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  • Health Literacy Regarding Epilepsy Surgery in the Community and the Impact of Knowledge Translation

    Final Number:

    Jeffrey Alexander Zuccato BHSc; Sulaiman Abuhaiba; Taufik Valiante MD, PhD

    Study Design:
    Clinical Trial

    Subject Category:

    Meeting: Congress of Neurological Surgeons 2015 Annual Meeting

    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.

    References: 1. Benifla M, Rutka JT, Otsubo H, et al. Long-term seizure and social outcomes following temporal lobe surgery for intractable epilepsy during childhood. Epilepsy Res 2008;82:133–138. 2. Cohen-Gadol AA, Wilhelmi BG, Collignon F, et al. Long-term outcome of epilepsy surgery among 399 patients with nonlesional seizure foci including mesial temporal lobe sclerosis. J Neurosurg 2006;104:513–524. 3. Dupont S, Tanguy ML, Clemenceau S, et al. Long-term prognosis and psychosocial outcomes after surgery for MTLE. Epilepsia 2006;47:2115–2124. 4. Chin PS, Berg AT, Spencer SS, et al. Patient-perceived impact of resective epilepsy surgery. Neurology 2006;66:1882–1887. 5. Wiebe S, Blume WT, Girvin JP, et al. A randomized, controlled trial of surgery for temporal-lobe epilepsy. N Engl J Med 2001;345:311– 318. 6. Schiltz NK, Koroukian SM, Lhatoo SD, et al. Temporal trends in pre- surgical evaluations and epilepsy surgery in the U.S. from 1998 to 2009. Epilepsy Res 2013;103:270–278. 7. Englot DJ, Ouyang D, Garcia PA, et al. Epilepsy surgery trends in the United States, 1990–2008. Neurology 2012;78:1200–1206. 8. Ontario Health Technology Advisory Committee. OHTAC recommendation: care of drug-refractory epilepsy in Ontario. Toronto, Ontario, Canada: Health Quality Ontario; 2012. 9. Erba G, Messina P, Pupillo E, et al. Acceptance of epilepsy surgery among adults with epilepsy–what do patients think? Epilepsy Behav 2012;24:352–358.

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