Patients and professionals agree on most important attributes.
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These attributes need to be used in a patient decision aid.
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There is unwarranted inter doctor variation in informing about side effects.
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Professionals differ in opinion how to inform patients about epistemic uncertainties.
Abstract
Background and aim
There is increased attention for shared decision making (SDM) when deciding on radiotherapy for selected patients with Stage 0–2 breast cancer. This study aimed to explore patients' and health care professionals’ experiences, decisional attributes and needs as input for the development of a patient decision aid to facilitate SDM.
Methods
Qualitative semi-structured interviews were held with fifteen breast cancer patients, being confronted with a radiotherapy decision one month to eight years earlier. Another fifteen interviews were held with professionals specialized in breast cancer care. Interviews were transcribed verbatim and independently coded by two researchers, who agreed upon relevant issues.
Results
Most patients made their decision by weighing the advantages of radiotherapy, i.e. comparing the decrease in recurrence risk with and without radiotherapy, and disadvantages, i.e. possible side effects. Patients and professionals agreed that recurrence risks should be communicated, but not on how to deal with uncertainty. There was wide variation in which, and how, side effects were explained by professionals. The most common side effects mentioned by both patients and professionals were skin toxicity, fatigue and breast deformity.
Conclusion
Patients and professionals appeared to agree on what type of attributes should be communicated during SDM on radiotherapy, but how this should be done is up for discussion. To ensure the patient's voice these attributes and needs need to be incorporated in the risk communication and value elicitation part of the patient decision aid. The format in which the attributes are communicated should be critically evaluated.
