IntroductionFocal-onset-seizures (FOS) are commonly experienced by individuals with epilepsy and have a significant impact on quality of life (QoL). This study aimed to develop a mapping algorithm to predict the 6 dimension short form questionnaire (SF-6D) values in adults with FOS for use in economic evaluations of a new treatment, cenobamate.MethodsAn online survey, including questions on sociodemographic, disease history, the short form (SF) 36, and an epilepsy-specific measure (quality of life in epilepsy problems questionnaire, QOLIE-31-P) was administered to individuals with drug-resistant FOS in the top 5 EU countries (UK, Spain, Germany, Italy and France). A range of regression models were fitted to SF-6D scores including direct and response mapping approaches.ResultsThe analysis included 361 people. In the previous 28 days, the mean number of FOS experienced was three, (range: 0–43) and longest seizure-free period was 14 days (range: 1–28). Mean responses on all SF-36 dimensions were lower than general population norms. Mean SF-6D and QOLIE-31-P scores were 0.584 and 45.72, respectively. The best performing model was the ordinary least squares (OLS), with root mean squared error (RMSE) and mean absolute error (MAE) values of 0.0977 and 0.0742, respectively. Explanatory variables which best predicted SF-6D included seizure frequency, seizure severity, seizure freedom, and age.ConclusionsPeople with drug-resistant FOS have poor QoL. The mapping algorithm enables the prediction of SF-6D values from clinical outcomes in individuals with drug-resistant FOS. It can be applied to outcome data from clinical trials to facilitate cost-utility analysis.
IntroductionThe 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.MethodsAn 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.ResultsThe 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.ConclusionsCaring 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.
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