A mixed methods study to uncover impediments to accurate diagnosis of nonradiographic axial spondyloarthritis in the USA.

Abstract

Delayed diagnosis of axial spondyloarthritis (axSpA) is well documented; little is known about the diagnostic journey and impediments for US patients with nonradiographic axSpA (nr-axSpA). It is hypothesized that impediments are varied and exist at both the healthcare provider (HCP) and patient levels. This study aims to understand patient experiences and contributors to delayed nr-axSpA diagnosis in the USA. Interviews of adults with rheumatologist-diagnosed nr-axSpA, recruited through Spondylitis Association of America outreach and patient panels, and of rheumatologists, explored the diagnostic journey and diagnostic barriers. Emerging themes were further explored in an online patient survey. A multiple logistic regression analysis evaluated the main outcome variable, factors affecting time to nr-axSpA diagnosis. Interviews were conducted with 25 patients and 16 rheumatologists. Survey responses from 186 eligible patients revealed median time from symptom onset to diagnosis of nr-axSpA was 3.25 years. Delayed diagnosis was significantly more likely for women and people in rural areas. Most patients consulted ≥4 different types of HCPs before a rheumatologist and ≥2 rheumatologists before diagnosis. Impediments to timely diagnosis included insidious chronic pain; episodic symptom patterns attributed to activity; symptoms other than chronic lumbosacral back pain requiring medical consultation; and unfamiliarity with and misperceptions about nr-axSpA among HCPs, radiologists, and rheumatologists. Delayed nr-axSpA diagnosis is common and reflects HCP knowledge gaps and frequent patient presentation with dominant nonaxial symptoms. Targeted HCP education, research into early disease patterns, and interventions sensitive to the broader spectrum of nr-axSpA manifestations are needed to improve timely diagnosis. Key Points • Patients with nr-axSpA often see multiple types of HCPs, and multiple rheumatologists, before receiving a diagnosis. • Both patients and HCPs are unfamiliar with nr-axSpA and its symptoms, lacking understanding that nr-axSpA can occur in young people, females, and those presenting with normal x-rays. • Disease recognition by nonrheumatology HCPs is key for early referral. • Education on cardinal features, epidemiology, burden, and benefits of timely nr-axSpA diagnosis is warranted for HCPs who commonly manage back pain.