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

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  • Quality of Life & Epilepsy

    Orrin Devinsky, M.D.

  • The Traditional ViewMedical Education - MD perspective Medical literature, clinical experienceDisorders - signs & symptomsEvaluation - history, PE, LabTherapy - studies of medical outcome

  • QOL: A Different ViewQOL - Defined by patient not MD Should patients perspective be filtered through objective medical lens? - NOQOL is about listening, changing perspective, and using the patients view as the ultimate measure of outcome

  • QOL: Relevance to Epilepsy?QOL issues most relevant to chronic disorders, problems beyond disease symptomsEpilepsy is the paradigm of such a disorderSeizures are infrequent,AED effects & psychosocial problems are chronic

  • Epilepsy & The IndividualSeizures Premonitory, ictal, postictal effectsFrequency, clustering, duration, intensityFear, stigmaAEDsSocial: Independence, self-esteem, education, employment, driving

  • A Case Study29 y.o. woman monthly CPS, rare GTCsRoutine 6 mo. Checkup: complains of some tiredness, blurred vision, nauseaExam - mild nystagmus, tremorLabs - slightly elevated LFTsMDs perspective - doing greatWomans 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 patientPts with absence epilepsy had more academic, personal, and behavioral disorders (p

  • Cognitive & Behavioral Changes in Epilepsy: Diagnosis

    Must diagnose to treatCognitive-behavioral disorders are often overlooked - under appreciatedNot spontaneously reportedNot asked about by MD/RNNoted, but considered minorNoted, but considered untreatable

  • Seizure Burden: The Great Lie

    Are complex partial seizures bad?Memory - long-term consequencesPersonality changesAffective changesPsychosisAre tonic-clonic seizures bad?You bet!

  • Epilepsy & Progressive Cognitive/Behavioral DeclineDoes it occur?If so, how often?Who is at greatest risk?Different Pathogenic Factorspostictal & interictal effectsdifferent seizure typesextratemporal focimedications

  • Epilepsy: Progressive Cognitive DeclineTuberous Sclerosis (Gomez)Relation of Seizure and MROf 140 pts with Szs - 89 MROf 19 pts w/o Szs - none MRAge of seizure onset and MR related:MR in 72/79 with seizures before age 1yMR 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 LifeAn eye-opening study - Croog et al, 1982, NEJMCaptopril vs. propranololDogma - beta-blockers are safer than ACE inhibitorsPatients on ACE-inhibitors had better QOL -- less sedation, depression and sexual dysfunction

  • AEDs and QOLAEDs effects on QOLDose relatedIdiosyncraticIndividual sensitivityCognitive & Behavioral effectsHard to measure - executive & social functionTaking meds, Being sickBalance vs. Seizures effects on QOL

  • QOL and Endocrine IssuesEndocrine effects on seizure controlEpilepsy-related effects on fertility, pregnancy outcome, parentingGenetic factors AED effects on libido, endocrine function, development

  • QOL and NeuroprotectionHow do we weigh progressive decline in cognitive and behavioral function?How do we identify those patients at risk for the Gowers effect (seizures beget seizures)?What are the risks of neuroprotection?

  • SUDEP EpidemiologySUDEP Incidence (per 1000 person-years)

