Epilepsy and mortality: a retrospective cohort analysis with a nested case–control study identifying causes and risk factors from primary care and linkage-derived data

Abstract

ObjectivesPeople with epilepsy (PWE) have a higher mortality rate than the general population. Epilepsy-related deaths have increased despite all-cause mortality decreasing in the general population pre-COVID-19. We hypothesised that clinical and lifestyle factors may identify people more at risk.DesignWe used a retrospective cohort study to explore cause of death and a nested case–control study to identify risk factors.SettingWe explored factors associated with mortality using primary care population data from 1 April 2004 to 31 March 2014. Data were obtained from the Clinical Practice Research Datalink which compiles anonymised patient data from primary care in the UK. Cause of death data was supplemented from the Office of National Statistics when available.ParticipantsThe analysis included 70 431 PWE, with 11 241 registered deaths.ResultsThe number of deaths within the database increased by 69% between the first and last year of the study. Epilepsy was considered as a contributing cause in approximately 45% of deaths of PWE under 35. Factors associated with increased risk of death included attendance at emergency departments and/or emergency admissions (OR 3.48, 95% CI 3.19 to 3.80), antiepileptic drug (AED) polytherapy (2 AEDs: OR 1.60, 95% CI 1.51 to 1.71; 3 AEDs: OR 2.06, 95% CI 1.86 to 2.29; 4+AEDs: OR 2.62, 95% CI 2.23 to 3.08), status epilepticus (OR 2.78, 95% CI 1.64 to 4.71), depression (OR 1.67, 95% CI 1.57 to 1.76) and injuries (OR 1.54, 95% CI 1.43 to 1.67). No seizures in the prior year (OR 0.52, 95% CI 0.41 to 0.65).ConclusionOur results add to existing evidence that deaths in epilepsy are increasing. Future studies could focus on identifying PWE at high risk and addressing them with clinical interventions or better self-management. Identifying specific risk factors for younger people should be a priority as epilepsy may be a factor in close to half of deaths of PWE under 35 years of age.

Psychiatric comorbidities and all-cause mortality in epilepsy: A nationwide cohort study

“…In the current study we explored the association between psychiatric comorbidities and mortality in epilepsy by using a database of electronic health records from a population of 2.8 million. The rate of mortality in the current sample was high: this finding is likely associated with recent growth in mortality among PWE, which has been documented in Western countries and is thought to be determined by the overall growing burden of neurological diseases and lethal comorbidities in aging populations ( 17 , 18 ). For instance, an increase from 16.9 deaths per 1,000 PWE in 2005 to 36.6 in 2013 has been recorded in the UK based on data from the Clinical Practice Research Datalink ( 17 ).…”

“…The rate of mortality in the current sample was high: this finding is likely associated with recent growth in mortality among PWE, which has been documented in Western countries and is thought to be determined by the overall growing burden of neurological diseases and lethal comorbidities in aging populations ( 17 , 18 ). For instance, an increase from 16.9 deaths per 1,000 PWE in 2005 to 36.6 in 2013 has been recorded in the UK based on data from the Clinical Practice Research Datalink ( 17 ). Despite a high absolute mortality rate, the standardized mortality ratio of PWE in Lithuania is expected to be around three—a value similar to those reported in other high-income countries ( 14 , 19 ).…”

“…Despite a high absolute mortality rate, the standardized mortality ratio of PWE in Lithuania is expected to be around three—a value similar to those reported in other high-income countries ( 14 , 19 ). The non-exclusion of PWE with severe comorbidities that are not directly related to epilepsy (e.g., cardiovascular disease, dementia, cancer) may be another factor contributing to the high overall mortality rate ( 17 , 18 ). While the study period included the first months of the COVID-19 pandemic, this event was most likely unrelated to the high mortality among PWE as COVID-19-associated infection and deaths rates remained low in Lithuania in the first half 2020 because of a strict nationwide lockdown ( 20 ).…”

Epilepsy, intellectual disability and the epilepsy care pathway: improving outcomes

“…As a response to rising epilepsy-related deaths in the UK (Wojewodka 2021) and wide-ranging systemic problems relating to the investigation of such deaths and the support given to bereaved families, a good practice model for supporting bereaved individuals has been developed. This is led by families and clinicians through the support provided by the charirity SUDEP Action.…”

“Untold Distress” – How did the COVID-19 pandemic affect those who had previously experienced an epilepsy-related bereavement?

“…Epilepsy is common globally, and in the UK alone there are over 1000 epilepsy-related deaths annually [1] , most of which occur without warning and in young people [2] : up to half of epilepsy-related deaths are due to SUDEP (Sudden Unexpected Death in Epilepsy) [3] . Before the COVID-19 pandemic struck there was an increase in the reporting of epilepsy-related deaths in the community in the UK, with particular concern for women in pregnancy, and people with epilepsy and learning disabilities [4] , [5] .…”