Despite being an efficacious therapy for Parkinson’s disease (PD), women make up only 23-30% of recipients, a discrepancy that is not accounted for by differences in PD incidence. One of the many factors that may contribute to this utilization gap includes gender differences in preferences and decision-making. 

In this qualitative study, participants with PD who were considering DBS or had undergone evaluation within the past 3 years participated in semi-structured interviews. An interview guide was developed based on the shared decision-making and DBS literature and the Ottawa Decision Support Framework. Data were analyzed using content analysis methodology to identify major themes. 

Sixteen women and 17 men participated in interviews. Seven participants decided to not undergo DBS. We identified four key themes. First, information sources were similar while information needs differed by gender. Women wanted more information about their post-surgical appearance. Second, the reasons for DBS surgery were often very personal. Women reported spending more time with family as a motivating factor. Third, the decision to undergo DBS surgery was often a long process that started soon after medication escalation with intolerable side effects and included a cycle of information gathering, considering DBS and weighing the risks and benefits. Fourth, while many expressed fear of brain surgery, trust in the surgeon and DBS team helped many overcome this fear. Women in particular tended to describe the risks as not pertaining to them in order to feel more confident moving forward with surgery.

We found gender differences in information needs, reasons patients decided to undergo surgery and how patients weighed risks and benefits, which can be used to inform educational tools and counseling for DBS.