title: Quality of life following epilepsy surgery for children with tuberous sclerosis complex.
abstract: Parents of children with tuberous sclerosis complex who underwent multistage resections for treatment of refractory seizures were offered a telephone questionnaire regarding quality of life (QOL) of child and family since surgery. Of 53 families, 39 responded. Age at epilepsy onset was birth to 3 months. Average duration of epilepsy before the first surgery was 5.1 years, and average age at surgery was 5.8. The average follow-up was 3.9. Seventy-seven percent had a >90% reduction in disabling seizures. In all outcome categories, 46-85% had at least a moderate improvement in QOL. There was a significant correlation between QOL variables and Engel outcome class. Despite the potential burden posed by the aggressive surgical approach, including multiple surgeries and long hospitalization periods, 94% of parents would choose the same course once again. We conclude that aggressive surgical treatment of tuberous sclerosis complex-related refractory seizures is associated with significant control of epilepsy as well as improved QOL for the patient and family.
authors.affiliation: Division of Pediatric Neurosurgery, Department of Neurosurgery, NYU Langone Medical Center, New York University School of Medicine, New York, NY, USA. jonaroth@gmail.com
authors.forename: Jonathan
authors.initials: J
authors.lastname: Roth
authors.forename: Adeolu
authors.initials: A
authors.lastname: Olasunkanmi
authors.forename: William S
authors.initials: WS
authors.lastname: MacAllister
authors.forename: Emily
authors.initials: E
authors.lastname: Weil
authors.forename: Catherine C
authors.initials: CC
authors.lastname: Uy
authors.forename: Orrin
authors.initials: O
authors.lastname: Devinsky
authors.forename: Howard L
authors.initials: HL
authors.lastname: Weiner
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D004827:Epilepsy / Q000209:etiology / Q000523:psychology / Q000601:surgery; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D009493:Neurosurgery / Q000379:methods*; D010290:Parents / Q000523:psychology; D011788:Quality of Life; D012189:Retrospective Studies; D013223:Statistics as Topic; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D014402:Tuberous Sclerosis / Q000150:complications*