Assessment of Barriers in Access to Focused Ultrasound Ablation for Essential Tremor

Introduction: Essential tremor (ET) is the most common movement disorder in adults. While disparities in deep brain stimulation access are well-documented(1-3), the barriers to focused ultrasound ablation (FUSA), an emerging treatment for ET, remain understudied.

Methods: We prospectively surveyed consecutive ET patients presenting for FUSA consultation. Demographics including gender, race/ethnicity, social vulnerability index (SVI), and baseline tremor score (The Essential Tremor Rating Assessment Scale – (TETRAS)), 0-32, higher score indicate worse tremor) were documented. We assessed treatment delays, quality of life (QOL) impact, and perceived barriers to FUSA utilizing a standardized questionnaire. The Focused Ultrasound Foundation funded this IRB-approved survey.

Results: Among the currently enrolled 14 subjects, most were male (71.4%) and Caucasian, non-Hispanic (85.7%). Only two patients were from high-risk SVI regions. The average tremor score was 19.2 (SD+/-7.4), and the median age of tremor onset was 48 years (SD+/-18.1). It took an average of 10.6 years from the failure of medical management to undergo FUSA evaluation. The most common reasons for delay were lack of understanding of FUSA availability (43%) and appointment wait time (35.7%). Most patients (71.4%) wished they were referred earlier, by an average of 6.2 years. Women were more likely to report unique psychosocial limitations that impacted QOL compared to men, such as the application of jewelry or cosmetic products (p=0.03) and the ability to clean their household (p=0.05).

Conclusion : The authors identified barriers to FUSA treatment for ET, likely secondary to health disparities and a significant gap in awareness of treatment availability. The current standardized ET QOL survey may not accurately assess the differences in the severity of QOL reduction in women, potentially delaying surgical referrals. Further surveys are underway to determine the barriers to access to FUSA and improve care equity.