6945.2004.tb00043.x","article-title":"The mortality of epilepsy revisited","volume":"6","author":"Gaitatzis","year":"2004","journal-title":"Epileptic Disord"},{"issue":"5","key":"10.1016\/j.seizure.2015.05.007_bib0200","doi-asserted-by":"crossref","first-page":"1270","DOI":"10.1212\/WNL.51.5.1270","article-title":"Population-based study of the incidence of sudden unexplained death in epilepsy","volume":"51","author":"Ficker","year":"1998","journal-title":"Neurology"},{"issue":"2","key":"10.1016\/j.seizure.2015.05.007_bib0205","doi-asserted-by":"crossref","first-page":"227","DOI":"10.1111\/j.1528-1167.2011.03358.x","article-title":"Unifying the definitions of sudden unexpected death in epilepsy","volume":"53","author":"Nashef","year":"2012","journal-title":"Epilepsia"},{"issue":"9808","key":"10.1016\/j.seizure.2015.05.007_bib0210","doi-asserted-by":"crossref","first-page":"2028","DOI":"10.1016\/S0140-6736(11)60176-1","article-title":"Sudden unexpected death in epilepsy","volume":"378","author":"Shorvon","year":"2011","journal-title":"Lancet"},{"issue":"1","key":"10.1016\/j.seizure.2015.05.007_bib0215","doi-asserted-by":"crossref","first-page":"67","DOI":"10.17925\/ENR.2012.07.01.67","article-title":"Sudden unexpected death in epilepsy \u2013 an overview of current understanding and future perspectives","volume":"7","author":"Friedman","year":"2012","journal-title":"European Neurological Review"},{"key":"10.1016\/j.seizure.2015.05.007_bib0220","series-title":"Sudden death and epilepsy: the views and experiences of bereaved relatives and carers","author":"Kennelly","year":"2002"},{"key":"10.1016\/j.seizure.2015.05.007_bib0225","series-title":"3220.0 Population projections 2012 to 2101","author":"Australian Bureau of Statistics (ABS)","year":"2013"},{"issue":"2","key":"10.1016\/j.seizure.2015.05.007_bib0230","doi-asserted-by":"crossref","first-page":"96","DOI":"10.1111\/j.1600-0404.2011.01499.x","article-title":"The prevalence and demographic distribution of treated epilepsy: a community-based study in Tasmania, Australia","volume":"125","author":"D'Souza","year":"2012","journal-title":"Acta Neurol Scand"},{"key":"10.1016\/j.seizure.2015.05.007_bib0235","series-title":"3303.0 Causes of death, Australia, 2012","author":"Australian Bureau of Statistics (ABS)","year":"2014"},{"key":"10.1016\/j.seizure.2015.05.007_bib0240","series-title":"General Record of Incidence of Mortality (GRIM) Books \u2013 Epilepsy","author":"Australian Bureau of Statistics (ABS)","year":"2010"},{"issue":"2 Suppl","key":"10.1016\/j.seizure.2015.05.007_bib0245","first-page":"9","article-title":"The epidemiology of SUDEP: a public health perspective","volume":"13","author":"Thurman","year":"2013","journal-title":"Epilepsy Currents"},{"key":"10.1016\/j.seizure.2015.05.007_bib0250","series-title":"Qualitative evaluation and research methods","author":"Patton","year":"1990"},{"issue":"2","key":"10.1016\/j.seizure.2015.05.007_bib0255","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"Braun","year":"2006","journal-title":"Qualitative Research in Psychology"},{"key":"10.1016\/j.seizure.2015.05.007_bib0260","series-title":"Sudden unexpected death in epilepsy: a global conversation","year":"2005"},{"key":"10.1016\/j.seizure.2015.05.007_bib0265","series-title":"Sudden unexpected death in epilepsy: continuing the global conversation","year":"2011"},{"issue":"2","key":"10.1016\/j.seizure.2015.05.007_bib0270","doi-asserted-by":"crossref","first-page":"199","DOI":"10.1136\/jnnp.2005.066852","article-title":"Sudden unexpected death in epilepsy (SUDEP): don\u2019t ask, don\u2019t tell?","volume":"77","author":"Morton","year":"2006","journal-title":"J Neurol Neurosurg Psychiatry"},{"issue":"2","key":"10.1016\/j.seizure.2015.05.007_bib0275","doi-asserted-by":"crossref","first-page":"331","DOI":"10.1007\/s10072-010-0365-7","article-title":"Sudden unexpected death in epilepsy (SUDEP): a pilot study on truth telling among Italian epileptologists","volume":"32","author":"Vegni","year":"2011","journal-title":"Neurological Sciences"},{"issue":"1","key":"10.1016\/j.seizure.2015.05.007_bib0280","doi-asserted-by":"crossref","first-page":"74","DOI":"10.1016\/j.seizure.2012.09.017","article-title":"Are we discussing SUDEP? A retrospective case note analysis","volume":"22","author":"Waddell","year":"2013","journal-title":"Seizure"},{"key":"10.1016\/j.seizure.2015.05.007_bib0285","doi-asserted-by":"crossref","first-page":"38","DOI":"10.1016\/j.yebeh.2013.12.020","article-title":"Discussing sudden unexpected death in epilepsy (SUDEP) with patients: practices of health-care providers","volume":"32","author":"Miller","year":"2014","journal-title":"Epilepsy Behav"},{"issue":"11","key":"10.1016\/j.seizure.2015.05.007_bib0290","doi-asserted-by":"crossref","first-page":"e2","DOI":"10.1136\/jnnp-2013-306573.100","article-title":"Sudden unexpected death in epilepsy information provision to parents of children with epilepsy \u2013 a service evaluation","volume":"84","author":"Jones","year":"2013","journal-title":"J Neurol Neurosurg Psychiatry"},{"issue":"10","key":"10.1016\/j.seizure.2015.05.007_bib0295","doi-asserted-by":"crossref","first-page":"1486","DOI":"10.1111\/epi.12799","article-title":"Characteristics of epilepsy patients and caregivers who either have or have not heard of SUDEP","volume":"55","author":"Kroner","year":"2014","journal-title":"Epilepsia"},{"key":"10.1016\/j.seizure.2015.05.007_bib0300","series-title":"The national sentinel clinical audit of epilepsy related death: epilepsy \u2013 death in the shadows","author":"Hanna","year":"2002"},{"key":"10.1016\/j.seizure.2015.05.007_bib0305","series-title":"Epilepsy across the spectrum: promoting health and understanding","author":"Institute of Medicine","year":"2012"},{"issue":"4","key":"10.1016\/j.seizure.2015.05.007_bib0310","doi-asserted-by":"crossref","first-page":"917","DOI":"10.1111\/j.1528-1167.2008.01906.x","article-title":"Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sudden Unexplained Death in Epilepsy","volume":"50","author":"So","year":"2009","journal-title":"Epilepsia"},{"issue":"2","key":"10.1016\/j.seizure.2015.05.007_bib0315","doi-asserted-by":"crossref","first-page":"280","DOI":"10.1016\/j.yebeh.2008.12.004","article-title":"A review of sudden unexpected death in epilepsy: prediction of patients at risk","volume":"14","author":"Hughes","year":"2009","journal-title":"Epilepsy Behav"},{"issue":"9","key":"10.1016\/j.seizure.2015.05.007_bib0320","doi-asserted-by":"crossref","first-page":"492","DOI":"10.1038\/nrneurol.2009.118","article-title":"Sudden unexpected death in epilepsy: risk factors and potential pathomechanisms","volume":"5","author":"Surges","year":"2009","journal-title":"Nat Rev Neurol"},{"issue":"20","key":"10.1016\/j.seizure.2015.05.007_bib0325","doi-asserted-by":"crossref","first-page":"1572","DOI":"10.1212\/01.wnl.0000319693.10338.b9","article-title":"Nonadherence to antiepileptic drugs and increased mortality: findings from the RANSOM