The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries

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...

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Detalles Bibliográficos
Autores: Garrido Cumbrera, Marco, Poddubnyy, Denis, Gossec, Laure, Gálvez Ruiz, David, Bundy, Christine, Mahapatra, Raj, Makri, Souzi, Christen, Laura, Delgado Domínguez, Carlos Jesús, Sanz-Gómez, Sergio, Plazuelo Ramos, Pedro, Navarro-Compán, Victoria
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2019
País:España
Institución:Universidad de Sevilla (US)
Repositorio:idUS. Depósito de Investigación de la Universidad de Sevilla
OAI Identifier:oai:idus.us.es:11441/138010
Acceso en línea:https://hdl.handle.net/11441/138010
https://doi.org/10.1007/s11926-019-0819-8
Access Level:acceso abierto
Palabra clave:Axial spondyloarthritis
Ankylosing spondylitis
Non-radiographic axial spondyloarthritis
Patient’s perspective
Burden of the disease
Shared decision-making
Europe
Descripción
Sumario: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.

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