15250-m-cuypers

38 Chapter 2 groups on the information scales. This could indicate HRQoL and decision-making role preferences both explain separate areas of the variation within the information scales. To investigate this causality, a prospective study on this topic is needed. To improve information provision practices to men with a preference for a PDM role, early recognition of role preferences may be needed. Although we found age and education level to be associated with decision-making role preferences, we also found that the effect of role preferences is still existent when controlling for age and education level. Previous studies indicated that demographics like age and education only explain 20% or less of the variability in preferences 29 . Additional explanation for differences in preferences could therefore be found in personality variables 30-32 . The role of personality traits in the involvement in the decision-making process should be investigated more thoroughly, so that interventions to support information provision and the decision- making process could be targeted more specifically. The finding in this study that even four years after diagnosis a substantial part of the responders indicated a PDM role preference, although having gained knowledge about their condition and insights on the consequences of earlier decisions, is somewhat surprising. Other studies have found that if preferences are assessed retrospectively, more patients indicate a preference for a passive role, particularly in samples of cancer patients compared to non-cancer patients 33 . This could explain why still 20 percent of men indicated a passive role preference in this study. It could also be that experience with the decision-making process made patients more aware of the burden and difficulty of the decision they faced, increasing the tendency -in hindsight- to prefer a less active role. Increased stress levels and the feeling of being overwhelmed by the provided information are known to cause impaired cognitive processing 34, 35 . This could lead to preferring to simplify a complex situation by deferring the decision to a doctor overseeing all offered alternatives. Shared decision-making literature also suggests disentangling process involvement from the actual decision responsibility 36 . This implies patients still can have an active role in the process leading to the treatment decision, but prefer to leave to actual decision to the clinician. We did not observe hospital specific effects on decision-making role preferences, which could indicate that the preferences indicated in this study represent a stable trait. Further, it may also indicate that there is a certain level of information provision all hospitals fulfill to but that the patients’ role preference possibly does not fit this non- tailored approach in information provision.