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Deep Brain Stimulation and Parkinson’ s
Disparities in DBS Access, Care and Outcomes: A Conversation
Denise Coley is a member of The Michael J. Fox Foundation Patient Council and the founder of Enable Your Vision, a firm that provides supplier diversity consulting to drive economic vitality for diverse businesses and corporations, and for the communities in which they reside. Michelle Fullard, MD, MSCE, is a movement disorder neurologist at the University of Colorado Hospital; her research focus includes reducing gender disparities in Parkinson’ s disease care and improving hospital care for people with Parkinson’ s disease.
Denise: Michelle, thanks for exploring with me why those who need Parkinson’ s care— and access to treatments like deep brain stimulation, or DBS— can’ t always get it. For those from under-engaged communities, that is, women, ethnically diverse communities, rural communities and people of diverse backgrounds and cultures, it can be a real challenge.
Michelle: There are many reasons for these disparities, and they may be different depending on the community. These include a lack of standard information shared to all, regardless of their community; delays in getting medical care; lack of neurologist care; lack of support systems; fear of losing their income if they have to take time off from work; social roles and anxiety about their families. My work focuses on eliminating these disparities, especially for women. On the whole, DBS is underutilized— and for under-engaged communities, it’ s highly underutilized.
Denise: How do we begin to address the challenge?
Michelle: We need to improve not just access to, but even awareness of, DBS. Too often, people learn about it after the ideal window has closed, so we can’ t offer it. It can take years for many people with Parkinson’ s to be diagnosed, even longer for some DBS candidates— especially those on Medicaid— to simply get a neurology referral. By that time, it may be too late to experience its benefits.
Denise: Deciding whether to have a treatment like DBS is easier when people can talk with someone who looks like them, who can understand their culture and background and they trust. For example, in certain cultures, your hair is your pride and then you hear it will be shaved off for DBS. Having someone to talk to about this issue prior to surgery can be helpful.
Michelle: They may not change their minds about getting DBS, but they’ ll feel more prepared for how they’ ll look afterwards.
Denise: The absence of that“ person who looks like me” has a big impact on trust— and lack of trust can keep people from getting the care they need and deserve. But for now, how can DBS doctors and researchers better serve underengaged communities and build trust?
Michelle: We can do a better job of educating physicians who make referrals, streamlining the evaluation process and developing a standardized way to talk with anyone about DBS that also takes into account the individual’ s unique needs. Implicit bias exists, despite our best intentions to eliminate it. Telehealth and wearables may make the evaluation process for DBS more feasible for