Quality of Life & Epilepsy Quality of Life & Epilepsy Orrin Devinsky, M.D.

Quality of Life Quality of Life & &

Epilepsy Epilepsy

Orrin Devinsky, M.D.

The Traditional ViewThe Traditional View

Medical Education - MD perspective Medical literature, clinical experience

Disorders - signs & symptoms Evaluation - history, PE, Lab Therapy - studies of medical

outcome

QOL: QOL: A Different ViewA Different View

QOL - Defined by patient not MD Should patient’s perspective be

filtered through “objective medical lens”? - NO

QOL is about listening, changing perspective, and using the patients’ view as the ultimate measure of outcome

QOL: QOL: Relevance to Epilepsy?Relevance to Epilepsy?

QOL issues most relevant to chronic disorders, problems beyond disease symptoms

Epilepsy is the paradigm of such a disorder

Seizures are infrequent,AED effects & psychosocial problems are chronic

Epilepsy & The Epilepsy & The IndividualIndividual

Seizures Premonitory, ictal, postictal effects Frequency, clustering, duration,

intensity Fear, stigma

AEDs Social: Independence, self-esteem,

education, employment, driving

A Case StudyA Case Study

29 y.o. woman monthly CPS, rare GTCs Routine 6 mo. Checkup: complains of some

tiredness, blurred vision, nausea Exam - mild nystagmus, tremor Labs - slightly elevated LFTs

MD’s perspective - doing great Woman’s perspective - doing poorly; not

driving, underemployed, fearful of seizures, troubled by AEs

PGE and Behavior:Absence Epilepsy

(Wirrell et al, 1997)

56 absence epilepsy v. 61 JRA patient Pts with absence epilepsy had more

academic, personal, and behavioral disorders (p<.001)

Those with ongoing seizures had worse outcomes

Cognitive & Behavioral Cognitive & Behavioral Changes in Epilepsy: Changes in Epilepsy:

Diagnosis Diagnosis Must diagnose to treat Cognitive-behavioral disorders are

often overlooked - “under appreciated” Not spontaneously reported Not asked about by MD/RN Noted, but considered minor Noted, but considered untreatable

Seizure Burden: Seizure Burden: The Great LieThe Great Lie

Are complex partial seizures bad? Memory - long-term consequences Personality changes Affective changes Psychosis

Are tonic-clonic seizures bad? You bet!

Epilepsy & Progressive Epilepsy & Progressive Cognitive/Behavioral Cognitive/Behavioral

DeclineDecline Does it occur? If so, how often? Who is at greatest risk? Different Pathogenic Factors

postictal & interictal effects different seizure types extratemporal foci medications

Epilepsy: Progressive Epilepsy: Progressive Cognitive DeclineCognitive Decline

Tuberous Sclerosis (Gomez)

Relation of Seizure and MR Of 140 pts with Szs - 89 MR Of 19 pts w/o Szs - none MR Age of seizure onset and MR related:

MR in 72/79 with seizures before age 1y MR in 6/25 with seizures after age 4 y

? Role of CNS pathology vs. Seizures ? Younger brain protected or at risk

Why Measure Quality of Why Measure Quality of LifeLife

An eye-opening study - Croog et al, 1982, NEJM Captopril vs. propranolol Dogma - beta-blockers are safer than

ACE inhibitors Patients on ACE-inhibitors had better

QOL -- less sedation, depression and sexual dysfunction

AEDs and QOLAEDs and QOL

AEDs effects on QOL Dose related Idiosyncratic Individual sensitivity Cognitive & Behavioral effects

Hard to measure - executive & social function

“Taking meds”, “Being sick” Balance vs. Seizures effects on QOL

QOL and Endocrine QOL and Endocrine IssuesIssues

Endocrine effects on seizure control

Epilepsy-related effects on fertility, pregnancy outcome, parenting

Genetic factors AED effects on libido, endocrine

function, development

QOL and QOL and NeuroprotectionNeuroprotection

How do we weigh progressive decline in cognitive and behavioral function?

How do we identify those patients at risk for the Gower’s effect (seizures beget seizures)?

What are the risks of neuroprotection?

SUDEP EpidemiologySUDEP EpidemiologyS

UD

EP In

cid

ence

(p

er

10

00 p

ers

on

-years

)

Risk factors for SUDEP: Risk factors for SUDEP: VEEG & Witnessed VEEG & Witnessed CasesCases

Terminal seizure, especially TCS Multiple TCSs in a day Postictal respiratory problems Prone position Seizure in sleep

Reviewed in Tomson et al Lancet Neurol 2008

Risk factors for SUDEP: Risk factors for SUDEP: Case- Control StudiesCase- Control Studies

Seizures - frequency, TCS frequency, TCS in last year, history of TCS, terminal seizure

Lack of supervision Young adults Early epilepsy onset Long epilepsy duration AED polytherapy Lack of AED use or subtherapeutic AED levels

Reviewed in Tomson et al Lancet Neurol 2008

QOL & EpilepsyQOL & Epilepsy

Inventories (QOLIEs, Liverpool) now commonly used in research

We need to bring QOL into the office, into our patient’s lives