Deciding if and when to pursue deep brain stimulation (DBS) can be overwhelming for people with Parkinson’s disease. While DBS is one of the most effective interventions for movement symptoms, it’s also among the most complex. DBS uses a surgically implanted, battery‑powered device to send electrical signals to areas of the brain that control movement.
To make this decision easier, experts at the University of Colorado Anschutz created the first evidence-based decision tool for patients designed to improve patients’ understanding of DBS and boost their confidence as they weigh treatment options. Their results, published in the Journal of Parkinson’s Disease, show that the majority of patients reported it was helpful in their decision-making process, they were satisfied with the tool and would recommend it to others.
“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 the study’s first author 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.”
Highly recommended and easy to follow
To create the decision aid, the research team used a rigorous, evidence‑based framework designed to ensure the tool met real patient needs. They started by identifying what information patients felt they were missing, conducted a thorough review of existing research, drafted an initial version and then refined it through repeated testing with patients in the clinic.
In total, over 120 patients participated across phases (57 patients participated in the needs‑assessment phase, 22 tested the prototype and 46 evaluated final acceptability).
In early testing, patients beginning the DBS evaluation reported high decisional conflict, particularly around uncertainty and lack of information. The new tool directly targeted these concerns.
In a study of people with Parkinson’s disease:
- 94% said they would recommend it
- 91% found the language easy to follow
- 87% were satisfied with the decision aid’s quality
The tool also includes a unique personalized symptom report. Patients enter their symptoms and receive individualized feedback on how likely each symptom is to improve with DBS -helping correct common misconceptions and “hidden hopes” about what the surgery can achieve.
More confidence in decision-making
“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 adds, who also is a doctor currently treating patients with Parkinson’s disease and other movement disorders.
The study also highlighted important gender‑related insights: women in the study were more likely to live alone and emphasized wanting more detailed information about post‑operative support, such as help with meals and household needs.
This builds on Fullard’s recent research showing clear gender differences in how people with Parkinson’s gather information, weigh risks and benefits, and decide whether to pursue DBS.
“Our research shows that women remain a minority of DBS patients despite having Parkinson’s at nearly similar rates as men. This disparity could come from differences in experiences, rather than disease prevalence, and this study showcases another difference between genders. Women in particular emphasized needing more social support and a clearer picture of life after surgery than men,” said Fullard.
As a next step, the decision aid is currently being evaluated in a clinical trial, where researchers are measuring how much it helped people after the surgery.
The resource is also freely available at DBSDecisionTool.com and multiple Parkinson’s organizations are already sharing it with their communities. Clinicians have already expressed interest in patients accessing the tool before their specialist appointments, helping them arrive more prepared for discussions.
The team plans to expand testing through a multi‑site study and ultimately make the tool available to any center nationwide. Future adaptations are planned for conditions beyond Parkinson’s, including essential tremor.
