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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.
Afiliação
  • Garrido-Cumbrera M; Universidad de Sevilla, Seville, Spain. mcumbrera@us.es.
  • Poddubnyy D; Health & Territory Research (HTR), Centro de Investigación, Tecnología e Innovación Manuel Losada Villasante (CITIUS), Universidad de Sevilla, C/ Dr Rafael Martínez Domínguez s/n, 41013, Seville, Spain. mcumbrera@us.es.
  • Gossec L; Spanish Federation of Spondyloarthritis Patient Associations (CEADE), Madrid, Spain. mcumbrera@us.es.
  • Gálvez-Ruiz D; Charité-Universitätsmedizin Berlin, Berlin, Germany.
  • Bundy C; German Rheumatism Research Centre, Berlin, Germany.
  • Mahapatra R; Sorbonne Université, Institut Pierre Louis d'Epidémiologie et de Santé Publique (iPLESP), Paris, France.
  • Makri S; Rheumatology Department, Pitié Salpêtrière hospital, AP-HP, Paris, France.
  • Christen L; Universidad de Sevilla, Seville, Spain.
  • Delgado-Domínguez CJ; Health & Territory Research (HTR), Centro de Investigación, Tecnología e Innovación Manuel Losada Villasante (CITIUS), Universidad de Sevilla, C/ Dr Rafael Martínez Domínguez s/n, 41013, Seville, Spain.
  • Sanz-Gómez S; Cardiff University, Cardiff, UK.
  • Plazuelo-Ramos P; Ankylosing Spondylitis International Federation (ASIF), London, UK.
  • Navarro-Compán V; Cyprus League Against Rheumatism, Nicosia, Cyprus.
Curr Rheumatol Rep ; 21(5): 19, 2019 03 12.
Article em En | MEDLINE | ID: mdl-30868287
ABSTRACT
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. 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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Texto completo: 1 Bases de dados: MEDLINE Assunto principal: Qualidade de Vida / Efeitos Psicossociais da Doença / Espondilartrite Tipo de estudo: Diagnostic_studies / Prognostic_studies / Qualitative_research Limite: Adult / Female / Humans / Male / Middle aged Idioma: En Revista: Curr Rheumatol Rep Assunto da revista: REUMATOLOGIA Ano de publicação: 2019 Tipo de documento: Article País de afiliação: Espanha

Texto completo: 1 Bases de dados: MEDLINE Assunto principal: Qualidade de Vida / Efeitos Psicossociais da Doença / Espondilartrite Tipo de estudo: Diagnostic_studies / Prognostic_studies / Qualitative_research Limite: Adult / Female / Humans / Male / Middle aged Idioma: En Revista: Curr Rheumatol Rep Assunto da revista: REUMATOLOGIA Ano de publicação: 2019 Tipo de documento: Article País de afiliação: Espanha