Hispanic Perspectives on Parkinson’s Disease Care and Research Participation

Abstract

Background: Hispanics are under-represented in Parkinson’s disease (PD) research despite the importance of diversity for results to apply to a wide range of patients. Objective: To investigate the perspective of Hispanic persons with Parkinson disease (PWP) regarding awareness, interest, and barriers to participation in research. Methods: We developed and administered a survey and qualitative interview in English and Spanish. For the survey, 62 Hispanic and 38 non-Hispanic PWP linked to a tertiary center were recruited in Arizona. For interviews, 20 Hispanic PWP, 20 caregivers, and six physicians providing service to Hispanic PWP in the community were recruited in California. Survey responses of Hispanic and non-Hispanic PWP were compared. Major survey themes were identified by applying grounded theory and open coding. Results: The survey found roughly half (Q1 54%, Q2 55%) of Hispanic PWP linked to a tertiary center knew about research; there was unawareness among community Hispanic PWP. Most preferred having physician recommendations for research participation and were willing to participate. Hispanics preferred teams who speak their native language and include family. Research engagement, PD knowledge, role of family, living with PD, PD care, pre-diagnosis/diagnosis emerged as themes from the interview. Conclusion: Barriers exist for participation of Hispanic PWP in research, primarily lack of awareness of PD research opportunities. Educating physicians of the need to encourage research participation of Hispanic PWP can address this. Physicians need to be aware of ongoing research and should not assume PWP disinterest. Including family members and providing research opportunities in their native language can increase research recruitment.

Enrollment of Participants From Marginalized Racial and Ethnic Groups

“…Additional reasons limiting recruitment also included language barriers and potential financial burden. 24 Similar evidence has also been descried in other subspecialties. Non-White participants in 2 oncology clinics were less likely to gather clinical trial information from physicians or from the internet when compared with White individuals and more likely to believe that they had been treated in clinical trials without their knowledge, 25 reflecting the true experience of marginalized racial and ethnic groups in recent times.…”

“…21,22 Previous studies have also reported that patients belonging to marginalized racial and ethnic groups may be less well informed about or aware of clinical trials. 23,24 For instance, a recent study evaluating the willingness of Hispanic individuals with PD to participate in clinical trials revealed that the lack of awareness regarding PD research remained a significant obstacle. Additional reasons limiting recruitment also included language barriers and potential financial burden.…”

Research Priorities of Individuals and Caregivers With Lewy Body Dementia

“…As with many research studies, the higher rates of white and highly educated respondents likely bias the outcomes. Little is known about the disease features and specific needs of non-White ethnoracial groups, [26][27][28] LGBTQ+ populations, and people from lower socioeconomic levels and without high levels of education. People with LBD from underrepresented groups may be at a higher risk of misdiagnosis, and likely to have even less access to education, research participation, and clinical resources.…”

Moving Forward from the COVID-19 Pandemic: Needed Changes in Movement Disorders Care and Research

“…As a research community, we need to prioritize inclusivity and devote the necessary resources and funds to tackling this problem. Strategies may include partnering with trusted community organizations and advocates, providing study materials in languages other than English, ensuring a diverse research team [ 68 ], providing training on inclusive research practices [ 93 •], educating community providers on research opportunities [ 96 ], and providing the technology required for participation. We cannot assume that recruitment strategies designed for traditional in-person studies will translate to decentralized studies [ 76 ].…”