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

Abstract

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.

Relations between recurrence risk perceptions and fear of cancer recurrence in breast cancer survivors

“…This can be supported by the use of prediction models, such as the INFLUENCE-nomogram [ 4 ]. Women indicate to welcome this type of information, to support the process of SDM about post-treatment surveillance [ 5 ].…”

“…The INFLUENCE-nomogram is a prediction model which enables the estimation of individual risks for LRRs and SPs within the first 5 years after surgery based on patient-, tumour and treatment characteristics [ 4 ]. This model can be used to identify patients who might benefit from less or more intensive surveillance and to inform patients about their personal risks within the process of shared decision-making (SDM) about personalised surveillance [ 5 ].…”

Health care professionals overestimate the risk for locoregional recurrences after breast cancer treatment depending on their specialty

“…Recent studies have shown that shared decision-making about personalised surveillance is desirable [ 10 , 12 ]. General overestimations of the risk for LRR might hinder objective patient information which is required for shared decision-making.…”

“…The objective risk estimation can therefore be incorporated into a tool, such as a patient decision aid, to support the process of shared decision-making regarding surveillance. In the patient decision-aid, information on the aim and options for surveillance can be provided to put the risk information and need for personalised surveillance in context for the patient [ 12 ].…”

Supportive Care Needs of Breast Cancer Survivors: A Systematic Review

“…Female breast cancer was the most commonly diagnosed cancer, with 2.3 million new cases (11.7%), surpassing lung cancer [1]. The survival rate in patients with breast cancer has improved due to early diagnosis and improved treatment [2,3]. Almost 88% of breast cancer patients survive for ve years or more [4].…”