Misconceptions About Epilepsy Centers Prevent Access to Care for Refractory Epilepsy

Widespread misconceptions about epilepsy center services prevent many patients from getting the care they need and deserve.

VANCOUVER, British Columbia – Nearly 3 million people in the United States have epilepsy. One-third of those patients have refractory, uncontrolled epilepsy. Ultimately, these patients deserve better care.

That was the resounding message from Jerome Engel Jr, MD, PhD, FAAN, the Jonathan Sinay Distinguished Professor of Neurology, Neurobiology, and Psychiatry and Biobehavioral Sciences, and Director of the Seizure Disorder Center at UCLA’s David Geffen School of Medicine, who delivered the Robert Wartenberg Lecture during the Presidential Plenary session at the 68th annual meeting of the American Academy of Neurology (AAN) in Vancouver.

As the director of an epilepsy center, Dr Engel was quick to point out his obvious conflict of interest. However, he asked the audience to look past his professional title and instead see him as an advocate for the millions of patients who continue to be disabled by seizures despite the increasing number of available antiepileptic drugs (AEDs).

“The greatest impact on reducing disability today could derive from early recognition of pharmacoresistant epilepsy by neurologists and early referral to epilepsy centers,” Dr Engel said.

In any seizure disorder, early intervention is key to avoiding irreversible adverse consequences, but this is especially vital in epilepsy that is pharmacoresistant, in which seizures fail to respond to 2 appropriate drug trials due to efficacy, not patient tolerance. Notably, only 3% of this patient population will go on to be seizure free with further drug trials. 

Patients whose seizures go uncontrolled face increased risk of epileptic encephalopathies, developmental delay, behavioral problems, and cognitive impairment. These patients also face increased morbidity and mortality—5 to 10 times that of the general population. 

The goal for every patient should ultimately be no seizures and no adverse effects, but reaching this goal in patients who have refractory epilepsy often requires referral to a specialized epilepsy center.

Unfortunately, less than 1% of these patients in the United States are ever evaluated at an epilepsy center.

The reasons for this disparity vary, but Dr Engel believes that several misconceptions regarding epilepsy centers exist, including:

  • Epilepsy centers only offer surgery;

  • The patient is not a surgical candidate or does not want surgery, and therefore would not benefit from a referral to an epilepsy center; and

  • There is no reason to refer a patient to an epilepsy center.

Surgery is just one of many offerings available to patients at an epilepsy center, Dr Engel said. But before a patient is even considered a surgical candidate, epilepsy centers can help to identify specific syndromes, recognize nonepileptic seizures, diagnose the underlying treatable cause, address psychosocial problems, and identify alternative treatments. Some of the alternative treatments available to patients at a specialized epilepsy center include experimental drug trials, different types of stimulation (eg, vagus nerve, deep brain, and responsive neurostimulation), ketogenic diet plans, laser thermoablation, complementary medicine, and finally, surgery.

Of all the treatment options available, surgery remains severely underutilized, he said, citing statistics that indicate delays to referral for surgery spanning 17 to 22 years after diagnosis.

Physicians and patients alike continue to cite the same reasons for avoidance of epilepsy surgery despite an increasing body of evidence that demonstrates improved safety and efficacy for both short- and long-term outcomes. In fact, several studies conducted over the past 3 decades show that seizure freedom is increasingly likely in patients who undergo epilepsy surgery compared with those in drug treatment arms.

Regardless of reservations, patients who continue to be compromised by seizures after 2 failed drug trails deserve a timely consultation at an epilepsy center, Dr Engel said, noting that many of these cases may not actually be refractory and many patients may be surgical candidates. Even if they are not candidates, patients can benefit from the psychosocial support available to them at a specialized epilepsy center.

Click here for more coverage from the 68th Annual Meeting of the American Academy of Neurology, April 15-21, 2016, in Vancouver, British Columbia, Canada.


Engel J. What can we do for the patient with pharmacoresistant epilepsy? Presented at: The 68th Annual Meeting of the American Academy of Neurology; April 15-21, 2016; Vancouver, British Columbia.