POS1455-PARE RECOGNISING THE SIGNS AND SYMPTOMS OF AXIAL SPONDYLOARTHRITIS: A GLOBAL AWARENESS CAMPAIGN TO SUPPORT REDUCING THE DIAGNOSTIC DELAY
Authors: J. Lowe, P. Escarda, M. Van Dam, L. Wermskog, J. De Bry
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> Axial spondylarthritis (axSpA) is a painful, chronic inflammatory disease, which primarily affects the spine and sacroiliac joints.[1] One of the main problems facing people with axSpA is the time it takes to get a diagnosis. The average time globally from onset of symptoms to diagnosis is 7.4 years [2], during which time a person's condition can significantly deteriorate and irreversible structural damage can be caused.[1] <h3>Objectives:</h3> In ASIF's 2021 report 'The unacceptable delay in axSpA diagnosis', lack of awareness of the disease and its symptoms are identified as among the main barriers to a timely diagnosis.[3] To tackle this, we aimed to create a series of awareness materials that could be used by ASIF's member (patient organisations around the globe) to raise awareness of the signs and symptoms of the disease. The campaign materials were to be aimed at the general public, including those with symptoms - and healthcare professionals who were likely to see people with symptoms before diagnosis. <h3>Methods:</h3> The main goal of the campaign was to convey the signs and symptoms of axSpA to increase awareness of the disease and how to identify it. We created three short films which set out the main signs and symptoms: pain in the lower back; insidious onset of symptoms before the age of 40; pain and stiffness that get better with movement, but worse with rest; fatigue; the other health conditions often present in people with axSpA. All films were translated and are available in nine languages. One film follows an animated character experiencing the signs and symptoms of axSpA, with subtitles and voiceover; it is aimed at the general public. The second, presented by Prof Raj Sengupta, Consultant Rheumatologist with an interest in axSpA, explains the clinical presentation of axSpA and his narrative is interspersed with patients describing their symptoms. Another film features patients talking about their experiences of the early signs and symptoms of axSpA. We also produced two infographics: one about axSpA prevalence and symptoms; the second describing the impact of the diagnostic delay, physically, psychologically and socioeconomically. <h3>Results:</h3> The three films and infographics were included in a toolkit for ASIF members that also contained suggested social media content; short versions of the films; quote cards and visuals; and a guide on boosting and advertising on social media. The toolkits are also available in nine languages and were shared with members in September 2023 following a webinar presenting the campaign. The timing coincided with the launch of refreshed ASIF webpages that host the awareness films as part of the ongoing Delay to Diagnosis campaign. <h3>Conclusion:</h3> ASIF and its members have been sharing the awareness materials in a range of ways with different audiences; for example, the healthcare professional video was shown in South Africa at a training event for physiotherapists. Members have shared the videos through their websites and YouTube channels and some through social media. Spafo in Norway shared the animated character through their Facebook channels and received very positive feedback: "What is impossible to explain, you have managed…" The material content is not time-limited and can be used for years to come. In 2024, ASIF plans to further review the campaign to learn from members about campaigning practices that have been most successful, and we will support other members by sharing these best practices. <h3>REFERENCES:</h3> [1] Sieper J, Poddubnyy D. Axial spondyloarthritis. 2017. <i>Lancet</i>; 390(10089):73-84. [2] Poddubnyy D, Garrido-Cumbrera M, Sommerfleck F, et al. POS0689. Diagnostic delay in patients included in the International Map of Axial Spondyloarthrtis: associations with geographic, socio-demographic and disease-related factors. <i>Annals of the Rheumatic Diseases.</i> 2023;82:628-629. [3] The unacceptable delay in axSpA diagnosis: a global call to action; Axial Spondyloarthritis International Federation; June 2021 E. <h3>Acknowledgements:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</h3> Jo Lowe I have not personally received financial grants, but Axial Spondyloarthritis International Federation receives funding from various pharmaceutical companies., Percival Escarda Personally, no - but ASAPh does receive funding from pharmaceutical companies., Maranda van Dam: None declared, Lillann Wermskog As a patient consultant for Novartis, I have personally not received financial grants, but Spafo Norge has received funding from Novatis, Abbive, Lilly, UCB, Takeda, Joanne de Bry Personally, I have not received financial grants, but Axial Spondyloarthritis International Federation is funded by various pharmaceutical companies.