Authors :
Presenting Author: Clark Huynh, Student – Elk Grove High School
Dorris Luong, N.P. – Kaiser Permanente Sacramento Medical Center
Leo Chen, MD – Kaiser Permanganate Sacramento Medical Center
Mariel Velez, MD, PhD – Kaiser Permanganate Sacramento Medical Center
Ning Zhong, MD, PhD – Kaiser Permanente Sacramento Medical Center
Rationale:
Epilepsy surgery is a proven and effective treatment for appropriately selected patients with drug-resistant focal epilepsy. While referral delays are often cited as a major barrier, these were minimized within the integrated health system. Nonetheless, a substantial proportion of eligible patients continued to decline surgery or further surgical evaluation. Understanding both patient- and provider-related factors is essential to developing targeted strategies that may increase surgical acceptance and uptake.
Methods:
We conducted a retrospective cohort study of patients who underwent noninvasive presurgical evaluation between March 2016 and December 2024. Eligible patients had confirmed drug-resistant focal epilepsy and were considered surgical candidates following EMU evaluation. Patients with primary generalized epilepsy, incomplete evaluation, inadequate follow-up, or a diagnosis of psychogenic non-epileptic seizures (PNES) were excluded. Data collected included demographics, clinical characteristics, imaging, EEG findings, surgical conference recommendations, and documented reasons for surgical decline from both patient and physician perspectives. Descriptive statistics and nonparametric analyses were used to summarize the findings.
Results:
Of 637 patients monitored in the EMU, 77 met inclusion criteria, with a nearly even gender distribution (39 female, 38 male). From the patient perspective, the most frequently reported barrier to pursuing epilepsy surgery was apprehension or fear of surgery or the surgical workup (44.2%), followed by lack of knowledge (11.7%). Less common barriers included socioeconomic factors (6.5%), cultural beliefs (5.2%), and unrealistic expectations (2.6%). From the physician standpoint, psychiatric comorbidities (11.7%; e.g., uncontrolled anxiety, intermittent psychosis, anger dysregulation) were notable reasons for not proceeding. In addition, a small subset of patients with medical comorbidities (5.2%) were advised against surgery. Notably, 13 patients (16.9%) achieved improved seizure control following ongoing effort of anti-seizure medication adjustments while surgical workup, of whom 6 were treated with Cenobamate.
Conclusions: Unlike much of the published literature, where delayed referral and limited access are the predominant barriers to epilepsy surgery, our integrated health care system cohort—where referral delays were minimized—revealed a different pattern. The leading reasons for not pursuing surgery after EMU non-invasive evaluation were patient apprehension or fear regarding surgery despite intensive informative discussion, limited knowledge, and psychiatric comorbidities. Consistent with prior reports, cultural or personal beliefs also influenced decisions. In systems where access barriers are reduced, improving surgical uptake may depend more on targeted patient education, enhanced counseling, and integrated psychiatric support rather than on addressing referral delays. Furthermore, the finding that some patients achieved better seizure control after targeted ASM adjustments—particularly with Cenobamate—underscores the value of ongoing individualized medical optimization during the surgical evaluation process.
Funding: none