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.
Palliative care has become increasingly widespread and demonstrated extraordinary utility in improving quality of life in patients with neurological diseases, particularly surrounding end-of-life care. 1-5 However, there is ongoing debate on whether physician-assisted dying (PAD) for people with terminal illnesses should also be a legal right. 6 Healthcare professionals, including those in the field of movement disorders, provide care for people with illnesses that may reach a point where medical interventions will not extend life or improve the quality of remaining life. In the state of California, the End of Life Option (EOLO) Act was enacted on June 9, 2016, which allows patients with terminal illnesses and grave prognoses to choose to end their lives by self-administered medications otherwise known as PAD.To be eligible to participate in the EOLO program in California, patients must have a terminal diagnosis with a prognosis of 6 months or less. The patient, and only the patient, must express an interest to end their life through the program on two separate occasions separated by a minimum of 2 weeks. The patient must have the "physical and mental ability to self-administer the aid-in-dying drug." 7 Importantly, the patient's power of attorney, advance health care directive, conservator, health care agent, or surrogate may not request these drugs on a patient's behalf. 7 Medical decision-making capacity is determined by the individual's physician, psychiatrist, or psychologist and involves individuals needing to understand and communicate their decision to healthcare providers. The term "self-administer," according to the written law, is defined as "qualified
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