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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-reporte...

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Autores principales: Garrido-Cumbrera, Marco, Poddubnyy, Denis, Gossec, Laure, Gálvez-Ruiz, David, Bundy, Christine, Mahapatra, Raj, Makri, Souzi, Christen, Laura, Delgado-Domínguez, Carlos J., Sanz-Gómez, Sergio, Plazuelo-Ramos, Pedro, Navarro-Compán, Victoria
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer US 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6449283/
https://www.ncbi.nlm.nih.gov/pubmed/30868287
http://dx.doi.org/10.1007/s11926-019-0819-8
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author Garrido-Cumbrera, Marco
Poddubnyy, Denis
Gossec, Laure
Gálvez-Ruiz, David
Bundy, Christine
Mahapatra, Raj
Makri, Souzi
Christen, Laura
Delgado-Domínguez, Carlos J.
Sanz-Gómez, Sergio
Plazuelo-Ramos, Pedro
Navarro-Compán, Victoria
author_facet Garrido-Cumbrera, Marco
Poddubnyy, Denis
Gossec, Laure
Gálvez-Ruiz, David
Bundy, Christine
Mahapatra, Raj
Makri, Souzi
Christen, Laura
Delgado-Domínguez, Carlos J.
Sanz-Gómez, Sergio
Plazuelo-Ramos, Pedro
Navarro-Compán, Victoria
author_sort Garrido-Cumbrera, Marco
collection PubMed
description 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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spelling pubmed-64492832019-04-17 The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries Garrido-Cumbrera, Marco Poddubnyy, Denis Gossec, Laure Gálvez-Ruiz, David Bundy, Christine Mahapatra, Raj Makri, Souzi Christen, Laura Delgado-Domínguez, Carlos J. Sanz-Gómez, Sergio Plazuelo-Ramos, Pedro Navarro-Compán, Victoria Curr Rheumatol Rep Spondyloarthritis (M Khan, Section Editor) 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. Springer US 2019-03-12 2019 /pmc/articles/PMC6449283/ /pubmed/30868287 http://dx.doi.org/10.1007/s11926-019-0819-8 Text en © The Author(s) 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Spondyloarthritis (M Khan, Section Editor)
Garrido-Cumbrera, Marco
Poddubnyy, Denis
Gossec, Laure
Gálvez-Ruiz, David
Bundy, Christine
Mahapatra, Raj
Makri, Souzi
Christen, Laura
Delgado-Domínguez, Carlos J.
Sanz-Gómez, Sergio
Plazuelo-Ramos, Pedro
Navarro-Compán, Victoria
The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries
title The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries
title_full The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries
title_fullStr The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries
title_full_unstemmed The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries
title_short The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries
title_sort european map of axial spondyloarthritis: capturing the patient perspective—an analysis of 2846 patients across 13 countries
topic Spondyloarthritis (M Khan, Section Editor)
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6449283/
https://www.ncbi.nlm.nih.gov/pubmed/30868287
http://dx.doi.org/10.1007/s11926-019-0819-8
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