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.
AimTo assess the impact of the COVID-19 pandemic on patients with rheumatic and musculoskeletal diseases (RMDs).MethodsREUMAVID is a cross-sectional study using an online survey developed by an international multidisciplinary patient-led collaboration across seven European countries targeting unselected patients with RMDs. Healthcare access, daily activities, disease activity and function, well-being (WHO Five Well-Being Index (WHO-5)), health status, anxiety/depression (Hospital Anxiety and Depression Scale (HADS)) and access to information were evaluated. Data were collected in April–July 2020 (first phase).ResultsData from the first phase included 1800 patients with 15 different RMDs (37.2% axial spondyloarthritis, 29.2% rheumatoid arthritis, 17.2% osteoarthritis and others). Mean age was 53, 80% female and 49% had undertaken university studies. During the beginning of the pandemic, 58.4% had their rheumatology appointment cancelled and 45.6% reported not having received any information relating to the possible impact of SARS-CoV-2 infection in their RMDs, with the main source being patient organisations (27.6%).Regarding habits, 24.6% increased smoking, 18.2% raised their alcohol consumption, and 45.6% were unable to continue exercising. Self-reported disease activity was high (5.3±2.7) and 75.6% reported elevated pain. Half the patients (49.0%) reported poor well-being (WHO-5) and 46.6% that their health had changed for the worse during lockdown. According to HADS, 57.3% were at risk of anxiety and 45.9% of depression.ConclusionThroughout the first wave of the COVID-19 pandemic, patients with RMDs have experienced disruption in access to healthcare services, poor lifestyle habits and negative effects on their overall health, well-being and mental health. Furthermore, information on COVID-19 has not reached patients appropriately.
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.
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.
Objective. To evaluate work-related issues (WRIs) and their determinants in patients with axial spondyloarthritis (SpA) across Europe.Methods. The European Map of Axial Spondyloarthritis is a cross-sectional online survey (2017-2018) of unselected patients with self-reported axial SpA from 13 European countries. Participants were classified as active or inactive members of the labor force according to the International Labor Organization standards. Those employed reported WRIs due to axial SpA in the past 12 months. Sociodemographic characteristics and patient-reported outcomes were compared between patients with and without WRIs. Stepwise regression analysis was conducted to identify independent determinants of WRIs.Results. The sample comprised 2,846 patients with axial SpA, 1,653 were active members of the labor force, 1,450 were employed, and of those employed, 67.7% reported at least 1 WRI. The most frequently reported WRIs were taking sick leave (56.3%), difficulty fulfilling working hours (44.6%), and missing work for doctor's appointments (34.6%). Of the total sample, 74.1% declared that they had faced or would face difficulties finding a job due to axial SpA. Patients with WRIs were more often female, were less likely to be married or in a relationship, and had a higher educational level, poorer patient-reported outcomes, and a greater prevalence of anxiety and depression. Multivariable regression showed that WRIs were associated with a higher Bath Ankylosing Spondylitis Disease Activity Index score (odds ratio [OR] 1.30 [95% confidence interval (95% CI) 1.16-1.45]) and the 12-item General Health Questionnaire score (OR 1.15 [95% CI 1.09-1.22]), and were negatively associated with inflammatory bowel disease (OR 0.58 [95% CI 0.36-0.91]).Conclusion. Approximately two-thirds of employed patients experienced WRIs due to axial SpA. Association between disease activity and psychological distress with WRIs suggests the need to ensure that axial SpA patients receive the required support to cope with their working life.
