Abstracts

Rationale: To evaluate how adults living with epilepsy, caregivers, and healthcare professionals (HCPs) view seizure freedom, seizure control, and treatment goals. Methods: An online survey of 400 adult patients with epilepsy (generalized, partial- or focal-onset, unknown onset), 201 caregivers, 258 HCPs (96 epileptologists, 112 general neurologists, and 50 advanced practice providers) was conducted by Kantar Health in 2019. The 10-part survey included questions about seizure freedom, definitions of control, and treatment goals. Results: Patients were predominantly women (76%) with a mean age of 40 years (range, 18-74). On average, patients had epilepsy for 16 years and reported 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. Only 29% of patients and 37% of caregivers said they had heard or seen the term seizure freedom whereas 65% of HCPs reported using that term with patients and caregivers. When seizure freedom was defined as 0 seizures in the past 12 months, 61% of patients and 45% of HCPs thought it was always a reasonable goal (Table 1). HCPs reported that about half (46%-52%) of their patients are seizure free, whereas only 13% of sampled patients (including caregivers’ patients) had 0 seizures in the last 12 months. Among HCPs, 35% somewhat or strongly agreed with the statement “There is too much hype about seizure freedom.” Physicians reported treating an average of 72 patients with focal- or partial-onset seizures; of these, 47% were seizure free, 33% were “in control,” and 20% were uncontrolled. Of the 33% who were “in control,” 63% were having 1-12 seizures/yr; 22%, 13-24 seizures/yr; 10%, 25-48 seizures/yr; and 5%, >48 seizures/yr. When patients were asked how many seizures per year would be considered “in control,” the mean of all respondents was 3.6/yr. When asked about definitions of acceptable seizure control, the responses among patients and HCPs varied. Among both patients and HCPs, ~63% agreed that an acceptable definition of seizure control is that seizures do not impact daily life. By contrast, 45% of HCPs vs 36% of patients agreed that ≤1 to 2 seizures/yr and 65% of HCPs vs. 52% of patients agreed that the ability to work were acceptable definitions of control. Treatment goals reported by ≥60% of patients as being extremely important included finding a treatment that works (68%), having fewer seizures (67%), no longer having big seizures (64%), being able to feel in control (64%), seizure freedom (62%), and being able to live independently (60%). Conclusions: Given the potentially discordant perceptions between patients and HCPs about whether or not seizure freedom is a reasonable goal and the wide range of definitions of seizure control and treatment goals that are important to patients, there may be an opportunity for patients and HCPs to work more closely to align on individualized treatment goals. Funding: SK Life Science, Inc.