Rheum to Diagnosis: A Mixed Methods Study to Uncover Impediments to Accurate Diagnosis of Nonradiographic Axial Spondyloarthritis in the United States

Abstract

BackgroundDelayed diagnosis of axial spondyloarthritis (axSpA) is well documented, but little is known about the distinct diagnostic journey and impediments for US patients with nonradiographic axSpA (nr-axSpA).MethodsInterviews of adults with rheumatologist-diagnosed nr-axSpA and of rheumatologists explored the diagnostic journey and barriers to diagnosis. Emerging themes were further explored in an online patient survey. Patients were recruited through Spondylitis Association of America outreach and patient panels. ResultsInterviews were conducted with 25 patients (mean age, 45 years; 80% female) and 16 rheumatologists. Survey responses from 186 eligible patients (median age, 40 years; 67% female) were analyzed. Among surveyed patients, median time from symptom onset to nr-axSpA was 3.25 years. In multivariable analysis, delayed diagnosis was significantly more likely for women and people in rural areas. Most patients consulted ≥4 different types of healthcare providers (HCPs) before seeing a rheumatologist and consulted ≥2 rheumatologists before nr-axSpA diagnosis. Identified impediments to timely diagnosis included the insidious onset of bothersome but tolerable chronic pain; episodic rather than persistent symptom patterns that seemed related to activity; symptoms other than chronic lumbosacral back pain that were dominant and required medical consultation; and widespread unfamiliarity with and misperceptions about nr-axSpA among frontline HCPs, radiologists, and rheumatologists. ConclusionsDelayed nr-axSpA diagnosis is common and reflects HCP knowledge gaps as well as frequent patient presentation with dominant nonaxial symptoms. Targeted HCP education, further research into early disease patterns, and interventions sensitive to the broader spectrum of nr-axSpA manifestations are needed to improve timely diagnosis. Trial RegistrationNot applicable.