Supporting shared decision making about personalised surveillance after breast cancer: the development of a patient decision aid integrating personalised recurrence risk calculations (Preprint)

UNSTRUCTURED Background and objective: The aim of this study was to develop a patient decision aid (PtDA), integrating personalised risk calculations on risks for recurrences, to support shared decision-making (SDM) about personalised surveillance after curative treatment for invasive breast cancer. Methods: For the development of the PtDA, the International Patient Decision Aids Standards (IPDAS) development process was combined with a mixed-methods design consisting of decisional needs assessment studies, prototyping, and alpha and beta testing. The composed steering group convened in regular working group sessions throughout the development process. Results: The “Breast Cancer Surveillance Decision Aid” consists of three components that each support a step in the SDM process: 1) a handout sheet on which personalised risks for recurrences, calculated using the INFLUENCE-nomogram, can be visualised and which contains explanation about the decision for post-treatment surveillance and a login code for an online deliberation tool; 2) an online deliberation tool, including a patient reported outcome measure on fear of cancer recurrence; and 3) a summary sheet summarising patients’ preferences and considerations. The PtDA was assessed as usable and acceptable during alpha testing. Conclusions: We developed an acceptable and usable PtDA integrating personalised risk calculations on risks for recurrences to support SDM about surveillance after breast cancer. The implementation and effects of the use of the “Breast Cancer Surveillance Decision Aid” are currently being investigated in a clinical trial.