    Chart1

    0.35Ficker et al 1998Ficker et al 1998Ficker et al 1998Ficker et al 1998

    0.09Lhatoo et al 2001Lhatoo et al 2001Lhatoo et al 2001Lhatoo et al 2001

    1.3Jick et al 1992Jick et al 1992Jick et al 1992Jick et al 1992

    0.54Tennis et al 1995Tennis et al 1995Tennis et al 1995Tennis et al 1995

    0.9Terrence et al 1975Terrence et al 1975Terrence et al 1975Terrence et al 1975

    1.9Leestma et al 1984Leestma et al 1984Leestma et al 1984Leestma et al 1984

    2.3Leestma et al 1989Leestma et al 1989Leestma et al 1989Leestma et al 1989

    1.5Langan 1998Langan 1998Langan 1998Langan 1998

    1.3Opeskin et al 2003Opeskin et al 2003Opeskin et al 2003Opeskin et al 2003

    Nilson et al 19991.5Nilson et al 1999Nilson et al 1999Nilson et al 1999

    Mohanraj et al 20061.1Mohanraj et al 2006Mohanraj et al 2006Mohanraj et al 2006

    Walzak et al 20011.2Walzak et al 2001Walzak et al 2001Walzak et al 2001

    Timmings 19932Timmings 1993Timmings 1993Timmings 1993

    Mohanraj et al 20062.5Mohanraj et al 2006Mohanraj et al 2006Mohanraj et al 2006

    Nashef et al 19955.9Nashef et al 1995Nashef et al 1995Nashef et al 1995

    Vlooswijk et al 20071.2Vlooswijk et al 2007Vlooswijk et al 2007Vlooswijk et al 2007

    Klenerman et al 1993Klenerman et al 19932.1Klenerman et al 1993Klenerman et al 1993

    Nashef et al 1995Nashef et al 19953.4Nashef et al 1995Nashef et al 1995

    McKee et al 2000McKee et al 20003.6McKee et al 2000McKee et al 2000

    Racoosin et al 2001Racoosin et al 2001Racoosin et al 20013.8Racoosin et al 2001

    Leetsma et al 1997Leetsma et al 1997Leetsma et al 19973.5Leetsma et al 1997

    Derby et al 1996Derby et al 1996Derby et al 19962.2Derby et al 1996

    Annegers et al 2000Annegers et al 2000Annegers et al 20006Annegers et al 2000

    Dashieff et al 1991Dashieff et al 1991Dashieff et al 1991Dashieff et al 19919.3

    Nilson et al 2003Nilson et al 2003Nilson et al 2003Nilson et al 20036.3

    Sperling et al 2005Sperling et al 2005Sperling et al 2005Sperling et al 20056.3

    Population

    Epilepsy Populations

    Mental Retardation

    Refractory Epilepsy

    Surgical Patients

    Sheet1

    PopulationEpilepsy PopulationsMental RetardationRefractory EpilepsySurgical Patients

    Ficker et al 19980.35

    Lhatoo et al 20010.09

    Jick et al 19921.3

    Tennis et al 19950.54

    Terrence et al 19750.9

    Leestma et al 19841.9

    Leestma et al 19892.3

    Langan 19981.5

    Opeskin et al 20031.3

    Nilson et al 19991.5

    Mohanraj et al 20061.1

    Walzak et al 20011.2

    Timmings 19932

    Mohanraj et al 20062.5

    Nashef et al 19955.9

    Vlooswijk et al 20071.2

    Klenerman et al 19932.1

    Nashef et al 19953.4

    McKee et al 20003.6

    Racoosin et al 20013.8

    Leetsma et al 19973.5

    Derby et al 19962.2

    Annegers et al 20006

    Dashieff et al 19919.3

    Nilson et al 20036.3

    Sperling et al 20056.3

  • Risk factors for SUDEP: VEEG & Witnessed CasesTerminal seizure, especially TCSMultiple TCSs in a dayPostictal respiratory problems Prone positionSeizure in sleepReviewed in Tomson et al Lancet Neurol 2008

  • Risk factors for SUDEP: Case- Control StudiesSeizures - frequency, TCS frequency, TCS in last year, history of TCS, terminal seizureLack of supervisionYoung adultsEarly epilepsy onsetLong epilepsy duration AED polytherapyLack of AED use or subtherapeutic AED levelsReviewed in Tomson et al Lancet Neurol 2008

  • QOL & EpilepsyInventories (QOLIEs, Liverpool) now commonly used in researchWe need to bring QOL into the office, into our patients lives