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

Abstract

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.

Evaluation of the Implementation of the Dutch Breast Cancer Surveillance Decision Aid including Personalized Risk Estimates in the SHOUT-BC Study: A Mixed Methods Approach

“…Disap-pointment in a lack of a tangible effect on the intensity of surveillance appointments might significantly impact HCPs' motivation for (long-term) use of the BCS-PtDA. Although we observed a change in intensity of the frequency of surveillance appointments in the SHOUT-BC study, it was only a slight decrease [19]. Therefore, it is important to make sure that HCPs have realistic expectations about the goal of the BCS-PtDA.…”

“…Mixed methods were used to perform the process evaluation. This evaluation was embedded within the SHOUT-BC study (see Figure 1 for a graphic overview of the SHOUT-BC study) [10,18,19]. This study was conducted in accordance with local laws and regulations.…”

“…ing process as more active. Furthermore, patients found the BCS-PtDA and the use of risk information regarding personalized risks for LRRs and SPs relevant and useful [19].…”

“…The effectiveness of the BCS-PtDA was evaluated in the SHOUT-BC study [18,19]. The results of the SHOUT-BC study showed that the use of the BCS-PtDA led to a higher level of patient-reported SDM and that patients perceived their role in the decision-making process as more active.…”

“…The results of the SHOUT-BC study showed that the use of the BCS-PtDA led to a higher level of patient-reported SDM and that patients perceived their role in the decision-making process as more active. Furthermore, patients found the BCS-PtDA and the use of risk information regarding personalized risks for LRRs and SPs relevant and useful [19].…”