Balancing health literacy about epilepsy surgery in the community

Despite significant underutilization of surgical treatment for drug-resistant epilepsy, no studies have quantified patient desire for surgery within a representative population. The main objective was to determine desire for surgery in a sample with a high proportion of potential candidates to characterize patient-related barriers to the treatment. Secondary objectives included assessing clinical predictors of attitudes toward surgery and evaluating the impact of passive knowledge translation on desire for surgery.

An online survey was administered to all clients connected with a core epilepsy community access center. It obtained information about demographics, clinical characteristics, knowledge of epilepsy surgery, and interest in receiving surgery before and after receiving risk/benefit information about it.

Of 118 potential respondents, 48 (41%) completed the questionnaire, of which 67% had failed more than two AEDs and 78% experienced seizures in the past year. Eleven (26%) were uninterested in receiving surgery at baseline, and this decreased significantly to 7 (16%) following knowledge translation regarding the benefits (p = 0.001). Significance was lost with subsequent complication rate information despite fewer respondents still being uninterested compared to baseline (20% vs. 26%). Having experienced seizures within the past month was correlated with being interested in or undecided regarding surgery at baseline and following all steps of knowledge translation. Subjects had conservative views regarding the benefits of surgery and largely overestimated the risks.

A significant portion of those with active epilepsy in the community do not desire surgical treatment. Passive knowledge translation regarding the risks and benefits enhanced optimistic attitudes and mobilized interest within a subset of participants. Preexisting views regarding the risks of surgery were exaggerated, and analysis suggests that these views can be modified with information about the benefits of surgery. However, exaggerated risk perceptions return following crude descriptions of the risks, underlying the importance of sensitive counseling from primary care physicians.