Background International guidelines suggest that patients with axial spondyloarthritis (axSpA) become members of patient associations and self-help groups. However, the scientific evidence for this advice is limited and poor.
Objectives To assess the relationship between membership of axSpA patient associations with regard to physical and psychological outcomes of the disease.
Methods A sample of 680 axSpA patients was interviewed as part of the Spanish-2017 Atlas, which aimed to promote early referral, improve healthcare, and the use of effective treatments in patients with axSpA. By means of an online survey, the following self-reported data were collected: sociodemographic, smoking habits, degree of functional limitation in 18 daily activities (graded from 0–3 as none, little, some, moderate), spinal stiffness level at cervical, thoracic, and lumbar spine (0–3 none, little, some, moderate), disease activity through BASDAI (0–10), risk of severe psychiatric illness using General Health Questionnaire – GHQ-12 (0–12), and treatment received (NSAIDs and biological therapy). Differences for all these variables between associated-patients and non-associated patients were tested, using Mann-Whitney or Chi-square tests.
Results Out of 680 patients, 301 (44.3%) were members of patient associations. Compared to non-associated patients, those associated were older, more frequently male, married, and few smoked (table 1). Additionally, despite having longer disease duration and receiving similar treatment, associated patients had lower disease activity (BASDAI 5.1 vs 5.8; p=0.001), less functional limitation (26.5 vs 28.7; p<0.05), and less risk of severe psychiatric illness (GHQ-12 4.9 vs 6.5; p<0.001).
Conclusions In axSpA, belonging to patient associations is related to better physical and psychological outcomes. Accordingly, rheumatologists should encourage patients to join these groups. However, further data on longitudinal studies is required to confirm these results.
Acknowledgements The Atlas was promoted by CEADE and funded by Novartis
Disclosure of Interest M. Garrido-Cumbrera: None declared, D. Gálvez-Ruiz: None declared, E. Collantes Estevez: None declared, C. Blanch Mur Employee of: Novartis, V. Navarro-Compán: None declared
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