Overcoming barriers to successful epilepsy management.
- SourceAvailable from: Peter Dedeken[Show abstract] [Hide abstract]
ABSTRACT: In this large-scale, multinational, descriptive survey, we sought to identify measures for improving treatment outcomes for individuals with epilepsy. As a framework, questions relating specifically to each of the five steps of the ‘patient–physician journey’, namely, patient identification (omitted in this survey), diagnosis, choice of drug, disease and drug information, and patient monitoring were asked. Overall, 337 physicians and 1150 patients across France, Germany, and the United States returned questionnaires. Results indicated that 16% of the patients were initially misdiagnosed. Treatment choice was driven by efficacy, safety, experience with a drug (physician only), and convenience (patient only). Physicians were identified as the primary source of information for patients, and, as expected, better informed patients were found to adhere better to their therapy than those who were less well informed. Approximately 50% of the patients had not seen their specialist in the last year, which indicates poor follow-up; furthermore, important topics such as seizures, treatment, and its side effects were not discussed at every visit. Specialists, but not primary care practitioners (PCPs), consistently reported discussing all topics more frequently than their patients, suggesting that specialists may overestimate the clarity of their questions. There was also substantial disparity in the reasons cited for nonadherence — patients overwhelmingly cited forgetfulness, while both PCPs and specialists cited complacency, forgetfulness, and tolerability. We also noted a disparity between physicians and their patients, as well as between PCPs and specialists, in their views on the impact of epilepsy on patients' lives. Our results indicate multiple opportunities to intervene at all stages of the patient–physician journey to improve treatment outcomes. We provide practical suggestions to achieve the most from these opportunities.Epilepsy & Behavior 05/2014; 34:58–67. · 2.06 Impact Factor
Epilepsy Currents, Vol. 12, No. 4 (July/August) 2012 pp. 158–160
© American Epilepsy Society
Epilepsy Resources and Updates
According to the U.S. Centers for Disease Control (CDC) Report
on Epilepsy Surveillance among Adults, it is estimated that
61.5% of American adults with a history of epilepsy report
having had more than one seizure in the month prior to the
survey.1 Thirty-five percent reported not having seen a neu-
rologist or an epilepsy specialist.1 Moreover, individuals with
epilepsy were likely to report poorer health, had higher rates
of unemployment, and have had significantly worse health-
related quality-of-life than individuals with other chronic
medical conditions. Despite neuroscience advances providing
a better understanding of the spectrum of epilepsy morbidity
and mortality, and a plethora of therapeutic options, it appears
that limited progress has been made on the overall well-being
of the patient with epilepsy.
What Are the Barriers Precluding Successful Epilepsy
This year’s annual course at the American Epilepsy Society
meeting in Baltimore, MD, delved into obstacles that preclude
successful epilepsy management. Three broad categories of
barriers were explored:
1) diagnostic and physiologic barriers including seizure and
epilepsy classification, diagnostic barriers such as misreads
or limitations of both the EEG and MRI, and pathophysi-
ologic barriers such as genetics;
2) therapeutic barriers as exemplified by limited translational
epilepsy animal models, clinical trial designs, medication
adverse effects, nonadherence, and surgical barriers;
3) public health barriers including stigma, psychiatric comor-
bidities, health system issues, and driving laws in terms of
how they obstruct the care of the patient with seizures.
The goal of the course was not to simply itemize barriers
but to provide insightful practical ways in which individuals that
care for or research the issue of epilepsy can help to overcome
these barriers. Through a series of didactic lectures, panel dis-
cussions, debates, and question and answer sessions (all framed
with illustrative case presentations), the course illuminated a
path where successful treatment may be able to occur.
