From participatory design to clinical routine: new concepts for visualizing patient-reported outcomes in breast cancer care.

BACKGROUND: Patient-reported outcomes (PROs) improve cancer care by enabling structured self-assessment of disease-related symptoms, overall functioning, and health-related quality of life. Despite proven benefits, routine use is still limited, in part due to suboptimal data visualization. METHODOLOGY: In a sub-study of the multicenter PRO B trial (52 centers, 924 patients with metastatic breast cancer), an interdisciplinary team of clinicians, researchers, patient representatives, and service designers co-developed user-centered PRO visualizations. Drawing on a literature review, an analysis of existing tools, and iterative mock-up development, the team generated initial design concepts. These concepts were then evaluated in semi-structured interviews with eight patients and five providers to assess clarity, emotional impact, usability, and potential for implementation. The interview data were analyzed thematically using a mixed deductive-inductive approach. RESULTS: Eight key themes emerged: axis labeling, color schemes, background lines, alert representation, reference data, missing data, format/additional information, and practical application. Preferences included clear labels, consistent directionality, and simple alert markers. Color views diverged: traffic-light schemes were intuitive to some, but evoked negative reactions; blue gradients were perceived as neutral. Reference data aided context for some but discouraged others, supporting optional display. Missing values required consistent marking. Patients preferred access via both paper and customizable digital tools. CONCLUSIONS: Co-designed, user-centered visualizations enhance PRO interpretability, emotional acceptability, and clinical utility. Implementing these recommendations can strengthen communication, support shared decision-making, and promote patient-centered cancer care.