15250-m-cuypers

39 Decision role preferences and information satisfaction 2 The median time of 48 months between diagnosis and survey carries the risk for recall bias. However, if present, it is most likely that this bias is distributed randomly across all decision-making role preference groups in our sample. Although it is in the human nature that some information is forgotten over time, there is evidence that recall is not associated with age 37 38 39 . This could be an indication that our finding that older men prefer a passive rolemore than younger men is not caused by a group specific recall bias. Though, it should be taken in consideration that the receipt of information following Pca diagnosis is likely to be disturbed by the complex nature of the information and emotion involved to receiving the diagnosis 40 . Compared to that situation, our respondents were free from the distress of diagnosis and treatment decision-making at the moment of survey. This could reduce generalizability of our results to patients who are closer to diagnosis. Another limitation of this study is that we only measured the preferred decision- making role post-treatment without having information about the actual role during treatment decision-making. While other studies report only small proportions of extreme discordance between preferred and experienced role, it is also known that role preferences can change during the decision-making process 5 7 36 . For this change in preference to occur, a patient must be aware of the importance of being involved. Often, patients assume there must be one superior treatment option instead of multiple preference-sensitive alternatives, and therefore not realizing the actual possibility to choose 1 . However, all patients in our sample have previous experience in treatment decision-making. A major strength of this study was the population-based sample of Pca survivors that was available. Also, the response rate was high. However, the cross-sectional design of this study does not allow to determine causal relations between decision-making role preference and evaluation of information received. More research is needed to determine the direction in this relationship. To broaden our understanding of the nature of role preferences and its relation with information provision and treatment decision-making, a prospective study should look into the process of patient involvement from the moment of Pca diagnosis. The role preferences identified in the current research could be interpreted as a trait, since evaluation took place long after diagnosis. This trait could lead to behavior or attitudes in patients that cause clinicians to provide less information or misinterpretation of preferred roles 41 42 . Distress following diagnosis or improved insight in the decision