study","volume":"71","author":"Faught","year":"2008","journal-title":"Neurology"},{"issue":"5","key":"10.1016\/j.seizure.2015.05.007_bib0330","doi-asserted-by":"crossref","first-page":"382","DOI":"10.1016\/j.seizure.2014.02.005","article-title":"A community study in Cornwall UK of sudden unexpected death in epilepsy (SUDEP) in a 9-year population sample","volume":"23","author":"Shankar","year":"2014","journal-title":"Seizure"},{"key":"10.1016\/j.seizure.2015.05.007_bib0335","series-title":"Diagnosis and Management of Epilepsy in Adults Edinburgh","author":"Scottish Intercollegiate Guidelines Network","year":"2003"},{"key":"10.1016\/j.seizure.2015.05.007_bib0340","series-title":"The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care, CG137","author":"National Institute for Health and Care Excellence","year":"2012"},{"key":"10.1016\/j.seizure.2015.05.007_bib0345","series-title":"Determination of Sheriff Alistair Duff, Sheriff of Tayside Central and Fife at Dundee. Inquiry held under fatal accidents and sudden deaths inquiry (Scotland) Act 1976 into the deaths of Erin Casey and Christina Fiorre Ilia","author":"Duff","year":"2011"},{"key":"10.1016\/j.seizure.2015.05.007_bib0350","doi-asserted-by":"crossref","first-page":"47","DOI":"10.1016\/j.seizure.2015.02.009","article-title":"SUDEP revisited \u2013 a decade on: have circumstances changed","volume":"27","author":"Beran","year":"2015","journal-title":"Seizure"},{"issue":"5","key":"10.1016\/j.seizure.2015.05.007_bib0355","doi-asserted-by":"crossref","first-page":"777","DOI":"10.1111\/j.1528-1167.2009.02483.x","article-title":"Parental and physician beliefs regarding the provision and content of written sudden unexpected death in epilepsy (SUDEP) information","volume":"51","author":"Gayatri","year":"2010","journal-title":"Epilepsia"},{"issue":"3","key":"10.1016\/j.seizure.2015.05.007_bib0360","doi-asserted-by":"crossref","first-page":"560","DOI":"10.1016\/j.yebeh.2013.09.040","article-title":"SUDEP: what do parents want to know?","volume":"29","author":"RamachandranNair","year":"2013","journal-title":"Epilepsy Behav"},{"key":"10.1016\/j.seizure.2015.05.007_bib0365","series-title":"Annual report of the Chief Medical Officer of the Department of Health 2001: epilepsy death in the shadows","author":"Department of Health (DOH)","year":"2001"},{"key":"10.1016\/j.seizure.2015.05.007_bib0370","series-title":"81460.0 Household use of information technology, Australia 2012\u20132013","author":"Australian Bureau of Statistics (ABS)","year":"2014"}],"container-title":["Seizure"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1059131115001272?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1059131115001272?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,21]],"date-time":"2025-10-21T01:46:35Z","timestamp":1761011195000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1059131115001272"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2015,7]]},"references-count":37,"alternative-id":["S1059131115001272"],"URL":"https:\/\/doi.org\/10.1016\/j.seizure.2015.05.007","relation":{},"ISSN":["1059-1311"],"issn-type":[{"value":"1059-1311","type":"print"}],"subject":[],"published":{"date-parts":[[2015,7]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Epilepsy-related deaths: An Australian survey of the experiences and needs of people bereaved by epilepsy","name":"articletitle","label":"Article Title"},{"value":"Seizure","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.seizure.2015.05.007","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"Copyright \u00a9 2015 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.","name":"copyright","label":"Copyright"}]}}