Hispanic Perspectives on Parkinson’s Disease Care and Research Participation

INTRODUCTION

Clinical research is essential for early detection, progression and treatment for Parkinson’s disease (PD), which affects an estimated 930,000 people in North America in 2020 [1] and is the second leading neurodegenerative disease after Alzheimer’s disease (AD) [2]. Participation of a diverse population in clinical trials is important to ensure that the results can be applicable to a wide range of people [3, 4]. Although Hispanics make up 17%of the US population [5], which is estimated to grow up to 30%by the year 2050 [4, 6], they are under-represented in clinical research studies [7–10]. In fact, the National Institutes of Health reports that racial and ethnic minorities make up 30%of enrollees in clinical trials and Hispanics represent only 7.6%of those participants [4]. While there is limited data on minority enrollment in PD research, it is estimated that only 8%of participants are non-white [11], suggesting Hispanic representation is even lower. While previous studies have identified obstacles for participation in research in the general Hispanic population as low awareness of opportunities, language and cultural barriers, logistical challenges, and negative perceptions of research [7, 9], the barriers for Hispanic persons with PD (PWP) have not yet been investigated.

In this study, we sought to determine Hispanic PWP: 1) awareness of general research opportunities for PD, 2) interest and motivation for participation in such studies, 3) perceived barriers or facilitators to participation, and 4) suggestions for overcoming those barriers. We also aimed to explore Hispanic persons’ access to PD care and disease knowledge. We used mixed methods to apply a survey and an interview to gain insight to patient, caregiver, and physician perspectives.

METHODS

RESULTS

Demographics of the survey and interview participants are shown in Table 1.

Survey

Hispanic PWP were younger and less educated than non-Hispanic PWP, without a significant difference for disease duration. Group responses to each question on the survey are depicted in Figs. 1 and 2. In general, Hispanic PWP and non-Hispanic PWP responded similarly, with over half agreeing that they were aware of the research studies and were interested in observational and drug studies which may benefit themselves and future generations, although very few had previously participated in a study. They believed that the researchers were generally honest about available treatment options and study risks, and physician recommendation for participation in a study was a strong factor for PWP to consider participation. However, responses by Hispanic PWP and non- Hispanic PWP differed significantly for several questions (Fig. 2). Hispanic PWP were more interested in participating in drug trials (U = 852, p = 0.004), but they were more concerned that research participation would represent a financial burden (U = 719.5, p < 0.001) and expose their condition (U = 803.0, p = 0.003). Hispanic PWP indicated the importance of the research team being from the same background, speaking their native language (U = 300, p < 0.001) and their family being comfortable with the research team much more strongly (U = 864, p = 0.005). Hispanic PWP tended to be less likely to have done the survey for the $15 gift card (U = 916.5 p = 0.002).

Fig. 1

Survey responses of Hispanic and non-Hispanic PWP compared using categorical data.

Fig. 2

Survey responses of Hispanic and non-Hispanic PWP compared using ordinal data.

DISCUSSION

This is the first study to determine Hispanic PWP awareness of research opportunities, interest and motivation for participation in such studies, barriers to research participation, potential ways to overcome barriers and PD knowledge. We compared Hispanic PWP and non-Hispanic PWP perspectives using a survey and gathered further data on PWP, caregiver and physician perspectives through in-depth qualitative phone interviews. Interviews also evaluated knowledge of PD, opinions on PD care, living with PD and the role of family and caregivers.

Overall, PWP linked to a tertiary center were aware of ongoing research studies, trusted researchers, and were interested in research, although only a few had previously participated in research. In contrast, Hispanic PWP and caregivers not linked to a tertiary center were unaware of research studies, although they strongly endorsed the value of research and wanted to participate for the benefit of themselves and future generations. Strong motivation of Hispanic PWP to help future generations is similar to the study by Jefferson and colleagues [17] showing older adults participating in AD research are motivated for personal and society’s benefit. Hispanic PWP were interested in research as much as non-Hispanic PWP and were willing to participate in research.

