How Epileptologists Are Using Surveys to Keep a PULSE on Epilepsy
ARTICLE IN BRIEF
The American Epilepsy Society surveys its top epileptologists on clinical issues not readily answered by the medical literature — with some surprising results.
Epilepsy specialist Jacqueline A. French, MD, FAAN, has served on the AAN Guideline Development Committee for over a decade. During that time, she told Neurology Today, she has learned that there are many clinical questions that have no clear answer based on evidence.
“The guidelines often have a lot of gaps, areas in which there is no way to get evidence because clinical trials would be unethical or logistically impossible. But we still sometimes want to ask these questions,” said Dr. French, a professor of neurology, director of translational research and clinical trials in epilepsy at the New York University Langone Medical Center, and a member of the Neurology Today editorial advisory board.
So Dr. French worked with colleagues at the American Epilepsy Society (AES) to develop the Quantitative Practical Use-Driven Learning Survey in Epilepsy, or Q-PULSE. “The idea is to take the pulse of epilepsy today, to see what people are actually thinking and doing in their practices.”
HOW THE SURVEY WAS DEVELOPED
First rolled out in 2013, Q-PULSE periodically surveys a panel of 146 experts from level 4 epilepsy centers across the United States, carefully selected to be representative of the field overall in terms of factors such as geography, specialization, pediatric or adult, and gender. “We signed up two people from every one of the national epilepsy centers,” Dr. French explained. “Although we have their baseline information, their responses are completely anonymous. We may know that the survey includes a 57-year-old pediatrician, but we won't know the name.”
A ten-member Q-PULSE Committee develops the survey questions, which are designed to be tightly focused. “We keep all surveys short — no one's going to respond if it takes more than five minutes,” Dr. French said.
WHAT THE SURVEYS REVEAL
So far, Q-PULSE has sent out half a dozen surveys, sometimes with surprising results. For example, a survey titled “Stay, Hit, or Fold? What Do You Do If the Treatment May Be as Bad as the Problem?” asked clinicians to consider this scenario: “A 50-year-old gentleman presents with a history of focal epilepsy with seizure onset in his 20s, has been on phenytoin monotherapy for over 2 decades, and has been seizure free for the past 12 years. His recent bone-density testing shows him to be more than 2 SD below the age- and sex-adjusted normative results. His most recent MRI and EEG (from within the last year) studies are normal.”
The panel was asked to choose from several options: 1) “Stay” on the current antiepileptic drug (AED) or drugs and manage the adverse effects as well as possible; 2) take a “hit” and switch to an alternative AED to try and maintain seizure freedom without the adverse effects; or 3) “fold” on AEDs altogether and taper off the medication to see if seizure freedom is maintained without further treatment.
With relatively few studies currently available to establish the risks of tapering AEDs in medically managed, seizure-free adults, the question proved to have no clear answer. Approximately 50 percent of the panel said that other factors — primarily the patient's perception of the impact of a seizure, the patient's need to drive, and response to previous taper attempts — would have to be considered before a decision could be made. Another 30 percent said they would discontinue medications altogether, 18 percent said they would transition to an alternative medication, and only 2 percent said they would continue the patient on phenytoin.
“I was one of the respondents who would change to a new drug,” said Selim R. Benbadis, MD, a professor and director of the Comprehensive Epilepsy Program at the University of South Florida and Tampa General Hospital. “I was surprised to see that there was such a diversity of opinion.”
“There was really no consensus,” said Dr. French. “Nobody knows what to do because there are no data. With each survey, I say ‘Wow!’ about something we find out.”
Other surveys to date have addressed topics such as medical marijuana for the treatment of epilepsy, equipoise between phenytoin and levetiracetam for seizure prevention in traumatic brain injury, and how clinicians adjust lamotrigine doses and use lamotrigine blood levels.
The next survey in the pipeline will address education about psychogenic non-epileptic events. “We want to capture what programs that train in neurology and psychiatry are doing about this area,” said Chad Carlson, MD, an associate professor of neurology and co-director of the Comprehensive Epilepsy Program at the Medical College of Wisconsin. “What should be conveyed to trainees about how to address psychogenic non-epileptic seizures? Epileptologists may have strong feelings about what training should happen, but may not have a feel for what the program director in their residency is doing, while the program director, if not an epileptologist, may have limited knowledge of the bedside teaching process in this area.”
HOW TO APPLY THE RESULTS
How can the results of these surveys be used? There are many possibilities, Dr. French suggested. “If you find that the answers of the community represent two polar opposite opinions, now you know that the community is confused about this particular area and you might need to do a study to assess why there is such confusion and what you might do about that. You may find out that people are not doing what the evidence would suggest they do. There are lots of things you can find out through surveys like these that you can't find out any other way.”
Dr. Carlson added that the surveys can also be used to generate preliminary data to inform future studies, and to provide guidance to federal agencies such as the Food and Drug Administration (FDA). “The lamotrigine question, for example, was in response to a request from epileptologists to provide data to the FDA about lamotrigine and whether it should be considered a narrow therapeutic index drug.”
Dr. French also suggested that other fields within neurology could benefit from a survey similar to Q-PULSE. “Maybe people are not entirely clear on the fact that most of what we do is by the seat of our pants,” she said. “There are a lot of things we do for which there is no consensus. I would love to see this spring up in other subspecialties as well. I think virtually every area of neurology would be well served by doing surveys like these.”