Creating tools to enhance PD care and research participation of Hispanic-Latino community

City College Of New York, New York NY

Investigators

Linked publications & trials

Abstract

ABSTRACT Parkinson’s disease (PD), a progressive and complex neurodegenerative disorder, manifests with motor and non-motor symptoms that, only partially and for a limited time, can respond to adequate therapy. Despite the similar incidence of PD, disease management of Hispanic patients with PD is poorer than that of white non-Hispanics, and their participation in clinical trials does not reflect expected values (well below 5% versus expected values around 20%). Together with other evidence, these observations suggest an underutilization of proper healthcare, and cultural differences. Moreover, the scant Hispanic participation in clinical trials further reinforces the vicious cycle of stigma and inadequate care. The primary goal of this proposal is to understand the reasons, including cultural differences, that foster this and to develop strategies to remove some of these barriers in the Hispanic community of the New York City area (around 25% of the population). We will employ programs promoting outreach, awareness, and education and enhance participation in research studies to reach these goals. This work will be performed collaboratively with the Parkinson’s Foundation, which has been working to increase PD awareness in Hispanic communities. The plan's first step involves the selection, training, and monitoring of local health educators (promotores de salud) and community stakeholders who are part of the NYC Hispanic communities. Together with the promotores de salud and in conjunction with other “passive recruitment” instruments (i.e., newsletters, social media, PD-related websites), we will then provide PD education to Hispanic communities in NYC (Aim 1). To verify the feasibility and efficacy of this strategy, we also propose prospective studies in which PD Hispanic patients will be recruited to demonstrate, based on recent evidence, that exercise and multidisciplinary care significantly improve the life quality of patients and caregivers. Here, we will assess the feasibility, adherence, and retention of Hispanic patients with PD in a study determining the effects of a two-week inpatient rehabilitation program immediately after this program and six months later (Aim 2). We will use a similar approach for an outpatient program study for Hispanic patients with PD (Aim 3). Importantly, for both Aims 2 and 3, we will monitor patients’ participation and gather feedback during and after these prospective studies to enhance Hispanic engagement in research. In summary, the proposed studies will develop outreach models and sustainable partnerships with community-based organizations to promote research efforts and disseminate research findings in the Hispanic community. These models can be used as infrastructure for future clinical studies, education, and implementation of better clinical care for the Hispanic population and others. In addition, these studies will help validate novel complementary approaches for the care of PD that can improve the quality of life of patients with PD beyond cultural barriers, improving well-being and reducing health disparities.