Rheumatoid Arthritis Awareness Week 2024 – SOCRATES, PROMs and PLAN-HERACLES

It is Rheumatoid Arthritis Awareness Week this week (16^th to 22^nd September 2024), which is organised by the National Rheumatoid Arthritis Society (NRAS). Detail on this can be found here: https://nras.org.uk/raaw-24/

The theme of RA Awareness week 2024 is #STOPtheStereotype, which focusses on dispelling the frustrating stereotypes that surround this incurable, invisible condition. The 450,000 people living in the UK with Rheumatoid Arthritis (RA) face people making assumptions about their condition, hearing comments along the lines of “you look fine how can you be unwell?’, ‘you are far too young to have arthritis’, ‘It’s just your joints getting old?’ amongst many others. NRAS wants to test preconceptions about RA and educate people and spread awareness on this condition that affects 1% of the population yet is still so misunderstood.

The topic of my Health & Care Research Wales NIHR Doctoral Fellowship and PhD (SOCRATES) was the measurement of RA disease activity (DA) using Patient Reported Outcome Measures (PROMs). I now have funding from a Health and Care Research Wales Next Steps Award (PLAN-HERACLES) and am looking for further this research by exploring options for a weekly disease activity monitoring tool.

I also haven’t updated since I presented the results of SOCRATES at the American College of Rheumatology Convergence in San Diego in November 2023, so thought I would update on what I have done since.

Dissemination

I worked with NRAS to disseminate the results of SOCRATES through their website: https://nras.org.uk/resource/socrates_plan-heracles/

Objectives

The SOCRATES study was funded from October 2019 until July 2023. Multiple methods were used, which included:

1. a review of the literature following up-to-date international guidelines;
2. analyses of data collected through questionnaires sent to people living with RA (plwRA) across four South Wales University Health Boards (UHBs). Questionnaires were sent out to plwRA in September 2020, plus June, October and November 2021;
3. analyses of discussions held with plwRA. Discussions with plwRA took place between November 2022 and February 2023. And;
4. the development of an online tool that decides on question order.

The PhD thesis was submitted in January 2024, I passed my viva in April 2024 and had the corrections signed off in July 2024.

Outcome

The objective of finding a PROM for DA monitoring to facilitate delivering standard of care showed that none of the legacy PROM can be used. It was found that no existing RA DA PROMs can be recommended for future use and that no existing RA DA PROMs, or other relevant PROMs, are fully valid, which means there is no evidence that they measure RA DA correctly. However, within these PROMs, there are questions that, when combined, can assess RA DA. It was shown that the Patient global domain is two distinct domains of Disease activity and General health. 12 questions from the domains of Pain, Disease activity, Tenderness and swelling, Physical functioning and Stiffness can be used to measure RA DA.

Through discussions with plwRA, it was established there were no questions, or concepts, missing that should be covered. Lastly, it was discovered that an online tool that decides on question order does not provide a major advantage for the purpose of asking the 12 questions. Therefore, RA DA can be measured with just five questions, with one from each of the Pain, Disease activity, Tenderness and swelling, Physical functioning and Stiffness domains. The next steps are to discover how best to design these five questions and to test their ability to measure RA DA, before using them as part of a weekly DA monitoring tool.

PLAN-HERACLES

Further detail on this website gave detail of PLAN-HERACLES:

The first and second surveys will be about the use of the future data collection and presentation of the weekly DA monitoring tool for plwRA and healthcare professionals (HCPs) involved in the care of plwRA. The survey for plwRA will be sent out through 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.

An advert for the survey for plwRA was also available on the NRAS website: https://nras.org.uk/2024/05/14/plan-heracles/

Since these adverts, the plwRA survey has had just under 1300 responses and the results can be summarised thus:

• The tool was deemed useful, acceptable and likely to be used;
• The majority agreed with the proposed weekly frequency of response, that it would be feasible to answer the questions in the tool at the same time every week and that it be feasible to answer questions regularly over time;
• Reminders would be required, with all options receiving support. Therefore it should be given over to the person living with Rheumatoid Arthritis to decide and set the reminder type;
• Smart phone was the most likely device to access the tool;
• The proposed number of five questions was deemed best. It would also be helpful to answer questions on flares, on where in your body the pain, stiffness and tenderness and swelling is and which physical activities are difficult to do;
• There was also some support for questions on mental wellbeing (preferably every month), side effects and quality of sleep, with other suggestions listed;
• There was some support for skipping these questions for a period of time, such as after a surgery;
• There was a mixed response to how best to provide feedback, with an interactive graph getting the most responses. There was desire for healthcare professionals to have an alert to suggest that plwRA should be prioritised for a consultation for healthcare professionals (HCPs) to have an interactive graph of results over time to discuss with the plwRA, for a conversation over the results to take place and that such a discussion could help the plwRA better get what they need from their HCPs;
• Responses on who should introduce the tool to the plwRA were mixed, with their consultant the most frequent response, plus more mixed responses to how it should be introduced, with website receiving the most responses;
• Reponses were scattered for the question on how easy it is to tease out Rheumatoid Arthritis symptoms from those caused by your other conditions, suggesting it varies and can be difficult;
• Tenderness and swelling as a single question is still up for debate and will need to be teased out in the first stages of any future research;
• Five response options to the questions was only just the most population choice, with a recall period of a week proving best.

Unfortunately, the survey for HCPs involved in the care of plwRA only had 12 responses. To gain further insight, I have met with Welsh rheumatologists this month to discuss their thoughts on the survey questions.

Next steps

I hope to publish this research across articles that I will be submitting to Rheumatologyhttps://academic.oup.com/rheumatology

I am hoping to secure a Health and Care Research Wales Advanced Fellowship (HERACLES), which will build on SOCRATES and PLAN-HERACLES.

I have recruited a Patient Advisory Group via NRAS and looking forward to meeting with them over the coming months to discuss the above results and application for a Health and Care Research Wales Advanced Fellowship. I have also discussed the application at a National Centre for Population Health and Wellbeing Research (NCPHWR) patient and public involvement grant writing workshop

Funding note

Tim Pickles is funded by the Welsh Government through Health and Care Research Wales (NS-23-01 – Mr Tim Pickles).