Gender differences in patient journey to diagnosis and disease outcomes: results from the European Map of Axial Spondyloarthritis (EMAS)

Abstract

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.

Keywords: Axial spondyloarthritis; Europe; Gender; Patient journey; Patient-reported outcomes.

Fig. 1

EMAS sample recruitment flowchart stratified by gender. This figure represents the sample selection flow chart for this study. A total of 1462 patients were recruited through national patient organizations, of which 426 were male and 1036 female. An additional 704 were recruited through Ipsos (known as Gfk at the moment of the survey) online panel, of which 351 were male and 353 females. Total European sample was composed of 2166 individuals (777 males and 1389 females). To that number, the database of the Atlas of Axial Spondyloarthritis in Spain was retrospectively added, composed of 680 individuals (323 males and 357 females). Total EMAS sample was composed of 2846 participants (1100 males and 1746 females). PAGs Patient Advocacy Groups, EMAS European Map of Axial Spondyloarthritis

Fig. 2

European sample distribution of patients for each EMAS country stratified by gender (N = 2846). The depicted European map represents the contribution of each EMAS participating country to the total sample size of 2846 participants. France provided one of the largest proportions (22.4%), followed by Spain (23.9%), Norway (17.9%), and the Russian Federation (8.2%). Italy provides 4.7%, the Netherlands 3.8%, Austria and Slovenia 2.9%, Switzerland 2.8%, Belgium and Germany 2.7%, the UK 2.6% and Sweden 2.5%. Gender distribution, as shown in the individual pie charts, is similar among countries with the exception of France, Norway, and Sweden (with a majority of female participants). The proportion of males was only slightly larger among the Swiss and German samples. Percentages represent each country’s contribution to the total sample. Pie charts represent the gender distribution of each country.