Background:Collecting patient reported outcome (PRO) data in a systematic way enables an objective evaluation of treatment and its related outcomes. By using the disease specific questionnaires developed by the International Consortium of Health Outcome Measurement (ICHOM) this allows for comparison between physicians, hospitals and even different countries.
Objective:The aim of this pilot project was to establish a digital system to measure patient reported outcomes for new breast cancer patients who attended the Charité Breast cancer clinic. This approach should serve as a blueprint to further expand the PRO measurement to other disease entities and departments.
Methods:In November 2016 we implemented a web-based system to collect PRO data at the breast center at Charité University hospital using the ICHOM data set. All new patients at the breast center were enrolled and were answering a predefined set of questions using a tablet computer. Once they start their treatment at Charité automated emails were sent to the patient at predefined treatment points. Those emails contained a web-based link through which they could access and answer questionnaires.
Results:By now 541 patients have been enrolled and 2470 questionnaires initiated. 9.44% of the patients were under the age of 40, 49.7% between 40 and 60, 39.6% between 60-80 and 1.3% over the age of 80. The average return rate of questionnaires was 67%. When asked about preference regarding paper versus online questionnaires 6% of the patients between 50 to 60 , 6% between 60-70 and 13 % over 70 would prefer paper versions.
Conclusion:Measuring PRO in breast cancer patients in an automated electronic version is possible across all age ranges while simultaneously achieving a high return rate.