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.

Introduction/objectives To evaluate the journey to diagnosis, disease characteristics and burden of disease in male and female patients with axial spondyloarthritis (axSpA) across Europe. Method Data from 2846 unselected patients participating in the European Map of Axial Spondyloarthritis (EMAS) study through an online survey (2017–2018) across 13 countries were analysed. Sociodemographic characteristics, lifestyle, diagnosis, disease characteristics and patient-reported outcomes (PROs) [disease activity –BASDAI (0–10), spinal stiffness (3–12), functional limitations (0–54) and psychological distress (GHQ-12)] were compared between males and females using chi-square (for categorical variables) and student t (for continuous variables) tests. Results In total, 1100 (38.7%) males and 1746 (61.3%) females participated in the EMAS. Compared with males, females reported considerable longer diagnostic delay (6.1 ± 7.4 vs 8.2 ± 8.9 years; p < 0.001), higher number of visits to physiotherapists (34.5% vs 49.5%; p < 0.001) and to osteopaths (13.3% vs 24.4%; p < 0.001) before being diagnosed and lower frequency of HLA-B27 carriership (80.2% vs 66.7%; p < 0.001). In addition, females reported higher degree of disease activity in all BASDAI aspects and greater psychological distress through GHQ-12 (4.4 ± 4.2 vs 5.3 ± 4.1; p < 0.001), as well as a greater use of alternative therapies. Conclusion The patient journey to diagnosis of axSpA is much longer and arduous in females, which may be related to physician bias and lower frequency of HLA-B27 carriership. Regarding PROs, females experience higher disease activity and poorer psychological health compared with males. These results reflect specific unmet needs in females with axSpA needing particular attention. Key Points• Healthcare professionals’ perception of axSpA as a predominantly male disease may introduce some bias during the diagnosis and management of the disease. However, evidence about male-female differences in axSpA is scarce.• EMAS results highlight how female axSpA patients report longer diagnostic delay and higher burden of the disease in a large sample of 2846 participants of 13 European countries.• Results reflect unmet needs of European female patients. Healthcare professionals should pay close attention in order to accurately diagnose and efficiently manage axSpA cases while further research should be developed on the cause of reported gender differences.

Objective To identify the parameters associated with self-reported diagnostic delay (DD) in axial spondyloarthritis (axSpA) patients across Europe. Methods Data from 2652 patients from 13 countries who participated in the European Map of Axial Spondyloarthritis (EMAS) were collected through an online survey (2017–2018). DD was calculated as the difference between age at diagnosis and age at symptom onset reported by participants. Associations between DD and sociodemographic characteristics, as well as disease-related factors were explored through univariable and multivariable linear regression analysis. Results Average DD was 7.4  (8.4) years with a variation between countries. The variables associated with longer DD in the final multivariable regression model were: younger age at symptom onset (b = −0.26; 95% CI: −0.28, −0.23), female gender (b = 1.34; 95% CI: 0.73, 1.96) and higher number of health-care professionals (HCPs) seen before diagnosis (b = 1.19; 95% CI: 0.95, 1.43). There was a significant interaction between the female gender and the number of HCPs seen before diagnosis. A substantial variation of the DD across European countries was observed. Conclusion In this sample of axSpA patients, average DD was greater than 7 years. Younger age at symptom onset, female gender, higher number of HCPs seen before diagnosis, and being diagnosed by rheumatologist were the parameters associated with a longer DD in axSpA. These findings indicate a need for continuing efforts dedicated to recognition of patients with a high probability of axSpA on the level of non-rheumatology specialists and facilitating referral to a rheumatologist for timely diagnosis.

Objective.To assess the risk of mental disorders in patients with axial spondyloarthritis (axSpA) and to examine the factors associated with this.Methods.In 2016, a sample of 680 patients with axSpA were interviewed as part of the development process for the Atlas of Axial Spondyloarthritis in Spain. The risk of mental disorders in these patients was assessed using the 12-item General Health Questionnaire scale. Additionally, the variables associated with the risk of mental disorders were investigated, including sociodemographic characteristics (age, sex, relationship, patient association membership, job status, and educational level), disease status (Bath Ankylosing Spondylitis Disease Activity Index, spinal stiffness, and functional limitation), and previous diagnosis of mental disorders (depression and anxiety). Bivariate correlation analyses were performed, followed by multiple hierarchical and stepwise regression analysis.Results.A total of 45.6% patients were at risk of mental disorders. All variables except educational level and thoracic stiffness significantly correlated with risk of mental disorders. Nevertheless, disease activity, functional limitation, and age showed the highest coefficient (r = 0.543, p ≤ 0.001; r = 0.378, p ≤ 0.001; r = −0.174, p ≤ 0.001, respectively). In the stepwise regression analysis, 4 variables (disease activity, functional limitation, patient association membership, and cervical stiffness) explained the majority of the variance for the risk of mental disorders. Disease activity displayed the highest explanatory degree (R2 = 0.875, p < 0.001).Conclusion.In patients with axSpA, the prevalence of risk of mental disorders is high. Combined with a certain sociodemographic profile, high disease activity is a good indicator of the risk for mental disorders.

ObjectiveTo determine the presence of mental disorder risk and associated factors in European patients with axial spondyloarthritis (axSpA).MethodsData from 2,166 patients with axSpA in 12 European countries were collected from 2017 to 2018 through the European Map of Axial Spondyloarthritis online survey. Risk of mental disorders was assessed using the 12-item General Health Questionnaire. Possible predictors included age, gender, relationship status, patient organisation membership, job status, educational level, Bath Ankylosing Spondylitis Disease Activity Index (BASDAI), functional limitation (0–54) and self-reported depression or anxiety. Bivariate analyses were conducted to determine predictors of risk of mental disorders (Mann-Whitney and χ2) and multivariable analysis identified factors associated with risk of mental disorders.Results60.7% of patients reported risk of mental disorders: they were younger (41.7 vs 46.0 years), more likely female (68.2% vs 57.9%), unemployed (7.5% vs 2.7%), on temporary (15.9% vs 5.4%) or permanent sick leave (13.2% vs 8.0%), reported depression (45.2% vs 14.2%) or anxiety (41.3% vs 12.5%), higher disease activity (BASDAI ≥4; 87.6% vs 62.3%) and functional limitation (16.5 vs 10.8). The factors most associated with risk of mental disorders were disease activity (OR=2.80), reported depression (OR=2.42), anxiety (OR=2.39), being unemployed or on sick leave (OR=1.98), functional limitation (OR=1.02) and younger age (OR=0.97).ConclusionsCompared with the general population, patients with axSpA show disproportionately worse mental health associated mainly with disease activity and employment status. Healthcare professionals should pay close attention to patients with high disease activity and address internally or refer to specialist services, where appropriate to ensure optimal patient outcomes.