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207 Summary and general discussion 11 SUMMARY OF RESULTS In this chapter, the main findings of the studies reported in this thesis are summarized. Based on these results, considerations for DA development and implementation, and implications for clinical practice and future research are discussed. This thesis started with an investigation into the preferences for involvement into treatment decision-making and satisfaction with information received in a sample of Pca patients who already chose a treatment previously ( Chapter 2 ). For seven hospitals within the southern area of the Netherlands Cancer Registry (NCR), a random selection of 150 Pca patients per hospital was made consisting of patients diagnosed between 2006 and 2009. These patients were sent a questionnaire measuring decision-making role preferences and the evaluation of information received, within the Patient Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship (PROFILES) Registry. After exclusion of high-risk Pca patients, who fall out of the scope of this dissertation, response was obtained from562 patients with low- or intermediate risk Pca (response 71%). A majority of these men preferred a collaborative (shared patient- doctor) or active (patient-driven) decision-making role (81%), and 19% of the men in our sample preferred a passive (doctor-driven) role in treatment decision-making. A disadvantage of the measure that was used to determine role preferences (Control Preferences Scale) consisted of not being able to differentiate between a preference for involvement into the decision process or the for making the decision itself, which could be different. Men who preferred a passive role were significantly older and less educated compared to both other role preference groups. Information satisfaction was lower for men with a passive role preference, they reported to have received less information, and judged the information as less helpful. Across all role preferences groups, between 25-30% of men indicated they would have wanted to have received more information before they made their treatment decision. However, the cross-sectional design of this study did not allow to infer causality from these results. Where chapter 2 retrospectively assessed satisfaction with information, and the relation with decision role preferences, we intended to obtain more insights in the impact of receiving a Pca diagnosis and the following process of treatment selection. Therefore, we undertook a prospective study including patients when scheduled for prostate biopsy because Pca was suspected, but had not been confirmed yet ( Chapter 3 ). It is known that many patients experience a decline in health-related quality of life (HRQoL) as a consequence of Pca treatment and its associated side-effects. Our expectations were that a decline in HRQoL would already appear before treatment onset as a result of the burden of receiving the diagnosis and choosing a treatment. Moreover, we were

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