November 26, 2019

Parent Reported Health Related Quality of Life (HRQoL) and Behavior in Young People with Epilepsy Before and Two Years After Epilepsy Surgery

PURPOSE: The aim of this study was to compare parent-reported Health Related Quality of Life (HRQoL) and behavior of young people before (baseline) and two years after pediatric epilepsy surgery (follow-up).

METHODS: The parents of 107 children who underwent epilepsy surgery completed surveys focusing on different aspects of child HRQoL and behavior at baseline and follow-up. Parents of children with multiple disabilities (n = 27) completed five additional questions focusing on child HRQoL. Changes in scores between baseline and follow-up were compared using Wilcoxon signed-rank tests. Factors associated with changes in scores were analyzed using linear regression.

RESULTS: HRQoL and behavior were significantly improved at follow-up (p < 0.001). HRQoL was also significantly improved for children with multiple disabilities (p = 0.003). Factors independently associated with improvement in HRQoL on multivariable analysis were lower baseline scores (p < 0.001), seizure-free status (p < 0.001) and improvement in behavior (p = 0.022). Factors independently associated with improvement in behavior were higher baseline difficulties (p < 0.001), reduction in antiepileptic drug (AED) usage, (p < 0.001), seizure-free status (p = 0.04), younger age (p = 0.03), and improvements in HRQoL (p = 0.028).

CONCLUSION: Parent rated HRQoL and behavior had improved two years after epilepsy surgery. Seizure freedom was associated with both improvements in HRQoL and behavior. Additionally, a reduction in AED usage contributed to reduced behavioral difficulties. All children undergoing epilepsy surgery should undergo assessment of HRQoL and behavior at baseline and follow-up.

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