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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