Surveying neurologist perspectives and knowledge of epilepsy surgery to identify barriers to surgery referral (2024)

Associated Data

Supplementary Materials

Abstract

Keywords: epilepsy surgery, neurologist perspectives, provider education, social determinants, systematic barriers

1. INTRODUCTION

Medically refractory epilepsy (MRE) impacts around a third of individuals with epilepsy and is defined as the failure of two adequate trials of antiseizure medication (ASM).^{1, 2} Epilepsy surgery in appropriately selected patients has been shown to significantly decrease seizure burden with relatively few side effects.^{3, 4} However, while many people with MRE are eligible for surgical workup, there remains a large gap in epilepsy surgery care with few patients completing their evaluation and receiving surgery.^{5, 6, 7} Efforts to identify and remove barriers to treatment are targeted at multiple stakeholders along the path to epilepsy surgery, including patient beliefs, systemic healthcare barriers, and referring neurologists.

Previous studies have shown that relatively few neurologists are aware of epilepsy surgery referral guidelines, and many do not adequately refer patients for epilepsy surgery workup.^{8, 9, 10, 11} Neurologists were shown to overestimate the threshold for referring to epilepsy surgery on multiple fronts, such as seizure frequency and medication failure.⁸ Some neurologists even perceived epilepsy surgery as dangerous to the patient.⁹

Social and structural barriers to epilepsy surgery require further elucidation, with one retrospective analysis showing that employed patients were 4.2 times more likely not to proceed with surgery.¹² Neurologists provide insight into patient barriers given their close relationships with their patients, with another study showing that neurologists identified inadequate health care resources as the most significant barrier to epilepsy surgery.⁸

Only one of the previous neurologist surveys studied neurologists in the United States, and no survey has ever been done in the Northeast region of the United States.⁹ Compared to the rest of the United States, the Northeast region is notable for dense diverse populations and large metropolitan settings.¹³ New York state specifically has some of the highest numbers of epilepsy cases in the country, making understanding of neurologist perspectives in this region vital.¹⁴ Our goal with this survey is to capture the epilepsy surgery perspectives and practices of neurologists within our center or who have referred their patients within the New York metropolitan area. Building on previous work, we adapted the most recent neurologist perspectives survey by Roberts etal.⁸ and additionally assessed demographic identifiers and United States‐specific barriers.

2. METHODS

3. RESULTS

One hundred and seventeen neurologists were contacted in the Montefiore network and referring practices. Six total referring practices were contacted for survey participation, of which two did not reply after repeated follow‐up. After establishing approval from the director at the remaining four, surveys were sent to all active neurologists at the practice. After exclusion of neurologists who do not treat patients with epilepsy/seizures, 98 physicians were eligible (58 from Montefiore, 40 from referring groups). Ultimately, 51 eligible physicians completed the survey with a completion rate of 52.0%, with a slightly higher proportion of Montefiore (63.8%) than referring group (35.0%) physicians completing the survey. Demographic data showed primarily White‐identifying individuals (72.5%) filled out the survey, and 41.2% of respondents were Epileptologists (Table1). A majority of participants graduated from residency ≤19 years ago (80.4%). Non‐respondent demographic data could not be evaluated, as the non‐respondents elected to not respond to the optional demographic questions that followed survey refusal.

Proportions of responses associated with no barrier to epilepsy care are shown in Table2. Overall, 80.4% of respondents felt that epilepsy surgery was either very safe or moderately safe, and the same proportion correctly identified that a failure of two ASMs need to be failed before considering epilepsy surgery. Despite this, only 56.9% of respondents said they would refer a patient to epilepsy surgery after the failure of two adequate trials of ASMs. When asked about seizure frequency threshold for epilepsy surgery referral, only 62.7% responded that any frequency is appropriate for referral.

Responses differentiated by neurologist demographics showed that epileptologists, providers who saw ≥20 epilepsy patients per month, and providers who read ≥5 EEGs per month were more likely than non‐epilepsy specialists to respond that they were more knowledgeable about epilepsy surgery (epileptologist p < 0.001, ≥20 patients p = 0.022, ≥5 EEGs p < 0.001) and that they were familiar with the American Academy of Neurology content guidelines (epileptologist p < 0.001, ≥20 patients p = 0.006, ≥5 EEGs p < 0.001; Figure1). They were also more likely to correctly identify that two trials of adequate ASMs were reason for epilepsy surgery referral (epileptologist p < 0.010, ≥20 patients p = 0.010, ≥5 EEGs p = 0.004). Other neurologist descriptors, including demographic parameters, years since residency, and patient age group, had no effect on epilepsy surgery knowledge and practices.

