1. A powerful partnership: researchers and patients working together to develop a patient-facing summary of clinical trial outcome data.
- Author
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Ruzich E, Ritchie J, Ginchereau Sowell F, Mansur A, Griffiths P, Birkett H, Harman D, Spink J, James D, and Reaney M
- Subjects
- Humans, Male, Surveys and Questionnaires, Clinical Trials as Topic, Patient Reported Outcome Measures, Research Personnel
- Abstract
Objective: Availability of easy-to-understand patient-reported outcome (PRO) trial data may help individuals make more informed healthcare decisions. Easily interpretable, patient-centric PRO data summaries and visualizations are therefore needed. This three-stage study explored graphical format preferences, understanding, and interpretability of clinical trial PRO data presented to people with prostate cancer (PC)., Materials and Methods: A 7-day online survey exploring people with PC's preferences for different PRO data presentations (stage 1; n = 30) informed development of a draft plain-language resource sheet containing PRO data. After refining for clarity during cognitive debriefing interviews (stage 2; n = 18), the final resource sheet was circulated to people with PC for broader feedback (stage 3; n = 45)., Results: Although participants expressed preferences for certain graphical formats (pie charts and bar charts), preference did not always associate with interpretability and overall message clarity. Iterative development (stages 1 and 2) led to a final resource sheet, which 91.1% of participants in stage 3 considered useful and informative, and 88.9% expressed interest in receiving similar resources in the future., Discussion: Findings demonstrate PRO data are relevant to people with PC and highlights that targeted resource sheets can support patient-clinician discussions. Appropriate graphical formatting and use of plain-language text is essential for conveying interpretable PRO data. Data visualization preferences are context dependent., Conclusion: Resource sheets summarizing clinical trial PRO data can be helpful for decision-making in PC. Researchers and patients can work together to develop clear, relevant, sensitive, and understandable resource sheets, which equally consider patient priorities as well as those of scientists., (© The Author(s) 2023. Published by Oxford University Press on behalf of the American Medical Informatics Association.)
- Published
- 2024
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