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
