Health-related quality of life and emotional wellbeing improve in parents after their children have undergone epilepsy surgery - A prospective population-based study

- The impact of surgery on parents' HRQoL and emotional wellbeing is largely positive.
- Scores on some HRQoL domains were still below population norms at follow-up.
- More knowledge is needed about the kind of supports parents will benefit from.

The objective was to compare parental health-related quality of life (HRQoL), anxiety, and depression at baseline and 2 years after epilepsy surgery in a population-based series of children and young people who underwent surgery between 1995 and 1999 and to compare with population norms. Fifty mothers and 44 fathers of 50 children and young people (age: 1-20 years) completed the Medical Outcome Study 36-item Short Form Health Survey (SF-36) and Hospital Anxiety and Depression (HAD) scale at baseline and at follow-up. Changes in SF-36 and HAD scores between baseline and follow-up were compared using Wilcoxon signed rank test. Scores on the SF-36 were compared with a reference sample from the Swedish population using the Mann Whitney U test. Factors associated with changes in SF-36 and HAD scores were analyzed using regression analysis. On the SF-36, the Physical Component Summary (PCS) scores were not significantly different between baseline and follow-up for mothers (p = 0.177) or fathers (p = 0.054). Mental Component Summary (MCS) scores improved significantly for mothers (p = 0.008) and fathers (p < 0.001). Mothers' baseline scores on seven of eight SF-36 domains were significantly lower than reference values. Scores at follow-up improved on these seven domains, but on three domains (primarily mental health domains), scores remained significantly lower than reference values. Fathers' baseline scores on four of eight SF-36 domains were significantly lower than reference values, and scores at follow-up remained significantly lower on the four primarily mental health domains. The proportions of mothers and fathers classified as HAD-A and HAD-D cases decreased at follow-up but did not reach statistical significance. Child epilepsy variables were in the main not associated with parental outcomes, but a greater reduction in AEDs was associated with a greater reduction in PCS scores. Parents of young people/children with seizure-free outcome were significantly more likely to have a reduction in depression scores than parents of young people/children with continued seizures. Many aspects of HRQoL and emotional wellbeing improved at 2-year follow-up for parents after epilepsy surgery on their children. There is a need to comprehensively identify factors associated with changes in parental HRQoL and emotional wellbeing to provide adequate support.