Abstracts

Rationale: To explore patient, caregiver, and healthcare professional (HCP) perspectives on life challenges faced by adult patients living with epilepsy. Methods: An online survey of 400 adult patients with epilepsy (generalized, partial- or focal-onset, unknown onset), 201 caregivers, and 258 HCPs (96 epileptologists, 112 general neurologists, and 50 advanced practice providers) was conducted by Kantar Health in 2019. One section of the 10-part survey focused on life challenges faced in managing epilepsy, including stressful issues, personal and professional challenges, and impact on life, health, work, emotions, relationships, and goals. Results: Patients and caregivers had a mean age of 40 years (range, 18-74 years for patients; 18-75+ for caregivers), and 76% of both groups were women. Patients had epilepsy for an average of 16 years and were still experiencing ~2 seizures per month. Seventeen percent of patients reported being on their first antiepileptic drug (AED), 25% had changed their AED medication once, and 58% had changed their AED medication at least twice. Among patients, 48% have been diagnosed with anxiety and 43% with depression, with similar rates reported by caregivers (anxiety, 49% and depression, 40%). Among caregivers, 58% ranked emotional/mental strain as the most challenging aspect of being an epilepsy care partner. More than 50% of patients and HCPs reported a very or extremely negative impact of epilepsy on patients' physical, financial, and mental/emotional health. Among patients, nearly half (47%) reported having taken off time from work in the past year because of epilepsy. When asked how disruptive epilepsy is to various aspects of quality of life, not being able to drive had the greatest percentage of respondents among both patients (73%) and HCPs (90%). Epilepsy has substantial effects on patient/caregiver and other relationships (Table 1). Questions about expectations and goals revealed that 64% of patients, 67% of caregivers, and 83% of HCPs somewhat or strongly agreed that patients cannot live at their full potential. Nearly 50% of patients somewhat or strongly agreed that 'I want to live a full life but do not share my real-life goals with my doctors because I think their focus is on clinical data, such as the number and type of seizures I am experiencing.' The majority (81%) of HCPs somewhat or strongly agreed that patients want to live normal full lives but end up not communicating their real-life goals to doctors. Patients (65%) and HCPs (76%) somewhat or strongly agreed that they do not want to change medications due to fear the epilepsy will worsen. Among patients, 67% somewhat or strongly agreed that 'I did not expect to have to go through multiple medications to help control my seizures.' Conclusions: Adults living with epilepsy face major life challenges, yet the majority are afraid to change their AED regimen and many do not report their real-life goals to HCPs. There is an opportunity for patients, caregivers, and HCPs to work together to optimize the AED regimen to support attainment of adult patients' real-life goals. Funding: SK Life Science, Inc.