Abstract

Women make up only 23% to 30% of recipients for deep brain stimulation (DBS) surgery for Parkinson's disease (PD), a discrepancy that is not accounted for by differences in disease incidence. One of the many factors that may contribute to this gap includes gender differences in decision-making. The aim was to explore how women and men approach the decision for DBS in terms of informational needs, weighing risks and benefits, and decision-making. Semistructured interviews were conducted with 33 participants with PD who had undergone DBS evaluation within the past 3 years. Data were analyzed using content analysis. Sixteen women and 17 men participated in interviews. We identified 4 key themes. First, information sources were similar between women and men, and they valued hearing personal experiences. Second, the motivations for DBS surgery were often very personal. Third, the decision-making process occurred over time, sometimes years. Fourth, although many expressed fear of brain surgery, trust in the surgeon helped many overcome this fear. Women overall had less support than men during decision-making and after surgery. Women also placed greater value on talking to other women who had undergone DBS, although they had a hard time finding these women. Men, on the contrary, were less often worried about support and valued numerical information when weighing risks and benefits. We found gender differences in information needs, support, motivating factors, and how patients weighed risks and benefits. These differences can be used to inform educational tools and counseling for DBS.

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