Contemporary data on rheumatoid arthritis (RA), psoriatic arthritis (PsA) and axial spondyloarthritis (SpA) epidemiology in England are lacking. This knowledge is crucial to planning healthcare services. We updated algorithms defining patients with diagnoses of RA, PsA, and axial SpA in primary care and applied them to describe their incidence and prevalence in the Clinical Practice Research Datalink Aurum, an electronic health record (EHR) database covering ∼20% of England.
Algorithms for ascertaining patients with RA, axial SpA, and PsA diagnoses validated in primary care EHR databases using Read codes were updated (to account for the English NHS change to SNOMED CT diagnosis coding) and applied. Updated diagnosis and synthetic disease-modifying anti-rheumatic drug code lists were devised by rheumatologists and general practitioners. Annual incidence/point-prevalence of RA, PsA, and axial SpA diagnoses were calculated from 2004 to 2020 and stratified by age/sex.
Point-prevalence of RA/PsA diagnoses increased annually, peaking in 2019 (RA 0·779% [95% confidence interval (CI) 0·773, 0·784]; PsA 0·287% [95% CI 0·284, 0·291]) then falling slightly. Point-prevalence of axial SpA diagnoses increased annually (except in 2018/2019), peaking in 2020 (0·113% [95% CI 0·111, 0·115]). RA diagnosis annual incidence was higher between 2013-2019 (after inclusion in the Quality and Outcomes Framework, range 49·1 [95% CI 47·7, 50·5] to 52·1 [95% CI 50·6, 53·6]/100,000 person-years) than 2004-2012 (range 34·5 [95% CI 33·2, 35·7] to 40·0 [95% CI 38·6, 41·4]/100,000 person-years). Increases in the annual incidence of PsA/axial SpA diagnosis occurred following new classification criteria publication. Annual incidence of RA, PsA and axial SpA diagnoses fell by 40·1%, 67·4%, and 38·1%, respectively between 2019 and 2020, likely reflecting the COVID-19 pandemic’s impact on their diagnosis.
Recorded RA, PsA, and axial SpA diagnoses are increasingly prevalent in England, underlining the importance of organising healthcare services to provide timely, treat-to-target care to optimise the health of >1% of adults in England.
Despite the publication of various recommendations, quality standards and referral strategies to promote early diagnosis in axial SpA over the last decade, there remains a significant delay to diagnosis, leading to a lost tribe of undiagnosed, untreated patients with persistent back pain and axial SpA symptoms. This review discusses the various factors contributing to diagnostic delay in axial SpA, while providing recommendations to improve the diagnostic pathway, for example use of the online Spondyloarthritis Diagnosis Evaluation (SPADE) tool (http://www.spadetool.co.uk/). Significant shortcomings exist at both the primary and secondary care level, with healthcare professionals often lacking knowledge and awareness of axial SpA. Myths regarding the classical signs and symptoms still prevail, including the perception of axial SpA as a male disease, only occurring in individuals who are HLA-B27 positive with raised inflammatory markers. Individuals within this lost tribe of undiagnosed patients are likely lacking adequate treatment and are thereby at risk of worse clinical outcomes. It is therefore vital that public health initiatives are implemented to improve education of healthcare professionals and to ensure early specialist referral, to ultimately improve the lives of patients with axial SpA.
It is important to note that, as discussed above, such classification criteria are not intended for use in diagnosis – the primary objective of classification criteria is to identify a homogenous population for clinical trials and research, whereby patients are similar in terms of clinical characteristics. However, the 2009 Assessment of Spondyloarthritis International Society (ASAS) classification criteria were seminal in that they formally recognised the concept of nr-axial SpA – placing emphasis on early disease and use of MRI to identify early inflammatory changes, to allow for earlier detection of patients with the condition and inclusion of patients with nr-axial SpA in clinical trials.
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