Almost 80% of epilepsy deaths among adults are potentially avoidable, results of a new study from Scotland suggest.

Dr Gashirai Mbizvo

The research shows that such avoidable deaths “remain common and have not declined over time, despite advances in treatment,” Gashirai Mbizvo, MBChB, PhD, clinical research fellow, Muir Maxwell Epilepsy Center, the University of Edinburgh, United Kingdom, told a press briefing.

The findings were presented at the Congress of the European Academy of Neurology (EAN) 2020, which is being conducted as a virtual/online meeting because of the COVID-19 pandemic.

As his PhD dissertation, Mbizvo is investigating the rates, causes, and risk factors for epilepsy-related deaths and the percentage of these that are potentially avoidable.

The National Health Service of Scotland contains various linked administrative data sets. Each resident of Scotland has a unique identifier that facilitates investigations across the health system.

Mbizvo investigated adolescents and adults aged 16 years and older who died because of epilepsy from 2009 to 2016. He compared this group to patients of similar age who were living with epilepsy to identify risk factors that might help focus resources.

During the study period, 2149 epilepsy-related deaths occurred. Nearly 60% involved at least one seizure-related hospital admission.

Heavy Burden

Of the patients who died because of epilepsy, 24% were seen in an outpatient neurologic clinic. “So there’s this heavy burden of admissions not translating to neurology follow-up,” said Mbizvo.

During the study period, there was no reduction in mortality “despite advances in medical care,” said Mbizvo.

Younger people with epilepsy were found to be more likely to die. The standardized mortality rate was 6 per 100,000 (95% confidence interval [CI], 2.3 – 9.7) among those aged 16 to 24 years. By contrast, among those aged 45 to 54 years, the rate was 2 per 100,000 (95% CI, 1.1 – 2.1); it was lower in older age groups.

“So the overall mortality is not reducing; people are dying young, and neurologists are really not getting involved,” Mbizvo said.

Among the almost 600 deaths of those aged 16 to 54 years, 58% were from Scotland’s “most deprived areas,” he noted.

From medical records and antiepileptic drug (AED) use, Mbizvo looked for risk factors that may have contributed to these epilepsy-related deaths.

The most common cause of death in the 16- to 54-year age group was sudden unexpected death in epilepsy (SUDEP), followed by respiratory disorders, such as aspiration pneumonia.

“We think this should be avoidable, in the sense that these are people that could perhaps be targeted early with, for example, antibiotics,” said Mbizvo.

The next most common cause of death was circulatory disease, largely cardiac arrest.

“The idea is that electroexcitation ― an abnormality in the brain ― and the heart are related, and maybe that’s translating to a risk of death,” said Mbizvo.

Worrisome Group

Mental and behavioral disorders, largely alcohol related, were the next more common cause of death.

“This is a group I worry about,” said Mbizvo. “I think they’re seen in the acute services and discharged as alcohol withdrawal seizures. It’s possible that some have epilepsy and are never referred to a neurologist, and this may translate into increased mortality.”

Mbizvo is analyzing how these results differ from what is seen in the general population of Scotland among those younger than 75 years.

The top cause of death in the general population is neoplasm of the lungs. Aspiration of the lung is near the top for those who died from epilepsy, but the mechanisms leading to lung-related deaths in these populations may differ, said Mbizvo.

By applying coding methodology from fields unrelated to epilepsy where this approach has been tried, he determined that 78% of epilepsy-related deaths among those younger than 55 years were potentially avoidable.

“As a method, this is still in its infancy and will require validation, but we see this as a start,” Mbizvo told Medscape Medical News.

He provided examples from medical records that illustrate avoidable factors that could contribute to death. These included cases in which patients were discharged with the wrong dose of AED and in which patients drowned in a bath after having not been appropriately educated about seizure safety.

Can’t Plug In

Patients with a first seizure are typically referred quickly to an appropriate service, but Mbizvo is concerned about those with chronic, stable epilepsy.

“These people may at some point decompensate, and there’s no channel to plug them back into neurology services to make it easy for them to access a neurologist,” he said.

Currently, experts tell discharged patients to call if a problem occurs, but the system “is rather ad hoc,” said Mbizvo.

Because of the COVID-19 crisis, the use of telemedicine is increasing. This is helping to improve the system.

“We may be able to build a virtual community for people who are on antiepileptic drugs and who suddenly begin to experience seizures again, to enable them to quickly get help, alongside a defined pathway to an epilepsy specialist,” said Mbizvo.

He hopes to develop a risk index for epilepsy patients similar to one used in cardiology that assesses risks such as smoking, high cholesterol level, and obesity.

Although such a risk score might be similar to the SUDEP risk indices being developed, it will take into account death from any epilepsy-related cause, said Mbizvo.

“Having not yet completed the analysis, I’m not sure which aspects will confer the greatest risk,” he said.

He added that anecdotally, he has noticed a slight trend toward high mortality among patients with epilepsy who present multiple times at emergency departments in a year.

If this trend is statistically valid, “it could help create a traffic light flagging system on A&Es [accident and emergency departments] where individuals with epilepsy who, for example, have two or more attendances to A&E in a year become flagged as high risk of death and are plugged into a rapid access epilepsy specialist clinic,” he said.

For their part, neurologists should recognize drug-resistant epilepsy early and refer such patients for assessment for resective surgery. If successful, such surgery reduces the risk for premature mortality, said Mbizvo.

As well, patients should not become discouraged by drug resistance. Research shows that with careful reassessment of epilepsy type and drug changes, some patients whose condition is thought to be intractable could experience significant improvement in seizure frequency, or seizures could be stopped.

“We need to talk to our patients more about the importance of adherence and encourage them to be honest with us if they don’t like the drugs we’re giving them and as a result are not taking them as recommended,” Mbizvo said.

Physicians also need to screen for mood disorders, especially suicidal ideation. Increasingly, specialists are recognizing mental health as an important area of epilepsy care.

They should also conduct a “safety briefing” perhaps twice a year in which they discuss, for example, SUDEP risk, driving concerns, showering instead of bathing, ensuring that a life guard is present at a swimming pool, and other measures.

Commenting on the study for Medscape Medical News, Josemir W. (Ley) Sander, MD, PhD, professor of neurology and clinical epilepsy, University College London, United Kingdom, said he welcomes any effort that highlights the problem of premature death among people with epilepsy and that offers possible ways to mitigate it.

Although the study “shows that premature death among people with epilepsy is a major issue,” many healthcare providers are not fully aware of the extent of this problem, said Sander.

“For many, epilepsy is just a benign condition in which people have seizures,” he said.

A risk score that could identify those at high risk for death and establishing preventive measures “would go a long way to decrease the burden of epilepsy,” he noted.

The study was supported by Epilepsy Research UK and the Juliet Bergqvist Memorial Fund. Mbizvo and Sander have disclosed no relevant financial relationships.

Congress of the European Academy of Neurology (EAN) 2020: Abstract 1869. Presented May 25, 2020.