The quality of life (QoL) of caregivers who look after individuals with drug-resistant focal-onset seizures (FOS) can be significantly affected by their caregiving responsibilities. This is widely recognized by various health technology assessment bodies, including the National Institute for Health and Care Excellence. The aim of this study was to assess the QoL and to generate health-related utility data for individuals caring for adults with drug-resistant FOS. This project will provide critical information on an often neglected and undervalued aspect of epilepsy.

An online survey including questions on sociodemographic characteristics, caregiver burden and productivity, the EQ-5D-5L, and the Care Related Quality of Life (CarerQol-7D) was administered to caregivers of individuals with drug-resistant FOS in the United Kingdom.

The analysis included 86 caregivers. The majority were men aged between 25 and 34 years whose caring responsibilities ranged from 25 to 34 hours per week. In the previous 28 days, most individuals they cared for experienced four FOS, with the longest seizure-free period ranging from 6 to 15 days. The patients had previously been prescribed at least four anti-seizure medications.

The caregivers’ mean EQ-5D-5L score was 0.66 (range -0.19 to 1), whilst the mean CarerQol-7D score was 71 (range 21 to 100). The most affected dimension of the EQ-5D-5L was self-care, while the most affected dimension of the CarerQol-7D was physical functioning.

Caring for people with drug-resistant FOS has a negative impact on the QoL of caregivers, particularly in the domains of self-care and physical functioning.