Abstract
PurposeTo give an overview of the multicenter Prostate Cancer Outcomes (PCO) study, involving paper-based and web-based collection of patient-reported outcome measures (PROM) in patients undergoing local treatment for prostate cancer in certified centers in Germany. The PCO study is part of the larger Movember-funded TrueNTH Global Registry. The article reports on the study’s design and provides a brief progress report after the first 2 years of data collection.MethodsProstate cancer centers (PCCs) certified according to German Cancer Society requirements were invited to participate in collecting patient-reported information on symptoms and function before and at least once (at 12 months) after treatment. The data were matched with disease and treatment information. This report describes progress in patient inclusion, response rate, and variations between centers relative to online/paper use, and also data quality, including recruitment variations relative to treatment in the first participating PCCs.ResultsPCC participation increased over time; 44 centers had transferred data for 3094 patients at the time of this report. Patient recruitment varied widely across centers. Recruitment was highest among patients undergoing radical prostatectomy. The completeness of the data was good, except for comorbidity information.ConclusionsThe PCO study benefits from a quality improvement system first established over 10 years ago, requiring collection and harmonization of a predefined clinical dataset across centers. Nevertheless, establishing a PROM routine requires substantial effort on the part of providers and constant monitoring in order to achieve high-quality data. The findings reported here may be useful for guiding implementation in similar initiatives.
Highlights
The mortality rate associated with prostate cancer is low in comparison with other cancers, but patients may suffer from severe impairment of their functional status due to disease and treatment, with regard to erectile function and continence [1]
The data in the Prostate Cancer Outcome (PCO) study and the TrueNTH Global Registry (TNGR) are collected in accordance with the International Consortium for Health Outcomes Measurement (ICHOM) standard set for localized prostate cancer [9], with a few additional items
All prostate cancer centers (PCCs) that are certified in accordance with the requirements of the DKG [10] were invited to participate
Summary
The mortality rate associated with prostate cancer is low in comparison with other cancers, but patients may suffer from severe impairment of their functional status due to disease and treatment, with regard to erectile function and continence [1]. The German Cancer Society — together with the OnkoZert certification institute and the Federal Association of German Prostate Cancer Patient Support Groups and the Movember Foundation — has launched an outcomes data collection system that combines previously collected clinical data with a paperbased and web-based system for collecting patientreported outcome measures (PROM) in routine prostate cancer care. This effort, known as the “Prostate Cancer Outcome (PCO)” study, is part of the larger TrueNTH Global Registry (TNGR) funded by the Movember Foundation [7]. The present article reports on the design of the PCO study and provides a brief progress report after the first 2 years of data collection
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