Mortality has not improved in epilepsy over time despite advances in medical care and despite evidence that many of the deaths are potentially preventable.
The Scottish Epilepsy Deaths Study, presented at the EAN 2020 Virtual Congress, included 2,149 epilepsy-related deaths in adults between 2009-2016.
Age-standardised mortality rates per 100,000 ranged between 6.8 in 2009 and 9.1 in 2015.
Dr Gashirai Mbizvo, a neurology registrar from the University of Edinburgh, said the most common causes of deaths were SUDEP (31%), respiratory causes such as aspiration pneumonia (26%), and mental disorders including alcohol-related deaths (15%).
The study estimated that 79% of the deaths were potentially avoidable.
In a closer review of 414 case notes from the study, 57% had a potentially avoidable element that may have contributed to deaths.
Dr Mbizvo said medication issues accounted for 24% of preventable deaths.
Of particular concern were people with stable epilepsy having AED changes, destabilising and dying soon after. Similarly, other cases indicated people were being discharged on incorrect doses of AEDs and dying soon after from seizures.
Cases of deaths following valproate withdrawal in women of child bearing age concerned about the risk of fetal abnormalities also suggested the need for better management.
And there were epilepsy-related deaths in relation to poor drug compliance where alternative new AEDs were not considered.
He said the national study showed a heavy burden of acute admissions but evidence that people were not being referred to a neurologist (38%) or were not being adequately followed up (31%).
Deaths such as drownings suggested people – either patients or their carers – were not being appropriately educated around seizure safety.
The study confirmed that mortality was highest in young adults in the 16–24-year-old group and decreased steadily with age.
Other research presented at the EAN 2020 Virtual Congress found evidence that caffeine may have a role in preventing seizure-related respiratory dysfunction in patients with drug-resistant epilepsy.
The presenter, Dr Julie Bourgeois-Vionnet from the Hospices Civils de Lyon in France, said if the results were confirmed by other studies there may be implications for SUDEP prevention.
The sub-study of the Safety of Antiepileptic Withdrawal in Long Term Video-EEG Monitoring study found a strong inverse association between coffee consumption and ictal hypoxemia in 321 seizures observed in 108 patients.
Participants with no coffee consumption had a 8.48 odds ratio for ictal hypoxemia; occasional coffee drinkers had an OR of 3.27 and moderate coffee drinkers an OR of 1.77.