RESEARCH PAPER
Underscore of geographical and referral barriers to deep brain stimulation treatment: A look at Parkinson's and essential tremor patients in Western New York.
Abstract
BACKGROUND: Deep Brain Stimulation (DBS) is an effective treatment for Parkinson's Disease (PD) and Essential Tremor (ET), yet many patients present too late for symptom benefit.
OBJECTIVE: To characterize PD and ET pathway to DBS and identify geographical and socioeconomic disparities in our patient population.
METHODS: We reviewed 170 patients with PD or ET treated with DBS at our institution between 2000-2025; after exclusions 136 remained (prior DBS n = 27; incomplete records n = 7). Data included zip code, symptom onset (SO) date, neurologist visit dates, movement disorder neurologist (MDN) consultation, neurosurgical consultation date, and surgical date. DBS patient counts were normalized to zip code population.
RESULTS: Of 136 patients, 111 had PD and 25 had ET. Time from SO to surgery was significantly longer for ET (28.33 ± 18.82 years) than PD (11.21 ± 7.10 years, p < 0.001). An external neurologist was seen before MDN in 71 (52%) patients. SO to surgery for PD was 11.64 ± 7.31 vs. 8.90 ± 7.50 years (external vs. direct MDN pathway); for ET, 29.49 ± 19.03 vs. 20.60 ± 13.35 years. Higher-income zip codes were significantly overrepresented in the DBS population.
CONCLUSION: ET patients experienced primary delays at initial neurologist contact (approximately 29 years); PD patients faced substantial delays from external neurologist to MDN (6-8 years). ET patients from lower-income zip codes waited more than twice as long as those from higher-income areas (34.5 vs. 17.4 years, p = 0.027), highlighting pre-referral barriers and the need for neurologist education, targeted outreach, and streamlined referrals.