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

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. Summary 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.

Axial spondyloarthritis 10 years on: still looking for the lost tribe

“…Despite advances in our understanding of axSpA and improved education initiatives for HCPs, a recent survey of 2846 patients across 13 countries reported that the mean diagnostic delay has remained in the region of ∼8 years [ 38 ]. While an additional UK study published in 2015 found a stable mean diagnostic delay of 8–9 years and a median delay of 5 years prior to and after the 2009 updated classification criteria [ 26 ].…”

Clinical, Economic, and Humanistic Burden Associated With Delayed Diagnosis of Axial Spondyloarthritis: A Systematic Review

“…However, there is often a substantial delay between symptom onset and axSpA diagnosis, with recent reports suggesting an average diagnostic delay of 5-14 years [6][7][8][9][10][11]. One factor contributing to the delay in diagnosis of axSpA is the difficulty in distinguishing inflammatory back pain (IBP), a key symptom of axSpA that affects the spine and sacroiliac joints [12,13], from other highly prevalent forms of low back pain in the general population-the overall global prevalence of low back pain is approximately 9% [14], and up to 80% of adults will experience low back pain in their lifetime [15,16].…”

Prevalence of ankylosing spondylitis in a Chinese population: a systematic review and meta-analysis

“…(1) The studies were published open epidemiological studies on AS in mainland China. (2) The study subjects were recruited by sampling methods or from a healthy population in a certain region, with clear and detailed sample numbers, numbers of cases or prevalence rates. Relevant data were extracted directly from the literature or calculated with original data.…”

“…(1) The studies were republications or duplicate studies. (2) The study data contained obvious errors or were incomplete or unclear and relevant data could not be obtained by contacting the authors. (3) The study sample sources were those who suffered from confirmed AS, had not been diagnosed but had a high possibility of AS, or had a family history of AS.…”

“…Ankylosing spondylitis is a common inflammatory rheumatic disease that affects the axial skeleton, causing characteristic inflammatory back pain and stiffness in the back and waist [1]. Axial spondyloarthritis (axSpA) consists of radiographic (traditionally known as AS) and nonradiographic (nr-axSpA) forms [2]. AS is a subtype of axSpA and presents typical radiographic manifestations.…”