Introduction Diagnostic delay is an ongoing challenge in axial spondyloarthritis (axial SpA). A recent, comprehensive literature review has found a mean average of 8.7 years of delay between symptom onset and formal diagnosis in the United Kingdom (UK). The primary aim of this study was to identify delays to diagnosis experienced by patients with axial SpA under the ongoing care of two urban National Health Service (NHS) rheumatology services. The secondary aims were (a) to count healthcare professional (HCP) interactions after symptom onset but prior to the diagnosis, (b) to compare our data to published delay to diagnosis research and (c) to explore contributing factors locally and the variation between the two UK rheumatology services. Methods A 14-question survey was created to identify the delay to diagnosis and contributing factors across two urban NHS axial SpA services, from the onset of symptoms to diagnosis and commencement of treatment. Participants were recruited from clinic visits between August and November 2021 and completed the survey either on paper or via online survey software, both with HCP support. Results Those completing the survey formed a cohort of 106 participants with an established diagnosis of axial SpA who attended the axial SpA services at either Royal Free NHS Foundation Trust or Salford Care Organisation, Northern Care Alliance NHS Foundation Trust. The mean time from the onset of symptoms to the diagnosis of axial SpA was similar across centres despite the differences in demographics, with Royal Free at 5.72 years and Salford Royal at 5.96 years. When reviewing via median diagnostic delay, there was a notable difference with Royal Free at 6.09 years and Salford Royal at 4.27 years. Across the two sites, between the onset of symptoms and the diagnosis of axial SpA, 90% of the participants saw a general practitioner (GP), of which 63% of the patients saw a GP 1-5 times, 23% saw 5-10 times and 14% saw more than 10 times. Many participants also saw other HCPs, including physiotherapists, other manual therapists and hospital specialists prior to diagnosis. In addition, 32% saw one other HCP, 18% two other HCPs, 9% three, 7% four and 2.7% five other HCPs prior to diagnosis. Close to 80% of the patients stated that they had received adequate axial SpA education at diagnosis, and 76% of the patients were aware of who to contact in the event of a flare. Conclusions These data highlight that the mean average time to diagnosis for both trusts was between five and six years, somewhat lower than the 8.7-year national UK average. However, despite being specialist centres, these data are a long way from the National Axial Spondyloarthritis Society (NASS) “Gold Standard” of one year time to diagnosis. The contributors to this include lack of HCP and community awareness about axial SpA, its recognition and appropriate onwards referral. There is a need for concerted ways of working for the development of ...
BackgroundIn the UK, diagnostic delays remain a challenge in axial spondyloarthritis (axSpA). Studies have shown that acute anterior uveitis is the most common extra-articular manifestation associated with axSpA. As part of a National Axial Spondyloarthritis Society (NASS) Aspiring to Excellence quality improvement project, this study aimed to ascertain the burden of inflammatory back pain (IBP) in patients attending a uveitis clinic and to establish the number of these patients who had not been referred to a rheumatologist, thereby contributing to the diagnostic delay. The secondary aims were to explore the factors contributing to the diagnostic delay. MethodsA 22-question patient survey was created to identify the burden of back pain in patients attending a specialist uveitis clinic at a London NHS Trust. Participants were recruited when attending their clinic appointments. Survey content included patient demographics and whether they had experienced back pain for longer than three months. The Berlin Criteria was used to identify the presence of inflammatory back pain, and it was also ascertained whether participants had a previous diagnosis of axSpA. Participants were asked if they had seen any healthcare professionals regarding their back pain and the total number of consultations they had had with each profession. ResultsA cohort of 50 patients who attended the uveitis clinic at the Royal Free London NHS Trust completed the survey between February and July 2022.The mean age of the respondents was 52 years with a mean length of time with uveitis of 6.57 years. Of them, 64% were female and 36% were male. Forty per cent (40%) of participants (20 respondents) reported experiencing back pain for more than three months and 12% (six respondents) had a diagnosis of axSpA.Of those who reported back pain for more than three months, the mean age of onset of back pain was 28.6 years. Of the 14 participants (28%) who had back pain and were not diagnosed with axSpA, nine (18%) fulfilled the Berlin criteria for IBP.All participants had seen a GP or allied health professional specifically for their back pain. On average, respondents had seen two allied healthcare professionals, but only 40% (eight) of respondents with back pain had been seen by a rheumatologist. ConclusionsIn this study, the data highlights that inflammatory back pain is common in patients with uveitis and the majority of patients with inflammatory back pain had not been referred to a rheumatology service and potentially have undiagnosed axSpA. Contributing factors to this potential delay in diagnosis include a lack of awareness of axSpA and its presenting features and associated conditions and a lack of onward referral for a specialist rheumatology opinion. This highlights the need for public, patient and healthcare professional education and the development of timely referral pathways to reduce delays in diagnosis.
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