Background: Europa Uomo initiated the Europa Uomo Patient Reported Outcome Study (EUPROMS) to collect prostate cancer (PCa) patient-reported outcome (PRO) data as a primary endpoint. Objective: To inform future PCa patients about the impact of PCa treatment through self-reported PRO data of fellow patients collected outside a clinical trial setting. Design, setting, and participants: A cross-sectional survey was conducted among PCa patients currently receiving or having received treatment. The EUPROMS survey contained the EQ-5D-5 L (generic health), the EORTC-QLQ-C30 (cancer-specific quality of life (QoL), and the Expanded Prostate cancer Index Composite short form 26 (EPIC-26; prostate-specific health) questionnaires. Outcome measurements and statistical analysis: Descriptive statistics were used to assess the demographic and clinical characteristics, and to analyze the PROs of EQ-5D-5L, EORTC-QLQ-C30, and EPIC-26. Results and limitations: Between August 21 and November 19, 2019, 2943 men from 24 European countries completed the EUPROMS survey. The median age of the respondents was 71 yr (interquartile range 65–75 yr); 81.9% was living with a spouse. In total, 1937 (65.8%) men underwent a single treatment, and 636 (21.6%), 300 (10.2%), and 70 (2.4%) underwent two, three, and four treatments, respectively. Fatigue scores are highest for men who underwent radiotherapy or chemotherapy. Progression of disease leads to more insomnia. Surgery affects urinary incontinence the most. Self-reported sexual function amounts to 27/100, with the lowest scores being reported for men who underwent surgery and radiotherapy (15/100). Overall, patients who received two or more treatments reported lower scores for all indices. Conclusions: The EUPROMS survey provided a cross-sectional picture of the current PCa patient population and their reported QoL. Initial treatment is often followed by subsequent treatments, affecting mainly sexual function, as well as fatigue and insomnia. QoL of men undergoing chemotherapy is worse for almost all domains. These data can inform physicians and patients on the true impact of PCa treatment. Patient summary: Patient-reported quality of life in the Europa Uomo Patient Reported Outcome Study (EUPROMS) survey—a more informal setting as compared with clinical trials—reveals that prostate cancer treatment affects mainly sexual function, fatigue, and insomnia. Outcomes of the first ever patient-initiated Europa Uomo Patient Reported Outcome Study (EUPROMS) survey—initiated by Europa Uomo—inform professionals, patients, and the general public that prostate cancer treatment mainly affects sexual and urinary function, as well as fatigue and insomnia.

EORTC-QLQ-C30, EPIC-26, EQ-5D-5L, Patient organization, Patient-reported outcome data, Prostate cancer
dx.doi.org/10.1016/j.euf.2020.11.002, hdl.handle.net/1765/132579
European Urology Focus
Department of Urology

Venderbos, L.D.F, Deschamps, A. (André), Dowling, J. (John), Carl, E.-G. (Ernst-Günter), Remmers, S, van Poppel, H, & Roobol-Bouts, M.J. (2020). Europa Uomo Patient Reported Outcome Study (EUPROMS): Descriptive Statistics of a Prostate Cancer Survey from Patients for Patients. European Urology Focus. doi:10.1016/j.euf.2020.11.002