WASHINGTON, March 28 On the heels of the nation's largestevent dedicated to the epilepsy community, the National Walk for Epilepsy,advocates today announced their recommendations in response to a new nationalsurvey uncovering key challenges facing the epilepsy community. Challengesinclude gaps in patient-physician communication around medication-related sideeffects and low public awareness of epilepsy.
According to the survey, sponsored by ORTHO-McNEIL NEUROLOGICS(R),Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc., 75 percent of epilepsypatients experience medication-related side effects and for the majority,these impact their daily lives, including 57 percent who say work or schoolare affected. A disconnect exists between patients and healthcareprofessionals surrounding their discussions on these side effects. While 98percent of physicians report discussing medication-related side effects withpatients, less than half (47 percent) of epilepsy patients report thesediscussions take place. And, more than one-quarter of patients report theysometimes feel reluctant to broach this topic during office visits. Notsurprisingly, healthcare professionals underestimate the number of patientsexperiencing medication-related side effects, estimating this figure at just43 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 aresimply too low. According to the survey, 61 percent of people with epilepsybelieve that side effects are just something they have to live with," saidroundtable 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 sideeffects are affecting their lives."
Panelists at the nine-person roundtable included some of the nation'spremiere epileptologists, patients and caregivers and celebrity advocates,including Greg Grunberg, star of NBC's television series "Heroes" and fatherof a son with epilepsy, and New York Giants defensive back Geoffrey Pope whosegrandmother has epilepsy.
Improving Treatment Plans
Roundtable participants agreed that people with epilepsy and healthcareprofessionals should work together to ensure treatment plans are tailored tothe individual. According to the survey, 85 percent of patients would preferto have a more active role in making their treatment decisions.
"It is crucial for patients to speak up and be a part of developing theirtreatment model," said Georgia Montouris, M.D., director of epilepsy servicesat the Boston University School of Medicine and Boston Medical Center.
Healthcare professionals surveyed say they would recommend an alternativetreatment plan at least half the time for those patients experiencingmedication-related side effects. "We need to increase the focus onindividualizing treatment plans and strive for optimal balance between seizurecontrol and minimization of side effects so that we can improve the overallwell-being of people with epilepsy," added Dr. Montouris.
Roundtable participant Caitlin Purcell, 17, explained how her healthcareprofessional started her on one medication, but when she was stillexperiencing seizures he added new medications to her regime to help herfurther manage her condition. Physicians often try a variety of therapy mixesto customize the treatment approach, "and Caitlin's physician was trying tofind the right 'cocktail' for her," noted Dr. Mark Spitz, head of the AdultComprehensive Epilepsy Program at the University of Colorado.
Participants also discussed the need for new treatments. "We need tocontinue funding research and develo