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

## TL;DR

Researchers worked with patients and doctors to design better ways to visualize health reports in breast cancer care, aiming to improve communication and decision-making.

## Contribution

Co-designed user-centered visualizations for patient-reported outcomes in breast cancer care, validated through patient and provider feedback.

## Key findings

- Clear labels, consistent directionality, and simple alert markers were preferred for PRO visualizations.
- Color schemes like traffic-light systems and blue gradients had mixed emotional impacts.
- Patients and providers favored access to PRO results in both paper and digital formats.

## Abstract

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.

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.

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.

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.

Patient-reported outcomes (PROs) are questionnaires that allow patients to share how they feel, what symptoms they experience, and how their illness affects daily life. These reports can help doctors and patients make better decisions together. However, the way PRO results are currently presented is often confusing and makes it harder for patients and doctors to use them in everyday care. In this study, we worked with patients, doctors, and designers to create clearer and more user-friendly ways of showing PRO results for people with breast cancer. We tested different design options by showing examples to patients and health professionals and asking for their opinions. We found that people wanted clear labels, simple symbols for warnings, and consistent ways to show missing information. Some liked color schemes such as traffic-light colors, while others preferred more neutral designs. Both patients and doctors thought it was important to have results available in both paper and digital formats. Our findings provide practical recommendations to make PRO results easier to understand and more useful in cancer care.