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

Abstract

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.

Family resources moderate the relationship between seizure control and health‐related quality of life in children with drug‐resistant epilepsy

“…This should be considered in future research, given recent evidence demonstrating that improvement in behavior predicts improvement in HRQOL in children with DRE 2 years after surgery. 41 Finally, although the level of family resources was associated with a change in the strength of association between seizure outcome and HRQOL at 1 year, we cannot confirm whether the level of family resources caused this change due to the observational nature of our data.…”

Method considerations and study protocol for a Nordic multi‐centre prospective study on outcomes in rare paediatric epilepsy surgery subgroups

“…Factors associated with behavioural improvements were among others younger age at operation and more difficulties at baseline, in addition to seizure freedom and reduction of ASM. These are encouraging findings that point to a significant potential for improvement in children undergoing the procedures which are the topic of this study 30 …”

Quantifying and reporting outcome measures in pediatric epilepsy surgery: A systematic review

“…A total of 36 different named neuropsychological outcome metrics were used, the Wechsler Intelligence Scale for Children (WISC) and its various versions being the most common ( n = 15, 47%) 23–32 . Eight (25%) of these studies did not specify how their neuropsychological outcomes were measured but generically stated a postoperative neuropsychological assessment was performed 33–40 …”

“…[23][24][25][26][27][28][29][30][31][32] Eight (25%) of these studies did not specify how their neuropsychological outcomes were measured but generically stated a postoperative neuropsychological assessment was performed. [33][34][35][36][37][38][39][40] Of the 36 named metrics, 6 (17%) have been validated and 3 (8%) had reliability studies performed (see Table 2) for pediatric patients with epilepsy. Therefore, 16 (50%) of the studies reporting neuropsychological outcomes included at least one validated outcome metric and only 14 studies (44%) included at least one reliable neuropsychological metric.…”