Abstract

To construct a model of shared decision making (SDM) about cancer treatment by conducting an extensive consultation of stakeholders, informed by the literature. We interviewed 76 stakeholders: cancer patients, potential future patients, oncologists, nurses, and SDM-researchers. We asked, "If I say 'Doctors and patients making decisions together about cancer treatment,' what does this make you think about?" Ideas were further solicited by presenting 19 cards each describing a possible SDM element. Interviews were inductively coded and analysed, and the emerging themes were integrated into a model. The model that was based on participants' views assigns specific roles in SDM to both oncologists and patients. Oncologists determine possible treatments, emphasise the importance of patients' opinion, explain treatment options, get to know patients, guide patients, and provide treatment recommendations. Patients ask questions, express thoughts and feelings, consider options, offer opinions, and decide or delegate decisions to oncologists. Outside consultations, patients search for information, prepare questions, and consider options. Next to oncologists' role, cancer patients also have a clear role in SDM about cancer treatment, during and outside consultations. Patients should receive the support they need to fulfil this requirement.

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