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. 2024 Jun 8;10(2):e003504.
doi: 10.1136/rmdopen-2023-003504.

International Map of Axial Spondyloarthritis (IMAS): results from the perspective of 5557 patients from 27 countries around the globe

Marco Garrido-Cumbrera  1   2 , Denis Poddubnyy  3   4 , Fernando Sommerfleck  5 , Christine Bundy  6 , Souzi Makri  7 , José Correa-Fernández  8 , Shashank Akerkar  9 , Jo Lowe  10 , Elie Karam  11 , Laura Christen  12 , Victoria Navarro-Compan  13
Affiliations

International Map of Axial Spondyloarthritis (IMAS): results from the perspective of 5557 patients from 27 countries around the globe

Marco Garrido-Cumbrera et al. RMD Open. .

Abstract

Background: The International Map of Axial Spondyloarthritis (IMAS) is a global initiative aimed to assess the impact and burden of axial spondyloarthritis (axSpA) and identify the unmet needs from the patient's perspective.

Method: IMAS is a collaboration between the Axial Spondyloarthritis International Federation (ASIF), the University of Seville, Novartis Pharma AG and steered by a scientific committee. IMAS collected information through an online cross-sectional survey (2017-2022) from unselected patients with axSpA from Europe, Asia, North America, Latin America and Africa who completed a comprehensive questionnaire containing over 120 items.

Results: 5557 patients with axSpA participated in IMAS. Mean age was 43.9 ±12.8 years, 55.4% were female, 46.2% had a university education and 51.0% were employed. The mean diagnostic delay was 7.4 ±9.0 years (median: 4.0), and the mean symptom duration was 17.1 ±13.3 years. 75.0% of patients had active disease (Bath Ankylosing Spondylitis Disease Activity Index ≥4), and 59.4% reported poor mental health (12-item General Health Questionnaire ≥3). In the year before the survey, patients had visited primary care physicians 4.6 times and the rheumatologist 3.6 times. 78.6% had taken non-steroidal anti-inflammatory drug ever, 48.8% biological disease-modifying antirheumatic drugs and 43.6% conventional synthetic disease-modifying antirheumatic drugs. Patients's greatest fear was disease progression (55.9%), while the greatest hope was to be able to relieve pain (54.2%).

Conclusions: IMAS shows the global profile of patients with axSpA, highlighting unmet needs, lengthy delays in diagnosis and high burden of disease in patients with axSpA worldwide. This global information will enable more detailed investigations to obtain evidence on the critical issues that matter to patients around the world to improve their care and quality of life.

Keywords: Patient Reported Outcome Measures; Patient perspective; Spondylitis, Ankylosing.

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Conflict of interest statement

Competing interests: Marco Garrido-Cumbrera grant/research support from: Novartis, Denis Poddubnyy Speakers bureau: AbbVie, BMS, Celgene, Janssen, Lilly, MSD, Novartis, Pfizer, Roche and UCB, 13 grant/research support from: AbbVie, MSD, Novartis, and Pfizer, Fernando Sommerfleck Speakers bureau: Abbvie, Eli Lilly, Janssen, Novartis, consultant of: Abbvie, Novartis, Janssen, Christine Bundy Speakers bureau: AbbVie, Celgene, Janssen, Lilly, Novartis and Pfizer, Souzi Makri Consultant of: Novartis, GSK and Bayer, José Correa-Fernández: none declared, Shashank Akerkar Speakers bureau: Pfizer, Novartis, Eli Lilly, Jansen, Jo Lowe Grant/research support from: no personal funding, but ASIF has received funding from Novartis, UCB, Lilly, Abbvie, Boehringer Ingleheim, Pfizer, Janssen, Elie Karam: none declared, Laura Christen Employee of: Novartis employment and stock ownership, Victoria Navarro-Compán Speakers bureau: AbbVie, Eli Lilly, Janssen, MSD, Novartis, Pfizer, UCB Pharma, consultant of: AbbVie, Eli Lilly, Galapagos, MoonLake, MSD, Novartis, Pfizer, UCB Pharma, grant/research support from: AbbVie, Novartis.

Figures

Figure 1
Figure 1
International Map of Axial Spondyloarthritis sample recruitment flow chart.
Figure 2
Figure 2
Distribution of International Map of Axial Spondyloarthritis patients by region (n=5557).
See this image and copyright information in PMC

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