Lea Lund

Gynecological cancer patients share insights for better shared decision-making

To examine gynecological cancer patients' preferred role in decision making, their experienced involvement, and their advice to patients and clinicians on preparing for and supporting SDM in clinical consultations. Two validated questionnaires, the Control Preference Scale (CPS) and CollaboRATE, were used to assess patients' preferred roles in SDM and their perceived level of involvement in medical decisions. Two open-ended questions were included to gather descriptive advice from patients, intended for both patients and clinicians. The sample for this survey was drawn from participants in a Danish patient advocacy group. In total, 117 patients completed the CPS, with 90% (n = 105) indicating a preference for an active role and 10% (n = 12) indicating a preference for a collaborative role in decision making. Mean item scores for CollaboRATE (n = 114) were 6.6 (SD = 2.1) for explanation, 5.2 (SD = 2.6) for preference elicitation, and 5.5 (SD = 2.5) for integration, with 7.9% of the respondents giving a top score. The most repeated theme of advice to patients was to ask questions. Empathic communication, including active listening and the provision of clear, easy-to-understand information, was the most frequently emphasized advice to clinicians. Patients with gynecological cancer express a strong desire for involvement in SDM; however, many report that their experienced level of participation falls short of their preferences. They recommend an active role by asking targeted questions, thoroughly understanding benefits and risks of options, and remaining persistent in expressing needs. Patients emphasized the importance of empathetic communication, active listening, and the provision of clear, easy-to-understand information by clinicians. Our findings offer actionable recommendations to bridge the gap between patients' preferred role in SDM and their actual experiences across the care journey. By incorporating these recommendations, both patients and clinicians can adopt practical strategies to facilitate more personalized, patient-centered decisions aligned with individual preferences and needs.