POS0059-PARE DELAY TO DIAGNOSIS IN AXIAL SPONDYLOARTHRITIS – TIME FOR A GOLD STANDARD APPROACH
Authors: D. Webb, K. Gaffney, R. Sengupta, S. S. Zhao, L. Swingler
Journal: Annals of the Rheumatic Diseases (2021)

Background: In the UK, the average time to diagnosis of axial SpA is 8.5 years (1). There is little evidence this has improved, despite the acceptance of MRI use in diagnosis (2). A recent review identified significant clinical, economic and humanistic burden from delayed diagnosis (3). Urgent action is needed to ensure delayed diagnosis is not normalized. Objectives: We created a proposal for a Gold Standard time to diagnosis for axial SpA and a national implementation plan (4) through consensus development with patients, healthcare professionals and professional bodies. Methods: A.A scoping literature review identifying where delays occur, from first symptom onset to diagnosis by a rheumatologist, and potential solutions. From this, a summary report / draft plan was produced for consultation B.A national consultation survey to elicit views on the proposals from clinicians, healthcare professionals, professional societies and patients C.Structured feedback to written proposals via e-consultation with clinicians and patients D.A consensus development workshop to finalise the Gold Standard and implementation plan. Results: The literature review identified four delays: 1. People do not know axial SpA may be a cause of their chronic back pain 2. Primary care practitioners may not recognise features of axial SpA 3. People may be referred to non-rheumatologists who may not recognise axial SpA promptly 4. Rheumatology and radiology teams may not optimally request or interpret investigations. 202 participants responded to the summary report (74% patients, 21% healthcare professsionals, 5% professional societies). All supported the principles behind the gold standard time to diagnosis. Qualitive analysis confirmed agreement with the proposed solutions, underscoring the importance of education and visibility for axial SpA within primary care and increased public awareness. Additional proposals were suggested, including a tool in primary care to run audits on IT systems. 40 clinicians contributed to the e-consultation and 55 clinicians, policy makers, social marketing experts, health journalists and patients attended the consensus workshop. Consensus was reached on a gold standard time to diagnosis of one year, and the principles, key components and phasing of the implemention plan. This included: public awareness about axial SpA symptoms; a primary care clinical champions programme; creating a referral pathway from primary care direct to rheumatology; a secondary care service educational programme. Conclusion: There is consensus from UK axial SpA clinicians, patients and professional societies on the need for a Gold Standard time to diagnosis of axial SpA of one year, so that patients can live happy, healthy and productive lives. References: [1]Hamilton L, Gilbert A, Skerett J, et al. Services for people with ankylosing spondylitis in the UK - a survey of rheumatologists and patients. Rheumatology 2011:50:1991 [2]Sykes MP, Doll H, R Sengupta, Gaffney, K. Delay to diagnosis in axial spondyloarthritis: are we improving in the UK? Rheumatology , July 2015 [3]Yi E, Ahuja A, Rajput T, et al. Clinical, Economic, and Humanistic Burden Associated With Delayed Diagnosis of Axial Spondyloarthritis: A Systematic Review. Rheumatol Ther. 2020 Mar;7(1):65–87. [4]Webb D, Zhao S, Whalley S, et al. Gold Standard Time to Diagnosis in axial Spondyloarthritis: Consultation Document. 2020, NASS. Disclosure of Interests: Dale Webb Speakers bureau: Janssen, Novartis, Grant/research support from: NASS receives grants from AbbVie, Biogen, Eli Lilly, Novartis and UCB, Karl Gaffney Speakers bureau: Abbvie, Lilly, Novartis, UCB, Consultant of: Abbvie, Celltrion, Lilly, Grant/research support from: Abbvie, Pfizer, Lilly, UCB, Raj Sengupta Speakers bureau: Abbvie, Biogen, Celgene, Novartis, Roche, UCB, Consultant of: Advisory boards for Abbvie, Biogen, Novartis, UCB, Grant/research support from: Abbvie, Celgene, Novartis, Sizheng Steven Zhao: None declared, Lisa Swingler Grant/research support from: NASS receives grants from AbbVie, Biogen, Eli Lilly, Novartis and UCB.