We conducted a preliminary survey-based study of patients referred for movement disorder evaluation to assess barriers to specialist care and DBS therapy. The survey examined education level, insurance status, comfort in medical settings, and concerns about DBS. Participants were recruited from movement disorder clinics. We compared ethnic minorities (grouped) to Caucasian participants using Fisher's exact tests for categorical variables and Wilcoxon tests for ordinal variables. Given the small sample size, we did not correct for multiple comparisons.

Our cohort included 83 participants: 80.7% Caucasian (n=67), 14.5% ethnic minorities (n=12; including Black, Asian, Hispanic, and Middle Eastern participants), and 4.8% who preferred not to answer (n=4). Ethnic minorities had significantly less education, with 33% having high school or less compared to 8% of Caucasians (p=0.03). Insurance disparities were evident, with ethnic minorities disproportionately holding Medicaid coverage (17% vs 4%) or being self-pay/uninsured (8% vs 0%) compared to Caucasians (p=0.03). Ethnic minorities reported significantly less comfort asking questions in medical settings (p=0.01). Notably, when asked about top concerns regarding DBS, ethnic minorities were more likely to identify cost (50% vs 14%, p=0.01) and recovery time away from work (50% vs 17% p=0.01), while non-minorities cited surgical risk (95% vs 62%,  p=0.03).

This preliminary study reveals that ethnic minorities face multifaceted barriers to accessing DBS therapy, including educational and insurance disparities, discomfort in clinical encounters, and treatment concerns centered on cost and recovery. Targeted interventions including financial counseling and educational outreach are needed to reduce disparities in neurological care.