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Patient-reported outcomes (PROs) are increasingly recognized as valuable data to enhance communication and support shared decision-making in cancer care. Despite evidence of their positive effects, few concrete approaches exist for the design and presentation of PRO visualizations. Even in high-incidence cancers such as breast cancer, limited knowledge is available on how patients perceive and interpret graphical displays of PRO results. This study evaluated different visualization formats of PRO data, that had been co-designed with patients and healthcare providers within the PRO B study, a large randomized controlled trial investigating alert-based PRO monitoring in patients with metastatic breast cancer. After completion of the PRO B study, patients from both intervention and control group received a paper-based questionnaire together with their individual PRO data report featuring visualizations developed in a preceding design study. Survey items assessed comprehensibility, usefulness, and preferences regarding specific visualization features using Likert scales. Analyses included Mann-Whitney U tests for Likert scale answers, Pearson’s Chi-squared tests for categorical variables and two-sided independent-samples t-tests for numeric variables. We collected feedback from 276 participants of the PRO B study. The findings demonstrate a strong overall endorsement on the clarity, emotional appropriateness and usefulness of the suggested graphical displays. Results highlight their potential for enhancing patient empowerment through improved self-awareness and better patient-provider communication. The positive feedback from PRO B study participants validate the suggested design concepts of PRO data and underscores their valuable role in making these outcomes more accessible, meaningful, and actionable for patients. These data provide the base for developing more flexible, interactive digital tools for routine care. DRKS00024015 Registered 15.02.2021 https://drks.de/search/de/trial/DRKS00024015/details. Patient-reported outcomes (PROs) refer to information that patients provide about their symptoms, daily functioning, and quality of life, often collected through standardized questionnaires. These questionnaires collect patient-reported outcomes (PROs) - information that reflects how patients perceive their health and well-being. These insights can give doctors information that medical tests alone cannot provide. PRO data can improve communication and support shared decision-making in cancer care. However, the way PRO results are usually presented in charts and graphs can be confusing and sometimes overwhelming for patients. In this study, we tested new types of visualizations for PRO data that were co-designed with patients and healthcare professionals. We asked 276 women with metastatic breast cancer to review their own results displayed in these formats and to share their views. Patients evaluated how clear, useful, and emotionally acceptable they found the displays. The majority reported that the new visualizations were easy to understand, supportive for self-reflection, and helpful for conversations with doctors. Our findings suggest that carefully designed, flexible visualizations can make PRO data more accessible and meaningful, thereby promoting more patient-centered cancer care.
Published in: Journal of Patient-Reported Outcomes
Volume 10, Issue 1, pp. 12-12