OBJECTIVES: To assess the burden of illness and unmet need in patients with drug-resistant focal-onset seizures in epilepsy.

METHODS: A targeted literature review of the burden of illness associated with focal-onset seizures in epilepsy, was carried out. This aimed to identify publications reporting the following: epidemiological burden, clinical burden, humanistic burden, economic burden, and unmet need.

RESULTS: Focal-onset seizures affect around 1.5 million people in the EU5 and make up nearly 70% of prevalent epilepsy cases; approximately 40% of cases are drug-resistant after treatment with two anti-seizure medications (ASMs). The probability of achieving seizure freedom decreases substantially with each additional ASM. After three attempted ASMs, 2.12% of patients manage to achieve seizure control. Epilepsy patients with drug-resistant focal-onset seizures are associated with increased mortality compared with patients that are seizure-free, with standardised mortality ratios higher for those who continue to seize (3.3, 95% CI 2.6–4.4) compared to those achieving seizure freedom two years after diagnosis (1.4, 95% CI 0.8–2.3). Patients who fail to achieve seizure-freedom for ≥1 year show a significantly lower preference-based Health-related quality of life (HRQoL) compared to those who do. Medical, psychiatric, and cognitive co-morbidities are associated with uncontrolled focal-onset seizures, with common occurrence of injuries during seizures, such as fractures, head injury and open wounds. Epilepsy requires long-term treatment with drug-resistant epilepsies accounting for high per-patient costs. Hospitalisations and ASMs are the main cost drivers in patient management, as well as indirect costs, with unemployment rates in drug-resistant patients nearly 30% higher, compared to a control population.

CONCLUSIONS: These data highlight a substantial burden of illness and unmet need in patients with drug-resistant focal-onset seizures. Sub-optimal treatment options result in reduced quality of life and a large economic burden, and as a result, the prioritisation of this condition is necessary to address this pressing public health concern.