What does it mean to live with epilepsy? Burden of illness from the patient perspective.

objectiveTo examine the real-world experience, comorbidities, and mental health of patients with epilepsy (PwE) who are currently receiving antiseizure medication (ASM) treatment.

methodsA web-enabled survey of PwE was conducted from July-September 2023. Patients were recruited via patient panels or physician referrals. US residents, ≥18 years old, with physician-confirmed diagnosis of epilepsy for ≥1 year, self-reported focal seizures, ≥1 seizure per month, past/present use of ≥2 ASMs, and currently receiving an ASM for ≥1 month, were eligible. Self-reported aspects of the treatment journey and disease burden were examined, including four validated patient-reported outcome measures: Quality of Life in Epilepsy Inventory-10 (QOLIE-10), Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder-7 (GAD-7), and Work Productivity and Activity Impairment questionnaire (WPAI). Healthcare resource utilization and perceived levels of caregiver burden were also assessed.

resultsOf 170 patients surveyed, 66.5% reported >1 seizure per month, 75.3% rated their seizures as moderate-to-highly severe, and 72.9% reported ≥3 non-seizure symptoms despite ASM treatment. The most common non-seizure symptoms were mood issues (76.5%), fatigue/lack of energy (72.4%), and problems with sleep (68.8%). Anxiety (49.4%), migraines (40.6%), and depression (40.0%) were the top reported physician-diagnosed comorbidities. The mean QOLIE-10 score was 44.5 (SD, 17.5), indicative of a notable impact on QoL. Overall, 63.5% and 46.5% of patients exhibited moderate-to-severe depression and anxiety based on PHQ-9 and GAD-7, respectively. Using the WPAI, 60.6% mean work productivity loss was observed, driven by presenteeism. Patients averaged 9.4 outpatient visits and 2.8 emergency visits and/or hospitalizations annually. Of patients requiring caregivers (60.6%, n = 103), 68.9% agreed day-to-day and emotional demands from their epilepsy negatively impacted their family/caregivers. SIGNIFICANCE: Collectively, these findings provide a broad perspective of the burden of illness experienced by PwE who are currently receiving treatment and demonstrate unmet needs for additional therapies that can improve patient experience. PLAIN LANGUAGE SUMMARY: The primary treatment goals for epilepsy are to maximize seizure control, reduce side effects of medication, and improve quality of life. In our study, US patients with epilepsy currently using antiseizure medications used a survey to report their perspectives on the epilepsy treatment journey and ongoing burdens from the disease. We found that despite receiving treatment, patients still had a high frequency/severity of seizures, were dissatisfied with medication side effects, reported depression, anxiety, and reduced work productivity, and perceived that their disease had negative impacts on caregivers. New medications that improve the experience for patients with epilepsy are needed.