Perspectives on the burden of drug‐resistant epilepsy and treatment priorities: Findings from a multistakeholder survey

Objective: Drug-resistant epilepsy (DRE) imposes a significant burden on patients and their caregivers. This study aimed to explore the concerns and perceptions of healthcare providers (HCPs), patients, and caregivers regarding the burden of disease and quality of life (QoL) in patients with DRE. Methods: This was a multinational, cross-sectional, online, survey-based study. Participants were HCPs managing at least 30–50 epilepsy patients per month, including ≥10 patients with DRE; patients aged ≥18 years with DRE; and caregivers aged ≥18 years supporting patients with DRE. Data collection was carried out between March and August 2024. Results: In total, 213 stakeholders took part in the survey (146 HCPs, 42 patients, and 25 caregivers); 58% of the HCPs were neurologists and 42% were epileptologists. Caregivers were mainly parents (79%). Patients represented by caregivers were younger (84% vs. 29% aged 18–34 years) and had a higher incidence of seizures (20 vs. 5 seizures per month; p < 0.05) than patient participants. According to all stakeholders, DRE had a significant impact on multiple components of patient QoL, with work capability, psychological well-being, and daily management and logistics the most affected. Significantly fewer HCPs regarded “achieving complete seizure freedom” as of high importance for patients compared with patient participants (p < 0.05) and caregivers (p < 0.05). High satisfaction with current treatment was reported by only 35% of HCPs, 33% of patient participants, and 4% of caregivers. Most stakeholders reported insufficient time during consultations to investigate patients' concerns, and different topics for discussion were prioritized by HCPs and patients/caregivers. Significance: This survey highlighted the continued and multifaceted burden of disease among patients with DRE. While seizure freedom is the ultimate goal of treatment, disparities exist among key stakeholders regarding aims and outcomes of treatment as well as management of expectations. Plain Language Summary: Patients with DRE have epileptic seizures despite receiving medicines to reduce their seizures. This survey shows that DRE places a heavy strain on patients and their carers. Satisfaction with current treatments is low, especially among carers. Patients and carers see stopping all seizures as very important, but doctors tend to rate this as less of a priority; patients and carers are also more open than doctors to using digital tools to improve communication with their doctor. Overall, the differences in expectations and approaches between patients, carers, and doctors may create barriers to improving seizure control.