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Vol. 18. Issue 3.
Pages 169-176 (March 2022)
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Vol. 18. Issue 3.
Pages 169-176 (March 2022)
Original Article
Similarities and differences between non-radiographic and radiographic axial spondyloarthritis: The patient perspective from the Spanish atlas
Similitudes y diferencias entre espondiloartritis axial no radiográfica y radiográfica: perspectiva del paciente utilizando la versión española del Atlas
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Marco Garrido-Cumbreraa,b,
Corresponding author
mcumbrera@us.es

Corresponding author.
, Jordi Gratacosc, Eduardo Collantes-Estevezd,e, Pedro Zarcof, Carlos Sastreg, Sergio Sanz-Gómeza, Victoria Navarro-Compánh
a Health & Territory Research, Universidad de Sevilla, Seville, Spain
b Spanish Federation of Spondyloarthritis Associations (CEADE), Madrid, Spain
c Hospital Universitari Parc Taulí, I3PT, UAB, Barcelona, Spain
d Reina Sofia University Hospital, Cordoba, Spain
e Maimonides Biomedical Research Institute of Cordoba (IMIBIC), University of Cordoba, Cordoba, Spain
f Hospital Universitario Fundación Alcorcón, Madrid, Spain
g Novartis Spain, Barcelona, Spain
h Hospital Universitario La Paz, IdiPaz, Madrid, Spain
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Tables (5)
Table 1. Sociodemographic characteristics and patient-reported outcomes of patients with self-reported nr-axSpA (N: 35, unless other specified) and r-axSpA (N: 599, unless other specified).
Table 2. Employment status of patients with self-reported nr-axSpA (N: 35) and r-axSpA (N: 599).
Table 3. Specialists appointments in the past 12 months of patients with self-reported nr-axSpA (N: 35) and r-axSpA (N: 599).
Table 4. Medical test undertaken before diagnosis of patients with self-reported nr-axSpA (N: 35) and r-axSpA (N: 599).
Table 5. Pharmacological treatment undertaken in the past 12 months of patients with self-reported nr-axSpA (N: 35, unless other specified) and r-axSpA (N: 599, unless other specified).
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Abstract
Aim

Although non-radiographic axial spondyloarthritis (EspAax-nr) is well understood within health institutions, being considered along with radiographic EspAax (EspAax-r) as part of the same disease spectrum, patient understanding is unknown. The aim is to describe the patient's knowledge of the EspAax-nr entity.

Methods

Atlas 2017, promoted by the Spanish Federation of Spondylarthritis Associations (CEADE), aims to comprehensively understand the reality of EspAax patients from a holistic approach. A cross-sectional on-line survey of unselected patients with self-reported EspAax diagnosis from Spain was conducted. Participants were asked to report their diagnosis. Socio-demographic, disease characteristics and patient-reported outcomes (PROs) were compared between those patients self-reporting as EspAax-nr and EspAax-r.

Results

634 EspAax patients participated. Mean age 45.7±10.9 years, 50.9% female and 36.1% university-educated. 35 (5.2%) self-reported as EspAax-nr. Compared to EspAax-r patients, those with EspAax-nr were more frequently women (48.6% vs 91.4%, p<0.001), had longer diagnostic delay (10.1±8.9 vs 8.5±7.6 years), higher psychological distress (GHQ-12: 7.5±4.9 vs 5.6±4.4) and similar degree of disease activity (BASDAI: 5.7±2.1 vs 5.7±2.0), and unemployment rates (20.0% vs 21.6%). 20.0% of EspAax-nr received biologics vs 36.9% of EspAax-r, p=0.043. Visits to the rheumatologist in the past year were similar in both groups (3.8±4.5 vs 3.2±3.8), while GP visits were much higher within EspAax-nr (8.0±10.7 vs 4.9±13.3 p=0.003).

Conclusion

For the first time, EspAax-nr characteristics and PROs have been analyzed from the patient's perspective. Both groups reported similar trends with the exception of EspAax-nr being more frequently women, younger, having longer diagnostic delay and lower use of biologic therapy.

Keywords:
Ankylosing spondylitis
Diagnosis-related groups
Delayed diagnosis
Pharmacologic therapy
Patient-reported outcomes
Resumen
Objetivo

Aunque se comprende bien la espondiloartritis axial no radiográfica (EspAax-nr) dentro de las instituciones sanitarias, se desconoce la comprensión del paciente cuando se considera conjuntamente con la espondiloartritis axial radiográfica (r-axSpA), como parte del mismo espectro de la enfermedad. El objetivo de este artículo es describir el conocimiento del paciente de la entidad EspAax-nr.

Métodos

El objetivo de Atlas 2017, promovido por la Federación Española de Asociaciones de Espondiloartritis (CEADE), es comprender la realidad de los pacientes con espondiloartritis axial (EspAax) desde un enfoque holístico. Se realizó una encuesta transversal online a pacientes españoles no seleccionados, con diagnóstico autoreportado de axSpA. Se solicitó a los participantes que informaran su diagnóstico. Se compararon las características sociodemográficas y los resultados reportados por el paciente (RPO) entre los pacientes que autoreportaron EspAax-nr y EspAax-r.

Resultados

Participaron 634 pacientes de EspAax, con edad media de 45,7 ± 10,9 años, siendo mujeres el 50,9%, y un 36,1% con formación universitaria. Treinta y cinco de ellas (5,2%) autoreportaron EspAax-nr. En comparación con los pacientes de EspAax-r, aquellos con EspAax-nr eran mujeres con mayor frecuencia (48,6 vs. 91,4%, p < 0,001), tenían mayor demora en el diagnóstico (10,1 ± 8,9 vs. 8,5 ± 7,6 años), y mayor grado de angustia psicológica (12-item general health questionnaire [GHQ-12]: 7,5 ± 4,9 vs. 5,6 ± 4,4) y grado similar de actividad de la enfermedad (bath ankylosing spondylitis disease activity index [BASDAI]: 5,7 ± 2,1 vs. 5,7 ± 2), y tasas de desempleo (20 vs. 21,6%). El 20% de los pacientes de EspAax-nr recibían terapia biológica vs. el 36,9% de pacientes de r-axSpA, p = 0,043. Las visitas al reumatólogo el año anterior fueron similares en ambos grupos (3,8 ± 4,5 vs. 3,2 ± 3,8), mientras que las visitas al médico de atención primaria eran más frecuentes dentro del grupo de nr-axSpA (8 ± 10,7 vs. 4,9 ± 13,3 p = 0,003).

Conclusión

Por vez primera, se han analizado las características de EspAax-nr y PRO desde la perspectiva del paciente. Ambos grupos reportaron tendencias similares, exceptuando que el grupo de EspAax-nr estaba más frecuentemente formado por mujeres, más jóvenes, con mayor demora en el diagnóstico y menor uso de terapia biológica.

Palabras clave:
Espondilitis anquilisante
Grupos relacionados con el diagnóstico
Demora en el diagnóstico
Terapia farmacológica
Resultados reportados por el paciente

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