OBJECTIVES: Breast cancer is the most common malignancy among Canadian women (excluding non-melanoma skin cancers) and treatments can substantially affect health-related quality of life. Understanding the impact of interventions on Canadian patients' quality of life is crucial in promoting patient-centered care. Our objective was to develop and validate a questionnaire that captures Canadian patient experiences and preferences regarding breast cancer medication(s).

METHODS: Adults previously treated for breast cancer and other cancer patients were recruited through the Quebec Breast Cancer Foundation (QBCF) and Canadian Breast Cancer Network (CBCN) patient organizations. Expert recruitment targeted oncologists, radiation-oncologists, and researchers. Following a literature review and collaboration with experts, draft questions focusing on the impact of treatment-related side effects were generated and adapted based on initial feedback from patients. Content validity was assessed in two phases: 1) two rounds of a modified Delphi panel to gather inputs and elicit consensus (defined a priori as ≥70% of panelists in agreement) on patient questions, and 2) 1:1 interviews following the Professional Society for Health Economics and Outcomes Research (ISPOR) guidelines. Changes also included suggestions from interviewees.

RESULTS: Three patients and four Canadian experts (one health-service researcher, one radiation-oncologist, and two medical oncologists) participated in the two-round Delphi panel. Panelists’ comments on wording and relevance of question items were incorporated in the revised questionnaire. Subsequently, eight patients and seven experts provided additional feedback on revised questionnaire. Plain language editing, order of questions, and response options were adjusted based on participants’ comments.

CONCLUSIONS: Final questionnaire consists of 17 questions, refined based on input from patients and experts. Based on expert review, this questionnaire can capture breast cancer patient experiences and preferences on medications to help better match patients with treatments. Additional validation testing is planned to establish the properties of the questionnaire and identify norms.