Dec 3, 2018

Untreated Epilepsy Exists Even in Wealthy Countries, Research Shows

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NEW ORLEANS – Nearly a third of people may not be prescribed treatment when diagnosed with epilepsy even in a resource-rich country, suggests an Australian study being presented at the American Epilepsy Society Annual Meeting.

For the first time, researchers also looked at why people diagnosed with epilepsy aren't prescribed anti-epileptic drugs (AEDs) – sometimes referred to as the epilepsy treatment gap – and found the reasons ranged from the seizures being precipitated by a potentially preventable event (such as flashing lights, sleep deprivation, stress and excessive alcohol use) to patients declining the offer of medication.

"The percentage of people who weren't initially prescribed AEDs was much higher than expected and suggests that untreated epilepsy exists not just in resource-poor but also in wealthy countries," said Zhibin Chen, Ph.D., lead author of the study and a biostatistician at the University of Melbourne, Australia.

For many people with epilepsy, AEDs are vital in reducing the risk of having a seizure, which in turn can reduce the concurrent increased risk of brain injury, disability, psychosocial disabilities or death.

People who are suspected of suffering from epilepsy should be referred to a specialized epilepsy center or neurologist who specializes in epilepsy, the American Epilepsy Society recommends. However, this research implies that untreated epilepsy exists even when patients are seen by neurologists who specialize in epilepsy, and even in Australia, a country with universal health care, suggesting epilepsy treatment decision-making is complex, Dr. Chen said.

The study included 813 people who were seen at one of two First Seizure Clinics and had experienced at least one seizure and had brain imaging and EEG. Of the 610 with a clear diagnosis of epilepsy, 189 patients (31 percent) did not start AED treatment, 16.4 percent because it was not recommended, and 14.6 percent because they declined treatment that was offered. Researchers also found:

  • Of those not offered treatment, 30 percent had experienced only one seizure, 29 percent were waiting for the results of additional tests and 22 percent had seizure-precipitating factors.
  • Among patients who declined treatment, 65 percent were not convinced of diagnosis or felt that treatment was not necessary, 13 percent had seizure-precipitating factors and 7 percent were concerned about potential adverse effects of the AEDs.
  • Among the initially untreated patients, 62.4 percent eventually started treatment after a median delay of 95 days with 11.6 percent of the original group of patients who had newly diagnosed epilepsy remaining untreated during the follow-up period.

AED therapy was more likely to be prescribed at epilepsy diagnosis in patients who were older, had lower socioeconomic status, had experienced more seizures and whose imaging results revealed spots (lesions) on their brains likely to be the cause of the seizure. Those with focal epilepsy, when an epileptic seizure starts in one side of the brain, were more likely to be treated than those with generalized epilepsy.

More evidence is needed regarding the long-term success of immediate therapy among people with seizure-precipitating factors compared to just avoiding those factors, said Dr. Chen.

"Our study shows that treatment decision-making for people diagnosed with epilepsy is complex and depends on the cause of the epilepsy as well as patient- and neurologist-specific factors," he said. "People newly diagnosed with epilepsy need to talk to their doctors to be sure they fully understand their need for treatment."


Davis Renzelmann
Public Communications Inc.

About the American Epilepsy Society

Founded in 1936, the American Epilepsy Society (AES) is a medical and scientific society whose members are dedicated to advancing research and education for preventing, treating and curing epilepsy. AES is an inclusive global forum where professionals from academia, private practice, not-for-profit, government and industry can learn, share and grow to eradicate epilepsy and its consequences.