1. Quality of Life & Epilepsy 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 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 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