For the ranking of the importance of social barriers identified on the Montefiore Social Determinants of Health Screener, lack of social support had the highest median rank of 2, with 82.4% of participants ranking it within the top three barriers (Table3). It was followed by financial insecurity (median of 3) and role in caring for others (median of 4).

4. DISCUSSION

With improved imaging technology and surgical techniques over the last few decades, epilepsy surgery has proven to be an increasingly effective method of treating MRE that should be considered early in a patient's care.^{15, 16, 17} Our study showed that neurologists in the New York metropolitan area have a positive perspective of epilepsy surgery but have referral guideline knowledge gaps and practice misalignment that may interfere with prompt surgical referrals and workup. A similar result was seen in a Swedish survey that showed a positive outlook on epilepsy surgery, but only 17.9% of physicians referring appropriately.¹¹ This suggests that faith in the surgery is not an obstacle to care, but further investigation needs to be done into the moderate guideline knowledge and lower practice of guidelines. Although newer neurology residency graduates are expected to learn the guidelines along with their teaching, our study found no significant difference in knowledge based on residency graduation year. However, recent literature shows that neurologists with fewer years of clinical experience were more likely to refer patients to epilepsy surgery,¹⁸ suggesting that residency training may not be prioritized as a locus for improved professional development interventions for refractory epilepsy and epilepsy surgery referral education. Future expanded neurologist surveys of neurologist practice perspective should continue assessing for years of experience, as our survey was limited by sample size. The results of our survey indicate that neurologists remain hesitant to refer patients to surgical workup when necessary, as nearly half of the participants would try more than two ASM regimens and would have a certain seizure frequency threshold to begin surgical workup. It should be noted that the survey did not ask the reasoning for a gap between a subject's known guideline understanding and practice of said guideline; therefore, further investigation into this gap is worth further study. Our results are comparable to current observational literature, demonstrating the need for neurologists to feel more comfortable in recommending epilepsy surgery workup when necessary. This study serves as a pilot for this region of the United States, and plans for an expanded multi‐institutional survey are being considered.

There have been several other studies evaluating neurologist perspectives about epilepsy surgery.^{8, 9, 10, 11} Given that our survey was based off of the Roberts etal. questionnaire, we reviewed their results and population for differences from our findings. It is important to recognize that our study had a higher proportion of epileptologists participating than the Roberts etal.'s (2015) study (41.2% compared to 20.4%) which potentially impacted results. The other three studies did not collect data on the epilepsy specialization of their subjects.^{9, 10, 11} Regarding the number of ASMs to be considered drug resistant, 80.4% correctly answered two while 51.4% answered correctly in the Roberts etal.'s study, 17.9% answered correctly in the Kumlien etal.'s (2010) study, and 14% in the Hakimi etal.'s (2008) study. To build on these previous studies' findings, we added an open‐ended question asking participants how many ASM trials they would give before considering surgery, and only 56.9% said they would undergo two or fewer trials (Table2). Despite the high percent of respondents correctly identifying the definition of MRE, within our sample we still see hesitance to follow practice guidelines. Another category where responses to our survey showed increasing selection of no‐barrier options was the time with MRE before surgical referral (78.4% vs. 54.1% in Roberts etal. selecting “as early as possible”).⁸ Conversely, Roberts etal. had a higher proportion of no‐barrier answers regarding epilepsy surgery as a last resort (70.0% vs. 33.3% in our sample). To be more consistent with current consensus among epileptologists, we only allowed “strongly disagree” as a no‐barrier answer given the finality of the “last resort” wording. This limits any comparison with the Roberts etal. question on this concept, as they allowed both the “somewhat” and “strongly disagree” responses as no‐barrier. If the same categorization was used in our study, then 76.5% of participants somewhat or strongly agree, more closely resembling the original study, but in contrast to current recommendation.⁷ Within our cohort 62.7% of respondents would refer patients regardless of seizure frequency, marginally higher than the 56.6% in Roberts etal. Within the Hakimi etal. cohort, only 10% of respondents did not view seizure frequency as being a criteria for epilepsy surgery referral, with as low as 3% considering surgery in a patient that had seizures once a year. Notably in the Jehi etal.'s consensus recommendations, seizures frequency is not a referral criterion for surgical evaluation.⁷ Our findings may suggest improvements in understanding of MRE since previous evaluations within the neurology and epilepsy professional communities. This could be the result of improved professional development and trainee education in the last decade.

