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Review
. 2019 Mar 12;21(5):19.
doi: 10.1007/s11926-019-0819-8.

The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective-an Analysis of 2846 Patients Across 13 Countries

Marco Garrido-Cumbrera  1   2   3 , Denis Poddubnyy  4   5 , Laure Gossec  6   7 , David Gálvez-Ruiz  8   9 , Christine Bundy  10 , Raj Mahapatra  11 , Souzi Makri  12 , Laura Christen  13 , Carlos J Delgado-Domínguez  9 , Sergio Sanz-Gómez  8   9 , Pedro Plazuelo-Ramos  14 , Victoria Navarro-Compán  15 ; EMAS Working Group
Affiliations
Review

The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective-an Analysis of 2846 Patients Across 13 Countries

Marco Garrido-Cumbrera et al. Curr Rheumatol Rep. .

Abstract

Purpose of review: Scientific research in axial spondyloarthritis (axSpA) has grown significantly. Nevertheless, the patient perspective remains insufficiently explored. Using a cross-sectional survey, the European Map of Axial Spondyloarthritis (EMAS) describes how patients living with self-reported axSpA experience their disease physically, psychologically, and socially.

Recent findings: 2846 patients participated: mean age 43.9 ± 12.3 years, 61.3% female, mean disease duration was 17.2 ± 12.4 years, and 71.3% were HLA-B27 positive. Mean diagnostic delay was 7.4 ± 8.4 years. Mean BASDAI score was 5.5 ± 2.0 and 75.7% reported moderate/severe spinal stiffness throughout the day. Daily life was substantially impaired: 74.1% reported difficulties finding a job due to the disease, and 61.5% reported psychological distress. EMAS results showed long diagnostic delay and substantial physical and psychological burden, indicating important unmet needs for patients. Furthermore, axSpA restricted patients' ability to participate in their daily routine and lead a productive work life. Understanding the patient's perspective can improve both health outcomes and shared decision-making between patient and rheumatologist.

Keywords: Ankylosing spondylitis; Axial spondyloarthritis; Burden of the disease; Europe; Non-radiographic axial spondyloarthritis; Patient’s perspective; Shared decision-making.

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Conflict of interest statement

Conflict of Interest

EMAS was funded by Novartis Pharma AG. All authors have received honoraria for participating in EMAS from Novartis Pharma AG.

Dr. Denis Poddubnyy has received unrelated research grants from Abbvie, MSD, Novartis, and Pfizer, and unrelated honoraria from Abbvie, BMS, Celgene, Janssen, Lilly, MSD, Novartis, Pfizer, Roche, and UCB.

Dr. Laure Gossec has received unrelated research grants from BMS, Lilly, and Pfizer and unrelated honoraria from Abbvie, BMS, Celgene, Janssen, Lilly, Novartis, MSD, Pfizer, and UCB.

Dr. Christine Bundy has received unrelated honoraria from Abbvie, Celgene, Janssen, Lilly, Novartis, and Pfizer.

Dr. Victoria Navarro-Compán has received unrelated honoraria or research grants from Abbvie, BMS, Lilly, MSD, Novartis, Pfizer, Roche, and UCB.

Human and Animal Rights and Informed Consent

This article does not contain any studies with animal subjects. All participants were asked to provide explicit opt-in consent prior to participating in the EMAS survey. Participant data was anonymized.

Figures

Fig. 1
Fig. 1
Distribution of EMAS survey participants by European country
See this image and copyright information in PMC

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