Surveying neurologist perspectives and knowledge of epilepsy surgery to identify barriers to surgery referral.

OBJECTIVE: Epilepsy surgery is an effective means of treating medically refractory epilepsy (MRE), but it remains underused. We aimed to analyze the perspectives and knowledge of referring neurologists in the New York metropolitan area, who serve a large epilepsy population. METHODS: We adapted a previous Canadian survey by Roberts et al. (2015), adding questions regarding demographic descriptors, insurance coverage, training and practice details, and perceived social barriers for patients. We surveyed neurologists directly affiliated with Montefiore Medical Center and those referring to Montefiore's Comprehensive Epilepsy Center. Participants had 10 weeks to fill out an online Qualtrics survey with weekly reminders. RESULTS: Of 117 neurologists contacted, 51 eligible neurologists completed the survey (63.8% Montefiore, 35.0% referring group). A high proportion of the results were from epilepsy-trained individuals (41.2%) and neurologists who graduated residency ≤19 years ago (80.4%). 80.4% of respondents felt that epilepsy surgery is safe, but only 56.9% would refer a patient for surgical workup after two failed trials of anti-seizure medications. Epileptologists and providers with a larger volume of epilepsy patients and electroencephalogram readings had better knowledge of the epilepsy surgery workup guidelines. When asked to rank social barriers to patients receiving surgery, participants were most concerned about lack of social support, financial insecurity, and a patient's dual role as a caregiver. SIGNIFICANCE: Our study suggests continued reluctance of neurologists regarding epilepsy surgery, and deficiencies in the knowledge and adherence to the recommended guidelines. In the context of prior studies, these results showed improved understanding of the definition of MRE (80.4%) and an increased likelihood to refer eligible patients as early as possible (78.4%) in line with current consensus recommendations. The finding that epilepsy-trained and more epilepsy/electroencephalogram-facing neurologists showed better understanding of the guidelines suggests that increased education efforts should be targeted at non-epileptologists. PLAIN LANGUAGE SUMMARY: Our study asked New York City doctors about their approach to epilepsy surgery. Many do not consider it as early as they could in treatment plans. The doctors with extra epilepsy training were better at knowing when to consider surgery.

Readability and content gaps in online epilepsy surgery materials as potential health literacy and shared-decision-making barriers.

OBJECTIVE: Epilepsy surgery is an effective albeit underused treatment for refractory epilepsy, and online materials are vital to patient understanding of the complex process. Our goal is to analyze the readability and content inclusion of online patient health education materials designed for epilepsy surgery. METHODS: A private browser setting was used on Google and Bing to identify the top 100 search results for the terms "epilepsy+surgery". Scientific papers, insurance pages, pay-wall access sites, and non-text content were excluded. The website text was reformatted to exclude graphics, contact information, links, and headers. Readability metrics were calculated using an online tool. Text content was analyzed for inclusion of important concepts (pre-surgical evaluation, complications, risks of continued seizures, types of surgery, complimentary diagrams/audiovisual material). Comparison of readability and content inclusion was performed as a function of organization types (epilepsy center, community health organization, pediatric-specific) and location (region, country). RESULTS: Browser search yielded 82 distinct websites with information regarding epilepsy surgery, with 98.7% of websites exceeding the recommended 6th-grade reading level for health information. Epilepsy centers had significantly worse readability (Flesch-Kincaid Grade Level (FKGL) P < 0.01 and Flesch Reading Ease (FRE) P < 0.05). Content analysis showed that only 37% of websites discuss surgical side effects and only 23% mention the risks of continued seizures. Epilepsy centers were less likely to report information on surgical side effects (P < 0.001). UK-based websites had better readability (FKGL P < 0.01 and FRE P < 0.01) and were more likely to discuss side effects (P = 0.01) compared to US-based websites. SIGNIFICANCE: The majority of online health content is overly complex and relatively incomplete in multiple key areas important to health literacy and understanding of surgical candidacy. Our findings suggest academic organizations, including level 4 epilepsy centers, need to simplify and broaden online education resources. More comprehensive, publicly accessible, and readable information may lead to better-shared decision-making.