Exploring deep brain stimulation willingness in Black individuals with Parkinson's disease

Black individuals with Parkinson's disease (PD) receive deep brain stimulation (DBS) at significantly lower rates than non-White Hispanic individuals, a disparity associated with poorer outcomes.

To explore potential patient-level factors contributing to decreased utilization, we conducted a cross-sectional pilot survey among 28 Black adults with PD who had not undergone DBS. Participants were recruited from neurology clinics in an urban safety-net hospital and local support groups in Atlanta. A structured survey was given to assess views towards DBS, including willingness to undergo DBS both currently and in a hypothetical scenario of worsening symptoms. Responses (YES, NO, MAYBE) were dichotomized (YES vs NO/MAYBE) for analysis. Thematic analysis explored participant perceptions.

The median age was 73.5 years. 50 % were male. When asked about current consideration of DBS, 8 (29 %) said YES, 14 % (50 %) said NO, and 6 (21 %) said MAYBE. In the hypothetical scenario, 19 (68 %) said YES, 4 (14 %) said NO, and 5 (18 %) said MAYBE. Notably, 12 participants shifted from NO/MAYBE to YES, while only one shifted in the opposite direction, indicating a significant increase in willingness under worsening conditions (X² = 7.692, p = 0.01). The most common reasons for hesitation were surgical concerns and lack of information.

Findings suggest that rather than patient reluctance, reduced DBS uptake in this population may be more reflective of modifiable systemic barriers, such as limited awareness or disparities in the referral process. Educational outreach and equitable access to advanced therapies may address this gap.

This was a survey study and not a randomized clinical trial, so there is no clinical trial registration number.