Rheumatologist and patient perspectives on axial spondyloarthritis management and treatment satisfaction in Europe

Objective: To investigate the characteristics of axial spondyloarthritis (axSpA) and understand rheumatologists’ and patients’ experiences of axSpA management in a large real-world population using data from a cross-sectional survey. Methods: Rheumatologists recruited from France, Germany, Italy, Spain, and the UK completed surveys for their next eight consulting adult patients with axSpA. The same patients were asked to voluntarily complete a survey, allowing rheumatologist- and patient-reported responses to be matched and compared. Surveys covered clinical status, symptoms and treatment decisions, preferences, and satisfaction. Results: Between June 2023 and June 2024, 268 rheumatologists provided data on 2165 patients, 538 of whom completed the survey. At the time of the survey, patients continued to experience symptoms of axSpA (morning stiffness [35 %], inflammatory back, hip, or buttock pain [25 %], and fatigue [25 %]), despite 77 % having received disease-modifying advanced therapy. There was moderate agreement between patients and their rheumatologists on disease severity (86 % weighted agreement at the time of the survey, κ=0.515) and on their satisfaction with current treatment. The most common treatment target for rheumatologists was to achieve low disease activity (76 %), while the most common target for patients was to alleviate pain (61 %). Rheumatologists highlighted lack of efficacy, pain control, and flare control, and residual fatigue as reasons for treatment dissatisfaction. Conclusion: Patients and their rheumatologists were moderately aligned on their perception of disease severity and treatment satisfaction but differed in their expectations regarding treatment target. The study highlights the need for ongoing involvement of patients in discussions and decisions about axSpA management.