Quality of life following epilepsy surgery for children with tuberous sclerosis complex

Jonathan Roth*, Adeolu Olasunkanmi, William S. MacAllister, Emily Weil, Catherine C. Uy, Orrin Devinsky, Howard L. Weiner

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

34 Scopus citations

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.

Original languageEnglish
Pages (from-to)561-565
Number of pages5
JournalEpilepsy and Behavior
Volume20
Issue number3
DOIs
StatePublished - Mar 2011
Externally publishedYes

Keywords

  • Multistage surgeries
  • Quality of life
  • Refractory epilepsy
  • Tuberous sclerosis

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