Objective: The objective of this qualitative inquiry is to explore the experiences of people with movement disorders in terms of ethnic and gender-related barriers to accessing DBS using a qualitative approach. Patient attitudes and experiences regarding DBS referral, work-up and consultation processes were investigated, as well as reasons for a no-go decision.

Background: Deep brain stimulation (DBS) has been shown to improve quality of life for carefully selected individuals living with Parkinson disease, tremor and dystonia. A growing body of evidence has highlighted significant barriers to DBS access, specifically for female and racialized patients. Gender, race, and culture have important consequences for health outcomes, as well as healthcare access and experiences; these factors may range from the interpersonal to systemic levels of care. Further examination of these disparities must be conducted to improve health outcomes for all patients requiring DBS.

Method: Semi-structured interviews were conducted in-person and via Zoom with 7 participants recruited from the Parkinson and Movement Disorders Program at the University of Alberta. Participants were eligible if they were referred for DBS previously, and have chosen not to proceed with DBS at any stage of referral or work-up. Interviews ranged from 40 to 60 minutes. Interviews were transcribed, and data was analyzed using a thematic analysis approach. Interviews will proceed until saturation is reached.

Results: All participants completing interviews were females of Caucasian (5/7; 71%), Filipino (1/7; 14%), and Pakistani (1/7; 14%) origin. Four major themes emerged from preliminary data analysis surrounding factors that may contribute to a no-go DBS decision: (1) significant responsibility due to traditional gender roles, such as caregiving for family members or child-rearing, (2) current family dynamics and a perceived lack of support network at home for surgical recovery, (3) religious and cultural beliefs guiding patient preference for less invasive mechanisms of treatment, and (4) fear surrounding the surgical process and adverse effects. All participants felt well-supported by clinicians throughout the referral and workup process.

Conclusion: The preliminary results suggest significant barriers exist for female and racialized patients in accessing DBS, which may function at intrapersonal, interpersonal and family levels.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/ethnic-and-gender-disparities-in-access-to-deep-brain-stimulation-a-qualitative-exploration/