Deciding whether and when to pursue deep brain stimulation (DBS) can feel overwhelming for people living with Parkinson’s disease. Although DBS is widely recognised as one of the most effective treatments for managing movement-related symptoms, it is also a complex and highly individual decision. The therapy involves surgically implanting a battery-powered device that delivers electrical signals to specific regions of the brain responsible for movement control. For many patients, balancing potential benefits against uncertainties can make the decision-making process particularly challenging.
To address this, experts at the University of Colorado Anschutz developed the first evidence-based decision tool specifically designed to support patients considering DBS. The tool aims to improve understanding of the procedure while strengthening patients’ confidence as they weigh their treatment options. Findings published in the Journal of Parkinson’s Disease show that most patients found the tool helpful, were satisfied with its content, and would recommend it to others navigating similar decisions.
The research team, led by Michelle Fullard, emphasised that the goal was not simply to provide information, but to enable meaningful shared decision-making between patients and clinicians. According to Fullard, patients at every stage of the DBS journey reported that the tool added value. By using it independently, patients can arrive at medical consultations better informed, allowing for more productive and balanced discussions with their healthcare providers.
The development of the decision aid followed a rigorous, patient-centred framework. Researchers began by identifying gaps in the information patients felt they needed, then conducted a comprehensive review of existing evidence. An initial version of the tool was created and subsequently refined through multiple rounds of testing in clinical settings. In total, more than 120 patients participated across different phases, including needs assessment, prototype testing, and final evaluation, ensuring the tool was both practical and responsive to real-world concerns.
Early testing revealed that many patients experienced significant decisional conflict, particularly due to uncertainty and limited knowledge about DBS. The tool directly addresses these issues by presenting information in a clear, accessible format. In evaluation studies, 94 per cent of participants said they would recommend it, 91 per cent found the language easy to follow, and 87 per cent expressed satisfaction with its overall quality. A distinctive feature of the tool is its personalised symptom report, which allows patients to input their symptoms and receive tailored feedback on the likelihood of improvement following DBS. This helps to correct common misconceptions and manage expectations about surgical outcomes.
The study also uncovered important gender-related insights. Women in the study were more likely to live alone and expressed a greater need for detailed information about post-operative support, including assistance with meals and daily activities. This aligns with earlier research led by Fullard, which found gender differences in how patients seek information, evaluate risks, and decide on DBS. Despite similar rates of Parkinson’s disease between men and women, women remain underrepresented among DBS recipients. Researchers suggest that differences in lived experience and support needs may contribute to this disparity, underscoring the importance of tailored decision-making resources.
More information: Michelle Fullard et al, Development and acceptability of a deep brain stimulation surgery decision aid for Parkinson’s disease, Journal of Parkinson’s Disease. DOI: 10.1177/1877718X261425106
Journal information: Journal of Parkinson’s Disease Provided by University of Colorado Anschutz
