By: 29 July 2020
Patients experience more than 7 years delay to diagnosis of axial spondyloarthritis due to incorrect referrals

Axial spondyloarthritis (axSpA) is associated with chronic back pain. Although the first symptoms frequently occur at an early age, often many years pass until the correct diagnosis is made.

This is unsatisfactory as late diagnosis can lead to a poorer prognosis, more severe disease outcomes and delaying the start of effective therapies, thus impairing the quality of life of patients with axSpA. A large European cross-sectional study has now examined which factors delay the diagnosis of axSpA (1). The result? A major factor is the number and type of medical professionals who have assessed the patients. The European League Against Rheumatism (EULAR) therefore recommends initiating measures to prevent misdirected referrals, to facilitate timely referral of patients with a high probability of axSpA to a rheumatologist and consequently speed up the diagnosis.

Axial spondyloarthritis (axSpA) is a chronic systemic rheumatoid-inflammatory disease associated with inflammation of the spine.

“The affected patients often have been experiencing spinal pain since early adulthood”, EULAR President Professor Dr Iain B. McInnes, Director of the Institute of Infection, Immunity & Inflammation, The University of Glasgow, Scotland, explains: “Over time, the structure of the axial skeleton changes and its ability to move becomes increasingly limited.”

Patients experience difficulties getting dressed, bathing, showering, putting on shoes and climbing stairs, among other things. The onset of axSpA affects younger patients, with the first symptoms already experienced by patients between 20 and 30 years of age.

“Symptoms can vary widely and physicians may initially fail to associate them with the disease,” Professor Dr John Isaacs, Director of Therapeutics, The University of Newcastle, UK and Scientific Chair of the EULAR Scientific Committee, explains. He cites pain as a symptom typically affecting both the lower back and upper back, including the neck.

“Many years can pass until the correct diagnosis is made. It is important, however, to detect and accordingly treat the disease as early as possible. Timely treatment can help to prevent permanent damage to bones and joints.”

The “European Map of Axial Spondyloarthritis (EMAS)” study investigated which factors can impact the time to diagnosis. 2,846 patients from 13 European countries with an average age of 48.1 years, who on average had been suffering from axial spondyloarthritis for 17.2 years, participated in the cross-sectional study.

Professor Dr Marco Garrido-Cumbrera of the University of Seville, Spain, and scientific advisor to the International Axial Spondyloarthritis International Federation (ASIF), together with the EMAS Steering Committee, present the findings in a recent study: patients were 26.6 +/- 11.1 years old on average at symptom onset, the mean age at diagnosis was 33.7 +/- 11.5 years and the mean time to diagnosis was 7.4 +/- 8.4 years. Different variables were associated with longer time to diagnosis, among them younger age at symptom onset and female gender. The most strongly associated parameter, however, was the number of medical professionals involved prior to diagnosis. Because these professionals proposed incorrect diagnoses, this delayed the time it took to arrive at the correct diagnosis by a rheumatologist.

In this large sample, the diagnostic delay is on average 7.4 years but can even be up to 15 years. The disease burden on the patient is huge, especially as they suffer from terrible and disabling pain for so many years, without even knowing the source of the pain. As Garrido-Cumbrera adds: “A diagnosis introduces a specific and appropriate treatment and brings hope for the future.”

According to Professor Dr. Denis Poddubnyy from the Charité–Universitätsmedizin Berlin, who also participated in the study, “the fact that visiting a higher number of healthcare professionals delayed the diagnosis shows that there is an urgent need to take measures that prevent misdirected referrals and bring patients with a high probability of axSpA directly to a rheumatologist.” “Improving professional training could indeed prevent unnecessary delays in diagnosis”, Poddubnyy concludes.



1.)  Garrido-Cumbrera M., Navarro-Compán V., Bundy C. on behalf of EMAS Working Group, et al.: OP0278 IDENTIFICATION OF PARAMETERS ASSOCIATED WITH A DIAGNOSTIC DELAY IN AXIAL SPONDYLOARTHRITIS: RESULTS FROM THE EUROPEAN MAP OF AXIAL SPONDYLOARTHRITIS (EMAS)Annals of the Rheumatic Diseases 2020;79:173–174.


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