Pauline Anderson

December 07, 2012

Many pediatricians, general practitioners, and even some neurologists don't have a clear understanding of what constitutes refractory epilepsy or which pediatric patients should be evaluated for epilepsy surgery, a new survey suggests.

The results, presented at the American Epilepsy Society (AES) 66th Annual Meeting, are "troubling" and "saddening" and reflect the failure of neurologists to pass on important information about epilepsy to primary care practitioners, said Freedom F. Perkins Jr, MD, Pediatric Neurology, Epilepsy, Autism & Developmental Disorders, Dell Children's Medical Center of Central Texas, Austin.

"I hate to say this, but we are a bit in our own echo chamber," Dr. Perkins told Medscape Medical News. "When we come to meetings like this, and have these conversation and produce things like the IOM [Institute of Medicine] report [on the public health dimensions of the epilepsies], we relate that to ourselves, but this information is not being disseminated down to primary care."

Diagnosis and Drugs

The survey was sent to 146 pediatricians, pediatric neurologists, and neurosurgeons and to family medicine practitioners across central Texas. The response rate was about 10%, which is similar to that for similar surveys.

Pediatricians represented the largest number of responders, followed by family practitioners, then neurologists and neurosurgeons.

In general, the respondents agreed with guidelines for performing electroencephalography (EEG) and neuroimaging for children with epilepsy. About half (54%) felt EEG should be performed after an antiepileptic drug fails, 83% thought MRI was needed after 2 or more seizures, and 94% would order MRI/computed tomography if there were focal findings or abnormal results on a neurologic examination.

Overall, neurologists were much better than other respondents at providing the appropriate responses to these and other survey questions.

However, responses to some questions were quite concerning, according to Dr. Perkins and his colleague, Collin Hovinga, PharmD, clinical associate professor, Dell Children's Medical Center.

For example, only 39% of respondents agreed that patients in whom 2 or 3 antiepileptic drugs failed should be considered as having intractable epilepsy, whereas 28% disagreed and 33% were unsure.

"Most data suggest that if you have failed 2 medications, the probability distribution would say that there's a 90% to 95% certainty that you're going to be refractory to all the drugs," said Dr. Hovinga. "We have a lot of new drugs, but the percentage of patients who are controlled really hasn't increased at all, which is unfortunate."

About one third (35%) of respondents indicated they were unsure if a patient in whom up to 6 drugs failed was refractory.

"Clearly, there's a lack of understanding of what constitutes refractory -- when you should refer a patient to a neurologist or epileptologist; and when you should be concerned about a patient because of failing different drugs," said Dr. Hovinga.

Surgical Referral

In the arm of the survey that focused on physician attitudes toward referral of children for surgical evaluation, only 51% of respondents agreed that epilepsy surgery after 3 years of failed antiseizure medication should be considered; 49% either disagreed or were unsure.

About a quarter (25%) felt patients in whom the ketogenic diet fails should be considered for surgery, with more than half (54%) being unsure and 23% not thinking this would be helpful. Only 43% agreed that patients should be evaluated for surgery after failed vagus nerve stimulation.

Perhaps most concerning was that 63% of the survey population was unsure whether surgery would be effective for children with partial (or focal) epilepsy and 7% didn't think this would be an effective option.

"This one really broke my heart," said Dr. Perkins. "Focal epilepsy surgery has the highest positive response rates, and having two thirds plus of respondents saying they don't agree with it or aren't sure that it would be beneficial, tells me that we have completely failed in communicating what we do to professionals who would be referring to us."

Up to 90% of patients with partial epilepsy respond to surgery, noted Dr. Hovinga.

All kids with epilepsy should be considered for surgery, but that doesn't mean all of them should get it, Dr. Perkins stressed. "It's important to identify children with intractable epilepsy who might benefit from surgery. We need to go back to our baseline and reevaluate, especially as evolving technologies have rolled in, and we have better imaging and better diagnostic procedures determining if a particular person qualifies for surgery or not."

Just because a patient comes to an epilepsy center for an evaluation doesn't mean that patient is removed from primary care. "We're here as an augmentation, if others want us to comanage or guide," said Dr. Perkins. "These patients need to be getting the evaluations and there's a block in that process."

Asked about referring patients with generalized epilepsy for surgery, 61% of survey participants were unsure and 24% disagreed. Although such referrals are "a bit trickier than focal epilepsy" because the surgery may be for palliative care reasons, the surgery would still "vastly improve qualify of life for many of patients and their families," said Dr. Perkins.

Ironically, more than half of the doctors agreed that surgery might improve quality of life for children. "It's another one of those discordances" where doctors might think a particular intervention might help but they're not sure about the specifics, said Dr. Perkins.

Changing attitudes can be accomplished only through education, perhaps using webinars or other electronic tools, but most likely through old-fashioned "shoe leather" -- getting in your car and visiting doctors in the field, said Dr. Perkins. "On a local basis, it's incumbent on us to reach out to our referral sources outside of neurology and neurosurgery who are nonepileptologists -- into the pediatrician and family practice offices -- and make sure they understand these things."

American Epilepsy Society (AES) 66th Annual Meeting. Abstracts 1.342, 1.343. Presented December 1, 2012.