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Objective To construct a model of shared decision making (SDM) about cancer treatment by conducting an extensive consultation of stakeholders, informed by the literature. Methods 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. Results 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. Conclusions 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.

Objectives To assess the occurrence of questions that foster shared decision making, in particular cancer patients' understanding of treatment decisions and oncologists' understanding of patients' priorities, during consultations in which preference-sensitive decisions are discussed. Specifically, (a) regarding patient understanding, do oncologists ask about patients' preexisting knowledge, information preferences, and understanding and do patients and companions ask about the disease and treatment, and (b) regarding patient priorities, do oncologists ask about patients' treatment- and decision-related preferences and do patients and companions ask about the decision? Methods Audiotaped pretreatment consultations of 100 cancer patients with 32 oncologists about (neo)adjuvant treatment were coded and analyzed to document question type, topic, and initiative. Results The oncologists ascertained prior knowledge in 50 patients, asked 24 patients about preferred (probability) information, and invited questions from 56 patients. The oncologists asked 32 patients about treatment preferences and/or for consent. Respectively, one-third and one-fifth of patients and companions asked about treatment benefits compared with three-quarters of them who asked about treatment harms and/or procedures. Conclusions It would be helpful to patients if oncologists more often assessed patients' existing knowledge to tailor their information provision. Also, patients could receive treatment recommendations that better fit their personal situation if oncologists collected information on patients' views about treatments. Moreover, by educating patients to ask about treatment alternatives, benefits, and harms, patients may gain a better understanding of the choice they have.

Objective: The purpose of this study was to replicate and extend an earlier study carried out in the UK of lay understanding of cancer-related terms in a Dutch sample, by (i) examining understanding of common terms relating to diagnosis, prognosis, and treatment and (ii) experimentally exploring the effect of medical jargon versus plain language use on individuals’ perceived efficacy in interacting with oncologists, participating in medical decision making, and interpersonal trust. Methods: One hundred ninety-four lay people completed a questionnaire assessing (i) understanding, confidence in understanding, and worry after reading 10 scenarios presenting cancer-related terms and (ii)perceived communication efficacy, decision-makingefficacy,and trust following a vignette portraying an oncologist using either jargon or plain language. Results: On average, participants understood a majority (6.81.6) of cancer-related terms, yet only 2.2% understood all 10 terms correctly. Compared with incorrect understanding, correct understanding was generally related to higher confidence in understanding and to worry levels that better matched the scenarios. Language complexity did not significantly affect measures of perceived efficacy or trust. Overallconfidenceinunderstandingwassignificantlyrelated tomeasuresofperceivedefficacy(p

The purpose of this study was to replicate and extend an earlier study carried out in the UK of lay understanding of cancer-related terms in a Dutch sample, by (i) examining understanding of common terms relating to diagnosis, prognosis, and treatment and (ii) experimentally exploring the effect of medical jargon versus plain language use on individuals' perceived efficacy in interacting with oncologists, participating in medical decision making, and interpersonal trust.One hundred ninety-four lay people completed a questionnaire assessing (i) understanding, confidence in understanding, and worry after reading 10 scenarios presenting cancer-related terms and (ii) perceived communication efficacy, decision-making efficacy, and trust following a vignette portraying an oncologist using either jargon or plain language.On average, participants understood a majority (6.8 ± 1.6) of cancer-related terms, yet only 2.2% understood all 10 terms correctly. Compared with incorrect understanding, correct understanding was generally related to higher confidence in understanding and to worry levels that better matched the scenarios. Language complexity did not significantly affect measures of perceived efficacy or trust. Overall confidence in understanding was significantly related to measures of perceived efficacy (p0.01).Similar to the earlier UK study these results suggest that lay people's understanding of commonly-used terms in oncology is suboptimal. Moreover, confidence in understanding was related to perceived efficacy in participating in the consultation. Oncologists should attempt to correct patient misunderstanding to alleviate unnecessary worry and potentially facilitate patient participation.