Do We Practice What We Preach? Examining Barriers to Timely Epilepsy Surgery Referrals

Abstract

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

Namal U. Seneviratne

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, 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%). About 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 antiseizure 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 and 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 a better understanding of the guidelines suggests that the increased education efforts should be targeted at nonepileptologists.

Introduction

Epilepsy surgery remains underutilized as a gold-standard, cost-effective treatment for medically refractory focal epilepsy. Nearly two decades after the American Academy of Neurology recommended early referral of drug-resistant patients to specialized epilepsy centers, and the International League Against Epilepsy (ILAE) clarified the definition of “drug-resistant epilepsy,” we still see minimal progress.^1,2 In the United States, the overall surgical rate declined by approximately 25% while the number of accredited epilepsy centers and epileptologists has increased.^3,4 The pathway to epilepsy surgery begins with a timely referral by the treating neurologist to a comprehensive epilepsy center. The surgical therapies commission of the ILAE has published explicit guidelines on the timing of referral based on an expert consensus; however, neurologists continue to express hesitation in early referral for presurgical assessment. ⁵

The highlighted study attempts to understand these referral barriers in the United States. Using an adapted version of a Canadian survey by Roberts et al, the authors found a gap between knowledge and practice. Although neurologists expressed confidence in epilepsy surgery and demonstrated adequate knowledge of the recommended timing for referrals, many continue to delay the referral process. This disconnect appears to stem from several factors, including uncertainty about surgical candidacy criteria, particularly regarding the frequency of seizures and the threshold for trying additional antiseizure medications (ASMs) before considering surgery. This therapeutic inertia occurs as clinicians may prefer adjusting medications which is a straightforward and familiar process compared to the time and resources required for a surgical work up. Furthermore, physicians hesitate to refer patients who lack strong social or financial support systems. This form of gatekeeper bias often stems from a perceived lack of generalizability of consensus guidelines—where physicians believe that their specific patient may not fully benefit from expert recommendations due to unique personal or socioeconomic circumstances. Compounding this issue is the limited literature on seizure control, neuropsychological outcomes, and social recovery in patients from lower socioeconomic strata that lack the support systems necessary to manage their pre- and postoperative care effectively. ⁶ The study also found the referral gaps did not correlate with years since training and were expressed by epilepsy specialists and nonepileptologists alike.

Although this study was conducted in a single, metropolitan, academic center its findings echo those from similar surveys conducted in other developed countries, highlighting that these barriers are universal. ⁷ Addressing the discrepancies in knowledge and practice requires a structured approach to improve the translation of guidelines into clinical care.

The Consolidated Framework for Implementation Research (CFIR), a core tool in implementation science, provides a structured approach to address gaps by categorizing implementation challenges into five domains: intervention characteristics, inner setting, outer setting, individual characteristics, and process. ⁸ Applying CFIR to the survey results can clarify why guidelines are underimplemented.

Intervention-related characteristics: These are constructs about the evidence strength and local adaptability of the recommendation. Physicians generally agree that failing two ASMs creates a candidate for surgery. Yet, the perceived relative advantage of trying additional ASM combinations, especially when they occasionally result in temporary seizure control, often delays surgical referrals. This is more apparent in patients with less severe disease or lower seizure frequencies. Comprehensive educational programs and user-friendly online tools and reminders in electronic medical record systems aimed at neurologists might mitigate this hesitation by emphasizing the risks of delaying surgery.^5,9

Inner setting: This includes the setting in which the recommendation is implemented and its recipients. In high-income countries, a lack of predefined referral pathways and limited collaboration between regional providers and specialized centers create difficulties. Rural patients, racial minorities, and individuals from lower socioeconomic backgrounds face additional obstacles, with limited data on their postoperative outcomes. ¹⁰ A patient-centered model that addresses barriers such as beliefs, costs, and fears of surgery is essential. Drawing on successful models like stroke referral systems, a tiered network could channel patients from general neurologists to specialized epilepsy centers. ¹¹ Telemedicine could also improve access, especially in underserved areas. ¹²

Individual characteristics: These include patient-centered sociocultural attitudes, beliefs toward surgery, and physician-centered lack of motivation or incentives in early referrals. The survey identified financial, housing, transportation insecurity, and persons who were caregivers for others to suffer delayed referrals. Addressing these will require coordinated changes including physician incentives for early referral, educational initiatives and patient groups for persons with epilepsy, and culturally sensitive patient engagement strategies.

In summary, effective implementation requires comprehensive surveys covering patient and physician perspectives, careful planning of referral pathways, and ongoing evaluation of the systems. This iterative approach can ensure that guidelines are better integrated into practice resulting in increased epilepsy surgery referrals.