Objective: This study was undertaken to investigate the trends and mechanisms of epilepsy-related deaths in Scotland, highlighting the proportion that were potentially avoidable. Methods: This was a retrospective observational data-linkage… Click to show full abstract
Objective: This study was undertaken to investigate the trends and mechanisms of epilepsy-related deaths in Scotland, highlighting the proportion that were potentially avoidable. Methods: This was a retrospective observational data-linkage study of administrative data from 2009 to 2016. We linked nationwide data encompassing mortality records, hospital admissions, outpatient attendance, antiepileptic drug (AED) prescriptions and regional primary care attendances. Adults (aged ≥ 16 years) suffering epilepsy-related death were identi fi ed for study using International Classi fi cation of Diseases, 10th Revision coding combined with AED prescriptions. We reported epilepsy-related mortality rate (MR), age-speci fi c mortality ratios, multiple cause-of-death frequencies and the proportion of potentially avoidable deaths (identi fi ed as those with an underlying cause listed as avoidable by the Of fi ce for National Statistics). Results: A total of 1921 epilepsy-related deaths were identi fi ed 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 100 000 Scottish population (95% con fi dence interval [CI] = (cid:1) .05 to .66 per 100 000 for annual change in MR). Mortality ratios were signi fi cantly increased in young adults aged 1654 years (2.3, 95% CI = 1.82.8), peaking at age 1624 years (5.3, 95% CI = 1.88.8). Sudden unexpected death in epilepsy (SUDEP) constituted 30% of the 553 young adult epilepsy-related deaths, with several other non-SUDEP fatal mechanisms identi fi ed including aspiration pneumonia, cardiac arrest, AED or narcotic poisoning, drowning and alcohol dependence. Seventy-six percent of young adult epilepsy-related deaths were potentially avoidable. Signi fi cance: Epilepsy-related 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-related deaths are occurring in young adults. Services may need to be re-evaluated to improve specialist referral following seizure-related hospital admissions. Background and Objectives: Mortality is increased in epilepsy, but the important issue is that a proportion of epilepsy-related death is potentially preventable by optimized therapy and therefore needs to be identi fi ed. A new systematic classi fi cation of epilepsy-related mortality has been suggested to identify these preventable deaths. We applied this classi fi cation to an analysis of premature mortality in persons with epilepsy who were < 50 years of age. Methods: The study was a population-based retrospective cohort of all Danish citizens with and without epilepsy 1 to 49 years of age during 2007 to 2009. Information on all deaths was retrieved from the Danish Cause of Death Registry, autopsy reports, death certi fi cates and the Danish National Patient Registry. The primary cause of death in persons with epilepsy was evaluated independently by 3 neurologists, 1 neuro-paediatrician and 2 cardiologists. In case of uncertainty, a pathologist was consulted. All deaths were
               
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