AB0973 CREATING A NATIONAL DATA SET TO MEASURE THE TIME TO DIAGNOSIS IN AXIAL SPA
Authors: J. Eddison, D. Webb
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> The UK average time to diagnosis for axial SpA is 8.5 years [1]. NASS's vision is that everyone with axial SpA should be diagnosed within 12 months of symptom onset (2), thereby minimising future complications, improving quality of life and commencing timely appropriate treatment and self-management. However, there are challenges in measuring time to diagnosis at UK level: The available data are mostly quite old – 2015 There is a national audit but it only covers England and Wales. It has low uptake for axial SpA. Most data sets come from just one or two rheumatology departments Since 2019 NASS has run a quality improvement programme called <i>Aspiring to Excellence,</i> involving 23 rheumatology departments all working on improving time to diagnosis. We wanted to measure their time to diagnosis. <b>We decided to work together to create a new measurement approach.</b> <h3>Objectives:</h3> To create a simple tool to measure the time to diagnosis for axial SpA across the UK in order to benchmark performance and drive change. <h3>Methods:</h3> Working with a group of clinicians from across the <i>Aspiring to Excellence</i> programme we: Set up a clinical working group to define the collection tool &amp; approach, oversee the data use and governance Developed a standard survey collection tool with 10 questions, based on previous work at two departments Created a patient information leaflet &amp; hospital governance document Developed the survey into an online electronic survey via unique link Opened the survey to all <i>Aspiring to Excellence</i> sites Started data reporting, benchmarking and sharing performance with teams Met as a clinical working group and reviewed progress Expanded the audit to include any interested rheumatology department across the UK. <h3>Results:</h3> From the first 416 surveyed patients diagnosed since January 2021, the average (mean) time to diagnosis is 8.24 years, with a median of 4.84 years. <h3>Conclusion:</h3> We have demonstrated that it is possible to create, at pace, an audit tool to provide the data to support service improvement and pathway development. We hope it will continue to grow to provide a comprehensive picture across every region and nation in the UK. The data indicate a mean time to diagnosis from of 8.24 years (median of 4.84 years). Fewer than 5% of those patients surveyed received a diagnosis in under 12 months, whilst 17% waited over 15 years. If this picture does represent the national average, then we have yet to see a significant reduction in time to diagnosis at national level, although pockets of excellence are beginning to emerge. However, against a backdrop of the Covid-19 pandemic, it may be encouraging that diagnostic delay did not lengthen. The results should strengthen efforts reduce diagnostic delay, so nobody has to live for long periods with debilitating and painful symptoms and no agreed diagnosis and treatment path. Future analysis will identify the impact of health inequalities, patient characteristics, access, and location on diagnostic delay. This will be focussed on areas that we are aware have an impact on axial SpA diagnosis. <h3>REFERENCES:</h3> [1] Sykes MP, Doll H, Sengupta R, Gaffney K. Delay to diagnosis in axial spondyloarthritis: are we improving in the UK? Rheumatology. 2015;54(12):2283-4 [2] Webb D, Swingler L, Barnett R, Sengupta R, Marshall L, Hamilton J, Zhao S &amp; Gaffney K. Act on axial SpA: A Gold Standard time for the diagnosis of axial SpA (2021). London: National Axial Spondyloarthritis Society <h3>Acknowledgements:</h3> Bamford S, Chan A, Chan M, Das D, Freestone J, Gregory W, Gudu T, Hamilton J, Hutton K, Tahir H &amp; Zhao S. <h3>Disclosure of Interests:</h3> <b>None declared.</b>