University of California San Diego, Department of Neurosciences, La Jolla, CA, USA.
The Michael J. Fox Foundation for Parkinson's Research, New York, NY, USA.
J Alzheimers Dis. 2021;81(2):809-819. doi: 10.3233/JAD-210231.
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.
To investigate the perspective of Hispanic persons with Parkinson disease (PWP) regarding awareness, interest, and barriers to participation in research.
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.
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.
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.
尽管多样性对于研究结果能够适用于广泛的患者群体非常重要，但西班牙语裔人群在帕金森病 (PD) 研究中代表性不足。
调查西班牙语裔帕金森病患者 (PWP) 对参与研究的意识、兴趣和障碍的看法。
我们以英语和西班牙语制定并实施了一项调查和定性访谈。在调查中，我们在亚利桑那州招募了 62 名西班牙语裔和 38 名非西班牙语裔 PWP。在访谈中，我们在加利福尼亚州招募了 20 名西班牙语裔 PWP、20 名照顾者和 6 名为西班牙语裔 PWP 提供社区服务的医生。比较了西班牙语裔和非西班牙语裔 PWP 的调查结果。通过应用扎根理论和开放式编码确定了主要调查主题。
调查发现，大约一半（Q1 为 54%，Q2 为 55%）与三级中心相关联的西班牙语裔 PWP 了解研究情况；社区西班牙语裔 PWP 则存在不知情的情况。大多数人首选医生推荐参与研究，并愿意参与。西班牙裔人更喜欢讲母语的团队，并包括家人。研究参与、PD 知识、家庭角色、与 PD 一起生活、PD 护理、诊断前/诊断后成为访谈的主题。
西班牙语裔 PWP 参与研究存在障碍，主要是缺乏对 PD 研究机会的认识。教育医生鼓励西班牙语裔 PWP 参与研究可以解决这个问题。医生需要了解正在进行的研究，不应该假设 PWP 不感兴趣。包括家庭成员并提供母语研究机会可以增加研究招募。
