A Decision Aid For Deep Brain Stimulation (DBS) Surgery An advanced therapy option for people with Parkinson’s Disease
Development of This Tool
Authors
The authors of this decision aid are a team of researchers and clinicians with expertise in movement disorders, shared decision-making and decision aid development, and qualitative and mixed methods. The steering group who critically reviewed this decision aid was made up of movement disorder neurologists, functional neurosurgeons, neurophysiologist and DBS nurses and navigators.
Michelle Fullard, MD, MS is an Assistant Professor of Neurology in the Division of Movement Disorders at the University of Colorado and Director of Clinical Research for the division.
Daniel Matlock, MD, MS is a Professor of Medicine in the Division of Geriatrics at the University of Colorado and Director of the Program for Patient Centered Decisions.
Megan Morris, PhD, MPH is an Associate Professor in the Division of General Internal Medicine in the Department of Medicine at the University of Colorado.
Steering Group: Drew Kern, MD, MS (Movement Disorders), Alex Baumgartner, MD (Movement Disorders), Steve Ojemann, MD (Functional Neurosurgery), Dan Kramer, MD (Functional Neurosurgery), John Thompson, PhD (neurophysiology), Maria Kelley, RN (DBS Nurse Navigator).
This website was developed by Neuro IT.
Funding
Funding for the development of this tool was provided by grants from the Davis Phinney Foundation, the Lorna G. Moore Faculty Launch Fund and the NIH BIRCWH (Building Interdisciplinary Careers in Women’s Health) K12.
References
To develop this decision aid, we reviewed studies, meta-analyses and systematic reviews on DBS outcomes. The majority of these studies were randomized clinical trials, which is the highest level of clinical evidence available. We conducted interviews with people with Parkinson’s disease who had either undergone DBS or had considered DBS but decided not to undergo surgery. In these interviews, we asked people how they made their decision about undergoing DBS and about their experience with DBS. We combined the findings from the literature and interviews to develop a DBS decision aid prototype. We showed this prototype to people with Parkinson’s disease who had undergone DBS or were considering DBS to get their feedback on the tool. After each round of interviews, we made changes to the decision aid and then presented it to another group. This process continued until no new feedback was obtained. The tool was then presented to the Colorado Program for Patient Centered Decisions Patient and Family Research Advisory Panel for additional feedback. Lastly, the tool was presented to the Steering Group and final changes were made.
Members of the research team will continue to review the clinical evidence yearly and revise the content of the decision aid to ensure it is up to date.
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