The value of collecting patient reported outcomes (health-related quality of life) in clinical research, particularly when assessing new treatments, is well established. Traditionally patients are asked to complete hard copy questionnaires which can be resource intensive. Technology has facilitated the creation of electronic Patient Reported Outcomes (‘ePROs), where patients complete questionnaires on-line. Web-based systems allow real-time capture of treatment side-effects at pre-specified time points thus streamlining data collection and reporting. Our site participates in the RSSearch Registry for patients receiving CyberKnife radiotherapy. The Registry is powered by the VisionTree Optimal Care 360 platform which has a patient portal that enables ePRO data collection to facilitate patient centred care. We report our initial experience as the first RSSearch centre utilising the patient portal.
50 patients undergoing CyberKnife treatment for a solid tumour diagnosis are being invited to access the Patient Portal and electronically complete EORTC QLQ-C30 quality of life questionnaires and any site-specific modules at baseline (pre-treatment), 6 weeks, 3 months and 6 months post treatment. The patient and research team experience in the development and application of the patient portal is being documented via feedback forms. This will assess the challenges, advantages and disadvantages of utilising this new system in order to assess the feasibility of utilising the system for all future participants of the RSSearch Patient Registry at our site.
Outcomes and evaluation:
Customisation of the patient portal to reflect the correct questionnaires and time-points and going live in the patient setting had several challenges. 16 patients have been invited to-date, with 13 being registered, 3 declining, and 26 being omitted due to technical difficulties experienced with the system. Final results will be presented, with the hope that the benefits of having a system such as this set up for future use will outweigh the implementation challenges.