Can Belonging to an AxSpA Patient Organization Be Associated with Benefits to Its Members? Results from the European Map of Axial Spondyloarthritis (EMAS)

Marco Garrido-Cumbrera¹, Souzi Makri², Denis Poddubnyy³, Christine Bundy⁴, Laura Christen⁵, Sergio Sanz-Gomez⁶, José Correa-Fernández⁶, Raj Mahapatra⁷, Carlos Jesús Delgado-Domínguez⁶ and Victoria Navarro-Compán⁸, ¹Health & Territory Research (HTR), University of Seville, Sevilla, Spain, ²Cyprus League Against Rheumatism (CYPLAR), Limassol, Cyprus, ³Department of Rheumatology, Charité – Universitätsmedizin, Berlin, Germany, ⁴Cardiff University, Cardiff, Wales, United Kingdom, ⁵Novartis Pharma AG, Basel, Switzerland, ⁶Health & Territory Research (HTR), Universidad de Sevilla, Seville, Spain, ⁷Axial Spondyloarthritis International Federation (ASIF), London, United Kingdom, ⁸Rheumatology service, Hospital Universitario La Paz-IdiPaz, Madrid, Spain

Meeting: ACR Convergence 2021

Keywords: Ankylosing spondylitis (AS), education, patient, Patient reported outcomes, physical activity, spondyloarthritis

Session Information

Date: Saturday, November 6, 2021

Session Title: Spondyloarthritis Including PsA – Diagnosis, Manifestations, & Outcomes Poster I: Clinical Aspects of Axial Spondyloarthritis (0357–0386)

Session Type: Poster Session A

Session Time: 8:30AM-10:30AM

Background/Purpose: Patient organizations (POs) provide education and support services aimed to improve the quality of life of axSpA patients. This analysis aims to identify factors associated with PO membership among European axSpA patients.

Methods: Data from 2,846 unselected patients participating in EMAS, an online survey (2017-2018) across 13 European countries, were collected. Membership of patient organizations was assessed by the following item: “Are you a member of any Spondylitis Support Group or Association? (Yes/No)”. Differences in sociodemographics, patient-reported outcomes [BASDAI (0-10), spinal stiffness (3-12), and mental health through GHQ-12 (0-12)], employment, lifestyle habits, comorbidities, and treatments between PO members/non-members were assessed through Mann-Whitney and Pearson’s χ² tests. Univariable and multivariable binary logistic regression were used to identify variables possibly explaining PO membership.

Results: 1,654 patients were included. Mean age was 43.0 (±12.3) years, 59.6% were female, 46.8% had a university degree, and 66.5% were married. 1,107 patients (38.9%) were members of a PO. Compared to non-members, members were more frequently male (41.5% vs 36.9%, p=0.014), married (73.3% vs 64.5%, p< 0.001), more overweight/obese (55.6% vs 50.0%, p=0.003), physically active (86.4% vs 78.9%, p< 0.001), had relatives affected by axSpA (48.1% vs 33.1%), longer disease duration (21.0 vs 14.8 years, p< 0.001), better mental health (4.7 vs 5.1, p=0.036), longer diagnostic delay (8.6 vs 6.7, p< 0.001), and were more likely to have ever taken biologics (49.1% vs 37.0%, p< 0.001). In the multivariable logistic regression analysis, the variables associated with PO membership were having ever taken biologics (OR= 1.87), being physically active (OR= 1.43), having relatives affected by axSpA (OR= 1.34), and disease duration (OR= 1.03).

Conclusion: PO members were more likely to have advanced disease, as suggested by the disease duration. Greater experience with biologics among PO members could be attributed to higher disease severity but also to having access to lay-level information on treatment options. Notably, members were also more likely to engage in physical activity, a complementary treatment strongly promoted by POs and recommended by ASAS/EULAR. Engaging patients earlier and throughout their disease journey is likely to improve long-term health and quality of life.

Table 1. Bivariate analysis between members and non-members of POs (N= 2,846 unless specified)

Table 2. Logistic regression analysis for variables associated with PO membership (N=1,654)

Disclosures: M. Garrido-Cumbrera, None; S. Makri, None; D. Poddubnyy, AbbVie, 2, 5, 6, Eli Lilly and Company, 2, 5, 6, MSD, 2, 5, 6, Novartis, 2, 5, 6, Pfizer, 2, 5, 6, UCB, 2, 6, BMS, 2, 6, Roche, 2, 6; C. Bundy, Abbvie, 2, Celgene, 2, Janssen, 2, Lilly, 2, Novartis, 2, Pfizer, 2; L. Christen, Novartis, 3; S. Sanz-Gomez, None; J. Correa-Fernández, None; R. Mahapatra, None; C. Delgado-Domínguez, None; V. Navarro-Compán, Abbvie, 5, Lilly, 5, Novartis, 5, Pfizer, 5, UCB, 5, Janssen, 5.

To cite this abstract in AMA style:

Garrido-Cumbrera M, Makri S, Poddubnyy D, Bundy C, Christen L, Sanz-Gomez S, Correa-Fernández J, Mahapatra R, Delgado-Domínguez C, Navarro-Compán V. Can Belonging to an AxSpA Patient Organization Be Associated with Benefits to Its Members? Results from the European Map of Axial Spondyloarthritis (EMAS) [abstract]. Arthritis Rheumatol. 2021; 73 (suppl 9). https://acrabstracts.org/abstract/can-belonging-to-an-axspa-patient-organization-be-associated-with-benefits-to-its-members-results-from-the-european-map-of-axial-spondyloarthritis-emas/. Accessed January 30, 2023.

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