Feasibility for a Community-Based Parkinson Disease Cohort in Hawaii

Most of the research in Parkinson disease (PD) has been conducted in White populations. There is a gap in the understanding of PD in other racial/ethnic groups, such as Asian Americans (AAs) and Native Hawaiians or Pacific Islanders (NHPIs). Therefore, we aimed to test the feasibility of a longitudinal cohort and understand attitudes and barriers to research participation in a pilot study of AA, NHPI, and White patients with PD in Hawai'i.

We conducted a prospective pilot study of AA, NHPI, and White patients with PD, without dementia, to compare characteristics between racial groups' self-reported quality of life (QoL), interest in participating in research, health care utilization, and barriers to accessing health care, at baseline and 6-month follow-up visits. This was a single-center study completed at the Parkinson's and Movement Disorder Center at The Queen's Medical Center in Honolulu, Hawai'i from March 2023 to June 2024.

Of 146 patients screened for eligibility, 79 completed study enrollment (mean 68.8 years, male = 59%). Demographics, PD history, and questionnaires from baseline and follow-up visits were analyzed for 78 participants (AA = 27, NHPI = 26, White = 25), with 1 participant who dropped out. Differences were found between groups' household income, comfort with technology, and awareness of advanced PD therapies. There was no significant difference between groups' self-reported QoL, barriers to PD care, and attitudes toward clinical research.

AA and NHPI patients with PD in this study were no less apt to participate in research compared with White patients with PD. Although there were no significant differences in the variables evaluated among different racial subgroups, our results warrant further research.