What question did this study set out to answer?

This research examines recruitment methods for a survey assessing self-management needs in patients with rare autoimmune rheumatic diseases in the UK.

April 30, 2026

P150 Rare AutoImmune SElf-management (RAISE) programme development: recruitment methods for a nationwide survey to understand the needs of people with rare autoimmune rheumatic diseases in the UK

Key Points

This research examines recruitment methods for a survey assessing self-management needs in patients with rare autoimmune rheumatic diseases in the UK.
Participants recruited through NHS Rheumatology clinics and social media platforms including patient charities.
Surveys were completed online and interim data was analyzed descriptively.
612 participants were recruited; 20% from NHS and 80% from social media.
Response rates differed notably among various autoimmune diseases, particularly for SLE and GCA.
Significant differences in response based on ethnic background and education level were identified.

Abstract

Abstract Background/Aims Rare autoimmune rheumatic diseases (RAIRDs) impact on health-related quality of life. A UK patient survey is underway to determine content of a self-management and psychological support intervention. This study aims to explore effectiveness of recruitment methods. Methods Participants recruited via National Health Service (NHS) Rheumatology clinics or social media platforms including patient charities (RAIRDA, Scleroderma majority female (H = 84%, S = 91%). There was a difference in response for people with SLE (H = 23%, S = 3%, X2=50, P 0.001) and GCA (H = 2.5%, S = 12.7%, X2=9.7, P = 0.0018) compared to other RAIRDs. This difference was not seen in: Sjogren’s disease (H = 27%, S = 30%), ANCA-associated vasculitis (17%; 22%), Scleroderma (9%, 10%), inflammatory myositis (2.5%, 4.5%), antiphospholipid syndrome (1.6%, 0.4%), Behcet’s disease (3.3%, 5.7%), large vessel vasculitis (1.6%, 2%), polyarteritis nodosa (0.8%, 0.2%), Takayasu arteritis (0.8%, 2%), central nervous system vasculitis (0.8%, 1%). Responses for people from the global majority ethnic group were lower (H = 20.5%) S = 5%) than white English/Welsh/Scottish/Irish group (H = 79%, S = 94%); with lower odds of social media response for global majority participants (OR = 0.2, 95% CI 0.72 to 0.56; P = 0.002). Response rates differed by education and employment: no formal education (H = 11%, S = 3%; χ²= 9.38, p = 0.002) compared with other education levels; and retired (H = 34%, S = 47%; χ²=6, p = 0.01) compared with other employment categories. Conclusion Findings suggest differences in how people respond to a patient survey of self-management and support needs, specifically people with SLE, GCA and those from the global majority. Men are under-represented. This supports using multiple recruitment methods to facilitate broader participation in research. Disclosure S. Janjua: None. M. Ndosi: None. M. Griffiths: None. J. Orme: None. I. Berrou: None. Z. Anastasa: None. D. Tremarias: None. A. Hunt: None. A. Berry: None. E. Dures: None. Y. Yusof: None. J.C. Robson: None.

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