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To identify the parameters associated with self-reported diagnostic delay (DD) in axial spondyloarthritis (axSpA) patients across Europe

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

Aim: To compare the burden of disease in Spanish patients with axial spondyloarthritis (axSpA) vs other European countries (OEC). Methods: Data from 2846 unselected patients from the European Map of Axial Spondyloarthritis (EMAS) and the Atlas of Axial Spondyloarthritis in Spain (Atlas) were collected through online surveys. Comparative analysis was carried out between Spanish patients (2016) and patients from 12 OEC ( 2017-2018). Socio-demographic characteristics, life habits, and patient-reported outcomes (Bath Ankylosing Spondylitis Disease Activity Index 0-10, spinal stiffness 3-12, functional limitation 0-54, the 12-Item General Health Questionnaire [GHQ-12] for psychological distress 0-12) were compared. Chi-square and Mann-Whitney tests were used for qualitative and quantitative variables respectively. Results: 680 (23.9%) Spanish axSpA patients were compared to 2166 axSpA patients (76.1%) from OEC. Compared to Spain, the OEC group had a higher percentage of females (64.1% vs 52.5%; P < .001) and university-educated participants (51.7% vs 36.9%; P < .001). Spanish patients showed a greater diagnostic delay (8.5 ± 7.7 vs 7.2 ± 8.6 years; P < .001), visits to orthopedic specialists before diagnosis (56.9% vs 25.3%; P < .001), human leukocyte antigen-B27 carriership (77.1% vs 70.1%; P = .003), disease activity (5.7 ± 2.0 vs 5.4 ± 2.0; P = .024), and higher unemployment rates (21.7% vs 9.2%; P < .001). Despite lower rates of diagnosed anxiety and depression, Spanish patients were at higher risk of psychological distress according to the GHQ-12 (5.7 ± 4.5 vs 4.8 ± 4.0; P < .001). Conclusion: Compared to European axSpA patients, Spanish patients experience a longer diagnostic delay and greater psychological distress. Being wrongly referred to orthopedic specialists and facing a more precarious labor scenario appear as possible causal factors, highlighting the need to increase the number of rheumatologists, the training of healthcare professionals, and improving axS

Aim To assess the impact of the COVID-19 pandemic on patients with rheumatic and musculoskeletal diseases (RMDs). Methods REUMAVID 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). Results Data 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. Conclusion Throughout 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), aswell 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.

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]).

Objectives. The aim was to compare the impact of the first wave of the coronavirus disease 2019 (COVID-19) pandemic and lockdown measures on patients with rheumatic and musculoskeletal diseases (RMDs) in the UK and other European countries (OEC). Methods. REUMAVID was an online cross-sectional survey of seven European countries. The data collected included the following: demographics, lifestyle, employment, access to health-care services, disease-specific characteristics, the World Health Organization five well-being index (WHO-5), hospital anxiety and depression scale (HADS), visual analogue scale (VAS) disease activity, and the perceived acceptable symptom scale. Results. One thousand eight hundred responses were received between April and July 2020 [UK, n ¼ 558 (31.0%); OEC, n ¼ 1242 (69.0%)]. UK patients were more likely to be older [mean (S.D.): UK 58.5 (13.4) years; OEC 50.0 (12.2) years], university educated [UK n ¼ 302 (54.1%); OEC n ¼ 572 (46.1%), quit smoking [UK n ¼ 92 (59.4%); OEC n ¼ 65 (16.2%)] and continue exercise [UK, n ¼ 216 (49.2%); OEC, n ¼ 228 (33.1%)], although, conversely, alcohol consumption increased [UK n ¼ 99 (36.3%); OEC n ¼ 98 (12.1%)]. UK patients felt informed about COVID-19 (UK 72.7%, OEC 57.4%) and kept their planned rheumatology [UK n ¼ 87 (51.2%); OEC n ¼ 213 (38.6%)] and/or general practice appointments [UK n ¼ 87 (76.3%); OEC n ¼ 310 (53.9%)]. Almost half the patients with RMDs reported a decline in health and well-being, although this was less common in UK patients [UK n ¼ 214 (38.4%), OEC n ¼ 618 (50.2%)], who reported better perceived acceptable symptom scale, VAS pain and HADS scores, but worse WHO-5 scores. Conclusions. UK RMD patients performed better in the physical and mental health domains tested, possibly owing to a less restrictive lockdown and better health-care access. These findings have implications for health-care services globally in planning patient care after the COVID-19 pandemic.

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.

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.