Diagnostic/Pathophysiological Barriers to Management
Classification of the epilepsies and seizures can be a force for
positive change; however, it can also present as a barrier to
1 University of California, City, CA
2 University of Texas, City, TX
3 Sahlgrenska University Hospital, City, State
4 Children’s University Hospital, City, State
5 Epilepsy Research Centre, City, State
6 Mayo Clinic, City, State
7 Mayo Clinic, City, State
8 Medical University of South Carolina, City, SC
9 UCLA—Reed Neurological Research, City, CA
10 NYU School of Medicine, City, NY
11 Geisinger Clinic, City, State
12 Mayo Clinic, City, State
13 Cleveland Clinic Neuroscience Institute, Cleveland, OH
14 Rush University Medical Center, City, State
15 Johns Hopkins School of Medicine, Baltimore, MD
16 University of Arizona, City, AZ
17 Children’s Hospital Boston, Boston, MA
18 University Hospital Case Medical Center, City, State
19 Dalhousie University, City, State
20 University of Western Ontario, City, Province, Canada
21 Cincinnati Children’s Hospital, Cincinnati, OH
22 Brigham and Women’s Hospital, Boston, MA
23 Beth Israel Deaconess Medical Center, City, State
24 Mayo Clinic, City, State
25 Geffen School of Medicine at UCLA, Los Angeles, CA
26 University of Cincinnati, Cincinnati, OH
27 National Institutes of Health/National Institute of Neuro-
logical Disorders and Stroke, Clinical Epilepsy
2011 Annual Course Summary
Lisa M. Bateman, MD,1 Charles E. Begley, MD,2 Elinor Ben-Menachem, MD, PhD,3 Anne T. Berg, PhD,4 Samuel F.
Berkovic, MD,5 Gregory D. Cascino, MD,6 Joseph Drazkowski, MD,7 Jonathan C. Edwards, MD,8 Jerome Engel, Jr.,
MD, PhD,9 Jacqueline A. French, MD,10 Frank D. Gilliam, MD, MPH,11 Matthew T. Hoerth, MD,12 Lara E. Jehi, MD,13
Andres M. Kanner, MD,14 Gregory L. Krauss, MD,15 David M. Labiner, MD,16 Tobias Loddenkemper, MD,17 Hans
O. Luders, MD, PhD,18 Guy M. McKhann II, MD,19 Richard McLachlan, MD,20 Avani Modi, PhD,21 Page B. Pennell,
MD,22 Patricia O. Shafer, RN, MN,23 Joseph I. Sirven, MD,24 John M. Stern, MD,25 Jerzy P. Szaflarski, MD, PhD,26 Wil-
liam H. Theodore, MD27
Overcoming Barriers to Successful Epilepsy Management
2011 Annual Course Summary
meaningful clinical conversation. The focus with any given
individual patient should be on an accurate diagnosis. The
paroxysmal presentation of epileptic seizures and the lack of
a reliable interictal biomarker present a barrier in diagnos-
ing and monitoring epilepsy. Techniques to overcome this
obstacle involve obtaining appropriate genetic, clinical history,
video-EEG, and imaging studies. It is essential to know the
common diagnostic guidelines for solidifying a specific epi-
lepsy diagnosis in order to best help the patient.
Advances in genetics have helped to identify where genes
are obstacles to successful management. Copy number varia-
tions and de novo mutations are misunderstood, and esti-
mates of their prevalence are low. One area of epilepsy genet-
ics that has translated to clinical use is pharmacogenetics. The
findings of the HLA haplotypes that predict certain individuals
may be at risk for a serious rash associated with carbamaze-
pine exposure is a quantum leap and serves as a glimpse on
how genetic tests may be useful in tailoring individual agents
to the patient.
Because a seizure diagnosis requires recording an actual
seizure on EEG, this diagnostic tool can obstruct a diagnosis.
Interictal discharges can falsely localize, and while the irritative
and ictal onset zones may provide an estimate of the epilepto-
genic zone, they may not be congruent. An EEG should always
be interpreted within its clinical context with full knowledge
of the limitations of EEG data. Moreover, there are a number of
benign variants often mistakenly diagnosed as being epilep-
tiform and leading to a cascade of inappropriate therapeutic
choices. Thus, competently identifying benign EEG variants is
essential to successful epilepsy care.
