15250-m-cuypers

30 Chapter 2 2. METHODS 2.1 Participants and data collection Seven hospitals in the southern area of the Netherlands Cancer Registry (NCR) participated in this study. Per hospital a random selection was made of 150 Pca patients who were diagnosed between 2006 and 2009 (stage cT1-cT3). Patients with a cT3- stage tumor were later excluded from this sample as their treatment alternatives and medical condition are less comparable to the cT1 and cT2 stage. Data was collected in October 2011 within Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES). PROFILES is a registry for the study of the physical and psychosocial influence of cancer and its treatment from a dynamic, growing population-based cohort of both short- and long-term cancer survivors. PROFILES contains a large web-based component and is linked directly to clinical data from the NCR 15 . Urologists sent their (former) patients a letter to inform them about the study and to invite them to complete an online questionnaire. On request, patients received a paper questionnaire that could be returned in a pre-stamped envelope. Patients consented on linking questionnaire data to their clinical data from the NCR. Earlier studies on related topics have been carried out within in the same sample 14, 16 . Our study protocol was reviewed and centrally approved for all participating hospitals by the medical ethics committee of one of the participating hospitals. 2.2 Measures 2.2.1 Socio-demographic and clinical characteristics Clinical and patient information was obtained from the NCR (i.e., date of birth, date of diagnosis, disease stage, and initial treatment). The questionnaire included questions on socio-demographic variables (i.e., marital status, employment status, and educational level). 2.2.2 Preferred decision-making role The Control Preferences Scale (CPS) was used to assess the role a patient prefers in treatment decision-making 17 . Responses to this single item question range on a unidimensional scale from passive (‘I prefer to leave all decisions regarding treatment to my doctor’) to active (‘I prefer tomake the decision about which treatment I will receive’). The five answer categories are condensed into three categories, with the first two roles combined as passive, the middle role as shared decision-making (collaborative), and the last two roles as a preference for an active role. The CPS has been used to measure role preferences worldwide for multiple medical conditions and proven to be a valid and reliable measure 18-20 .