Authors :
Karl Waldron, University of Pennsylvania; Shawniqua Williams, University of Pennsylvania; Ryan Archer, University of Pennsylvania; Leah Blank, University of Pennsylvania; Susan Monroe, Brookdale Community College; Hanli Huang, Brookdale Community College;
Rationale: As many as one third of patients with epilepsy have drug resistant seizures and may be candidates for epilepsy surgery. However, many eligible patients experience significant delays to surgical evaluation. African Americans in particular experience longer time-to-surgery than non-minority populations (McClelland, Guo, and Okuyemi 2010; Betjemann et al. 2013). Prior studies also suggest that African Americans report higher levels of distrust in their medical providers and are less likely to opt for surgery even when deemed good candidates (Anderson et al. 2013; Swarztrauber, Dewar, and Engel 2003). We sought to explore attitudes toward surgery as a function of race among epilepsy patients in a tertiary care setting. Methods: We modified a survey that was previously validated in a Canadian tertiary care outpatient clinic (Hrazdil et al. 2013) for use in an American population. Surveys were conducted in person using a structured interview format. We used a 5-point Likert scale to assess patients’ attitudes towards doctors and surgery as a function of self-reported race. Wilcoxson rank-sum test was used for statistical comparisons between groups. Spearman’s rank correlation was used to test associations between responses. Results: Thirty-six patients were included in our preliminary analysis. This patient population self-reported as 58% Caucasian, 33% African American, and 8% other races. Twenty-one (58%) had refractory seizures. Decreased trust in physicians was associated with increased perception of the danger of epilepsy surgery (p = 0.04). African American patients reported less trust in their physician than Caucasians (p = 0.08), but in our small sample size this finding was not statistically significant.
Conclusions: Our observations suggest that among epilepsy patients in an urban tertiary healthcare setting, trust in one’s doctor contributes to the overall perception of the dangers of brain surgery. Caucasians and African Americans showed differing levels of trust in their epilepsy doctors, and their perception of the dangers of epilepsy surgery mirrored these trends. Racial context impacts the doctor-patient relationship and may play a role in the decision to pursue definitive therapy. Funding: This work was supported by NIH grant NS91006 and by the Mirowski Family Foundation.