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TRANSCRIPT
American Epilepsy Society Annual
Meeting
2011 Judith Hoyer Lecture Psychosocial Aspects of Epilepsy:
State of the Art
Steven C. Schachter, M.D.
Professor of Neurology, Harvard Medical School
Introduction
Purpose of the Judith Hoyer Lecture
Raise awareness of epilepsy
among researchers and the public
and provide intellectual stimulation
that will encourage continuing
progress toward finding a cure for
epilepsy
Introductio
n There is an urgent need for more research
We have no cures or ways to prevent epilepsy
PWE are at significant risk for
Increased mortality
Drug-resistant seizures, unacceptable side
effects
Disabling psychosocial, medical co-morbidities
Public health dimensions of epilepsy remain to be
fully evaluated (IOM study)
Introduction
Curing Epilepsy: The Promise of Research
Better understanding of what happens in
the brain to create epileptic seizures
New ways to prevent epilepsy
New treatments that eliminate seizures
without side effects
Reducing the day-to-day impact of epilepsy
http://www.ninds.nih.gov/disorders/epilepsy/epilepsy_research.htm#section4
Introduction
The focus of this Judith Hoyer Lecture is the
day-to-day impact of epilepsy
My premise is that art and music created by
persons living with epilepsy can both
illustrate and inspire research to better
understand and eliminate the day-to-day
impact of epilepsy
Underscores the vital importance of the
perspectives of patients and their families
Why is this Topic Important
to Researchers?
Those of us who study epilepsy and
treat patients must “match modern drug
and surgical therapy with practical
sociopsychological therapy” and be
“concerned not only with turbulent brain
waves but with disturbed emotions . . .”
Lennox (1st AES president), Markham (1953)
In
Gratitude Generous supporters of the Judith Hoyer
Lecture
NINDS
Citizens United for Research in Epilepsy
Epilepsy Foundation
Epilepsy Therapy Project
Tuberous Sclerosis Alliance
American Epilepsy Society
For the first time, the Hoyer Lecture is being
recorded and will be made available on the web
In
Gratitude Artists living with epilepsy around the world
and their physicians
Colleagues
Background to the Art
From the Storm (1993);
toured US, Canada,
Australia (IEC, 1995)
Collection now ~1,300
pieces from 60 artists
Overview
The day-to-day impact of epilepsy
Experiencing seizures and treatments
Mood disorders
Impact on parents
Living with seizures and the diagnosis
Leading a happy and fulfilling life
A musical segue
Experiencing Seizures
and Treatment
What do people perceive and feel
during seizures?
Experiencing Seizures
and Treatment
Subjective seizure experiences influence
what having epilepsy means to a PWE
Available research is limited and based on
personal accounts, as well as ictal EEG and
functional imaging
Experiencing Seizures
and Treatment
Visual auras such as static, flashing,
or moving lights in different shapes
and colors reflect activation of primary
visual cortex and contiguous visual
association areas (Foldvary-Schaefer
et al., 2011)
Experiencing Seizures
and Treatment
Facial metamorphopsia (faces appear
distorted) has been localized to the
face recognition region (Nass et al.,
1985)
Experiencing Seizures
and Treatment
Autoscopy (eg, out-of-body illusion)
arises from temporo-parietal regions
(Anzellotti et al., 2011, Blanke et al.,
2005)
Experiencing Seizures
and Treatment
What do people perceive and feel
during the postictal period?
Experiencing Seizures
and Treatment
•Postictal symptoms often have a significant
impact on QOL
•Cognitive/emotional: Memory loss,
confusion, depression and sadness, fear,
frustration, shame and embarrassment
•Physical: Injuries, exhaustion, sleepiness,
headache, nausea, weakness
Experiencing Seizures
and Treatment
•Relatively little research has been done to
understand the mechanisms of postictal
symptoms and to identify potential
treatments
Experiencing Seizures
and Treatment
43% of patients with drug-resistant
epilepsy experienced a median of 5
symptoms of depression with median
duration of 24 hours after more than
half of their seizures; 13% had
postictal suicidal ideation (Kanner et
al., 2004)
“After I have a seizure, I get an overwhelming sense that everything I
know intellectually
to be in the present is distant in time and space, like the sort of sense
associated with the recollection of an old memory. I have a powerful
sense of anguish, pain, and loneliness.”
Experiencing Seizures
and Treatment
How do AED side effects impact daily
life?
Experiencing Seizures
and Treatment
AED side effects have a significant
impact on QOL, often more so than
seizures (Fisher et al., 2000; Toledano et
al, 2008)
In a study of over 5,000 PWE, 88% had
at least one side effect (Baker et al.,
1997)
Mood Disorders
What are the interrelationships
between depression and epilepsy, and
how does depression affect the lives
of persons with epilepsy?
