OA10 Peer support for people living with axial spondyloarthritis as part of a supported self-management programme
Authors: Clark Zoe 
Published: April 2024

Background/Aims

The National Axial Spondyloarthritis Society (NASS) Supported Self-management Programme aims to empower people with axial spondyloarthritis (axial SpA) to live well with their condition. We ran peer support meet-ups as part of our new Your SpAce programme to improve attendees’ knowledge of their condition, and reduce feelings of isolation.

Methods

In March 2023, NASS launched Your SpAce, a series of short information and lived experience videos, with downloadable practical resources. It is aimed at people newly diagnosed or those diagnosed longer who had not previously engaged with their condition. The programme was created in consultation with people living with axial SpA and healthcare professionals (HCPs). A steering group comprised 33% people with lived experience. Monthly free online peer support ‘meet-ups’ were planned. Initial topics aligned with Your SpAce topics of pain, flares, and fatigue. Feedback and helpline enquiry trends guided further topics. Attendees booked via an Eventbrite listing, disseminated via the NASS website, social media and e-newsletter, partner organisations, and HCPs. The meet-ups are facilitated by a HCP who lives with axial SpA. Sessions start with a short introduction to axial SpA and the meet-up topic. The focus is on facilitated group discussions, where attendees use their camera and microphone and chat box to meet other people with axial SpA, ask questions, share advice, and receive peer support.

Results

Your SpAce webpages ask visitors how confident they feel in managing their pain, flares, and fatigue out of 100 (0=not at all, 100=extremely). The results (701 respondents) indicate the programme is reaching people with low confidence, with 60% of pain poll respondents, 69% of fatigue poll respondents, and 72% of flare poll respondents ranking their confidence 0-40/100. Since April 2023, we ran 10 meet-ups, with 516 bookings and 256 attendees. Everyone who booked received presentation slides and resources. In-meeting anonymous polls showed: 25% of attendees had been diagnosed for less than one year; 31% 1-5 years; 11% 6-10 years; and 33% more than 10 years. 24% have a diagnosis of axial SpA, 22% non-radiographic axial SpA, 51% radiographic axial SpA/ankylosing spondylitis, and 3% awaiting diagnosis. Anonymous feedback survey results (n = 67) showed: 97% enjoyed attending the meet-up; 96% found it easy to attend; 82% said the meet-up helped them understand more about their condition; 74% have more practical skills to manage; 54% had never previously met anyone else with axial SpA; 97% felt less alone afterwards; and 99% would like to attend another meet-up.

Conclusion

The first six months of Your SpAce meetups have improved attendees’ knowledge of axial SpA, increased practical skills in managing symptoms, and reduced feelings of isolation. Results suggest that informal online peer support is a positive strand of supported self-management for people at all stages of their axial SpA.

Disclosure

Z. Clark: Honoraria; ZC is a member of Council for the Institute of Osteopathy. Grants/research support; NASS receives grant funding from AbbVie, Biogen, Eli Lilly, Janssen, Novartis and UCB.