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. 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 patient pathways and public and HCP education to reduce this delay to allow the ambitious NASS Gold Standard of one year time to diagnosis to be achieved.
Using UK GP data from the Clinical Practice Research Datalink, we identified patients diagnosed with AS between 1998 and 2017. We estimated the annual AS incidence, prevalence and length of time from first recorded symptom of back pain to rheumatology referral and diagnosis.
Results: We identified 12 333 patients with AS. The incidence declined from 0.72 (±0.14) per 10 000 patient-years in 1998 to 0.39 (±0.06) in 2007, with this decline significant only in men, then incidence rose to 0.57 (±0.11) in 2017. By contrast, prevalence increased between 1998 and 2017 (from 0.13%±0.006 to 0.18%±0.006), rising steeply among women (from 0.06%±0.05 to 0.10%±0.06) and patients aged ≥60 (from 0.14%±0.01 to 0.26%±0.01). The overall median time from first symptom to rheumatology referral was 4.87 years (IQR=1.42-10.23). The median time from first symptom to diagnosis rose between 1998 and 2017 (from 3.62 years (IQR=1.14-7.07) to 8.31 (IQR=3.77-15.89)) and was longer in women (6.71 (IQR=2.30-12.36)) than men (5.65 (IQR=1.66-11.20)).
Conclusion: AS incidence declined significantly between 1998 and 2007, with an increase between 2007 and 2017 that may be explained by an improvement in the recognition of AS or confidence in diagnosing AS over time, stemming from increased awareness of inflammatory back pain and the importance of early treatment. The rising AS prevalence may indicate improved patient survival. The persisting delay in rheumatology referral and diagnosis remains of concern, particularly in women.
The contents of this report will help to build a clearer picture of what axial spondyloarthritis (axSpA) is and how its burdens manifest themselves. It will also set out the barriers that exist to achieving timely diagnosis, alongside examples of best practice from across the world in reducing diagnosis delay. These insights help to inform the key recommendations and the accompanying call to action for all stakeholders involved in the organisation, delivery and championing of axSpA care. The report forms a key component of ASIF’s Delay to Diagnosis campaign. The campaign seeks to deepen understanding at a global level of the factors that contribute to the current seven-year average delay in axSpA diagnosis, and the burdens that the delay places on individuals.
Axial spondyloarthritis (axSpA) encompasses a range of chronic, progressive inflammatory conditions that place a huge toll on the millions of people affected by the disease across the globe. Much of the burden comes from the considerable delay in achieving a confirmed diagnosis, which is currently around seven years on average from the first onset of symptoms. Axial spondyloarthritis (axSpA) currently remains incurable, however there has been considerable progress in recent decades in our understanding of the disease, and improvements in the tools we have available to treat it. Despite these advances, progress across the world has unfortunately been much more limited in achieving timely axSpA diagnosis. Ultimately, patients diagnosed in recent years experience very similar delays to those in the 1990s and 2000s.
ASIF and the axSpA stakeholder community believe that this is an unacceptable reality and one that must urgently be addressed. Achieving progress is particularly important because of the early onset of the disease – typically manifesting when someone is in their twenties – and its progressive nature. The longer it takes to achieve a diagnosis, the worse a patient’s condition will likely become. Waiting seven years for a diagnosis can lead to irreversible damage and will often transform a young person’s life into a period of intense physical and mental hardship.
Undiagnosed and poorly managed axSpA will not only limit an individual’s ability to fully participate in society and maintain meaningful employment. It will also generate additional healthcare needs and costs, meaning that there is a clear moral as well as economic obligation to reduce diagnosis delay.
As set out in this report, diagnosing axSpA is not a straightforward process and there are a number of challenges that need to be overcome if the seven-year delay is to be reduced. Despite this, we have a better understanding of these barriers than ever before, and there are also encouraging signs of progress from across the world on how to address them. Our hope is that we can now build on this to help ensure all healthcare systems give axSpA the priority it deserves; and to create a future where no one living with the condition has to wait seven years for a diagnosis.
For information, advice and to join a community of people who live with the condition visit the NASS website. Or visit our helpline.
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