Surprisingly many people with epilepsy die suddenly and for unexplained reasons

Breaking new ground 24. mar 2022 2 min PhD and MD Marius Kløvgaard Written by Kristian Sjøgren

Researchers have mapped excess mortality among people with epilepsy and the causes of death. Surprisingly many die from epilepsy-related causes, which might be avoided through proper medication.

People with epilepsy have higher mortality than people without epilepsy.

The reasons are numerous, including people with epilepsy often having many other health-related problems.

In a new study, researchers in Denmark mapped for the first time the excess mortality for people with epilepsy younger than 50 years and the causes of death.

Surprisingly many die from epilepsy-related causes, which can often be avoided through proper medication. Shockingly many also die suddenly and without any explanation.

The research has been published in Neurology.

“We were surprised that so many deaths among people with epilepsy younger than 50 years are epilepsy-related and that one quarter were directly related to epileptic seizures. One fifth of these deaths were sudden and unexplained, much more frequent than we had imagined,” explains an author behind the study, Marius Kløvgaard, doctor and PhD, The Epilepsy Clinic, Rigshospitalet, Copenhagen.

10 times greater risk of dying

Marius Kløvgaard and colleagues mapped all deaths among people with epilepsy 1–49 years old from 2007 to 2009.

The researchers obtained data on diagnostic codes for epilepsy from the Danish National Patient Registry and data on whether the people with epilepsy were being treated for it from the Danish National Prescription Registry.

The study thus included people with a diagnostic code for epilepsy who were being treated for epilepsy, whereas an adult who had had one epilepsy-related encounter with a hospital as a child would not be included.

A total of 30,437 people 1–49 years old had active epilepsy during the study period, and the researchers compared them with the 3.8 million people in Denmark in this age group.

During the study period, 700 of these people with epilepsy died versus 7,825 in the general population.

People with epilepsy thus comprised only 0.8% of the total population but almost 9% of all deaths.

After the results were corrected for age and sex, active epilepsy still increased the risk of dying tenfold. Correcting for other illness, epilepsy still increased the risk of dying fourfold.

“This is in accordance with what we expected. It also fits the results of other studies, but we now have robust data from a large population study. Our results also indicate, as expected based on other studies, that mortality is greatest among younger people with epilepsy,” says Marius Kløvgaard.

Epilepsy can both directly and indirectly cause death

Many people with epilepsy not only struggle with epileptic seizures but have many other illnesses.

These can include developmental disability, abnormal brain development, brain tumours and neurodegenerative disorders.

The researchers therefore wanted to determine the actual causes of death for young people with epilepsy. Do most die from the direct or indirect effects of epilepsy?

Direct causes could include falls, drowning or road crashes in connection with epileptic seizures, and indirect causes may include people, for whom epilepsy is only part of a complex syndrome, who have difficulty swallowing, and this can lead to pneumonia.

Further, the cause of death may often not be related to epilepsy at all but perhaps a brain tumour or something else.

“Researchers previously focused on the individual cause of death, but here we wanted to assemble a complete picture and determine the actual causes of death of all these 700 people,” explains Marius Kløvgaard.

Most die from epilepsy-related conditions

The next results are really interesting.

Surprisingly many deaths (63%) were either directly or indirectly related to epilepsy.

Marius Kløvgaard says that this is surprising because many of these are theoretically preventable through medication.

“An underlying brain tumour can be difficult to prevent, but all deaths directly related to epilepsy are preventable,” says Marius Kløvgaard.

The study reported that 25% of all the 700 deaths were directly related to an epileptic seizure, such as epilepsy-related accidents.

“If these 25% had been properly medicated and not had any seizures, they might not have died. This result has garnered international attention,” explains Marius Kløvgaard.

Surprising number of unexplained deaths

One feared complication related to epilepsy is sudden unexplained death: one fifth suddenly died without any explanation.

“This is a lot, and also many more than in the general population. This shows why ensuring that people with epilepsy are properly medicated is so important. Our study shows that epilepsy is a serious disease with high mortality and poses a markedly increased risk of dying suddenly and for unexplained reasons,” concludes Marius Kløvgaard.

Epilepsy-related mortality in children and young adults in Denmark: a nationwide cohort study” has been published in Neurology. In 2014, the Novo Nordisk Foundation awarded a grant to Jacob Tfelt-Hansen for the project Risk Factors for Sudden Cardiac Death during Acute Myocardial Infarction (MI-RISK). The Lundbeck Foundation also awarded a grant for this study.

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