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

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.