A new evidence-based decision tool has been developed by experts at the University of Colorado Anschutz to help people with Parkinson's disease consider whether and when to pursue deep brain stimulation (DBS), according to a March 16 announcement. The tool aims to improve patients' understanding of DBS and increase their confidence as they weigh treatment options.
The development is significant because DBS, while effective for movement symptoms, is a complex intervention that can be overwhelming for patients to evaluate. The new resource seeks to support shared decision-making between patients and doctors, rather than simply providing information.
"We designed this to support real shared decision‑making between patients and doctors, not just information‑sharing. What we found is that patients at every stage of the DBS journey found it useful," said Michelle Fullard, MD, MSCE, Director of Clinical Research at the CU Anschutz Movement Disorders Center. "We see this as a tool that patients can use on their own so they're coming to the table with knowledge about the surgery while talking to their doctors."
To create the aid, researchers identified gaps in patient knowledge through needs assessments and reviewed existing research before refining the tool through repeated testing with over 120 participants. Early testing showed that many patients experienced uncertainty and lacked information when beginning DBS evaluation; the new tool was designed specifically to address these concerns.
The resource includes a personalized symptom report where users enter their symptoms and receive individualized feedback on how likely each symptom is to improve with DBS. This feature helps correct misconceptions about what surgery can achieve. "Patients often go into surgery hoping it will fix a specific symptom, and when that doesn't happen, it can feel disappointing. Our goal is to ensure people have a clear, realistic understanding of what DBS can and cannot do so they feel confident and satisfied with whatever decision they make," Fullard said.
The study also revealed gender-related differences: women were more likely than men to live alone and wanted more detailed information about post-operative support such as help with meals or household needs. Fullard noted that women remain a minority among DBS recipients despite having Parkinson's at nearly similar rates as men—a disparity she attributes in part to differences in experiences rather than disease prevalence.
As next steps, the decision aid is being evaluated in a clinical trial measuring its impact after surgery. It is freely available online at DBSDecisionTool.com, with multiple Parkinson's organizations sharing it within their communities. Researchers plan further multi-site studies and hope eventually to adapt the tool for other conditions beyond Parkinson's disease.
