Axial spondyloarthritis in the USA: diagnostic challenges and missed opportunities

Abstract

Axial spondyloarthritis (axSpA) is a chronic inflammatory rheumatic disease that primarily affects the sacroiliac joints and spine. Delayed or inadequate treatment may decrease quality of life and lead to poor long-term outcomes, including irreversible loss of spinal function. In this review, we discuss clinical practice related to axSpA within the USA, including prevalence, diagnosis, reasons for delayed/missed diagnosis, and suggestions for making early diagnosis. The US population prevalence of axSpA (0.9-1.4%) is higher than the diagnostic prevalence (0.2-0.7%). Although the estimated diagnostic delay for axSpA is 14 years in the USA, the disease can be identified earlier if appropriately preselected patients are quickly referred to rheumatologists. Only 37% of patients with ankylosing spondylitis in the USA are diagnosed by rheumatologists; the remaining 63% are diagnosed by primary care (26%), chiropractic/physical therapy (7%), orthopedic surgery (4%), pain clinics (4%), acute care (3%), and other settings (19%). To help reduce diagnostic delay, non-rheumatologist-healthcare professionals are urged to refer patients with back pain and ≥ 1 of 3 SpA features (HLA-B27 positivity, current inflammatory back pain, or x-ray/MRI evidence of sacroiliitis) to a rheumatologist. Prevalence and diagnosis rates of axSpA are disparate in the USA due to the lack of awareness and knowledge among non-rheumatologists. Progress has been made in identifying hurdles causing diagnostic delays. Public health initiatives are needed to guide primary care physicians, physical therapists, chiropractors, and other specialists seeing patients with chronic back pain on methods for suspecting or identifying axSpA and early referral to rheumatologists.Keywords Ankylosing spondylitis . Axial spondyloarthritis . Clinical practice in the USA . Inflammatory back pain . Non-radiographic axial spondyloarthritis . Referral strategy

Clinical, Economic, and Humanistic Burden Associated With Delayed Diagnosis of Axial Spondyloarthritis: A Systematic Review

“…Although greater awareness of axSpA and the development and application of classification criteria have resulted in a decrease in the time to axSpA diagnosis [33][34][35], the above classification criteria were developed for clinical research and not as diagnostic tools; thus, use of these criteria for diagnosis of axSpA can be limited in routine clinical practice [1,36,37]. Criteria such as IBP, good response to nonsteroidal anti-inflammatory drugs, and presence of enthesitis are somewhat subjective in nature [36]. Development of radiographic sacroiliitis may be delayed [26,27], and interpretation of radiographs of the sacroiliac joints is subject to substantial interreader variability [38,39].…”

“…Development of radiographic sacroiliitis may be delayed [26,27], and interpretation of radiographs of the sacroiliac joints is subject to substantial interreader variability [38,39]. Current magnetic resonance imaging protocols routinely used in the evaluation of low back pain can yield false-negative results due to low sensitivity for inflammation or false-positive results due to inflammatory changes that can occur in the sacroiliac joints of athletes and patients with degenerative arthritis, trauma, or other conditions [36,37,[40][41][42]. Additionally, use of these criteria may not be regularly applied in rheumatology settings [43], and discrepancies have been observed between fulfillment of ASAS criteria and rheumatologist diagnosis of axSpA [32].…”

“…The majority of patients eventually diagnosed with axSpA first seek care from primary care physicians or nonrheumatology healthcare providers [7,36,43,44]. Prompt referral to rheumatologists can facilitate an earlier diagnosis [36].…”

“…The majority of patients eventually diagnosed with axSpA first seek care from primary care physicians or nonrheumatology healthcare providers [7,36,43,44]. Prompt referral to rheumatologists can facilitate an earlier diagnosis [36]. However, referral to rheumatology specialists is often delayed due to underrecognition of symptoms of IBP suggestive of axSpA among nonrheumatology healthcare providers [36,44,45].…”

Cross‐cultural adaptation of the Hamilton axial spondyloarthritis questionnaire and development of a Chinese version in a multi‐ethnic Asian population

“…Despite its suboptimal performance, the adapted axial SpA questionnaire has helped to direct costly workup such as magnetic resonance imaging to patients with a high index of suspicion.If the adapted axial SpA questionnaire is proven sensitive in identifying axial SpA in the next phase of our study, we hope to administer it to individuals in primary care and general population settings via various platforms such as web-based and mobile applications to estimate the prevalence of axial SpA in Singapore. This would complement the ongoing public awareness activities which aim to address the low awareness of axial SpA,40 one of the key barriers to early diagnosis [38][39][40]. The adapted axial SpA questionnaire could enhance the role of general practitioners by empowering members of the public to determine their likelihood of having axial SpA so that subjects with a significant chance of having axial SpA would be…”