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Chronic drug resistant epilepsy is a disabling condition that impairs quality of life. 1 It is associated with an increased incidence of psychiatric and psychological morbidity 2 especially anxiety and depression. 3 Its sufferers are stigmatised, 4 have low self esteem, 5 are socially disadvantaged, and are less likely to be employed. 1 6
For patients with drug resistant epilepsy, surgery may abolish seizures in up to two thirds of cases shown to be suitable for surgery, 7 8 but it is a destructive procedure, carrying small risks of death or permanent neurological deficit: hemiparesis, hemianopia, dysphasia, or memory problems. Freedom from seizures is presumed to improve quality of life, but some patients have difficulty adapting to freedom from seizures, 9 whereas others experience surgical complications which may be as disabling as chronic epilepsy. Therefore, there is a need for more sensitive measures of postoperative outcome, including psychosocial functioning and quality of life. 10
Health related quality of life reflects the impact of a disease and its treatment on a person's physical, social, and psychological wellbeing. The impact of chronic illness on health related quality of life varies between conditions and, therefore, disease specific measures are likely to be more sensitive to these effects than generic measures. 11 Some studies report that good psychosocial outcome is dependent on being completely seizure free postoperatively, 12-14 suggesting that patients with postoperative seizures, even at reduced frequency, may have a worse outcome compared with their preoperative baseline status. 15 These studies used generic measures or measures which may not be sensitive to the changes experienced by surgically treated patients. More recent studies using validated quality of life measures specifically developed for use in epilepsy (epilepsy surgery inventory 55 (ESI 55)) have found that quality of life significantly improves for seizure free patients but also to a lesser extent in patients having auras only, compared with those with ongoing seizures postoperatively. 16-18 Recently, Vickrey et al reported significant improvements on five of 11 scales of the ESI 55 but no improvement on the other six, in surgically treated compared with medically treated patients evaluated between 1974 and 1990. 19
During the past five years, we have developed and refined a health related quality of life model for patients with...