A majority of pediatricians and family practitioners in a central Texas survey were unsure when pediatric epilepsy should be considered refractory and children should be referred for possible surgery.

Researchers from the epilepsy program at the Dell Children’s Medical Center in Austin surveyed 84 pediatricians, 44 family practitioners, and 18 neurologists or neurosurgeons to gauge their understanding of epilepsy management. Respondents treated a median of 2.5 pediatric epilepsy patients per month (range, 0-200), and about half had been in practice for less than 15 years.

Dr. Collin Hovinga

The neurologists and neurosurgeons scored well, but among primary care providers, “there was a clear lack of understanding of when you would consider someone refractory and when you would want to refer someone to a specialist or work them up for epilepsy surgery,” said investigator Collin Hovinga, Pharm.D., the epilepsy program’s director of neuropharmacology.

Only 39% (57) of respondents correctly agreed that children should be considered to have refractory epilepsy after failing two or three antiseizure medications; the rest were unsure or disagreed with the statement. More than a third (52) were unsure if failing six medications constituted refractory epilepsy.

About 70% (104) did not think or were unsure whether surgery is an effective option for partial epilepsy; 86% (126) were unsure or doubtful if it would help in generalized epilepsy. Only about half of respondents agreed that surgery should be considered for children who have failed 3 years of antiseizure medications.

Surgery for partial or generalized epilepsy “probably has the biggest impact on whether you can cure somebody or hugely decrease their seizure load. If two-thirds of respondents are unsure of that, it tells me we have completely failed in communicating what we do to professionals who refer to us,” said coinvestigator Dr. Freedom F. Perkins Jr., a pediatric epileptologist at Dell.

Dr. Freedom F. Perkins Jr.

Education is the answer. “It is incumbent on us to reach out to our referral sources” – pediatricians and family practitioners – “to make sure they understand these things.” Webinars could help, but might only draw physicians already interested in and knowledgeable about epilepsy. “The old-fashioned shoe leather” approach might be better; “you get in your car, you meet people, and you talk,” Dr. Perkins said at the annual meeting of the American Epilepsy Society.

The researchers plan to do just that with primary care physicians around Austin, and then repeat the survey in perhaps a year to see if the efforts improved understanding and referral patterns.

Dr. Hovinga and Dr. Perkins said they had no relevant financial disclosures.