How to self-examine for tender and swollen joints: co-producing a training video for people with rheumatoid arthritis

Objective This paper describes the co-production of a training video to support people with RA to self-examine for tender and swollen joints. Methods The patient and public involvement and engagement (PPIE) group supporting a remote monitoring study elected to develop a video to train people with RA how to self-examine for tender and swollen joints, because nothing appropriate was publicly available to fulfil their needs. A core team of PPIE group members and clinicians developed the video, with input from conception to dissemination from the PPIE group. The video was posted, open access, on a YouTube website in February 2021, alongside supporting materials. The number of monthly hits was tracked and a survey developed to ascertain feedback. Results The video received 1000 hits in the first week, and >40 000 at 10 months. The top three countries viewing the video were India, the USA and the UK, with a range of ages and gender profile broadly corresponding to those of RA patients. Forty-eight survey responses were received (26 patients and 22 clinicians). Patients reported an improvement in their ability to self-examine after watching this video. Eighty-six per cent of patients and 71% of clinicians would recommend the video. It has been used and disseminated by a number of national organizations within the UK. Conclusion This co-produced, open-access training video for people with RA, originally intended to support a research study into remote monitoring, has been well received, reflecting an international interest in self-examination. Lay Summary What does this mean for patients? Rheumatoid arthritis (RA) is a long-term condition causing pain and swelling in joints. Examination includes assessment of the number of tender and swollen joints (T+SJ) by clinicians to help understand disease activity. Patients might wish to learn how to self-examine to help self-management. The remote monitoring of RA (REMORA) study is collecting information submitted by patients via an app, including T+SJ counts. The recent shift to video and telephone appointments means that patients might be asked to self-examine for T+SJs in place of clinical examination. The REMORA study patient and public involvement and engagement (PPIE) group worked with clinicians and researchers to co-produce a video to train people with RA how to self-examine for T+SJs, because nothing appropriate was publicly available. The video was posted, open access, on YouTube in February 2021. The video was internationally popular, receiving >40 000 hits at 10 months. Patients reported an improved ability to self-examine after watching the video, which is recommended by patients and clinicians. This video has demonstrated the need for co-produced materials to support self-examination and to identify better when RA flares in between clinic visits. We hope this will improve patients' understanding of disease activity, improve self-management, inform consultations and enhance shared decision-making.