Objective:

To assess the willingness of Black individuals with Parkinson’s Disease (PD) to consider deep brain stimulation (DBS) as an alternative treatment and their awareness of this treatment.

Background:

The number of Black people with PD is unknown, because of underrepresentation in research. Despite adjusting for prevalence and other factors, Black patients are 5-8 times less likely to receive DBS.

Design/Methods:

This was a randomized survey study of Black people with a diagnosis of PD in the metropolitan Atlanta area. People were asked to answer a 9-question survey about living with PD and their perceptions of DBS.

Results:

Twenty-eight people responded to the survey, with the median age being 69. Half had some degree of post-secondary education. Fifty percent thought their symptoms were at least moderately disabling, with tremor being the most bothersome symptom (46%, n = 13/28). Nineteen people had not heard of DBS before (68%). When asked about considering DBS as a treatment today, 29% said yes (n=8/28), 50% said no (n=14/28), and 21% said maybe (n=6/29). The main reasons for "no" or "maybe" were unwillingness to undergo surgery (35%, n= 7/20) and desiring more information (35%, n= 7/20). If faced with maximally disabling symptoms despite best medical therapy, 68% would consider DBS (n =19/28), 14% said no (n=4/28), and 18% said maybe (n= 5/28). The main reasons for "no" or "maybe" in this scenario were unwillingness to undergo surgery (56%, n=5/9) and concerns about improving quality of life (22%, = 2/9).

Conclusions:

Most patients in this population are unfamiliar with DBS but 68% would consider it if their symptoms were maximally disabling despite optimal therapy. This highlights the need for increased awareness and access to DBS in minority populations. Other factors such as lack of knowledge or surgery concerns may contribute to the existing disparities.