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Quality of Life & Epilepsy

Quality of Life & Epilepsy. Orrin Devinsky, M.D. The Traditional View. Medical Education - MD perspective Medical literature, clinical experience Disorders - signs & symptoms Evaluation - history, PE, Lab Therapy - studies of medical outcome. QOL: A Different View.

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Quality of Life & Epilepsy

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

  2. The Traditional View • Medical Education - MD perspective • Medical literature, clinical experience • Disorders - signs & symptoms • Evaluation - history, PE, Lab • Therapy - studies of medical outcome

  3. QOL: A 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

  4. QOL: 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

  5. Epilepsy & The Individual • Seizures • Premonitory, ictal, postictal effects • Frequency, clustering, duration, intensity • Fear, stigma • AEDs • Social: Independence, self-esteem, education, employment, driving

  6. A 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

  7. 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

  8. Cognitive & Behavioral Changes in Epilepsy: 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

  9. Seizure Burden: The Great Lie • Are complex partial seizures bad? • Memory - long-term consequences • Personality changes • Affective changes • Psychosis • Are tonic-clonic seizures bad? • You bet!

  10. Epilepsy & Progressive Cognitive/Behavioral Decline • Does it occur? • If so, how often? • Who is at greatest risk? • Different Pathogenic Factors • postictal & interictal effects • different seizure types • extratemporal foci • medications

  11. Epilepsy: Progressive Cognitive 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

  12. Why Measure Quality of Life • 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

  13. AEDs 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

  14. QOL and Endocrine Issues • Endocrine effects on seizure control • Epilepsy-related effects on fertility, pregnancy outcome, parenting • Genetic factors • AED effects on libido, endocrine function, development

  15. QOL and Neuroprotection • 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?

  16. SUDEP Epidemiology SUDEP Incidence (per 1000 person-years)

  17. Risk factors for SUDEP: VEEG & Witnessed Cases • 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

  18. Risk factors for SUDEP: Case- 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

  19. QOL & Epilepsy • Inventories (QOLIEs, Liverpool) now commonly used in research • We need to bring QOL into the office, into our patient’s lives

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