Session Item

To present one year experience of using an extended version of an in-house developed patient-reported outcome measures (PROM) platform which allows symptom tracking. This feature is fully and automatically triggered by events in the oncology information system (OIS).

Starting in October 2021, every eligible patient with breast cancer, prostate cancer or head-and-neck cancer was enrolled on a voluntary basis into the long-term follow-up arm of the IRB-approved Patient Experience Data in Radiation Oncology (PEDRO) study (EK 2184/2019). Before October 2021, patients were enrolled in the on-treatment acute side effect arm only. Consenting participants answered a predefined set of questions from the PRO-CTCAE catalogue. The sensitivity of our tool was demonstrated in a previous study. Surveys were carried out weekly and at the end of therapy on tablets in the out-patient clinic for the duration of the treatment. Assistance by radiotherapy professionals at the baseline survey was offered, to improve the ease of use for patients. Alternatively, patients providing their e-mail address were given the option to complete their weekly survey online. Additionally, those patients received a link to the survey for follow-up at predefined intervals. The PROM application, the app-server and database infrastructure were all developed in-house.

A total of 1014 patients (710 breast cancer, 185 prostate cancer, 51 head-and-neck cancer and 68 with other) participated in this real-world PROM setting. 660 patients (65 %) provided an e-mail address. Thus, two thirds of our recruited patient collective has the potential for e-mail based follow-up.

In the first year (October 2021 to October 2022) 563 patients were recruited for the follow-up arm (77 did not provide an e-mail address, 23 dropped out, 1 patient deceased). In October 2022, a total of 363 patients were in follow-up and 99 patients were still on treatment. During the first year a total of 1969 e-mails were sent resulting in 1786 completed surveys. During therapy this results in a response rate of more than 95% (1515 responses for a total 1589 e-mails sent). Considering only the follow-up a total of 380 e-mails were sent yielding 271 completed surveys. This represents a response rate of 71 %.

PROMs were successfully implemented into clinical routine and extended to an OIS triggered automatic follow-up via e-mail. The high level of automation reduced the workload for the study office without compromising the response rate. This proved that the actions to reduce the common barriers for rolling out PROMs were effective. In case of under-representation of a cohort (e.g., older people without an e-mail address) the e-mail-based follow-up could be extended with a telephone-based follow-up.