Transcript Conference
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 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: 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 Individual Seizures Premonitory, ictal, postictal effects Frequency, clustering, duration, intensity Fear, stigma AEDs Social: Independence, self-esteem, education, employment, driving 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 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 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 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! 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 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 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 AEDs and QOL AEDs effects on QOL Dose related Idiosyncratic Individual sensitivity Cognitive & Behavioral effects Hard to measure - executive & social function “Taking Balance meds”, “Being sick” vs. Seizures effects on QOL 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 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? SUDEP Incidence (per 1000 person-years) SUDEP Epidemiology 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 Neu 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 QOL & Epilepsy Inventories (QOLIEs, Liverpool) now commonly used in research We need to bring QOL into the office, into our patient’s lives