The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective – an Analysis of 2846 Patients Across 13 Countries
Marco Garrido-Cumbrera, Denis Poddubnyy, Laure Gossec, David Gálvez-Ruiz, Christine Bundy, Raj MahapatraSouzi, Makri Laura Christen, Carlos J. Delgado-Domínguez, Sergio Sanz-Gómez, Pedro Plazuelo-Ramos, Victoria Navarro-Compán on behalf of the EMAS Working Group.
Current Rheumatology Reports. 2019. 21:19.
Purpose of Review
Scientific research in axial spondyloarthritis (axSpA) has grown significantly. Nevertheless, the patient perspective remains insufficiently explored. Using a cross-sectional survey, the European Map of Axial Spondyloarthritis (EMAS) describes how patients living with self-reported axSpA experience their disease physically, psychologically, and socially.
Recent Findings
2846 patients participated: mean age 43.9 ± 12.3 years, 61.3% female, mean disease duration was 17.2 ± 12.4 years, and 71.3% were HLA-B27 positive. Mean diagnostic delay was 7.4 ± 8.4 years. Mean BASDAI score was 5.5 ± 2.0 and 75.7% reported moderate/severe spinal stiffness throughout the day. Daily life was substantially impaired: 74.1% reported difficulties finding a job due to the disease, and 61.5% reported psychological distress.
Summary
EMAS results showed long diagnostic delay and substantial physical and psychological burden, indicating important unmet needs for patients. Furthermore, axSpA restricted patients’ ability to participate in their daily routine and lead a productive work life. Understanding the patient’s perspective can improve both health outcomes and shared decision-making between patient and rheumatologist.
Keywords
Axial spondyloarthritis Ankylosing spondylitis Non-radiographic axial spondyloarthritis Patient’s perspective Burden of the disease Shared decision-making Europe
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