New Zealand physicians investigating epilepsy-related deaths in the last decade believe the current figures may not tell the whole story.
A team of doctors at the Auckland City Hospital reviewed the corpses’ reports and identified 166 cases of sudden unexpected death in epilepsy (SUDEP) from 2007-16 – between 11-26 deaths per year.
Their findings, published in the New Zealand Medical Journal on Friday, suggest that this is probably an underestimate.
Three doctors at Auckland City Hospital – Mary Brennan, Peter Bergin and Shona Scott – conducted a retrospective assessment of sudden, unexpected epilepsy deaths to get a better idea of how often they occur.
Epilepsy-related deaths have made headlines in recent months, amid concerns that a change in drug brand was linked to five deaths.
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Epilepsy is a common neurological disorder that affects an estimated 1-2 in every 100 New Zealanders.
Neurologist Dr. Peter Bergin, one of the newspaper’s authors and president of Epilepsy NZ, said that although SUDEP was well recognized and widely reported, it was poorly understood.
SUDEP is defined as a sudden, unexpected, non-traumatic and non-drowning death of a person with epilepsy.
Of 190 possible SUDEP cases, the team identified 166 final cases.
They found that those who died from SUDEP varied between 1.5 and 67 years, with more than two-thirds between 15-45 years.
Epilepsy-related deaths have occurred in the media in recent months following several reported deaths following a change in medication brand, but little is known about how often these deaths occur. Doctors are trying to find out. (file photo)
Sixty-one percent were male.
The majority of patients – two-thirds – had at least one anti-epileptic in their system when they died.
Overseas studies suggest that SUDEP affects 1 in 1,000 people.
If this were true for New Zealand, about 40 people would die from SUDEP each year, the newspaper said.
Bergin said it was possible that the incidence of SUDEP decreased, but the researchers suspected that not all cases were identified.
If a doctor believed that a death was caused by epilepsy, the coroner did not need to be notified. Even if the coroner were informed, they might not be able to investigate, he said.
Bergin said that he and his team were now working on a prospective study on the actual incidence of SUDEP and possible risk factors, in collaboration with the main viewer.
They asked neurologists, pediatricians and general practitioners to inform the research group of all deaths in patients with epilepsy, to ensure that they identified all potential cases.
They also planned to set up a national SUDEP register.
In October, around 11,000 epilepsy Kiwis were forced to switch drugs to a generic form of an anti-convulsant called Logem.
Since then, five deaths have been reported to the Center for Update Monitoring, possibly linked to the change. Four are examined by the most important coroner.
The study was started before the drug switch. These cases are not included in the assessment.
Bergin said that, as far as the researchers could see, there was no anti-epileptic drug “disproportionately represented” in SUDEP deaths.
He said it was important not what medicine someone was using, but whether their attacks were under control.
Stopping the attacks was “the most important thing” that people with epilepsy could do to reduce the risk of SUDEP, he said.