Objectives As part of a study to construct a shared-medical decision tool for ovarian cancer maintenance therapy (MT), we developed a knowledge survey to measure patients’ understanding of their cancer and treatment. With the recent expansion of MT indications, patients need to decide if MT is right for them. An understanding of potential risks and benefits associated with MT is paramount to making an informed decision. We explored knowledge differences between newly diagnosed and recurrent patients.
Methods A 32-question survey focused on ovarian cancer (OC) and MT was developed based on interviews with patients and subject matter experts. The survey was modified iteratively using cognitive interviews with patients. Patients with OC with ≥ 3 cycles of chemotherapy and cytoreductive surgery completed the survey by email or phone. No prior background information was given to patients.
Results Clinico-demographic characteristics are shown in table 1 (n=87). Sixty percent had recurrent disease. General knowledge about advanced OC was similar between groups. The majority of patients did not understand the purpose of MT or the definition of progression-free survival. The recurrent group showed a similar lack of knowledge in the same questions as the newly diagnosed group, with no statistically significant differences observed (figure 1).
Conclusions Our data suggests that knowledge of OC among patients is highly variable. The overall lack of understanding regarding the goal of MT even among patients who have recurred is concerning. These gaps in knowledge suggest an important role for shared decision making to improve patients’ decision making about treatment of advanced OC.
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