LAUSR

AIM The aim of this study was to capture and measure the impact of caregiving for an adult with uncontrolled drug-resistant focal-onset seizures (FOS) on the caregivers' quality of life (QoL), and to quantify the costs of productivity losses associated with providing informal care in this patient population. METHODS An online survey, which included the EQ-5D-5L, CarerQol-7D and the Work Productivity and Activity Impairment: Specific-Health Problem (WPAI:SHP) questionnaires, was administered to caregivers of individuals with uncontrolled drug-resistant FOS in the United Kingdom (UK), France, Spain, Germany, Italy, and Sweden. RESULTS The study included 345 caregivers. Most were males, aged between 25 to 34 years old whose caring responsibilities took between 15 to 24 hours per week. The caregivers' mean EQ-5D-5L score was 0.6, with 95% confidence intervals (CI) of [0.58, 0.63], whilst the mean CarerQol-7D score was 72.61 [70.46, 74.76]. Caregivers' mental health was the most substantially affected aspect of their QoL. In addition, most caregivers reported to derive some or a lot of fulfilment out of their caregiving tasks. The WPAI:SHP showed that the mean percentage work impairment due to caregiving responsibilities was 63%, [59.75, 66.26]. The mean annualised costs of productivity losses per caregiver was estimated at €14,872 [€11,908; €17,888]. LIMITATIONS One limitation consisted in the use of an online survey instead of a face-to-face interview. However, the medical terms were clearly explained, and examples were provided to help participants to give accurate responses. Another limitation was that the respondents self-reported as caregivers. Efforts were made to mitigate this weakness by using screener questions. CONCLUSION This study found that providing informal care for people with uncontrolled drug-resistant FOS had a negative impact on caregivers' QoL, with mental health being affected the most. However, caregivers found their role fulfilling and had support with their caring tasks.