With regards to imaging, it is essential to always formulate
a question that imaging will help to answer. Imaging, in and of
itself, should not be the sole reason that it is obtained; there
must first be a clear hypothesis about the expectation of the
results. One has to consider etiologies and localization. There
is a wide variety of imaging procedures available to evaluate
patients with epilepsy, including CT, many choices of MRI, PET
with a variety of ligands, and SPECT. In addition to choosing
studies designed to answer specific clinical questions, it is
important to have a good sense of the special features and
limitations of each in order to be able to choose the most ap-
propriate procedure and avoid unnecessary tests. For example,
PET is poor for identifying underlying pathology but good for
defining regions of functional deficit that may extend beyond
the “seizure-onset zone.” Imaging results should not be consid-
ered in isolation but interpreted in a clinical context. It is im-
portant to have adequate control data for comparison; some
degree of increased FLAIR signal, for example, may be found in
healthy volunteers. Dialogue with a radiologist is paramount.
Some technical issues, such as “partial volume effects,” may
be important for interpretation of functional imaging studies.
Ictal SPECT interpretation depends crucially on the relation of
injection time to seizure onset, as well as the degree of seizure
spread. PET may reflect the effects of cognitive dysfunction or
mood disorder; depending on the ligand used, activity is aver-
aged over 40 to 90 minutes. Recent seizure activity may influ-
ence results. The wide range of MRI sequences available, as well
as hardware such as surface coils, makes it important to consult
with radiologists to plan studies, particularly when occult le-
sions such as focal cortical dysplasia are suspected; “routine” MRI
may not be helpful. Some new techniques such as DTI and VBM
may reflect wider cortical injury as a result of seizures.
fMRI has now arrived as a standard of care for many
patients undergoing epilepsy surgery evaluations, yet it has
limitations. Results can be affected by large lesions such as
tumors or AVMs, possibly a prolonged post-ictal period after a
seizure cluster. It is crucial to understand the neuropsychologic
tests used as well as the analytic approach; varying statistical
thresholds may produce varying image results. In summary,
when it comes to both EEG and imaging, it is important to
keep in mind how little we really know about these studies,
and we should not rely on any one of these tests in isolation.
Although there are 24 different antiepileptic drugs (AEDs)
available for use in the United States, we still have little data to
guide us in deciding how to best choose a single agent for a
given patient. Moreover, the focus of epilepsy drug treatment is
on seizure control and not an epilepsy cure. To improve medical
therapy for epilepsy, better animal models that individualize
therapies are needed. It is essential to transform AEDs from an
anti-seizure aim to an anti-epileptogenic goal. We need to also
have a combination of randomized clinical controlled trials and
pragmatic trials utilizing comparative effectiveness as a way to
provide a complete picture of how to use a drug and to identify
the best population for a given agent.
Adherence to AED therapy is often the 800-pound gorilla in
the examination room and can lead to inaccurate clinical deci-
sions (e.g., changing drug or dose and leading to a misdiagno-
sis of drug-resistant epilepsy) when patients continue to have
seizures. Non-adherence to AED therapy leads to significant
morbidity, mortality, and diminished quality of life. Enough
emphasis cannot be placed on the importance of developing
reliable and validated educational tools and using objective
electronic monitors that measure adherence in a clinic setting.
Two central issues continue to serve as barriers to successful
epilepsy surgery; long-term efficacy and access to an epilepsy
surgery center. Even after 3,801 publications on epilepsy sur-
gery and 60 years after Wilder Penfield described the benefits
of epilepsy surgery, the long-term effectiveness rate of this
therapy has remained unchanged at 55%. Oftentimes, clini-
cians fail to grasp the next best approach in the case of seizure
recurrence. Re-operation offers the best chance of achieving
seizure-freedom and needs to be investigated when epilepsy
surgery has failed. Accurate epilepsy localization is critical to
prevent epilepsy surgery failure and it is likely that epilep-
togenesis within networks is the key to late surgical failures.
Failure to perform an adequate resection is often the culprit
for failure if seizures recur early within the first 6 months.
Nevertheless, epileptogenesis is likely the key to late surgical
failures, and finding appropriate anti-epileptogenic methods
may improve long-term seizure outcomes. Small targeted
resections such as amygdalohippocampectomy may result in
slightly fewer memory deficits, yet there is a potential risk for
increased chance of seizure recurrence. One has to balance
2011 Annual Course Summary
these two important variables when counseling patients, and
studies have to be performed that address the comparative
effectiveness of various limited resection techniques.
