Quality of life following epilepsy surgery for children with tuberous sclerosis complex |
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Authors: | Roth Jonathan Olasunkanmi Adeolu MacAllister William S Weil Emily Uy Catherine C Devinsky Orrin Weiner Howard L |
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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 |
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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. |
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