Reporting real-world data on prostate cancer treatment outcomes to consumers: the prostate cancer report card
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(Published version)
Date
2023
Authors
Tiruye, T.
Ettridge, K.
O'Callaghan, M.
Moretti, K.
Jay, A.
Higgs, B.
Santoro, K.
Kichenadasse, G.
Roder, D.
Beckmann, K.
Editors
Sahgal, P.
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Journal article
Citation
European Journal of Cancer Care, 2023; 2023(6660371):1-12
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Abstract
Aim. To describe the process of developing a resource, the “Prostate Cancer Outcomes Report Card,” that provides information for men with prostate cancer and their family members about the outcomes of different treatment approaches. Methods. The project consisted of two phases. The first phase involved analysis of real-world data and translating outcomes into a format that consumers found easy to understand and interpret. The Report Card was developed in consultation with a consumer advisory group (n = 8). The second phase involved refinements of the resource through exploratory qualitative interviews with consumers (n = 14), an online survey among the general public (n = 134), and clinician feedback (n = 8). Results. Consumer engagement to explore preferences about the content and visual presentation from the end-users’ perspective was crucial in designing this report. Consumers required trustworthy, comprehensive, simple, and up-to-date information collated in one place to help them understand the risks and benefits of their treatments. Presenting survival, cancer recurrence, and functional outcomes by treatment type and risk category was highly commended while data on high survival rates were considered reassuring. We identified high levels of unmet psychosocial and supportive care need, with differences in individual preferences around extent of information required. Conclusions. Communicating registry data about real-world outcomes in a consumer-friendly way may help fill a gap in information needs among prostate cancer survivors. Providing relatively simple and easily understandable evidence in a single consumer-oriented report may help prostate cancer survivors become better informed and facilitate patient-provider communication and shared decision making.
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Data source: Supplementary materials, https://doi.org/10.1155/2023/6660371
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Copyright 2023 2023 Tenaw Tiruye et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/)