The average delay in diagnosis for patients with axial spondyloarthritis (axSpA) is 7 to 10 years. Factors that contribute to this delay are multifactorial and include the lack of diagnostic criteria (although classification criteria exist) for axSpA and the difficulty in distinguishing inflammatory back pain, a key symptom of axSpA, from other highly prevalent forms of low back pain. We sought to describe reasons for diagnostic delay for axSpA provided by primary care physicians.
We conducted a qualitative research study which included 18 US primary care physicians, balanced by gender. Physicians provided informed consent to participate in an in-depth interview (< 60 min), conducted in person (n = 3) or over the phone (n = 15), in 2019. The analysis focuses on thoughts about factors contributing to diagnostic delay in axSpA.
Physicians noted that the disease characteristics contributing to diagnostic delay include: back pain is common and axSpA is less prevalent, slow progression of axSpA, intermittent nature of axSpA pain, and in the absence of abnormal radiographs of the spine or sacroiliac joints, there is no definitive test for axSpA. Patient characteristics believed to contribute to diagnostic delay included having multiple conditions in need of attention, infrequent interactions with the health care system, and “doctor shopping.” Doctors noted that patients wait until the last moments of the clinical encounter to discuss back pain. Problematic physician characteristics included lack of rapport with patients, lack of setting appropriate expectations, and attribution of back pain to other factors. Structural/system issues included short appointments, lack of continuity of care, insufficient insurance coverage for tests, lack of back pain clinics, and a shortage of rheumatologists.
Primary care physicians agreed that lengthy axSpA diagnosis delays are challenging to address owing to the multifactorial causes (e.g., disease characteristics, patient characteristics, lack of definitive tests, system factors).