Needs and preferences of breast cancer survivors regarding outcome-based shared decision-making about personalised post-treatment surveillance

PURPOSE: In this study, we explored how patients experience current information provision and decision-making about post-treatment surveillance after breast cancer. Furthermore, we assessed patients’ perspectives regarding less intensive surveillance in case of a low risk of recurrence. METHODS: We conducted semi-structured interviews with 22 women in the post-treatment surveillance trajectory in seven Dutch teaching hospitals. RESULTS: Although the majority of participants indicated a desire for shared decision-making (SDM) about post-treatment surveillance, participants experienced no SDM. Information provision was often suboptimal and unstructured. Participants were open for using risk information in decision-making, but hesitant towards less intensive surveillance. Perceived advantages of less intensive surveillance were: less distressing moments, leaving the patient role behind, and lower burden. Disadvantages were: fewer moments for reassurance, fear of missing recurrences, and a higher threshold for aftercare for side effects. CONCLUSIONS: SDM about post-treatment surveillance is desirable. Although women are hesitant about less intensive surveillance, they are open to the use of personalised risk assessment for recurrences in decision-making about surveillance. IMPLICATIONS FOR CANCER SURVIVORS: To facilitate SDM about post-treatment surveillance, the timing and content of information provision should be improved. Risk information should be provided in an accessible and understandable way. Moreover, fear of cancer recurrence and other personal considerations should be addressed in the process of SDM.