Objective: To assess Asian American (AA), Native Hawaiian and Pacific Islanders (NHPI) and White Parkinson’s disease (PD) patient’s attitudes toward research participation among the first pilot PD cohort in Hawaii.

Background: Research for PD has focused on primarily White populations, with a notable lack of data in AA and NHPI populations. PD patients from underrepresented populations (URP) face barriers for participating in research: lower referral rates, cultural differences, and a lack of trust [1]. Understanding reasons why URPs would want to participate in research and why they may be hesitant to participate in research is critical to adjust current research methods to increase research participation in URPs, such as NHPI.

Method: This study recruited 78 PD patients (AA=27, NHPI=26, White=25) and analyzed their responses to a 22-item questionnaire, with a 5-point Likert scale, that assessed their attitudes toward participating in clinical research at a baseline and 6-month follow-up visit. Statistical analyses were conducted using R version 4.4.3.

Results: At baseline, there were no statistically significant differences (p>0.05) in responses among racial groups. Previous participation in medical research was reported in 28% of participants. The majority of participants reported that they want to know the results from any research they participate in (N=71, 91%) and that they want their treating physicians to tell them about research opportunities (N=68, 87%). At follow-up, NHPI reported less willingness to participate in research if their doctor recommended it compared to AA and White groups (p=0.03). Overall, top reasons for willingness to participate in research were: To help other patients in the future (85%) and advance the medical knowledge and treatment of PD (82%). Top reasons for not wanting to participate in research were: lack of transportation (33%), fear of injections/blood collection (21%), and going to research visits alone (19%).

Conclusion: Based on our pilot findings, NHPI and AA PD patients reported similar willingness to participate in research. Receiving study results was of high importance to all race groups. Key strategies to enhance participation include engaging treating physicians, increasing access and support for patient participation.

References: 1. Ison JM, Jackson JD, Hemley H, et al. Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinson’s Disease: The FIRE-UP PD study. Contemp Clin Trials. 2024;144:107619. doi:10.1016/j.cct.2024.107619

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MDS Abstracts - https://www.mdsabstracts.org/abstract/attitudes-toward-research-among-asian-americans-native-hawaiian-and-pacific-islanders-and-whites-with-parkinsons-disease-in-hawaii/