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

Abstract

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).

Summary

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.

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Acknowledgments

The Atlas was promoted by the Spanish Federation of Spondyloarthritis Associations (CEADE) and developed by the Health & Territory Research (HTR) team of the University of Seville, with support from the Spanish Society of Rheumatology (SER). The authors would like to thank the Spanish Society of Rheumatology (SER) for assistance in editing this manuscript.

Funding

Atlas of Axial Spondyloarthritis in Spain 2017 was funded by Novartis Spain.

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Correspondence to Marco Garrido-Cumbrera.

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Conflict of Interest

Dr. Victoria Navarro-Compán has received unrelated honoraria or research grants from Abbvie, BMS, Lilly, MSD, Novartis, Pfizer, Roche, and UCB. Dr. Jordi Gratacós has received unrelated honoraria or research grants from Abbvie, BMS, Lilly, MSD, Novartis, Pfizer, Roche, and UCB. Dr. Eduardo Collantes has received unrelated honoraria or research grants from Abbvie, BMS, Lilly, MSD, Novartis, Pfizer, Roche, and UCB. Other authors declare that they have no conflicts of interest.

Human and Animal Rights and Informed Consent

All patients agreed to their participation through informed consent. In this study, no clinical trial was conducted. As it was not an interventional study, no ethics committee approval was required.

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Garrido-Cumbrera, M., Chacón-García, J., Navarro-Compán, V. et al. Does Belonging to a Patient Association Is of Help for Patients with Axial Spondyloarthritis? Results from the Atlas Survey. Curr Rheumatol Rep 22, 22 (2020). https://doi.org/10.1007/s11926-020-00897-5

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Keywords

  • Axial spondyloarthritis
  • Ankylosing spondylitis
  • Patient association
  • Patient-reported outcomes
  • Non-pharmacological treatments