Download Seize Control: Improving Epilepsy Care

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
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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
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Objectives:
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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:
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Telephone survey fielded May 2007
402 adults (117 males, 285 females) aged 18 and above
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Age 18 - 39: 65 participants
Age 40 - 49: 235 participants
Age 60+: 102 participants
With active seizures, despite being treated
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Approx. 1/3 had more than one seizure per month
Key Issues for Discussion (cont.)
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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%)
0
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10
15
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25
30
35
40
45
50
55
60
65
70
Provider/Patient Dialogue
Paul Levisohn, MD
The Children’s Hospital, Denver
Chair, AES Practice Committee
Who is Providing the Care?
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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
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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
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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
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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
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Physician/patient dialogue:
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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 patient’s QOL
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Physicians infrequently address social issues with patients
Treatment expectations:
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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
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Provider’s role:
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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
Patient’s role:
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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
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Central tenet of epilepsy treatment: “No seizures, no side effects”
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Education and good physician relationship are essential
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Key survey findings – patients desire:
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Reduced seizure frequency
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Knowledge about the condition
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Patients (51%) defined significant improvement as a 90% reduction or no
seizures at all
Nearly 7 in 10 think it’s possible to improve their level of seizure control, but
didn’t believe their doctors would agree
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
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85% agree their doctor is doing all he/she can to treat them but there’s more
work to be done
Patients’ Expectations
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Patients are looking for improved seizure control
Very/somewhat satisfied
with medical care (89%)
Very/somewhat satisfied
with control (80%)
0
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10
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30
40
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60
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Yet 68% say seizure control could be improved
90
Addressing Key Challenges
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Get patients and healthcare providers on same page
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Encourage self advocacy
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Knowing what to expect, what is acceptable and what is not
Recognize issues beyond seizure frequency
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Accurate diagnosis
Correct selection of medications
Early referral of patients who do not respond to medicines
Disease impact is as important as symptoms
Promote life style adjustment
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What resources do persons with epilepsy need?
How to Help Patients
1+ seizures/month
Total sample
Doctor rarely/never discusses
surgery as treatment option
(80%)
Doctor discusses alternative
treatment options (58%)
Interested in trying
new medications
(50%)
0
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5
10 15 20 25 30 35 40 45 50 55 60 65 70 75 80
What do patients need?
 Strive for seizure control as early as possible before epilepsy
interferes with major life decisions
 Implement interdisciplinary approach to treatment
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Consider impact of illness and development of coping skills
Know about treatment options and request alternatives
In the Final Analysis…
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Patients are satisfied with care their
physicians are giving, but they desire:
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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
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Impact of epilepsy on my life
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What do the study results mean for patients?
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Look how far I’ve come
Take charge of your health
Epilepsy management suggestions
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For physicians; for patients
Q&A Session
Moderator: Bruce Hermann, PhD
Conclusions
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There is significant underutilization of medical options by people with
refractory epilepsy, specifically access to specialists and newer treatment
options.
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There is a need to improve patient expectations about seizure control and
better physician/patient communication about treatment goals and social
issues.
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Social issues continue to have a major impact on daily lives; yet are not
often discussed with physicians.
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Many patients need additional education to become more active partners in
their care and active advocates on their own behalf.
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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