Does Belonging to a Patient Association Is of Help for Patients with Axial Spondyloarthritis? Results from the Atlas Survey.

PURPOSE OF REVIEW: International guidelines for axial spondyloarthritis (axSpA) suggest that patients benefit from becoming members of patient associations. However, the scientific evidence for this is limited and unconvincing. The objective of this study was to evaluate the differences in sociodemographic characteristics, lifestyle habits, and patient-reported outcomes (PROs) between axSpA patients belonging to patient associations versus those who do not. RECENT FINDINGS: Out of 680 patients, 301 (44.3%) were members of a patient association. A significant proportion of association members were found to engage in physical activities considered appropriate to their condition (48.2% vs. 39.8%, p = 0.03), and smoked significantly less compared with their non-association counterparts (22.7% vs. 33.6%, p = 0.02). In addition, despite having longer disease duration, and receiving similar treatments, members of associations reported significantly lower disease activity (BASDAI 5.1 vs. 5.8; p < 0.001), less functional limitations (Functional Limitation Index 26.4 vs. 28.6; p < 0.05), and a lower risk of psychological distress (GHQ-12 4.9 vs. 6.5; p < 0.001). The results of this study suggest there are beneficial effects of belonging to a patient association for managing axSpA, since those member patients experience better lifestyle habits and PROs than those who do not so participate. Rheumatologists should encourage patients to enroll in patient associations for a holistic approach to managing their condition.

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

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

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

Atlas of axial spondyloarthritis in Spain 2017: Study design and population.

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.

The convention on the rights of persons with disabilities UN: analysis of the implementation in Andalucía (Spain) of article 33 / La convención sobre los derechos de las personas con discapacidad de la ONU: análisis de la aplicación del artículo 33 en Andalucía (España)

The United Nations Convention on the Rights of Persons with Disabilities is a major human rights instrument of the United Nations with the goal of ensuring protection of rights of persons with disabilities. In Article 33, ‘National implementation and monitoring’ establishes, among other things, that States Parties shall implement the Convention and establish or designate a coordination mechanism at government level. This article aims to show the results of implementing Article 33 in Andalucía (Spain) in the context of the European project ‘Planning Inclusive Communities’ led by the University of Siegen (Germany). The methodology used in this study was based on a comparative analysis of data obtained through a series of surveys addressed to local governments in different European regions. This article shows the results obtained in Andalucía region where the Convention is disseminated in various formats, at local levels it shows a low presence, because ratification have neither led to a legal obligation at lower state levels. Local managers showed disregard for the principles of the Convention and its practical application. This lack of information at local level influences the methods that Spanish occupational therapists (OT) use with persons with disabilities in occupational centers (OC).

La Convención de las Naciones Unidas sobre los Derechos de las Personas con discapacidad es un importante instrumento de derechos humanos que tiene como objetivo garantizar la protección de los derechos de las personas con discapacidad. En el artículo 33, ‘Aplicación y seguimiento nacional‘ se establece, entre otras cosas, que los Estados deben aplicar los artículos de la Convención y establecer o designar un mecanismo de coordinación a nivel gubernamental. Este artículo tiene como objetivo mostrar los resultados obtenidos en Andalucía (España) de la aplicación del artículo 33 dentro del proyecto europeo `Planning Inclusive Communities‘ dirigido por la Universidad de Siegen (Alemania). La metodología seguida en este estudio se basó en un análisis comparativo de los datos obtenidos a través de una serie de encuestas dirigidas a gobiernos locales de diferentes regiones europeas. Este artículo muestra los resultados obtenidos en la región de Andalucía, en la cual la Convención se difunde en una gran variedad de formas. A nivel local, la Convención se muestra con una presencia baja debido a que la ratificación no ha conllevado una obligación legal en los niveles administrativos más bajos. Los gerentes locales mostraron un cierto desconocimiento de los principios de la Convención de las Naciones Unidas y su aplicación práctica. Esta falta de información a nivel local influye en los métodos que los terapeutas ocupacionales (TO) españoles utilizan con las personas con discapacidad en los centros ocupacionales (CO).