Poor health and functioning in patients with axial spondyloarthritis during the COVID-19 pandemic and lockdown: REUMAVID study (phase 1).

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.

Understanding the Disease Burden of Unemployed Patients With Axial Spondyloarthritis: Results From the Spanish Atlas 2017.

OBJECTIVE: To evaluate differences in sociodemographic factors and patient-reported outcomes (PROs) between unemployed and employed patients with axial spondyloarthritis (axSpA), and to explore work-related issues (WRIs). METHODS: Data from an online survey of 680 unselected patients of the Atlas of Axial Spondyloarthritis in Spain 2017 were analyzed. Active workforce participants were divided into employed and unemployed groups according to International Labour Organization definitions. Sociodemographic characteristics, PROs (Bath Ankylosing Spondylitis Disease Activity Index [0-10], Spinal Stiffness Index [3-12], Functional Limitation Index [0-54], and psychological distress through the 12-item General Health Questionnaire [0-12]) were assessed. Logistic regression analysis was used to evaluate the association with unemployment status. RESULTS: Four hundred fifteen (63.6%) patients with axSpA were categorized in the active population, of which 325 (78.3%) were employed and 90 (21.7%) unemployed. Of the unemployed patients, 62.8% (n = 54) declared that their joblessness was due to axSpA. Of the employed patients, 170 (54.3%) reported WRIs in the year prior to the survey, the most frequent being difficulty fulfilling working hours (44.1%), missing work for doctor appointments (42.9%), and taking sick leave (37.1%). Being unemployed was associated with lower educational level (OR = 2.92), disease activity (OR = 1.37), spinal stiffness (OR = 1.21), functional limitation (OR = 1.05), worse mental health (OR = 1.15), anxiety (OR = 2.02), and depression (OR = 2.69) in the univariable models; and with lower educational level (OR = 2.76) and worse mental health (OR = 1.15) in the multivariable analysis. CONCLUSION: Results show significant differences between employed and unemployed patients with axSpA. Employed patients with axSpA endure many problems at work related to their condition, whereas unemployed patients present worse disease outcomes associated with greater psychological distress.

Assessment of impact of the COVID-19 pandemic from the perspective of patients with rheumatic and musculoskeletal diseases in Europe: results from the REUMAVID study (phase 1).

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.

Atlas of axial spondyloarthritis in Spain 2017: Study design and population / Atlas de Espondiloartritis Axial en España 2017: diseño del estudio y descripción de la muestra

Objective: Atlas of Axial Spondyloarthritis in Spain 2017 aims to better understand the reality of the patients suffering from this disease from an integrated approach. Methods: The Atlas 2017 based its results on an extensive cross-sectional patient survey conducted in Spain (2016), validated by a multidisciplinary group of experts on spondyloarthritis. Results: Data from 680 patients with axSpA were obtained, most of them suffered from AS, were HLA-B27 positive, older than 45 years, and live as part of a couple. A large percentage had university studies, were disabled and members of a patient association. Patients reported a diagnostic delay of 8.5 years, high disease activity (BASDAI 5.5±2.2), moderate-important stiffness (61.0%), medium-high functional limitation (74.9%), and psychological distress (GHQ 5.7±4.5). A total of 54.7% reported taking NSAIDs, 28.4% DMARDs, 36.3% biological therapy and 32.2% were not receiving pharmacological treatment. Conclusions: The Atlas survey data reveals still a long diagnostic delay, high disease activity, psychological distress, while an important proportion could be undertreated

Objetivo: El Atlas de Espondiloartritis Axial en España 2017 tiene como objetivo comprender mejor la realidad de los pacientes que padecen esta enfermedad desde un enfoque integrado. Métodos: El Atlas 2017 basó sus resultados en una amplia encuesta transversal de pacientes realizada en España (2016), validada por un grupo interdisciplinar de expertos en espondiloartritis. Resultados: Se obtuvieron datos de 680 pacientes con EspAax. La mayoría de ellos sufría EA, eran HLA-B27 positivo, mayores de 45 años y vivían en pareja. Un gran porcentaje tenía estudios universitarios, discapacidad reconocida y era miembro de una asociación de pacientes. Los pacientes declararon un retraso diagnóstico de 8,5 años, alta actividad de la enfermedad (BASDAI 5,5±2,2), rigidez moderada-importante (61,0%), limitación funcional moderada-alta (74,9%) y problemas psicológicos (GHQ 5,7±4,5). Un total del 54,7% declaró estar tomando AINE, el 28,4% FAME, el 36,3% terapia biológica, mientras que el 32,2% no recibía ningún tipo de tratamiento farmacológico. Conclusiones: Los datos de la encuesta Atlas revelan todavía un enorme retraso diagnóstico, alta actividad de la enfermedad, problemas psicológicos, mientras que una proporción importante de pacientes podrían estar infratratados

The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective-an Analysis of 2846 Patients Across 13 Countries.

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. 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.

Atlas of axial spondyloarthritis in Spain 2017: Study design and population.

OBJECTIVE: Atlas of Axial Spondyloarthritis in Spain 2017 aims to better understand the reality of the patients suffering from this disease from an integrated approach. METHODS: The Atlas 2017 based its results on an extensive cross-sectional patient survey conducted in Spain (2016), validated by a multidisciplinary group of experts on spondyloarthritis. RESULTS: Data from 680 patients with axSpA were obtained, most of them suffered from AS, were HLA-B27 positive, older than 45 years, and live as part of a couple. A large percentage had university studies, were disabled and members of a patient association. Patients reported a diagnostic delay of 8.5 years, high disease activity (BASDAI 5.5±2.2), moderate-important stiffness (61.0%), medium-high functional limitation (74.9%), and psychological distress (GHQ 5.7±4.5). A total of 54.7% reported taking NSAIDs, 28.4% DMARDs, 36.3% biological therapy and 32.2% were not receiving pharmacological treatment. CONCLUSIONS: The Atlas survey data reveals still a long diagnostic delay, high disease activity, psychological distress, while an important proportion could be undertreated.