Decision making processes and needs of breast cancer patients in aftercare; developing a decision aid

INTRODUCTION To develop an efficient decision aid (DA) it is necessary to understand how patients reach their decisions so that the DA can facilitate these processes. Therefore, the aim of the study was to assess which decision processes are used by breast cancer patients when choosing an optimal aftercare trajectory. Additionally, needs and preferences concerning the design of a DA were investigated.

METHOD Patients who have finished their treatment for breast cancer less than 1 year ago were asked to participate in one of 4 focus groups consisting of 4 to 6 participants. A semi-structured questionnaire was used to guide the discussion. All focus group data was coded by 2 independent researchers.

RESULTS Needs concerning an aftercare DA were highly personal and varied from leaflets to digital aids. Breast cancer patients reported to use both medical information and intuition to make decisions regarding their aftercare. While rational processes were used to consider whether options were relevant, intuitive processes played a major role in forming a preference for one option over the others. All patients indicated they wanted to make these decisions together with their healthcare provider, but greatly valued autonomy and preferred to make the final decision themselves.

CONCLUSIONS Both rational and intuitive processes seem to be important for patients in making a decision about their aftercare and should receive attention in the DA. Autonomy appeared to be important for patients as well. Therefore, a DA should allow patients to make an informed decision while maintaining their autonomy.

A decision aid is developed to help facilitate personalized aftercare for breast cancer survivors. Needs, preferences and decisional processes used by breast cancer patients must therefore be investigated.
It is expected that breast cancer survivors use both rational and intuitive processes when deciding on an aftercare trajectory.
It is expected that needs and preferences concerning the decision aid will vary from one person to the next.

All participants are interviewed once

No interventions are used in this study