PLAN-HERACLES

Plan for Determining the Psychometric Properties of, and the Feasibility of Implementing, an Electronic Patient Reported Outcome Measure Tool to Monitor Rheumatoid Arthritis Disease Activity.

This study carries on from the SOCRATES study, which focussed on Patient Reported Outcome Measures (PROMs) for Rheumatoid Arthritis (RA) Disease Activity (DA). The results showed that RA DA can be measured with just five items, with one from each of the Pain, Disease activity, Tenderness and swelling, Physical functioning and Stiffness domains.

This research involves the collection, and analyses, of data using three surveys. The first and second surveys will be about the use of the future data collection and presentation of the weekly DA monitoring tool for people with RA (pwRA) and healthcare professionals (HCPs) involved in the care of pwRA.

The survey for pwRA will be sent out through the National Rheumatoid Arthritis Society (NRAS) and will ask questions on how useful a weekly DA monitoring tool would be to them, how likely they would be to use the tool, how often they would want to enter data into the tool (currently hypothesised to be weekly), how many items they would want to complete and how effective the tool would have to be to make the repeated collection of data worth it.

The survey for HCPs will be sent out through the British Society of Rheumatology (BSR) to ask questions about how they would envisage using the tool, how useful the tool would be to them, how likely they would be to use it and how easy they think it would be to implement.

The third survey will be sent out via social media and adverts in relevant clinics to current users of the My Clinical Outcomes (MCO) system in Cardiff and Vale University Health Board (C&VUHB) to ask them about their interactions with the system, what they like and what they think could be improved. The reasoning behind asking about the MCO system is because MCO have a contract with C&VUHB for the collection of electronic PROMs. Therefore, any notions of improvements we can make in this system will improve it for pwRA ahead of them using it and will lead to improvements in the MCO system for all users.

Patient and public involvement

PwRA have been, and will be, involved throughout the whole life-cycle of this study: from designing the surveys to interpreting the results.

Co-investigator

- Name: Professor Ernest Choy

- Email: ChoyEH@cardiff.ac.uk