{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,24]],"date-time":"2026-07-24T21:21:20Z","timestamp":1784928080884,"version":"3.55.0"},"reference-count":44,"publisher":"Wiley","issue":"11","license":[{"start":{"date-parts":[[2021,9,19]],"date-time":"2021-09-19T00:00:00Z","timestamp":1632009600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Epilepsia"],"published-print":{"date-parts":[[2021,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>This study was undertaken to investigate the trends and mechanisms of epilepsy\u2010related deaths in Scotland, highlighting the proportion that were potentially avoidable.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>This was a retrospective observational data\u2010linkage study of administrative data from 2009\u20132016. We linked nationwide data encompassing mortality records, hospital admissions, outpatient attendance, antiepileptic drug (AED) prescriptions, and regional primary care attendances. Adults (aged \u226516\u00a0years) suffering epilepsy\u2010related death were identified for study using International Classification of Diseases, 10th Revision coding combined with AED prescriptions. We reported epilepsy\u2010related mortality rate (MR), age\u2010specific mortality ratios, multiple cause\u2010of\u2010death frequencies, and the proportion of potentially avoidable deaths (identified as those with an underlying cause listed as avoidable by the Office for National Statistics).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 1921 epilepsy\u2010related deaths were identified across Scotland; 1185 (62%) decedents were hospitalized for seizures in the years leading up to death, yet only 518 (27%) were seen in a neurology clinic during the same period. MR remained unchanged over time, ranging from 5.9 to 8.7 per 100\u00a0000 Scottish population (95% confidence interval [CI] = \u2212.05 to .66 per 100\u00a0000 for annual change in MR). Mortality ratios were significantly increased in young adults aged 16\u201354\u00a0years (2.3, 95% CI = 1.8\u20132.8), peaking at age 16\u201324\u00a0years (5.3, 95% CI = 1.8\u20138.8). Sudden unexpected death in epilepsy (SUDEP) constituted 30% of the 553 young adult epilepsy\u2010related deaths, with several other non\u2010SUDEP fatal mechanisms identified including aspiration pneumonia, cardiac arrest, AED or narcotic poisoning, drowning, and alcohol dependence. Seventy\u2010six percent of young adult epilepsy\u2010related deaths were potentially avoidable.<\/jats:p><\/jats:sec><jats:sec><jats:title>Significance<\/jats:title><jats:p>Epilepsy\u2010related deaths are a major public health problem in Scotland, given that they are not reducing, people are dying young, and many deaths are potentially avoidable. SUDEP is only one of several important mechanisms by which epilepsy\u2010related deaths are occurring in young adults. Services may need to be re\u2010evaluated to improve specialist referral following seizure\u2010related hospital admissions.<\/jats:p><\/jats:sec>","DOI":"10.1111\/epi.17065","type":"journal-article","created":{"date-parts":[[2021,9,19]],"date-time":"2021-09-19T16:55:15Z","timestamp":1632070515000},"page":"2667-2684","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":27,"title":["A national study of epilepsy\u2010related deaths in Scotland: Trends, mechanisms, and avoidable deaths"],"prefix":"10.1111","volume":"62","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9588-2944","authenticated-orcid":false,"given":"Gashirai K.","family":"Mbizvo","sequence":"first","affiliation":[{"name":"Muir Maxwell Epilepsy Centre Centre for Clinical Brain Sciences University of Edinburgh Edinburgh UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christian","family":"Schnier","sequence":"additional","affiliation":[{"name":"Usher Institute University of Edinburgh Edinburgh UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Colin R.","family":"Simpson","sequence":"additional","affiliation":[{"name":"Usher Institute University of Edinburgh Edinburgh UK"},{"name":"School of Health Wellington Faculty of Health Victoria University of Wellington Wellington New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Richard F. M.","family":"Chin","sequence":"additional","affiliation":[{"name":"Muir Maxwell Epilepsy Centre Centre for Clinical Brain Sciences University of Edinburgh Edinburgh UK"},{"name":"Royal Hospital for Sick Children Edinburgh UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan E.","family":"Duncan","sequence":"additional","affiliation":[{"name":"Muir Maxwell Epilepsy Centre Centre for Clinical Brain Sciences University of Edinburgh Edinburgh UK"},{"name":"Department of Clinical Neurosciences Western General Hospital Edinburgh UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,9,19]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(18)32596-0"},{"key":"e_1_2_9_3_1","unstructured":"Joint Epilepsy Council of the UK and IrelandEpilepsy prevalence incidence and other statistics. 2011.https:\/\/bit.ly\/3hE0Dhw. Accessed 30 Oct 2019."},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2005.066852"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/2054270416654358"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.eplepsyres.2019.106192"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000002253"},{"issue":"9","key":"e_1_2_9_8_1","first-page":"1","article-title":"United Kingdom (Scotland): health system review","volume":"14","author":"Steel D","year":"2012","journal-title":"Health Syst Transit"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2468-2667(18)30068-9"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1093\/aje\/kwm037"},{"key":"e_1_2_9_11_1","unstructured":"Chief Medical Officer.Guidance for doctors completing Medical Certificates of the Cause of Death (MCCD) and its quality assurance. 