Patient perceptions and barriers to epilepsy surgery: Evaluation in a large health region

- We examined patient knowledge and perceptions regarding epilepsy surgery.
- A questionnaire was administered to adult outpatients with focal epilepsy.
- Patients tended to underestimate the risks of ongoing seizures.
- Patients tended to overestimate the risk of epilepsy surgery.
- Patients born outside of Canada had greater barriers to epilepsy surgery.

PurposeDespite evidence that carefully selected patients with refractory focal epilepsy benefit from epilepsy surgery, significant delays remain. We examined patient knowledge and perceptions regarding epilepsy surgery.MethodsA 5-minute questionnaire was administered to consecutive adults with focal epilepsy seen in the epilepsy clinic in a large Canadian health region. Survey items assessed the following: (1) knowledge of surgical options, (2) perceptions about the risks of surgery vs. ongoing seizures, (3) disease disability, (4) treatment goals, and (5) demographic and socioeconomic variables. Patient responses were compiled to calculate a “Barriers to Epilepsy Surgery Composite” (BESC) score.ResultsOf 129 eligible patients, 107 completed the questionnaire (response rate: 83%). The average BESC score was 60/100. Apprehension about epilepsy surgery was less likely among patients who had previously undergone epilepsy surgery and those born in Canada.DiscussionPeople with epilepsy often have hindering perceptions that can contribute to delays in surgical care.