Health-related quality of life (HRQOL) of primary caregivers of children with epilepsy in the United Kingdom

Purpose: The primary aim of this study was to describe both the mental and physical health-related quality of life (HRQOL) of primary caregivers of children with epilepsy (CWE) in the UK. A secondary aim was to explore which child-related, epilepsy-related and caregiver psychosocial variables were associated with these types of HRQOL. Methods: Caregivers of CWE in the UK were recruited primarily using social media and completed the following measures: SF-36v2™ (a measure of HRQOL), Insomnia Severity Index (ISI), Multidimensional Scale of Perceived Social Support (MSPSS), Brief- Coping Orientation to Problems Experienced (COPE), Depression, Anxiety and Stress Scale - 21 Items (DASS-21) and the Brief Resilience Scale (BRS). Caregivers also provided clinical and demographic data. Factors associated with mental component scores (MCS) and physical component scores (PCS) on the SF-36 were identified using hierarchical linear regression models. Results: One hundred and twenty-seven caregivers (female 124) participated. Many caregivers reported high levels of sleep difficulties (73%), stress (68%), depression (67%) and anxiety (61%) on standardised measures. The mean PCS was 50.8 (SD 9.5 SD 13.2) and thus in line with population norms (mean 50, SD 10), but MCS was 32.9 and thus nearly 2 SDs below population norms implying a very significant impact on caregiver mental wellbeing. Having more sleep difficulties (p < 0.001), lower resilience (p < 0.001), and having a child with a lower quality of life (p < 0.001) were associated with lower MCS scores. Having lower perceived social support (p = 0.042), a child with Autism (p = 0.004) and a child with younger age at seizure onset (p = 0.003) were associated with lower PCS scores. Conclusion: Having a child with epilepsy negatively impacts mental health-related HRQOL, but not physical health-related HRQOL. Factors associated with lower mental health-related QOL include sleep difficulties and lower levels of resilience and these areas potential targets for future intervention studies to improve mental health aspects of HRQOL for caregivers of CWE.