Bridging the gap in the delayed diagnosis of axSpA Save

Delay in the diagnosis of axial spondyloarthritis (axSpA) has been a huge challenge and is associated with poor outcomes.

Poster # 0359 by Garrido-Cumbrera et al. set out to map out patients' journey from the onset of symptoms to the time of diagnosis. There appears to be an approximately 7-year delay in diagnosis in axSpA across 13 European countries. In this study, over 70% of axSpA was diagnosed by the rheumatologist and about 15% by the  general practitioner. The patients whose diagnoses were delayed by more than a year were noted to have an increased uncontrolled active disease. The delay in diagnosis seems to have increased the number of patient visits to multiple practitioners. Patients also had to undergo more investigations relevant to the disease compared to patients with low or inactive disease activity. 

Understanding this significant delay in diagnosis and its detrimental effects, Poster #0370 by Afinogenova et al. sought to understand Primary Care Providers' (PCP) awareness and referral patterns about axSpA among chronic back pain patients in three institutions in the US using a survey developed by Dr. Narinder Maheshwari (PCP), at University of Connecticut and Dr. Abhijeet Danve (Rheumatologist) at Yale. One hundred thirty-eight PCPs completed the survey, which included demographics, PCPs’ approach towards chronic back pain, knowledge and familiarity about axSpA. While the majority (96%) were familiar with the term inflammatory back pain (IBP), less than half actually assessed for IBP and were uncomfortable in diagnosing it. PCPs lack understanding of the changed nomenclature as well as standard diagnostic approach towards axSpA and do not feel comfortable in making diagnosis of axSpA. The significant gap in knowledge about axSpA can lead to its under-recognition among PCPs, who are often the first point of contact for back pain, and contribute to a lack of appropriate referrals to rheumatologists.

Poster #0371, presented by Afinogenova et al. as part of an ongoing prospective study, offers a self-referral strategy to aid in diagnosing axSpA at an earlier stage. A screening tool named the A-tool developed by Dr. Abhijeet Danve at Yale, which consists of a 3 question prescreen and 8 question screening tool containing SpA clinical features with reasonable sensitivity and specificity for diagnosis of axSpA, was distributed by patient communication portal in the electronic records and Facebook to patients suffering from chronic back pain. Patients fulfilling prespecified eligibility criteria were invited for a detailed clinical, lab and imaging evaluation. Among the 634 participants who took the survey, 268 passed the screening test, and 43 patients underwent a complete evaluation, after which 15 patients were diagnosed with axspA (6 with ankylosing spondylitis and 9 with non-radiographic axSpA). Thus, the A-tool based approach offers a novel patient directed effort to reduce the delay in diagnosis of axSpA.