Abstracts

Rationale: Functional [psychogenic non-epileptic] seizures cause significant long-term disability and clinicians offer differing views on the proper role for work restrictions and qualifications for disability benefits in this population. We assess the views of perceived disability and work limitations by people living with active functional seizures.

Methods: Between 4/29/2020 and 1/13/2021 an open-access 23-item internet survey was conducted via FNDHope.org; allowing for self-reporting by people living with functional seizures on the following topics: work difficulties, work restrictions, qualifications for disability benefits, length of disability eligibility, and necessity of special working accommodations. Demographic information was also collected, including age, gender, gender identity, seizure frequency, employment status, and employment type.

Results: 118 responses were received, of which 92 (84.4%) completed the majority ( >50%) of the survey. The average age of the participants was 37.6 yrs +/- 13.5 (range 18-67); 91.7% (n=100) of the participants were female and 8.3% (n=9) male; median functional seizure frequency was 17 per month (IQR=20). 40.8% of the participants (n=40) were employed, 38.7% (n=38) were unemployed, and 20.4% (n=20) were students or volunteer workers. 87.9% (n=80) reported personal difficulty at work and 99% (n=96) perceived that other people with active functional seizures would also experience difficulties in the workplace; especially if working in jobs that involve driving or operating heavy machinery, safety of others’ lives, jobs involving weapons, jobs interacting with many people, and jobs with high levels of stress. The majority, 70.7% (n=65) of the participants, felt that at least some work restrictions should apply to people living with active functional seizures. 64.1% (n=59) of the participants felt that people with functional seizures should qualify for disability benefits, at least in certain high-risk lines of work, and another 34.8% (n=32) indicated that work accommodations or a new job compatible with functional seizures was more appropriate. Of those who felt that people with functional seizures should qualify for disability benefits, 60.3% (n=35) thought they should remain eligible for as long as they are symptomatic from their seizures, 37.9% (n=22) felt that disability benefits should apply lifelong and 1.7% (n=1) felt that a fixed and limited period of eligibility was more appropriate.

Conclusions: This study suggests that many people with active functional seizures experience difficulty with work and are concerned about their personal safety and the safety of others in the workplace. These findings may inform clinicians and policymakers considering which, if any, restrictions or work accommodations might be appropriate for patients with functional seizures. Further studies to include the opinions of people with a documented diagnosis of functional seizures as well as their families and employers on these important issues are warranted.

Funding: Please list any funding that was received in support of this abstract.: None.