Investigator:
Michelle Fullard, MD
Name of Institution:
University of Colorado Denver, AMC and DC
Project Title:
Improving Shared Decision Making for Women with Parkinson’s Disease
Investigator Bio:
Dr. Michelle Fullard is an Associate Professor of Neurology at the University of Colorado, where she serves as the Director of Clinical Research for the Movement Disorders Division. She earned her undergraduate and medical degrees from Vanderbilt University, followed by Neurology residency at the University of Virginia and fellowship training in Movement Disorders at the University of Pennsylvania. During her time at Penn, she also completed a Master of Science in Clinical Epidemiology. Dr. Fullard’s research is focused on improving decision-making for individuals with Parkinson’s’ disease (PD). Her work aims to optimize patient outcomes by developing and implementing tools that support informed, value-based decisions. Additionally, she works to address and reduce disparities in PD care.
Objectives/Background:
To determine if using a gender-sensitive decision aid improves the decision-making process for women with Parkinson’s disease who are considering Deep Brain Stimulation (DBS) surgery.
DBS is a proven and effective treatment for PD that can greatly improve movement symptoms and quality of life. However, women are much less likely than men to receive this surgery. Factors that may contribute to lower use of DBS for women include less social support, more caregiving duties, lower access to care, and differences in shared decision-making. Prior studies have shown that women are less likely to be fully informed about their options and often feel more uncertain when making medical decisions. Decision aids are tools that can help patients understand their options and weigh the risks and benefits. Since women often receive less information and support in the decision process, these tools may be especially helpful for them.
Methods/Design:
We will include 42 people with PD in this study who are being evaluated for DBS. Two-thirds will receive the decision aid along with usual care, and one-third will receive usual care alone. The decision aid is a web-based tool that is designed to support both women and men in their decision-making, with special attention to the unique concerns women may have when considering DBS. Throughout the DBS evaluation process and again six months after making a decision, participants will complete questionnaires that help us understand how confident they felt in their decision, how much they knew about DBS, and whether their choice matched their values. This will allow us to see if the decision aid helped improve these outcomes. In addition, up to 12 people who use the decision aid will take part in interviews so we can learn more about how they made their decision and how the tool influenced their thinking.
Relevance to Diagnosis/Treatment of Parkinson’s Disease:
DBS is a surgical treatment that can significantly improve movement symptoms and quality of life for people with Parkinson’s disease. Deciding whether or not to have DBS, however, can be overwhelming, especially when patients do not feel fully informed or supported in the process. This is particularly true for women, who are less likely to receive DBS, even when they may be good candidates.
Our study is testing a new decision aid for DBS which provides personalized information about DBS and helps people think through what matters most to them. By giving people clearer information and support, we hope to reduce uncertainty and help them make decisions aligned with their goals and values.
This project has the potential to improve how treatment decisions are made in Parkinson’s care and help more people, especially women, access treatments that could greatly improve their quality of life.