P182 Exercise and activity in polymyalgia rheumatica: co-creating an education resource acceptable to patients and health professionals

O’Brien, Anne V; Eng, Sookhoe; Mackie, Sarah L; Scrafton, Nicola; Hider, Samantha; Tan, Ai Lyn; McClean, Catherine; Barber, John; Gundle, Jo; Lonsdale, Maria; Baxter, Matthew

Abstract

Background/Aims People with PMR report experiencing pain, stiffness and weakness, often impacting everyday tasks. Many fear exercise will exacerbate symptoms and need reassurance that exercise is helpful and not harmful. However, no PMR-specific, exercise educational resource currently exists. The aim of this funded study was to co-create an exercise educational resource for, and with, people with PMR that would be acceptable to both patients and health professionals. Methods A steering group of people with PMR and UK clinicians/academics from Keele and Leeds universities was identified. People with PMR and clinical/academic health professionals with specific interest in PMR were invited to participate in a one-hour online focus group (FG), recruited via social media, the PMRGCAuk charity and professional networks. Ethical approval was obtained. Separate FGs (four with patient participants and two with multi-disciplinary health professionals), held during the summer of 2023, were facilitated by steering group members over two rounds. Exemplars of non-PMR health education literature were shared with participants in round 1 to prompt discussion and invite participant opinions about what might be essential exercise content and the optimal format of the new PMR educational resource. Summaries of proposed content and resource format suggestions were collated after each FG and informed the next iteration of the exercise and physical activity educational resource. In the final round 3 a prototype version of the educational booklet was shared with all FG participants via email. All participants were invited to provide final feedback and comments, after which the booklet was finalised. Results Participants desired a visually appealing pocket-size (A5), multiple-page, patient education booklet suitable for either printing or reading online. Colour-themed text and images with logos of PMRGCAuk and contributing universities were requested. Positive messaging promoting movement and physical activity, as well as exercise, were considered important. Feedback following draft booklet iterations concluded “a self-help guide” title was valuable, as were starter and progression instructions to accompany exercise illustrations. Participants desired explanation of prioritised “top tips”, including keeping moving, listening to your body, balancing rest and activity, and the physical and mental health benefits of exercising. Patient quotations were included with permissions together with signposting to other resources. Conclusion An exercise-focused education booklet, acceptable to both people with PMR and UK expert health professionals, has been co-created and professionally designed. Future research plans include piloting the feasibility of using this resource to support people living with PMR to engage and continue with exercise, and to evaluate the impact of people with PMR exercising. Disclosure A.V. O’Brien: Grants/research support; This project was funded by Polymyalgia Rheumatica, Giant Cell Arteritis UK charity - PMRGCAuk. S. Eng: None. S.L. Mackie: Consultancies; Roche/Chugai, Sanofi, AbbVie, AstraZeneca, Pfizer. Grants/research support; chief investigator on STERLING-PMR trial, funded by NIHR; patron of the charity PMRGCAuk. NIHR Leeds Biomedical Research Centre. Investigator on clinical trials for Sanofi, GSK, Sparrow. N. Scrafton: None. S. Hider: None. A. Tan: None. C. McClean: None. J. Barber: None. J. Gundle: None. M. Lonsdale: None. M. Baxter: None.

Citation

O’Brien, A. V., Eng, S., Mackie, S. L., Scrafton, N., Hider, S., Tan, A. L., …Baxter, M. (2024, April). P182 Exercise and activity in polymyalgia rheumatica: co-creating an education resource acceptable to patients and health professionals. Poster presented at British Society for Rheumatology Annual Conference 2024

• Presentation Conference Type: Poster
• Conference Name: British Society for Rheumatology Annual Conference 2024
• Deposit Date: May 9, 2024
• Publisher: Oxford University Press
• DOI: https://doi.org/10.1093/rheumatology/keae163.221
• Public URL: https://keele-repository.worktribe.com/output/823952
• Publisher URL: https://academic.oup.com/rheumatology/article/63/Supplement_1/keae163.221/7656279