Mood Disorders
Patients with depressive disorders (DD) have a 3-
to 7-fold higher risk of developing epilepsy
(Forsgren & Nystrom, 1999; Hesdorffer et al., 2000,
2006; Tellez-Zentano et al., 2007), especially drug-
resistant epilepsy (Hitiris et al., 2007)
DD occur in 20-55% of patients with drug-
resistant epilepsy and 3-9% of patients with full
seizure control (Crail-Melendez et al, 2011)
DD are under-recognized and undertreated in
PWE
Mood Disorders
Potential pathogenic mechanisms to account
for the bidirectional relationship (Kanner, 2011)
Hyperactive HPA axis
Disturbances in serotonergic,
noradrenergic, GABAergic and
glutamatergic systems
Brain structural changes
Mood Disorders
Comorbid depression often coexists with
anxiety, and both are associated with poorer
health-related QOL in PWE (Cramer et al,
2009; Johnson et al, 2004), including seniors
(Mclaughlin et al., 2010)
Impact on QOL exceeds that of seizures
(Johnson et al, 2004; Lehrner et al., 1999;
Perrine et al., 1995)
Mood Disorders
Suicide is one of the most common causes
of death among PWE (Nilsson et al., 1997;
Rafnusson et al., 2001)
Risk is elevated 29-fold in presence of
mood disorder and is also significantly
increased in the first 6 months after
epilepsy is diagnosed (Christensen et al.,
2007)
Impact on Parents
What is the impact of a child’s
epilepsy on his or her parents?
Impact on Parents
Parents may be terrified by watching their child
seize and think that their child has died or will die
(Besag et al., 2005)
Parents struggle with fear, stress and depression
(Ferro et al., 2011; Rodenburg et al., 2007) and
have concerns about navigating the healthcare
system, being an advocate and the changing
roles of family members (McNelis et al., 2007)
Stained glass pyramids by Trish Barnes in memory of her
son Kevin Mateczun, who drowned 10 years ago from a
seizure while swimming. Kevin would have turned 27 next
week. Through these pyramids, Trish hopes to help raise
money for epilepsy research.
Living with Epilepsy
How pervasive and impactful are
perceived/felt and enacted stigma in
the lives of persons with epilepsy?
Living with Epilepsy
In a study of >5,000 PWE, over half
felt stigmatized by their epilepsy
(Baker et al., 1997)
Perceived and enacted stigma
reduce self-esteem and negatively
impact QOL (Jacoby, 2002; Jacoby et
al., 2005; MacLeod et al., 2003)
Aubry. La Danse de Saint Guy. 1823.
Living with Epilepsy
Where is the locus of control for
persons with epilepsy and what is its
relationship to mood, self-mastery,
and QOL?
Living with Epilepsy
Locus of control (Mclaughlin et al.,
2010)
Internal: the belief that one has
control over important events and
experiences in life
External: Luck, others or powerful
forces control one’s life
Living with Epilepsy
Patients with strong perceptions of
external locus of control were more
likely to have drug-resistant epilepsy
and high anxiety scores on the
Hospital Anxiety and Depression scale
(Asadi-Pooya et al., 2007)
Living with Epilepsy
Self-mastery and self-efficacy are
markers for internal locus of control
Self-mastery mediates the correlation
between epilepsy severity and QOL (Amir
et al., 1999)
Self-efficacy measures predict QOL
(Gramstad et al., 2001)
Shadows of the Past
by Jim Chambliss
Puzzled by Jim Chambliss
Discovering the Source by Jim
Chambliss
Leading a Fulfilling Life
How can persons with epilepsy live
to their full potential and lead a happy
and fulfilling life?
Leading a Fulfilling Life
An excellent quality of life is possible for
PWE, especially those with well-
controlled seizures (Jacoby, 1992)
Efforts to understand how all PWE can
achieve wellbeing and happiness are just
now getting underway (Sherman, 2009)
Summary The art of persons living with epilepsy
inspires us to more completely understand the
full day-to-day impact of epilepsy, and what is
possible to achieve
We must increase and accelerate this
research, so that someday soon, each PWE
will be able to live to their full potential, free of
the medical and psychosocial consequences
of epilepsy
A Musical Segue
Music too can inspire us and broaden our
perspectives on epilepsy and its personal
impact
Please welcome Cynthia Folio, PhD,
Associate Professor of Music Theory at the
Boyer College of Music and Dance at Temple
University in Philadelphia, and parent of a
child with epilepsy.
The Baltimore and AES
Premiere of
Cynthia Folio’s
When The Spirit Catches You
Performed by
Grammy-Nominated
Relache Ensemble