Aim: Although non-radiographic axial spondyloarthritis (EspAax-nr) is well understood within health institutions, being considered along with radiographic EspAax (EspAax-r) as part of the same disease spectrum, patient understanding is unknown. The aim is to describe the patient's knowledge of the EspAax-nr entity.
Methods: Atlas 2017, promoted by the Spanish Federation of Spondylarthritis Associations (CEADE), aims to comprehensively understand the reality of EspAax patients from a holistic approach. A cross-sectional on-line survey of unselected patients with self-reported EspAax diagnosis from Spain was conducted. Participants were asked to report their diagnosis. Socio-demographic, disease characteristics and patient-reported outcomes (PROs) were compared between those patients self-reporting as EspAax-nr and EspAax-r.
Results: 634 EspAax patients participated. Mean age 45.7±10.9 years, 50.9% female and 36.1% university-educated. 35 (5.2%) self-reported as EspAax-nr. Compared to EspAax-r patients, those with EspAax-nr were more frequently women (48.6% vs 91.4%, p<0.001), had longer diagnostic delay (10.1±8.9 vs 8.5±7.6 years), higher psychological distress (GHQ-12: 7.5±4.9 vs 5.6±4.4) and similar degree of disease activity (BASDAI: 5.7±2.1 vs 5.7±2.0), and unemployment rates (20.0% vs 21.6%). 20.0% of EspAax-nr received biologics vs 36.9% of EspAax-r, p=0.043. Visits to the rheumatologist in the past year were similar in both groups (3.8±4.5 vs 3.2±3.8), while GP visits were much higher within EspAax-nr (8.0±10.7 vs 4.9±13.3 p=0.003).
Conclusion: For the first time, EspAax-nr characteristics and PROs have been analyzed from the patient's perspective. Both groups reported similar trends with the exception of EspAax-nr being more frequently women, younger, having longer diagnostic delay and lower use of biologic therapy.
Keywords: Ankylosing spondylitis; Delayed diagnosis; Demora en el diagnóstico; Diagnosis-related groups; Espondilitis anquilisante; Grupos relacionados con el diagnóstico; Patient-reported outcomes; Pharmacologic therapy; Resultados reportados por el paciente; Terapia farmacológica.
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