Parent reported health related quality of life (HRQoL) and behaviour in young people with epilepsy before and two years after epilepsy surgery.

ABSTRACT

PURPOSE: The aim of this study was to compare parent-reported Health Related Quality of Life (HRQoL) and behaviour of young people before (baseline) and two years after paediatric epilepsy surgery (follow-up). METHODS: The parents of 107 children who underwent epilepsy surgery completed surveys focussing on different aspects of child HRQoL and behaviour at baseline and follow-up. Parents of children with multiple disabilities (n = 27) completed five additional questions focussing 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 behaviour 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 behaviour (p = 0.022). Factors independently associated with improvement in behaviour 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 behaviour had improved two years after epilepsy surgery. Seizure freedom was associated with both improvements in HRQoL and behaviour. Additionally, a reduction in AED usage contributed to reduced behavioural difficulties. All children undergoing epilepsy surgery should undergo assessment of HRQoL and behaviour at baseline and follow-up.