Even more problematic is the issue of access to an epi-
leptologist who can evaluate a patient for potential surgery.
Currently, there is a broader variety of conditions and patient
types that lend themselves to surgery for epilepsy. Because of
advances in imaging and surgical techniques, small children,
older adults, and individuals with cortical dysplasia may
benefit from operations that were previously never performed.
However, the delay to surgery is getting longer, now over 20
years.2 All patients who have seizures after adequate trials of
two AEDs should be referred to an epilepsy center. Early refer-
ral provides the best chance of avoiding adverse psychologic
and social consequences as well as premature death. Even if
they are not surgical candidates, they are likely to benefit from
a consultation with an epileptologist.
Psychiatric comorbidities are relatively frequent in people with
epilepsy, with depression and anxiety disorders being the
most frequent with life time prevalence rates of 30 to 35% in
population-based studies . Depression in epilepsy cannot
be considered any longer as “a normal reaction” to the obsta-
cles associated with this disorder. It is the expression as well of
neuro-chemical and neurophysiologic disturbances in limbic
structures. Depression has a very negative impact on the qual-
ity of life of patients with epilepsy, not only when presenting
as a major depressive episode (its most severe form), but also
as sub-syndromic depressive episodes . It is associated with
worse response of the seizure disorder to pharmacotherapy
and surgical treatment and worse tolerance to AEDs . Of
greater concern is the fact that affective disorders increase the
risk of completed suicide by 32-fold . Given all of the above,
patients with epilepsy need to be screened for depression at
the time of initial evaluation, in follow-up visits, and in par-
ticular, following changes in medication, epilepsy surgery and
during pregnancy and the postpartum. Its treatment should
be aimed towards complete remission of symptoms.
Public Health Barriers
There are many public health barriers to successful epilepsy
treatment. Sadly, disparities in epilepsy care are at the heart
of many public health issues regarding seizures. Consider
the following facts: emergency room use is higher in minor-
ity patients, there is less follow-up care for the uninsured,
surgical rates are lower for minorities, there is a lower rate of
antiepileptic drug use and nonadherence, and there are fewer
neurologic visits for the uninsured. A third of patients with re-
cent seizures had not seen a neurologist in the past year. There
is a 53-day wait list for a new visit with a child neurologist and
a 44-day wait list for a return visit.2 Patients on Medicaid have
difficulties seeing a neurologist often owing to economic
issues related to lack of insurance. This is especially true for
pediatric patients. It is not difficult to appreciate the significant
problems that need to be addressed in order to provide the
best quality care for these individuals.
Driving and stigma round out the other major public
health barriers to epilepsy care. The United States has ap-
proached driving regulations for the person with epilepsy
inconsistently, with highly heterogeneous and often confus-
ing individual state laws. Further investigation is needed
to identify the optimal seizure-free interval after a seizure
has occurred before an individual with epilepsy is allowed
to drive. Aside from driving, stigma is a major concern that
represents an overwhelming proportion of the psychosocial
burden of epilepsy. Stigma knows no boundaries and occurs
across all ethnic, gender, educational, and socioeconomic
groups, leading to discrimination. Only by frequent, rapid,
repetitive, and effective education and the recognition and
reconciliation of institutionalized stigma can we reverse the
downward spiral of epilepsy.
Fortunately, the public health barriers to epilepsy are
being addressed within a new Institute of Medicine report
with specific recommendations on the public health dimen-
sions of epilepsy that were released in April 2012.2 It is only
by appreciating the global view of epilepsy, as well as its
complex nuances within diagnosis, therapy, management,
and public policy, that we can truly begin to surmount the
many obstacles we face in order to provide the best care for
patients with epilepsy.
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Rapid detection of major depression in epilepsy: a multicenter study.
Lancet Neurology, 2006; 5(5):399-405.
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(2007). Epilepsy and risk of suicide: a population-based case–control
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