Abstracts

Rationale: Despite existing knowledge of the burden of illness experienced by patients living with epilepsy, there remains a gap in our understanding of the real-world mental health burden from patients’ perspectives, supported by validated patient-reported outcome measures (PROMs).

Methods: A cross-sectional web-enabled survey of patients with epilepsy reporting FOS was conducted from July to September 2023 to examine their comprehensive burden of illness. Patients were recruited via patient panels or point-of-care physician referrals. Eligible participants were United States residents and 18 to 80 years old, with a self-reported physician diagnosis of FOS for ≥1 year, ≥1 seizure per month, past/present use of > 2 ASMs, and currently receiving an ASM for > 1 month. Here, we report data on the mental health burden collected via questionnaire that included custom questions and validated PROMs, the Patient Health Questionnaire-9 (PHQ-9) to assess depression-related symptoms, and the Generalized Anxiety Disorder-7 (GAD-7) to assess anxiety-related symptoms.


Results: A total of 170 patients reporting a diagnosis of FOS completed the survey; 66.5% (113/170) reported having seizures more than once a month, and 72.9% (124/170) reported experiencing at least 3 non-seizure-related symptoms despite currently being treated with ASMs. Mood issues (e.g., depression, anxiety) were the most common non-seizure symptoms, with 76.5% (130/170) of patients reporting symptoms and 53.1% (69/130) indicating them to be highly severe. The mean (SD) PHQ-9 depression severity score for all patients was 11.2 (5.2) out of 27. 63.5% (108/170) of patients had a PHQ-9 score ≥10, suggestive of moderate to severe depression, although 52.8% (57/108) had no prior physician diagnosis of depression. In addition, 20.6% of patients reported having suicidal ideation or thoughts of self-harm in more than half of the days over the past two weeks, and 4.7% reported having these thoughts every day. The mean (SD) GAD-7 score for all patients was 8.9 (4.8) out of 21. 46.5% (79/170) had a GAD-7 score of ≥10, suggestive of moderate to severe generalized anxiety, although 40.5% (32/79) reported no prior physician diagnosis of anxiety. In addition, 37.7% of patients reported their anxiety symptoms made it very difficult or extremely difficult to do their work, take care of things at home, or get along with other people.


Conclusions: Patients with epilepsy reporting FOS experience considerable mental health burden in addition to their recurring seizure burden. The high positive screening rates for depression and anxiety, in contrast to lower self-reported physician-diagnosed depression and anxiety, suggest mental health burden may be under-recognized in patients with epilepsy reporting FOS.

Funding: This study was funded by Xenon Pharmaceuticals Inc., Vancouver, BC, Canada