First implementation of the ICHOM standard for breast cancer at a major German university hospital using a web-based tool to measure patient reported outcomes

Purpose:

Collecting patient reported outcome (PRO) data in a systematic way enables an objective evaluation of treatments 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.

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 who are seen at the breast center are enrolled and answer a predefined set of questions using a tablet computer. Once they start their treatment at Charité, automated emails are sent to the patient at predefined treatment points. Those emails contain a web-based link through which they can access their questionnaires.

Results:

Until now we have enrolled 834 patients and initiated 2470 questionnaires. 9.44% of patients were under 40 years of age, 49.7% between 40 and 60, 39.6% between 60 – 80 and 1.3% over the age of 80 years. The average return rate of is 72% without any additional intervention. When asked about preference regarding paper versus online 7.9% of the patients 50 to 60 years of age would prefer paper, 18% in the 60 – 70 years of age group and 21.2% in the age group over 70 years.

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.