Investigator:
Danielle Shpiner, MD
Name of Institution:
Miller School of Medicine of the University of Miami
Project Title:
Improving access to advance care planning for Hispanic people with Parkinson’s disease
Investigator Bio:
Dr. Danielle Shpiner is Assistant Professor of Clinical Neurology and a member of the Division of Parkinson’s Disease and Movement Disorders at the University of Miami Miller School of Medicine. Dr. Shpiner also serves as Director of the University of Miami Parkinson’s Interdisciplinary Clinic, Co-Medical Director for the University of Miami Parkinson’s Foundation Center of Excellence, and Co-Director of the University of Miami Movement Disorders Fellowship Program. Dr. Shpiner attended college at Johns Hopkins University, where she graduated with a bachelor’s degree in Neuroscience, with honors. She earned her medical degree at Boston University School of Medicine. She completed her Neurology Residency at Jackson Memorial Hospital / University of Miami Miller School of Medicine, where she served as Chief Resident of Research and Education. She completed a two-year Movement Disorders fellowship at the University of Miami Miller School of Medicine, and subsequently joined the faculty in 2019. Dr. Shpiner’s clinical and research interests include novel and advanced therapies for Parkinson’s Disease (PD), health disparities, and medical education.
Objective:
To investigate the reasons for barriers to advance care planning (ACP) engagement in the Hispanic, Miami-based Parkinson’s population.
Background:
ACP is the process through which patients can express their wishes regarding future healthcare decisions, in case they ever find themselves in a position where they are not able to make those decisions for themselves. Prior studies have shown that ACP is important to patients, especially those with serious illnesses; however, not everyone has the same access to these discussions. Physician bias, disparities in health literacy, and cultural preferences may all play a role. In a prior survey-based project, our team found significant differences in prior experience with ACP among Hispanic people with PD, compared to non-Hispanics, even though the majority of both groups indicated that talking about ACP with a health care provider was important to them.
Methods/Design:
To investigate barriers to ACP engagement in the Hispanic, Miami-based Parkinson’s population, we plan to conduct focus groups and semi-structured interviews with Hispanic people with PD and their care partners. We will explore the reasons that people in this population have not been able to access ACP discussions in the past and discuss potential interventions to increase access, tailored to the needs of this population. We are hopeful that the qualitative focus group and semi-structured interview approach will allow us to better understand the current barriers and develop strategies that will best be able to reach our target population.
Relevance to Diagnosis/Treatment of Parkinson’s Disease:
Prior studies have demonstrated the importance of ACP to patients with serious illnesses, including PD. ACP discussions empower patients by providing education and the opportunity to make health care decisions in line with their goals of care. The goal of this project is to understand previously identified disparities in access to this aspect of care in the Hispanic, Miami-based Parkinson’s population, so that we can implement appropriate interventions to overcome these barriers.