Abstract Background/Aims Rare autoimmune rheumatic diseases (RAIRDs) are life-long multisystem diseases that impact on quality of life. They include systemic vasculitis, systemic lupus erythematosus, inflammatory myositis, systemic sclerosis and Sjögrens disease. A RAIRDA patient survey of 2300 members found 61% struggled to cope with their condition; 45% had reduced or stopped work, and 45% felt their health condition negatively impacted their family. A survey of NHS rheumatology departments found 80% did not offer access to self-management support to people with RAIRDs. Patients share common experiences of coping with complex conditions. We aimed to explore perspectives of underserved populations with RAIRDs who are typically underrepresented in research. Methods Participants were identified via community networks and National Health Service (NHS) clinics. Posters were translated into 14 languages. Six community focus groups in 3 centres were conducted (Bristol, Weston-super Mare and Leeds). Data was analysed by an independent health psychologist and researcher present during the focus groups. Data were analysed inductively by an independent researcher. Results Thirty-nine participants were recruited (Table 1). One overarching theme described “Challenges of navigating the patient journey”. Subthemes included: “Rare, widespread, invisible symptoms”, “Complex healthcare system”, “Support for social and emotional impact”, “Impact on work and finances”, “Lack of healthcare professional knowledge about rare conditions”, “Lack of specialised information”. Quotes included: “I’ve now got to look at my career because I’m being advised by rheumatology to either take an early retirement or medically retire”. M, AAV, 53. “when I went off sick, the people who work, I think they thought. What’s she doing? She’s skiving”, F, Myositis, 60. “ ⋯when we have some kind of language barriers; we have to have more time to think about what we want to tell the doctor”. F, Behcets ,50. “...I’m young, I have my whole life ahead of me. I don’t want to let anything affect that. I’m still terrified of how it will affect me in the future”. F, Lupus, 21. Conclusion These findings highlight the need for targeted resources and will inform the development of a self-management support intervention for people with RAIRDs. Disclosure S. Janjua: None. M. Griffiths: None. J. Orme: None. I. Berrou: None. Z. Anastasa: None. D. Tremarias: None. A. Hunt: None. S. Baig: None. S. Boughan: None. A. Berry: None. M. Ndosi: None. E. Dures: None. Y. Yusof: None. J.C. Robson: None.
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