Objective: To identify health care needs and barriers among people with Parkinson’s disease who are underserved so as to inform strategies to better serve this population.

Background: Parkinson’s disease (PD) is a neurodegenerative disorder, largely affecting the aging population. While there is general awareness of the needs and barriers to care for the Parkinson’s population as a whole, there is lack of specificity in regard to the patient-reported experience of traditionally underserved populations, including women, racial and ethnic minorities, residents of rural areas, and individuals over 70 years of age. These groups are collectively considered Underserved Parkinson’s Populations (UPPs). When there is specificity, the focus is limited in scope. For example, studies of Hispanics with PD have focused on genetics, studies of women with PD have concentrated on disease symptoms, and studies of people with PD residing in rural areas have centered on telehealth and access to care.

Method: A paper-based survey instrument was developed and is to be administered in April 2020 via mail to approximately 7000 people with Parkinson’s disease who were identified through a data sample attained through the Centers for Medicare & Medicaid Services and identified via Medicare claims. This sample of people with Parkinson’s meet the study’s definition of underserved (i.e. women, racial and ethnic minorities, individuals over 70 years of age, and residents of rural areas). In addition, semi-structured qualitative interviews will be conducted.

Results: Survey data analysis will report, across UPP sub-groups (e.g. by gender, race, geographic location) on 1. structural gaps in care through examining the desire, as compared to the ability, to access care (i.e., neurological, physical therapy, occupational therapy, mental health services); 2. personal activation and motivation through examining the attainment and use of PD information and care options; and 3. existing support through the identification and utilization of social and care networks.

Conclusion: A deeper understanding of the healthcare needs and access barriers for underserved Parkinson’s populations can inform providers, institutions, organizations, and people with PD about key issues and aid in developing programs, activities, and resources that best reach and serve these populations.

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