2018.https:\/\/bit.ly\/2yyMzlC. Accessed 3 Mar 2020."},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.2471\/BLT.16.172189"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1586\/ern.11.72"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.1111\/epi.13604"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.2003.029223"},{"key":"e_1_2_9_16_1","unstructured":"OlatundeO Windsor\u2010ShellardB CampbellA.Revised definition of avoidable mortality. 2016.https:\/\/bit.ly\/3cggXSK. Accessed 30 Oct 2019."},{"key":"e_1_2_9_17_1","volume-title":"Does healthcare save lives? Avoidable mortality revisited","author":"Nolte E","year":"2004"},{"key":"e_1_2_9_18_1","volume-title":"Australian and New Zealand atlas of avoidable mortality","author":"Page A","year":"2006"},{"key":"e_1_2_9_19_1","unstructured":"ONS Mortality Team.Avoidable mortality in the UK QMI. 2020.https:\/\/bit.ly\/2SMgPmY. Accessed 31 May 2021."},{"key":"e_1_2_9_20_1","unstructured":"Information Services Division.National Records of Scotland (NRS) \u2010 Deaths Data.2016.https:\/\/bit.ly\/3CiWmYO. Accessed 27 Oct 2019."},{"key":"e_1_2_9_21_1","unstructured":"National Records of Scotland.Some specific checks carried out on deaths data: vital events\u2013deaths\u2013background information. 2019.https:\/\/bit.ly\/2F50Gm6. Accessed 5 Sep 2020."},{"key":"e_1_2_9_22_1","first-page":"364","article-title":"Scotland already has world leading mortality review system","volume":"7","author":"Fernie CGM","year":"2019","journal-title":"BMJ"},{"key":"e_1_2_9_23_1","unstructured":"Crown Office and Procurator Fiscal Service.Reporting deaths to the Procurator Fiscal: information and guidance for medical practitioners. 2015.https:\/\/bit.ly\/3uUUWPZ. Accessed 6 May 2021."},{"key":"e_1_2_9_24_1","unstructured":"Royal College of Pathologists.Guidelines on autopsy practice2002.http:\/\/www.ihrdni.org\/314\u2010008\u20101.pdf. Accessed 1 Jun 2021."},{"key":"e_1_2_9_25_1","unstructured":"Information Services Division 2016"},{"key":"e_1_2_9_26_1","doi-asserted-by":"publisher","DOI":"10.1111\/epi.16547"},{"key":"e_1_2_9_27_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.eplepsyres.2020.106462"},{"key":"e_1_2_9_28_1","unstructured":"National Records of Scotland.Death certificates and coding the causes of death. 2017.https:\/\/bit.ly\/2DrrjR2. Accessed 31 Jul 2020."},{"key":"e_1_2_9_29_1","unstructured":"eDRIS Team National Services Scotland.How do we link the data?2020.https:\/\/bit.ly\/39DJ4ZB. Accessed 27 Jul 2020."},{"key":"e_1_2_9_30_1","unstructured":"Information Services Division. The Scottish Index of Multiple Deprivation (SIMD). 2016.https:\/\/bit.ly\/2V32ilM. Accessed 27 Oct 2019."},{"key":"e_1_2_9_31_1","unstructured":"Information Services Division 2016"},{"key":"e_1_2_9_32_1","unstructured":"Information Services Division.Data dictionary.https:\/\/bit.ly\/2Dko3ag. Accessed 31 Jul 2020."},{"key":"e_1_2_9_33_1","doi-asserted-by":"publisher","DOI":"10.1111\/epi.12895"},{"key":"e_1_2_9_34_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1528-1167.2011.03358.x"},{"key":"e_1_2_9_35_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2019-034077"},{"key":"e_1_2_9_36_1","unstructured":"Office for National Statistics.User guide to mortality statistics. Death rates ratios and standardisation. 2019.https:\/\/bit.ly\/2WydW8I. Accessed 30 Oct 2019."},{"key":"e_1_2_9_37_1","unstructured":"World Health Organization.International statistical classification of diseases and related health problems 10th revision. 1990.https:\/\/icd.who.int\/browse10\/2010\/en. Accessed 8 Sep 2020."},{"key":"e_1_2_9_38_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(06)70448-3"},{"key":"e_1_2_9_39_1","first-page":"CD006244","article-title":"Care delivery and self management strategies for adults with epilepsy","volume":"2","author":"Bradley PM","year":"2016","journal-title":"Cochrane Database Syst Rev"},{"key":"e_1_2_9_40_1","doi-asserted-by":"publisher","DOI":"10.1111\/epi.12763"},{"key":"e_1_2_9_41_1","unstructured":"National Records of Scotland.Table 9: All ages age\u2010standardised death rates by SIMD quintile and selected cause of death Scotland 2001 to 2019. 2020.https:\/\/bit.ly\/2R4dn6Q. Accessed 30 May 2021."},{"key":"e_1_2_9_42_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2014.11.018"},{"key":"e_1_2_9_43_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(19)33064-8"},{"key":"e_1_2_9_44_1","unstructured":"Scottish Public Health Observatory (ScotPHO).Deaths: most frequent causes. 2019.https:\/\/bit.ly\/3gb9x4y. Accessed 6 Jun 2021."},{"key":"e_1_2_9_45_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.seizure.2017.10.008"}],"container-title":["Epilepsia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/epi.17065","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/epi.17065","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/epi.17065","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,28]],"date-time":"2023-08-28T06:49:23Z","timestamp":1693205363000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/epi.17065"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,9,19]]},"references-count":44,"journal-issue":{"issue":"11","published-print":{"date-parts":[[2021,11]]}},"alternative-id":["10.1111\/epi.17065"],"URL":"https:\/\/doi.org\/10.1111\/epi.17065","archive":["Portico"],"relation":{},"ISSN":["0013-9580","1528-1167"],"issn-type":[{"value":"0013-9580","type":"print"},{"value":"1528-1167","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,9,19]]},"assertion":[{"value":"2021-03-22","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-08-30","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-09-19","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}