A New Tool to Help Parkinson's Patients Weigh DBS Surgery
Greta Jendrock
Facing Deep Brain Stimulation (DBS) for Parkinson's can be scary, being a brain surgery with a lot of potential but also risks. A 2026 University of Colorado study tested a free decision aid that aims to assist patients in making this important decision, helping patients clarify goals and cut confusion. We dove into the paper and the actual tool (linked below).
The study found high "decisional conflict" (score 35.3/100) among 57 PD patients evaluating DBS. Common worries were: Will it fix my symptoms? What's the infection risk? The aid, built to IPDAS standards, delivers balanced facts via booklet or interactive site.
It encourages patients to ask questions, not just to themselves but also to their doctors, surgeons or fellow patient ambassadors. The main questions it asks patients to reflect on are:
What symptoms must get better for you to consider DBS successful for you?
What risks really concern you?
What are your biggest questions;
…for your doctor or surgeon? …for your caregiver or family? …for patients with DBS?
After coming to terms with their answers for these questions, there is a long list of questions that proved helpful for a lot of patients to ask their physician in order to feel informed and make a fact based decision for one's health.
The booklet also provides a lot of information prior to these questions to ensure an informed decision can be made. The main information is: DBS improves tremor (up to 90%), slowness/stiffness (50-70%), OFF time (70% less), dyskinesia (65% reduction). Often halves PD meds. It however does rarely help with Balance, cognition, depression, speech, constipation. Freezing gait? Only if levodopa-responsive. Possible risks are infection (2-4/100), bleed/stroke (3/100), seizure (<1/100). 92/100 complication-free. The procedure mostly fits patients with Mid-stage PD (4+ years symptoms), levodopa-responsive motors, no major cognition issues. Not as a last-resort, best before meds fully fail. There are different devices available; Abbott (virtual programming), Boston Sci (precision control), Medtronic (brain sensing). Rechargeable vs. non- (3-15 yr life). Alternatives for the surgery are Duopa gel pump or focused ultrasound (tremor only).
The booklet was evaluated by 46 PD patients: 87% satisfied, praised clarity/balance. "Easy to follow... promotes doctor talks."
If you are curious, the actual booklet is linked here if you want to read about this in more detail: DBS Decision Aid PDF
Full Study: Journal of Parkinson’s Disease. Fullard ME, Shelton E, Dafoe A, Kern DS, Morris MA, Matlock DD. Development and acceptability of a deep brain stimulation surgery decision aid for Parkinson's disease. J Parkinsons Dis. 2026 Feb 18:1877718X261425106. doi: 10.1177/1877718X261425106. Epub ahead of print. PMID: 41706627.
