Epilepsy advocates propose strategies to heighten treatment expectations

On the heels of the nation’s largest event dedicated to the epilepsy community, the National Walk for Epilepsy, advocates today announced their recommendations in response to a new national survey uncovering key challenges facing the epilepsy community. Challenges include gaps in patient-physician communication around medication-related side effects and low public awareness of epilepsy.

According to the survey, sponsored by ORTHO-McNEIL NEUROLOGICS®, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc, 75 percent of epilepsy patients experience medication-related side effects and for the majority, these impact their daily lives, including 57 percent who say work or school are affected. A disconnect exists between patients and healthcare professionals surrounding their discussions on these side effects. While 98 percent of physicians report discussing medication-related side effects with patients, less than half (47 percent) of epilepsy patients report these discussions take place. And, more than one-quarter of patients report they sometimes feel reluctant to broach this topic during office visits. Not surprisingly, healthcare professionals underestimate the number of patients experiencing medication-related side effects, estimating this figure at just 43 percent. The most common side effects according to the survey are fatigue, poor memory, weight gain or weight loss and loss of concentration.

“These findings suggest treatment expectations among epilepsy patients are simply too low. According to the survey, 61 percent of people with epilepsy believe that side effects are just something they have to live with,” said roundtable moderator and Epilepsy Foundation CEO and President Eric Hargis. “People with epilepsy should be proactive in discussing their treatment plans, opening up about the side effects they experience and sharing how these side effects are affecting their lives.”

Panelists at the nine-person roundtable included some of the nation's premiere epileptologists, patients and caregivers and celebrity advocates, including Greg Grunberg, star of NBC’s television series "Heroes" and father of a son with epilepsy, and New York Giants defensive back Geoffrey Pope whose grandmother has epilepsy.

Improving Treatment Plans

Roundtable participants agreed that people with epilepsy and healthcare professionals should work together to ensure treatment plans are tailored to the individual. According to the survey, 85 percent of patients would prefer to have a more active role in making their treatment decisions.

“It is crucial for patients to speak up and be a part of developing their treatment model,” said Georgia Montouris, M.D., director of epilepsy services at the Boston University School of Medicine and Boston Medical Center.

Healthcare professionals surveyed say they would recommend an alternative treatment plan at least half the time for those patients experiencing medication-related side effects. "We need to increase the focus on individualizing treatment plans and strive for optimal balance between seizure control and minimization of side effects so that we can improve the overall well-being of people with epilepsy,” added Dr. Montouris.