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.

Sex-associated and gender-associated differences in the diagnosis and management of axial spondyloarthritis: addressing the unmet needs of female patients

“…In addition, women reported a higher degree of disease activity, greater psychological distress through general health questionnaire-12 items (4.4 ± 4.2 vs 5.3 ± 4.1; p<0.001) as well as a greater use of alternative therapies. 9 Although underdiagnosis of female patients with axSpA is common, the imaging workout can actually lead to overdiagnosis. Due to the moderate diagnostic utility of magnetic resonance imaging (MRI) lesions, the discrimination between bone marrow oedema due to early axSpA and non-SpA lesions can be challenging.…”

“…In addition, women reported a higher degree of disease activity, greater psychological distress through general health questionnaire-12 items (4.4 ± 4.2 vs 5.3 ± 4.1; p<0.001) as well as a greater use of alternative therapies. 9 …”

Genetics, Epigenetics, and Gender Impact in Axial-Spondyloarthritis Susceptibility: An Update on Genetic Polymorphisms and Their Sex Related Associations

“…The current interest in Precision Medicine, in order to identify preventive and therapeutic interventions, is increasing in the management of SpA patients. Clinical effect of biological DMARDs (bDMARDs) is now known to be affected by gender, as well as the clinical, genetic, and psychosocial life-style context ( Garrido-Cumbrera et al, 2021 ). This different efficacy in women and men is due to biological differences which may be caused by sex-specific gene expression likely triggered by gene-specific epigenetic modifications.…”

Ankylosing spondylitis: diagnostic challenges and efficacy of upadacitinib

“…У женщин АС диагностируют еще позднее, чем у мужчин, так как многие врачи ошибочно считают, что это заболевание развивается исключительно у лиц мужского пола. В крупном европейском исследовании, в которое были включены более 2800 пациентов с аксиальным СпА, средний срок до установления диагноза составил 8,2±8,9 лет у женщин и 6,1±7,4 лет у мужчин (p<0,001) [5]. Хотя мужчины на самом деле заболевают АС в несколько раз чаще, чем женщины, тем не менее, доля последних в нескольких когортах пациентов с АС варьировалась от 19,4% до 36,0% [3].…”