The survey revealed potential barriers for research participation for the Hispanic PWP including potential financial burden and exposure of their condition. The interviews revealed that the primary barrier for those not linked to a tertiary center was unawareness of research opportunities. The most important barrier for Hispanic PWP and caregivers as well as for other ethnic minorities not linked to a tertiary center may be lack of awareness about research opportunities despite being very interested in research [18, 19]. Considering the majority of Hispanic and non-Hispanic PWP agreed that they would be willing to participate if their physician had recommended participation in a study, physicians not informing and providing the importance for PWP and their caregivers about research participation may be among the main reasons for Hispanic underrepresentation in PD research. These results stress the importance of physicians who care for Hispanic PWP outside of tertiary centers staying informed about ongoing res-earch in their area. Community-based physicians also reported in the interviews that they did not regularly discuss research participation with PWP and were rarely asked about research by the Hispanic PWP. Nevertheless, even for Hispanic PWP linked to a tertiary center of care, almost half of the PWP stated that their physician did not discuss or recommend participation in a trial. This may be due to physicians selectively referring non-Hispanic PWP over Hispanic PWP. Physicians may not be presenting the opportunity for research participation with Hispanic PWP due to their own assumptions that Hispanic PWP would have transportation difficulty and/or lack of interest [20, 21]. These potential barriers were brought up by the interviewed physicians and the Hispanic PWP linked to a tertiary center in our study. Nevertheless, these barriers were not brought up by Hispanic PWP not linked to a tertiary center. The discrepancy can perhaps be due to these individuals having limited knowledge of what research participation entails, which can be assessed in future studies. Additionally, Hispanics have less exposure to research opportunities given they are less apt to access sites, diagnostic centers and support groups, where research recruitment is more likely to happen [22].

Another important barrier for research participa-tion was found to be language. Hispanic PWP preferred the research team spoke their same language and their families were comfortable with the team, which likely reflects a better understanding of the Hispanic culture. Alongside language barriers, lack of healthcare coverage, family responsibilities, legal status, work schedules, and cultural differences were also previously reported as potential barriers for research participation in other diseases [23–26]. Previous studies have suggested that Hispanics are con-cerned with unethical research practices or potential harm [7], and that both Hispanics and African Americans have mistrust of the medical system [27, 28]. However, our results showed that trust in re-searchers is high in the Hispanic PWP population, and although Hispanic PWP may have reported concerns about financial barriers, non-Hispanic PWP also reported barriers such as transportation. Thus, financial barriers do not only apply to Hispanic PWP and this barrier should not be specifically assumed to exist only for Hispanics.

Our findings suggest that addressing potential fin-ancial burden, minimizing risk of condition disclosure, having study team members who can speak the native language of participants, and ensuring that families are comfortable can increase research participation among Hispanic PWP linked to a tertiary center who are already generally aware of ongoing PD research. As communicating in English can be a barrier to research participation, and Hispanic PWP prefer researchers from the same cultural background [10, 23], research teams should be expanded to include community-based volunteers of a similar background such as the promotores [6] who assisted in completion of surveys for this study. It is also equally important having translated versions of written research materials available in native languages and available to recruitment sources. Since PWP are interested and willing to participate once their physician recommends a study, it seems important for physicians to discuss research participation during clinic visits.

Regarding clinical care, majority of the Hispanic PWP had gone to multiple physicians for diagnosis. The majority of Hispanic PWP were evaluated by at least two physicians during the diagnostic process, most commonly due to a referral from primary care to a specialist followed by seeking better care and finding a trusted provider. Although the experience of non-Hispanic PWP is not well documented, a population-based study estimated that 20%of people with PD, who had already sought medical care, had not yet been diagnosed with PD [29]. Thus, it is not surprising that the Hispanic PWP had visited multiple physicians. The majority of the Hispanic PWP and half of the caregivers did not know much about the disease and sought information outside their physician to learn more. Almost all caregivers were very involved with learning about the disease and seeking information outside their physician. Physicians believed Hispanic PWP presented in clinic once symptoms are more advanced, which is related to early symptoms being underreported compared to non-Hispanic PWP. 50%of Hispanic PWP and 10%of caregivers interviewed in this study acknowledged that advanced symptoms interfering with daily activities propelled them to seek medical intervention. This may also be due to misinterpreting signs of disease as part of aging [22] or the culturally taboo topic of seeking help for mental health and cognition [22, 30].

