Objective: This study aimed to evaluate the quality of life (QOL) in children with epilepsy and their caregivers, as well as the caregiver burden, through a secondary analysis of a cross-sectional online survey in Japan.
Methods: Eligible participants were caregivers of children (aged < 18 years) diagnosed with epilepsy. Children's QOL was measured using the daily living subset of the Japanese version of the Quality of Life in Children with Epilepsy (QOLCE-Js52). Caregiver QOL and burden were measured using the physical component summary (PCS) and mental component summary (MCS) of the Short Form-8 (SF-8) and the short Japanese version of the Zarit Caregiver Burden Interview (J-ZBI_8).
Results: Between March 2023 and May 2023, 1,147 caregivers completed the survey. Most caregivers (n = 1,144, 99.7 %) were parents. The mean (standard deviation [SD]) QOLCE-Js52 score was 68.3 (14.2). The mean (SD) scores of the PCS and MCS of the SF-8 were 46.5 (4.5) and 43.7 (5.1), respectively, which were significantly lower than those of the general Japanese population (p < 0.001 for both means). The mean (SD) J-ZBI_8 score was 4.9 (7.1), with 13.2 % of caregivers scoring at least 13, a predictor of depression. Multivariable regression analysis showed that disability was a significant risk factor for lower QOL and increased caregiver burden (p < 0.001). Frequent seizures, emergency transportation, and longer epilepsy duration were associated with poorer QOL in children and caregivers.
Conclusion: Risk factors, such as emergency transport, may be mitigated by rescue medication in non-hospital settings.
Keywords: Caregivers; Cross-sectional study; Epilepsy; Pediatrics; Quality of life; Risk factors.
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