Introduction: Although surgical management of drug-resistant epilepsy is significantly underutilized, a representative population of potential surgical candidates has not been used to assess patient desire as a potential barrier. This study recruits patients from a community organization with a high disease burden to evaluate the impact of “basic knowledge translation (KT)” on interest in surgery. Initial data from an ongoing large-scale multilanguage study across many Canadian organizations utilizing a video-based “comprehensive KT” initiative is presented as well.
Methods: Online surveys were administered to potential respondents in series, with those from the first organization of contact receiving a “basic KT” initiative and immediate reassessment of interest. Clients from other organizations are currently being randomized to “comprehensive KT” or no intervention and interest reassessment is delayed in time. Questions assess demographics, epilepsy burden, epilepsy surgery knowledge, and pre- and post-intervention interest.
Results: Of 48 “basic KT” recipients, 67% had failed over two medications and 78% experienced seizures within the last year. The rate of disinterest improved following information about surgical benefits (26 to 16%, p=0.0001) but this was no longer significant after subsequently receiving surgical risk information (26% to 20%). Overall, clients had conservative views regarding surgical benefits and overestimated opinions of the risks. Of 19 “comprehensive KT” recipients recruited to date, the intervention group had increased interest by 15% following intervention while the control group had no significant change (3% decrease in interest).
Conclusions: A significant portion of potential epilepsy surgery candidates overestimate risks, underestimate benefits, and do not desire surgery. “Basic KT” of surgical benefits mobilized patient interest, which was lost with subsequent crude descriptions of risks. Initial data following “comprehensive KT” suggests that viewing an online visual comprehensive educational module increases interest while including sensitive discussion of risks. Together, this underlies the importance of careful patient counseling.
Patient Care: Given the significant underutilization of surgery for drug-resistant epilepsy, initiatives to support early referral for epilepsy surgery and as well as increased resource allocation for epilepsy monitoring units will significantly improve care for people with epilepsy. An understanding of patient related barriers and how attitudes towards surgery respond to information about the risks and benefits is crucial in designing initiatives that target primary car providers to promote prompt referral of patients with drug-resistant epilepsy.
Learning Objectives: By the conclusion of this session, participants should be able to: 1) Appreciate barriers towards epilepsy surgery and to understand the rate at which potential candidates are treated, 2) Describe the level of interest in epilepsy surgery among people with seizures and baseline views regarding the risks and benefits of surgery, and 3) Discuss the impacts of knowledge translation techniques on interest in epilepsy surgery and how to use this information in clinical practice.
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