Improving Shared Decision-Making for Women with Parkinson’s Disease
Michelle Fullard1, Megan Morris2, Ashley Dafoe2, Erika Shelton1, Drew Kern1, Dan Matlock2
1Neurology, University of Colorado, 2University of Colorado School of Medicine
Objective:

Develop and test a decision aid for Parkinson’s Disease (PD) patients considering deep brain stimulation (DBS) surgery, with an emphasis on women’s decisional needs.

Background:
When considering DBS, women are more likely to decline surgery or express fear of complications compared to men. Studies in other surgical procedures have found that women are less informed about surgery as a treatment option, exhibit higher decisional conflict and are more likely to decline procedures, citing the need for more information. 
Design/Methods:

Semi-structured interviews were conducted with PD patients who had undergone DBS evaluation. A decision aid was developed based on best evidence from the literature and insights from the interviews and underwent four rounds of alpha testing. In a before-after study design, PD patients considering DBS completed surveys on decisional outcomes, including the primary outcome, the Decisional Conflict Scale (DCS). Surveys were performed at baseline and after usual care over the first year. In the second year, participants will complete surveys at baseline and after exposure to the decision aid.

Results:

In interviews with 16 women and 17 men, women reported overall less support. Informational sources were similar between the genders, although women more often reported seeking out others who had DBS. In the before-after study, 31 participants completed baseline surveys and 16 so far have completed the post-usual care surveys. The mean DCS score was 34.9 (18.3) before usual care and 20.6 (16.6) after usual care. Scores lower than 25 are associated with implementing decisions. On all subscales, women had higher scores, indicating higher decisional conflict, however, these differences did not reach statistical significance on interim analysis.

Conclusions:
We developed a DBS Decision Aid employing a user-centered design to meet the decisional needs of women with Parkinson’s disease. A pilot study is currently underway to test the feasibility, acceptability and effectiveness of the decision aid.
10.1212/WNL.0000000000203182