Background: The rare autoimmune rheumatic diseases (RAIRDs) include systemic vasculitis, systemic lupus erythematosus (SLE), inflammatory myopathies (IIM), systemic sclerosis and Sjögrens disease, and can all impact health-related quality of life (HRQoL). A Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) patient survey of 2300 members reported that 61% struggled to cope with their condition; 45% had reduced or stopped work, and 45% felt their health condition negatively impacted their family. Our previous works showed: a) 80% of NHS rheumatology departments did not offer access to self-management support to people with RAIRDs in a survey ¹ ; and b) six online patient focus groups (n=26) in the UK highlighted that people with RAIRDs share common experiences of coping with these complex conditions ² , thus a combined support intervention may be beneficial for all people with RAIRDs. Despite the use of social media and working with patient charities to recruit participants to the online focus groups, only 15% of the participants were people of global majority. As health disparities exist in RAIRDs and affect outcomes, there is an unmet need to enhance participation from the underserved groups to improve the generalisability of our findings.

Objectives: To a) assess the use of community engagement in enhancing participation of diverse and the underserved groups; and b) explore impact of RAIRDs in people who do not usually take part in research and identify their support needs to inform the development of a self-management support intervention.

Methods: A steering committee of qualitative researchers, three patient partners, patient and public engagement (PPIE) co-ordinators, physicians, nurses and methodologists oversaw the design. Focus group discussion topics developed from literature review, online qualitative focus groups and patient partner input. Exploratory questions followed a narrative approach asking about the participants’ journeys (e.g. original symptoms, diagnosis, experience of healthcare over the disease course) to explore the impact on all aspects of HRQoL and support needs. Participants were identified via community interest organisations in Bristol and Weston-Super-Mare (Caafi Health and The Other Place) and in Leeds (NIHR Leeds Biomedical Research Centre Community PPIE and Healthwatch). Participants were also approached within National Health Service (NHS) rheumatology clinics in Bristol and Leeds. Posters were translated into 14 languages and adverts shared via community health ambassadors in WhatsApp groups (e.g, Bristol Somali voice, Barton Hill group, Wellspring settlement, Refugee Women of Bristol, Bangladeshi Women’s group, Chinese Community Wellbeing Society, Chinese Lantern Society), community centres and in NHS clinics. Six face-to-face focus groups in three community centres were conducted (Bristol, Weston-super Mare and Leeds). Health ambassadors were present to facilitate a welcoming atmosphere. Translators were available. Data was analysed inductively by an independent health psychology researcher and a researcher present during the focus groups.

Results: Thirty-nine participants were recruited (mean age 53 years); 33 (84.6%) were female and 17 (44%) were people of the global majority, with a range of different RAIRDs (see Table 1). Approximately 51% (20) were currently employed, others were retired (10), unemployed (3), students (1), homemakers (1) or not working due to disability (4).

The overarching theme of the analysis 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”, and “Lack of specialised information”. This analysis confirmed themes previously noted within the online focus groups and highlighted new themes within these community- based focus groups, particularly in relation to the impact of having a RAIRD on fertility, work and finances. Quotes included: “...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”. Female, Lupus, 21 years. “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”. Male, ANCA Associated vasculitis, 53 years. “when I went off sick, the people who work, I think they thought. What’s she doing? She’s skiving”, Female, Inflammatory Myositis, 60 years. “..when we have some kind of language barriers; we have to have more time to think about what we want to tell the doctor”. Female, Behcets,50 years.

Conclusions: Through community engagement, our recruitment approach enhanced the participation from the underserved group. These findings highlight the need for a variety of recruitment strategies to collaborate with people who may not usually take part in research, to enrich qualitative findings, extend and generate new insights and inform the co-development of a self-management support intervention for people with a range of RAIRDs.

REFERENCES: [1] Robson JC et al. Rheumatol Adv Pract, 2020: 27;4(2):rkaa016.

[2] Dures E et al. Rheumatology, 2025: 64; 11: 5698-5706.

Acknowledgments: NIL.

Disclosure of Interest: Sadia Janjua: None declared, Michelle Griffiths: None declared, Jen Orme: None declared, Ihlem Berrou: None declared, Zoi Anastasa Reimbursement to Vasculitis UK from contributing to panels for CSL Vifor and Novartis., Dalila Tremarius: None declared, Andrew Hunt: None declared, Samina Baig: None declared, Sharanjit Boughan: None declared, Alice Berry: None declared, Mwidimi Ndosi Vifor Pharma, Sanofi, Md Yuzaiful Md Yusof Alumis, CSL Vifor, Novartis, Roche, and UCB., Aurinia Pharmaceuticals, UCB, and Autolus.Advisory Board: GSK and Novartis., Joanna C Robson Vifor Pharma, Roche., Vifor Pharma and Astrazeneca Ad boards. Oxford Innovation translation check as co-developer of AAVPRO, GCAPRO and Steroid PRO, Vifor Pharma, Sanofi Ltd.