Our survey assessed several other areas outside the original study, including demographic data, perception of insurance as a barrier, and understanding of surgical side effects. The ranking of the social determinants of health as barriers is unique to our study and provides insight on neurologists' understanding of patient struggles. The Bronx, where many survey participants are employed, has poor health outcomes that are often preventable in nature.¹⁹ Additionally, people facing socioeconomic disparities have been shown to have difficulty accessing comprehensive epilepsy care.²⁰ Our study results show that social support and financial security were perceived to be most important in successful surgical workup. This can be implemented into patient care, as unmet social needs identified by hospital screeners can be brought up in conversation by the neurologist and social worker (Supplement S2).

One notable finding is that epileptologists and neurologists with more epilepsy patient care experiences (epilepsy patient volume and EEG reading volume) had significantly better knowledge and understanding of epilepsy surgery referral guidelines than non‐epileptologists. Educational interventions on surgical guidelines have been previously considered, and this finding highlights a specific locus for further education targeted at non‐epileptologists.²¹ We recommend epilepsy surgery guidelines as topics for grand rounds, and to have lecture series targeted at improving surgical referral guideline adherence and engagement across the broader referral base of each center's encatchment area. Specific education sessions should be considered and developed with the goal of reaching providers outside academic hospitals, as community neurologists may have more difficulty accessing this information and limited interactions with epileptologist colleagues. Additionally, the use of online tools, such as the Canadian Appropriateness of Epilepsy Surgery (CASES) tool, should be encouraged for neurologists who are unsure whether to refer their patient for epilepsy surgery to help reach an evidence‐based decision.²²

5. CONCLUSION

Elucidating and eliminating barriers to epilepsy surgery is a broad task involving perceptive analysis at multiple levels of the surgical workup process. In this study, we looked specifically at the role of the referring neurologist and found many still express hesitance with referring patients to epilepsy surgery. However, our study characterized participants by various demographic and training factors and found that epilepsy‐trained individuals, and individuals who see more epilepsy patients and read more EEGs are more comfortable with the epilepsy surgery process and have a greater understanding of its success and safety. This finding allows educators to focus efforts on those without epilepsy training. As providers continue to streamline and demystify the epilepsy surgery process, it is vital that we continue to educate one another to provide the best possible patient care.

AUTHOR CONTRIBUTIONS

NUS and SYH with DJC in the study design and survey adaptation. NUS and SYH coordinating survey outreach, distribution, and arranged with participants and regional partners the survey scheduling. NUS and SYH contributed to the analysis and drafting of the manuscript. DJC served as the primary mentor and contributed to the writing and editing of the manuscript.

CONFLICT OF INTEREST STATEMENT

D.J.C. has received personal compensation in the range of $0–$499 for serving as a Consultant for Independent Medical Consultants, and personal compensation in the range of $0–$499 for serving as a Consultant for Atheneum Partners, and personal compensation in the range of $10 000–$49 999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for American Academy of Neurology, and research support from Genentech, and research support from Psi Upsilon Foundation Inc., and has stock in Aidin Inc. The remaining authors have no conflicts of interest.

ETHICS STATEMENT

We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

Supporting information

ACKNOWLEDGMENTS

We thank Dr. Sheryl Haut, Dr. Alexis Boro, and Dr. Solomon Moshe (Montefiore Medical Center) for their support on this project, including manuscript review and feedback. This work was supported by the EMPIRE grant (#4630290) and institutional funding from the Einstein Research Fellowship (NUS) and clinical research rotations (SYH).

Notes

Seneviratne NU, Ho SY, Correa DJ. Surveying neurologist perspectives and knowledge of epilepsy surgery to identify barriers to surgery referral. Epilepsia Open. 2024;9:960–968. 10.1002/epi4.12925 [PMC free article] [PubMed] [CrossRef] [Google Scholar]

REFERENCES