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Vol. 15. Num. 3.
Pages 125-184 (May - June 2019)
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Vol. 15. Num. 3.
Pages 125-184 (May - June 2019)
Special Article
DOI: 10.1016/j.reumae.2018.09.010
Atlas of axial spondyloarthritis in Spain 2017: Study design and population
Atlas de Espondiloartritis Axial en España 2017: diseño del estudio y descripción de la muestra
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Marco Garrido-Cumbreraa,b,
Corresponding author
mcumbrera@us.es

Corresponding author.
, Victoria Navarro-Compánc, Pedro Zarcod, Eduardo Collantes-Estéveze, David Gálvez-Ruiza, Olta Braçea, Jorge Chacón Garcíaa, Carles Blanch Murf, Angels Costa Ferrerf, Alvaro Hidalgo Vegag, Pedro Plazuelo Ramosb, Jordi Gratacós Masmitjah
a Health & Territory Research, Universidad de Sevilla, Seville, Spain
b Spanish Coordinator of Associations of Spondylarthritis (CEADE), Madrid, Spain
c Department of Rheumatology, University Hospital La Paz, IdiPaz. Madrid, Spain
d Department of Rheumatology, Foundation Hospital of Alcorcón, Madrid, Spain
e Department of Rheumatology, Reina Sofia University Hospital, Maimonides Biomedical Research Institute of Cordoba (IMIBIC), University of Cordoba, Cordova, Spain
f Novartis, Barcelona, Spain
g Universidad de Castilla-La Mancha, Toledo, Spain
h Department of Rheumatology, Hospital Universitari Parc Taulí, Sabadell, I3PT, UAB, Spain
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Tables (4)
Table 1. Variables included within the patient questionnaire of the Atlas 2017.
Table 2. Sociodemographic characteristics of the 680 survey respondents included in the Atlas.
Table 3. Clinical self-reported characteristics of patients included in the Atlas 2017, according to patient responses.
Table 4. Average cost per year of AS patients in Spain, and cost distribution in 2015.
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Abstract
Objective

Atlas of Axial Spondyloarthritis in Spain 2017 aims to better understand the reality of the patients suffering from this disease from an integrated approach.

Methods

The Atlas 2017 based its results on an extensive cross-sectional patient survey conducted in Spain (2016), validated by a multidisciplinary group of experts on spondyloarthritis.

Results

Data from 680 patients with axSpA were obtained, most of them suffered from AS, were HLA-B27 positive, older than 45 years, and live as part of a couple. A large percentage had university studies, were disabled and members of a patient association. Patients reported a diagnostic delay of 8.5 years, high disease activity (BASDAI 5.5±2.2), moderate-important stiffness (61.0%), medium-high functional limitation (74.9%), and psychological distress (GHQ 5.7±4.5). A total of 54.7% reported taking NSAIDs, 28.4% DMARDs, 36.3% biological therapy and 32.2% were not receiving pharmacological treatment.

Conclusions

The Atlas survey data reveals still a long diagnostic delay, high disease activity, psychological distress, while an important proportion could be undertreated.

Keywords:
Axial spondyloarthritis
Burden of disease
Healthcare management
Patient perspective
Resumen
Objetivo

El Atlas de Espondiloartritis Axial en España 2017 tiene como objetivo comprender mejor la realidad de los pacientes que padecen esta enfermedad desde un enfoque integrado.

Métodos

El Atlas 2017 basó sus resultados en una amplia encuesta transversal de pacientes realizada en España (2016), validada por un grupo interdisciplinar de expertos en espondiloartritis.

Resultados

Se obtuvieron datos de 680 pacientes con EspAax. La mayoría de ellos sufría EA, eran HLA-B27 positivo, mayores de 45 años y vivían en pareja. Un gran porcentaje tenía estudios universitarios, discapacidad reconocida y era miembro de una asociación de pacientes. Los pacientes declararon un retraso diagnóstico de 8,5 años, alta actividad de la enfermedad (BASDAI 5,5±2,2), rigidez moderada-importante (61,0%), limitación funcional moderada-alta (74,9%) y problemas psicológicos (GHQ 5,7±4,5). Un total del 54,7% declaró estar tomando AINE, el 28,4% FAME, el 36,3% terapia biológica, mientras que el 32,2% no recibía ningún tipo de tratamiento farmacológico.

Conclusiones

Los datos de la encuesta Atlas revelan todavía un enorme retraso diagnóstico, alta actividad de la enfermedad, problemas psicológicos, mientras que una proporción importante de pacientes podrían estar infratratados.

Palabras clave:
Espondiloartritis axial
Carga de la enfermedad
Gestión de la atención sanitaria
Perspectiva del paciente

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