Hispanic PWP rely on physicians for disease knowledge, which stresses the importance of physicians providing disease education and referrals to research. However, physicians should keep in mind that Hispanics tend to be less educated than other ethnic groups, with about half completing high school and fewer going on to further education [31, 32]. As healthy literacy is low across all ethnicities, with 1 in 4 having low healthy literacy and almost 50%low or marginal health literacy [33], Hispanics with lower education may be less likely to fully comprehend complicated medical jargon [22]. This is reflected in the education level of our two groups, with 30%of graduate level of education in those attending a tertiary center versus 5%among Hispanic PWP in the community. Therefore, community physicians and outreach workers working with the Hispanic community can improve disease knowledge and health literacy by providing education while being mindful of their varying knowledge levels.

More than half of Hispanic PWP and caregivers re-ported feeling depressed upon learning the diagnosis. Given that being newly diagnosed with a chronic illness is distressing for all ethnic groups [34], educ-ation, supportive services such as home visits, supportive groups, respite services, and research opp-ortunities in PWP’s and caregivers’ native language can also decrease the depressed and dispirited feelings. Inclusion of family members in the process is crucial as the impact, economic, and personal cost of PD is universal on families regardless of culture [35]. Surprisingly, only one-third of Hispanic PWP and caregivers, and one physician in our study mentioned the toll of a PD diagnosis on the whole family. However, our interviews also showed that spouses and children were consistently part of the diagnostic and information gathering processes as well as clinical care and were challenged with seeing the disease progression and not knowing the best way to support their loved one. Based on our findings and previous studies in Hispanics with dementia [36, 37], the importance of providing disease education and resources to support family members should not be overlooked.

Our study has several limitations. The sample size of interviewed physicians was low; however, both English and Spanish speaking physicians with a range of specializations were included and found to have similar perspectives. We collected ethnicity but were not able to collect uniform data on race. An open-ended question was used for race while a multiple choice format may have been more useful. The survey only focused on research, and the interview script also included diagnostic process and disease knowledge. For the purposes of this exploratory study, we kept our conversation limited to research in general. We did not address the specifics of different types of research trials nor the commitment required from the participant, although these specifics can have a further impact on participants’ perspectives. Future studies including both surveys and qualitative interviews focusing extensively on clinical care as well as research in PD can provide more insight to methods of overcoming Hispanic underrepresentation in PD research.

On the other hand, an important aspect of our study is that this is the first study to include both Hispanic PWP and non-Hispanic PWP using a survey, and an in-depth qualitative interview of Hispanic PWP, caregivers and physicians who usually manage Hispanic PWP. By recruiting participants from two different geographic locations, Arizona and California, we were able to investigate the experience of groups with different levels of access to healthcare and research opportunities. Although we found similarities between participant groups from different locations, the relatively small samples prevent generalization to all Hispanics or all non-Hispanic groups. However, we believe these preliminary results will pave the way for future research and recruitment efforts.

In conclusion, our results show that Hispanic PWP are interested in participating in research, believe that research is valuable, and are motivated to help future generations and themselves. The primary barrier for Hispanic PWP’s research participation stems from limited physician knowledge of ongoing research studies in their communities, discussion of ongoing studies in their communities, and invitation to participate. These barriers could be addressed in part by education of physicians, PWP, and caregivers, which is achievable with the help of non-profit organizations, academic institutions, and government agencies adjusting their current outreach and research recruitment strategies to focus on educating community physicians as gatekeepers to minority research participation. Overall, access to appropriate clinical care is the gateway to improve disease education, management, and research participation in PD.

While our research only included PD, we believe that our results are applicable to other diseases. We are hoping that these findings will serve to increase awareness on how to include minorities in research. Particularly within the AD research community addressing diversity has become an important focus over the last few years [38] and more recently amidst the current COVID-19 pandemic. Mainstream media has showcased ethnic health disparities demonstrated by the disproportionate infection rates among minorities, particularly among Hispanics. In California, Hispanics account for 61%of COVID-19 cases and almost half (48%) of deaths [39]. Improving access to care and providing educational resources to prevent disinformation are crucial to improve the wellbeing of minorities that are unequally affected by many other diseases including the new infections we are struggling to keep under control.