Study Rationale: The state of Hawai’i is ethnically diverse, with a mix of Southeast Asian, East Asian and North Americans, in addition to distinct indigenous Native Hawaiians and Pacific Islanders. Most of the research on Parkinson’s disease (PD) has been conducted in white populations, so for Asian Americans or Native Hawaiians and Pacific Islanders, we do not know how common PD is and whether they experience differences in disease course or barriers to treatments and recourses. The goal of this study is to investigate the characteristics of this unique population and find the best way to engage these individuals in future research.
Hypothesis: We hypothesize that Asian Americans, Native Hawaiians and Pacific Islanders may have difficulty seeing PD specialists, accessing medication and receiving advanced therapy, such as Deep Brain Stimulation (DBS). We predict that they would volunteer for research projects if the study goals are communicated and the barriers to participation are removed.
Study Design: We will review data from individuals with PD who were hospitalized in Hawai’i from 2010 to 2020. We will identify any differences in age, disease severity, treatment by DBS surgery or re-hospitalization among whites, Asian Americans, Native Hawaiians and Pacific Islanders. We will ask whether they had difficulty accessing specialists, medications or resources, and whether they would be interested in participating in research, such as the online “Fox Insight Study.” We will identify barriers to participation, offer assistance and ask if we can continue to collect data about their disease over time.
Impact on Diagnosis/Treatment of Parkinson’s disease: Understanding ethic differences will allow us to help individuals from diverse backgrounds access specialists, obtain medication, receive advanced therapy (such as DBS) and participate in research.
Next Steps for Development: We will continue to follow and attempt to create a larger cohort of Asian Americans, Native Hawaiians and Pacific Islanders with PD, so that we can better understand their disease course and, ultimately, help them get the best treatment possible.