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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Detalhes 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
Formato: artículo
Estado:Versión publicada
Fecha de publicación:2019
País:España
Recursos:Universidad de Sevilla (US)
Repositorio:idUS. Depósito de Investigación de la Universidad de Sevilla
OAI Identifier:oai:idus.us.es:11441/138010
Acesso em linha:https://hdl.handle.net/11441/138010
https://doi.org/10.1007/s11926-019-0819-8
Access Level:acceso abierto
Palavra-chave:Axial spondyloarthritis
Ankylosing spondylitis
Non-radiographic axial spondyloarthritis
Patient’s perspective
Burden of the disease
Shared decision-making
Europe
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spelling The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 CountriesGarrido Cumbrera, MarcoPoddubnyy, DenisGossec, LaureGálvez Ruiz, DavidBundy, ChristineMahapatra, RajMakri, SouziChristen, LauraDelgado Domínguez, Carlos JesúsSanz-Gómez, SergioPlazuelo Ramos, PedroNavarro-Compán, VictoriaAxial spondyloarthritisAnkylosing spondylitisNon-radiographic axial spondyloarthritisPatient’s perspectiveBurden of the diseaseShared decision-makingEuropePurpose 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.SpringerEstadística e Investigación Operativa2019info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfapplication/pdfhttps://hdl.handle.net/11441/138010https://doi.org/10.1007/s11926-019-0819-8reponame:idUS. Depósito de Investigación de la Universidad de Sevillainstname:Universidad de Sevilla (US)InglésCurrent rheumatology reports, 21, 19-1-19-9.https://doi.org/10.1007/s11926-019-0819-8info:eu-repo/semantics/openAccessoai:idus.us.es:11441/1380102026-06-17T12:51:07Z
dc.title.none.fl_str_mv 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
spellingShingle The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries
Garrido Cumbrera, Marco
Axial spondyloarthritis
Ankylosing spondylitis
Non-radiographic axial spondyloarthritis
Patient’s perspective
Burden of the disease
Shared decision-making
Europe
title_short 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_sort The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective—an Analysis of 2846 Patients Across 13 Countries
dc.creator.none.fl_str_mv 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
author Garrido Cumbrera, Marco
author_facet 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
author_role author
author2 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
author2_role author
author
author
author
author
author
author
author
author
author
author
dc.contributor.none.fl_str_mv Estadística e Investigación Operativa
dc.subject.none.fl_str_mv Axial spondyloarthritis
Ankylosing spondylitis
Non-radiographic axial spondyloarthritis
Patient’s perspective
Burden of the disease
Shared decision-making
Europe
topic Axial spondyloarthritis
Ankylosing spondylitis
Non-radiographic axial spondyloarthritis
Patient’s perspective
Burden of the disease
Shared decision-making
Europe
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.
publishDate 2019
dc.date.none.fl_str_mv 2019
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv https://hdl.handle.net/11441/138010
https://doi.org/10.1007/s11926-019-0819-8
url https://hdl.handle.net/11441/138010
https://doi.org/10.1007/s11926-019-0819-8
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv Current rheumatology reports, 21, 19-1-19-9.
https://doi.org/10.1007/s11926-019-0819-8
dc.rights.none.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
application/pdf
dc.publisher.none.fl_str_mv Springer
publisher.none.fl_str_mv Springer
dc.source.none.fl_str_mv reponame:idUS. Depósito de Investigación de la Universidad de Sevilla
instname:Universidad de Sevilla (US)
instname_str Universidad de Sevilla (US)
reponame_str idUS. Depósito de Investigación de la Universidad de Sevilla
collection idUS. Depósito de Investigación de la Universidad de Sevilla
repository.name.fl_str_mv
repository.mail.fl_str_mv
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score 15.301603

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