Patient participation in treatment decision-making is being increasingly advocated, although cancer treatments are often guidelinedriven. Trade-offs between benefits and side effects underlying guidelines are made by clinicians. Evidence suggests that clinicians are inaccurate at predicting patient values. The aim was to assess what role oncologists and cancer patients prefer in deciding about treatment, and how they view patient participation in treatment decision-making. Seventy disease-free cancer patients and 60 oncologists (surgical, radiation, and medical) were interviewed about their role preferences using the Control Preferences Scale (CPS) and about their views on patient participation using closed-and open-ended questions. Almost all participants preferred treatment decisions to be the outcome of a shared process. Clinicians viewed participation more often as reaching an agreement, whereas 23% of patients defined participation exclusively as being informed. Of the participants, X81% thought not all patients are able to participate and X74% thought clinicians are not always able to weigh the pros and cons of treatment for patients, especially not quality as compared with length of life. Clinicians seemed reluctant to share probability information on the likely impact of adjuvant treatment. Clinicians should acknowledge the legitimacy of patients' values in treatment decisions. Guidelines should recommend elicitation of patient values at specific decision points.

PurposeTo validate the Dutch version of the EORTC QLQ-CR29 quality of life questionnaire for colorectal cancer.MethodsWe translated and pilot-tested the original questionnaire in the Netherlands, following EORTC guidelines. We assessed factor structure, reliability and construct validity in different samples of patients from four hospitals.ResultsOf 296 patients, 236 (80 %) returned the questionnaire, and 27 out of 48 patients returned the retest questionnaire. In addition to the original three scales, we found a reliable bowel functioning scale (α = 0.80), reducing the number of individual items by five. Two of the other scales had sufficient to good reliability (urinary frequency, α = 0.71, original α = 0.75, body image α = 0.80, original α = 0.84), the third, blood and mucus in stool, only moderate (α = 0.56, original α = 0.69). Item functioning was sufficient to excellent for all but two items (urinary incontinence and dysuria). Construct validity was similar to that in earlier studies.ConclusionWe found a very satisfactory scale for bowel problems, in patients both with and without stoma. The body image and urinary incontinence scales were reliable, and construct validity was sufficient. We suggest the questionnaire to be adapted to decrease the number of individual items, improve the scales, and therefore increase reliability of the entire questionnaire.

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.

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