Background:Early diagnosis of Axial Spondyloarthritis (axSpA) is crucial for timely access to specialist care and effective treatment.Objectives:To assess the current diagnostic delay in axSpA and identify the parameters associated with increased diagnostic delay in a European sample.Methods:Data from unselected patients participating in the European Map of Axial Spondyloarthritis (EMAS) study through an online survey (2017- 2018) across 13 countries were analysed. Mean differences in diagnostic delay were analysed using Mann-Whitney and Kruskal-Wallis tests, among sociodemographic and disease-related factors. A multivariate linear regression analysis was carried out to identify the relative weight of the associated parameters in determining diagnostic delay.Results:2,846 patients participated in EMAS. Mean age was 43.9 years, 61.3% were female, 48.1% had a university degree, and 53.9% were employed. Of the 2846 participants, 2652 provided information for calculating diagnostic delay. Mean age at symptom onset was 26.6 ± 11.1, mean age at diagnosis was 33.7 ± 11.5, and mean diagnostic delay was 7.4 ± 8.4 (Fig. 1). The following variables were associated with longer diagnostic delay in the bivariate analysis: older age, female gender, being diagnosed by a rheumatologist (Table 1). In the multivariate regression analysis younger age at symptom onset, number of HCPs seen before were associated with diagnostic delay (Table 2).Table 1.Associations between sociodemographic and disease-related variables and diagnostic delay (N: 2,652)VariableDiagnostic Delay (years)Mean ± SDP-valueAge categories18-344.4 ± 5.5<0.00135-517.9 ± 8.252-689.5 ± 10.2>687.3 ± 9.7GenderMale6.1 ± 7.4<0.001Female8.2 ± 8.9Education levelNo school completed8.0 ± 10.70.397Primary school7.6 ± 8.9High school7.6 ± 8.4University7.3 ± 8.3OccupationManual worker6.7 ± 8.30.163Non-manual worker7.3 ± 8.4Diagnosed by rheumatologistYes7.9 ± 8.7<0.001No5.7 ± 7.3HLA-B27Positive8.3 ± 8.30.775Negative8.7 ± 9.0Uveitis (ever)Yes8.0 ± 8.30.098No7.6 ± 8.4IBD (ever)Yes7.7 ± 8.70.944No7.5 ± 8.5Table 2.Regression analysis between sociodemographic and clinical variables in relation to diagnostic delayVariableUnivariable linear regressionMultivariable stepwise linear regressionB95% CIB95% CIAge at symptoms onset-0.289-0.316, -0.262-0.321-0.390, -0.253Female gender2.0991.442, 2.755NANAEmployed, Manual worker-0.604-1.953, 0.746NANAEducational status, University-0.343-0.986, 0.299NANADiagnosed by rheumatologist, Yes2.1171.321, 2.913NANANumber of HCPs seen before diagnosis1.7231.486, 1.9601.2580.739, 1.776HLA-B27, Positive-0.471-1.347, 0.404NANAUveitis (ever), Yes0.463-0.392, 1.319NANAIBD (ever), Yes0.123-0.971, 1.217NANAFigure 1.Average years of diagnostic delay across EMAS countries (N: 2,652)Conclusion:In this large sample of axSpA patients from 13 different European countries, the average diagnostic delay was more than seven years. The fact that one of the most strongly associated parameters to diagnostic delay was number of HCPs seen before diagnosis suggests the need for urgent action to reduce incorrect referrals to shorten the patient journey to diagnosis across Europe.Acknowledgments:Funded by Novartis Pharma AGDisclosure of Interests:Marco Garrido-Cumbrera: None declared, Victoria Navarro-Compán Consultant of: Abbvie, Lilly, Novartis, Pfizer, UCB, Speakers bureau: AbbVie, MSD, Lilly, Novartis, Pfizer, UCB, Christine Bundy Grant/research support from: Has received unrelated honoraria from Abbvie, Celgene, Janssen, Lilly, Novartis, and Pfizer., Raj Mahapatra: None declared, Souzi Makri: None declared, José Correa-Fernández: None declared, Laura Christen: None declared, Carlos Jesús Delgado-Domínguez: None declared, Denis Poddubnyy Grant/research support from: AbbVie, MSD, Novartis, and Pfizer, Consultant of: AbbVie, Bristol-Myers Squibb, Eli Lilly, MSD, Novartis, Pfizer, Roche, UCB, Speakers bureau: AbbVie, Bristol-Myers Squibb, Eli Lilly, MSD, Novartis, Pfizer, Roche, UCB
Aim: To evaluate the overall health and functioning in patients with axial spondyloarthritis (axSpA) and related factors affecting these during the COVID-19 pandemic and lockdown measures. Methods: Data from 587 axSpA patients participating in the first phase (April–July 2020) of the REUMAVID study who completed the ASAS Health Index (ASAS-HI) were analysed. REUMAVID is a cross-sectional study that collects data through an online survey to assess the impact of the COVID-19 pandemic on patients with rheumatic and musculoskeletal diseases across seven European countries. Poor health was defined as ASAS-HI ⩾ 12. The World Health Organization Five well-being index, self-perceived health status and change in health status during COVID-19 pandemic were evaluated as secondary outcomes. Logistic regression models were used to identify the factors associated with poor health. Results: According to the ASAS-HI, 147 (25.0%) patients reported poor health. Pain and moving around were the main affected categories. In addition, 14.0% reported their self-perceived health status as ‘bad’ or ‘very bad’ and 46.8% as worse than before the pandemic. In the multivariate analysis, smoking (OR = 1.98), diabetes (OR = 4.89) and taking painkillers (OR = 2.82) or corticosteroids use (OR = 2.20) were significantly associated with poor health, while engaging in physical activity (OR = 0.54) and being actively employed (OR = 0.48) were inversely associated with this. Conclusions: During the first wave of the COVID-19 pandemic, one in four axSpA patients reported poor health and functioning, while the self-perceived health status of almost half of these patients worsened. Nonsmoking, physical activity and being employed were associated with better outcomes.
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