Seize Control: Improving Epilepsy Care Media Telebriefing – Results and Implications from New Patient Survey December 3, 2007

Opening & Introductions Bruce Hermann, PhD Professor of Neurology and Director, Matthews Neuropsychology Lab, University of Wisconsin School of Medicine and Public Health Chair, EF Professional Advisory Board

Agenda Opening and Introductions: Bruce Hermann, PhD Provider / Patient Dialogue: Paul Levisohn, MD Treatment Expectations: Sandra R. Dewar, RN, MS Patient Perspective: Denise Pease Q&A Session Conclusion: Bruce Hermann, PhD

Survey Overview & Participants Objectives: Measure patient attitudes and burden of epilepsy on their lives Identify perceptions and gaps in patient knowledge concerning their treatment Identify key areas / issues for improvement through education Methodology: Telephone survey fielded May adults (117 males, 285 females) aged 18 and above Age : 65 participants Age : 235 participants Age 60+: 102 participants With active seizures, despite being treated Approx. 1/3 had more than one seizure per month

Key Issues for Discussion (cont.) Impact on patients: social complications Memory problems (65%) People treat me differently once they know I have epilepsy (43%) Daily concern about having a seizure in a public place (41%) Diagnosed with depression (31%) Fear of death during a seizure (21%)

Provider/Patient Dialogue Paul Levisohn, MD The Childrens Hospital, Denver Chair, AES Practice Committee

Who is Providing the Care? 42% treated by professionals other than neurologists Only 5% treated by epileptologists Non-specialists managing a wide spectrum of disease severity; clear implications for education & collaboration

Communication Gap Gap in mutual understanding / agreement on treatment goals 26% of patients do not know what doctors deem improvement Only 35% feel their doctor would agree that a 90% reduction or no seizures at all is an improvement Some patients are not always accurate in reporting seizures to physicians Only 10% of patients say they often underreport the frequency of their seizures Failure to track, forgetting, or just not being aware of having had a seizure are also reasons for underreporting Physicians do not frequently address social issues with patients Only about half ask about impact of epilepsy on quality of life

Key Issues for Discussion Physician/patient dialogue: Patients are not sure what their physicians would consider a significant improvement in seizure frequency Few physician focus on general questions or concern about lifestyle and issues important to the patients QOL Physicians infrequently address social issues with patients Treatment expectations: Patients believe their level of seizure control can be improved Give physicians high marks for effort, while at the same time believe that more can be done Many patients are willing to try new ways to control seizures

Improving Provider/Patient Communication Providers role: Encourage patients to always aim for better seizure control, but without unacceptable side effects Inform patients of all available treatment options including other medications, devices and surgery Work with patients to devise plan to achieve optimal treatment results Patients role: Be open and accurate with providers Expect more from treatment

Treatment Expectations Sandra R. Dewar, RN, MS UCLA Seizure Disorder Center Member, EF Professional Advisory Board

Expecting More from Treatment Central tenet of epilepsy treatment: No seizures, no side effects Education and good physician relationship are essential Key survey findings – patients desire: Reduced seizure frequency Patients (51%) defined significant improvement as a 90% reduction or no seizures at all Nearly 7 in 10 think its possible to improve their level of seizure control, but didnt believe their doctors would agree Knowledge about the condition 93% of women and 82% of men strongly/somewhat agree that knowledge helped them to better cope 90% of women and 89% of men strongly/somewhat agree that knowledge helped them manage their treatment Partnership with doctor 85% agree their doctor is doing all he/she can to treat them but theres more work to be done

Patients Expectations Patients are looking for improved seizure control Yet 68% say seizure control could be improved Very/somewhat satisfied with medical care (89%) Very/somewhat satisfied with control (80%)

Addressing Key Challenges Get patients and healthcare providers on same page Accurate diagnosis Correct selection of medications Early referral of patients who do not respond to medicines Encourage self advocacy Knowing what to expect, what is acceptable and what is not Recognize issues beyond seizure frequency Disease impact is as important as symptoms Promote life style adjustment What resources do persons with epilepsy need?

How to Help Patients What do patients need? Strive for seizure control as early as possible before epilepsy interferes with major life decisions Implement interdisciplinary approach to treatment Consider impact of illness and development of coping skills Know about treatment options and request alternatives Doctor discusses alternative treatment options (58%) Interested in trying new medications (50%) Doctor rarely/never discusses surgery as treatment option (80%)

In the Final Analysis… Patients are satisfied with care their physicians are giving, but they desire: Better seizure control Alternatives to their current treatment Increased attention to the quality of their life Further education and collaboration are key!

Patient Perspective: Personal Experience Denise Pease

Patient Perspective: Personal Experience Impact of epilepsy on my life Look how far Ive come What do the study results mean for patients? Take charge of your health Epilepsy management suggestions For physicians; for patients

Q&A Session Moderator: Bruce Hermann, PhD

Conclusions There is significant underutilization of medical options by people with refractory epilepsy, specifically access to specialists and newer treatment options. There is a need to improve patient expectations about seizure control and better physician/patient communication about treatment goals and social issues. Social issues continue to have a major impact on daily lives; yet are not often discussed with physicians. Many patients need additional education to become more active partners in their care and active advocates on their own behalf. Primary care physicians would benefit from education on availability of treatment options for their patients with refractory epilepsy, and when to refer for specialized care.

Seize Control: Improving Epilepsy Care Media Telebriefing – Results and Implications from New Patient Survey December 3, 2007