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.

A Benchmarking Study Evaluating Axial Spondyloarthritis Burden in Spain and Other European Countries. Results from the Spanish Atlas and the European Map of Axial Spondyloarthritis (EMAS) Studies.

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 axSpA patients' working conditions.

Social economic costs of ankylosing spondylitis in Spain.

OBJECTIVES: Ankylosing spondylitis (AS) is a disease associated with a high number of comorbidities, chronic pain, functional disability, and resource consumption. The aim of this study was to estimate the burden of AS in Spain. METHODS: A questionnaire, designed for the development of the "Atlas of Axial Spondyloarthritis in Spain 2017" cross-sectional study, was distributed to patients in 2016. This questionnaire was used to collect relevant sociodemographic and clinical information on patients with AS, as well as to identify resource consumption and patient work productivity losses related to AS within the previous 12 months of survey completion. Subsequently, direct costs were estimated with the bottom-up method and work productivity losses with the human capital method. Economic burden was estimated by subgroups, taking into account the degree of disease activity and the psychological status. RESULTS: The study sample comprised 578 patients with AS: mean age was 46.0±11.0 years, 52.9% were males, and 35.8% had a university-level education. Mean disease duration and diagnostic delay were 13.4±11.3 and 8.4±7.6 years, respectively, and mean Bath Ankylosing Spondylitis Disease Activity Index was 5.4±2.1. The estimated median annual cost per patient with AS was 5,402.4, with an average annual cost per patient of 11,462.3 euros, of which 61.1% (6,999.8 euros) were attributed to direct health care costs, 5.3% (611.3 euros) to direct non-health care costs, and 33.6% (3,851.2 euros) to work productivity losses. CONCLUSIONS: AS poses a significant burden for the Spanish National Health System and society.

Assessment of SpondyloArthritis International Society (ASAS) Consensus on Spanish Nomenclature for Spondyloarthritis. / Consenso ASAS en nomenclatura en español para las espondiloartritis.

OBJECTIVE: To develop a consensus to standardize the use of Spanish terms, abbreviations and acronyms in the field of spondyloarthritis (SpA). METHODS: An international task force comprising all native Spanish-speaking Assessment of SpondyloArthritis International Society (ASAS) members, the executive committee of Grupo para el estudio de la Espondiloartritis de la Sociedad Española de Reumatología (GRESSER), two methodologists, two linguists from the Real Academia Nacional de Medicina de España (RANM) and two patients from the Spanish Coordinator of Spondylitis Associations (CEADE) was established. A literature review was performed to identify the conflicting terms/abbreviations/acronyms in SpA. This review examined written sources in Spanish including manuscripts, ICF and ICD, guidelines, recommendations and consensuses. This was followed by a nominal group meeting and a three-round Delphi. The recommendations from the RANM based on the Panhispanic dictionary were followed throughout the process. RESULTS: Consensus was reached for 46 terms, abbreviations or acronyms related to the field of SpA. A Spanish translation was accepted for 6 terms and 6 abbreviations to name or classify the disease, and for 6 terms and 4 abbreviations related to SpA. It was agreed not to translate 15 acronyms into Spanish. However, when mentioning them, it was recommended to follow this structure: type of acronym in Spanish and acronym and expanded form in English. With regard to 7 terms or abbreviations attached to acronyms, it was agreed to translate only the expanded form and a translation was also selected for each of them. CONCLUSIONS: Through this standardization, it is expected to establish a common use of the Spanish nomenclature for SpA. The implementation of this consensus across the community will be of substantial benefit, avoiding misunderstandings and time-consuming processes.

Ultrasound Assessment of Psoriatic Onychopathy: A Cross-sectional Study Comparing Psoriatic Onychopathy with Onychomycosis.

This cross-sectional study evaluated the usefulness of an ultrasound technique in assessment of nail changes in 35 patients with psoriatic onychopathy and 25 with nail dystrophy secondary to onychomycosis. All patients underwent 3 examinations: a complete clinical assessment; a nail ultrasound study; and fungal culture. Nails of patients with psoriatic onychopathy presented a thinner nail plate and nail bed, measured by ultrasound, than did those with onychomycosis. The percentage of patients with a power Doppler signal ?2 at nail bed was significantly higher in psoriatic onychopathy than in onychomycosis, and structural bone lesions were more frequent in psoriatic onychopathy than in onychomycosis. These results suggest that the presence of structural damage and high-power Doppler signal are the main ultrasound findings supporting a diagnosis of psoriatic onychopathy.

Treatment patterns, unmet need, and impact on patient-reported outcomes of psoriatic arthritis in the United States and Europe.

Psoriatic arthritis (PsA) is a chronic, inflammatory disease. The effects of PsA real-world treatment patterns on patient-reported outcomes in the US and 5 European countries (EU5; France, Germany, Italy, Spain, UK) were evaluated. Respondents from the 2016 National Health and Wellness Survey received advanced therapies (e.g., biologic disease-modifying antirheumatic drugs [DMARDs]), other therapies, (e.g., conventional synthetic DMARDs), or no treatment. Assessments included demographics, disease severity (patient-reported), comorbidities (Charlson Comorbidity Index), health status (Short Form-36 Health Survey), depression (Patient Health Questionnaire-9), work productivity (Work Productivity and Activity Index), and treatment adherence (Morisky Medication Adherence Scale-8). Overall, 1037 respondents from the US and 947 respondents from the EU5 were included. Of these, 21.7% US and 7.3% EU5 respondents received advanced therapies; 16.6% and 28.5%, other therapies; and 61.7% and 64.2%, no treatment, respectively. During treatment with advanced or other therapies, 40.8-54.7% US and 57.7-58.9% EU5 respondents self-reported moderate or severe PsA. Respondents receiving advanced therapies had the highest Charlson Comorbidity Index score (US, 1.25; EU5, 1.42); the lowest scores were with no treatment (0.52 and 0.49, respectively). Employment was lowest with other therapies (US, 47.7%; EU5, 41.1%). Overall work impairment was reported by 57.9% US and 62.6% EU5 respondents receiving advanced therapies. Medication adherence was generally low in the US and medium in the EU5 (Morisky Medication Adherence Scale-8: low, US 40.1-46.7%, EU5, 29.0-35.2%; medium, US 29.3-36.1%, EU5 37.8-49.3%; high, US 23.8-24.0%; EU5, 21.7-27.0%). Advanced and other therapies reduced PsA severity; however, > 40% of respondents reported moderate or severe PsA during treatment. Better management and adherence may reduce unmet need and disease burden. Further work is required to improve PsA diagnosis and time to treatment initiation.

Work disability in patients with ankylosing spondylitis.

OBJECTIVE: To determine the prevalence of work disability in Spanish patients with ankylosing spondylitis (AS) and to identify factors related to it. METHODS: A cross-sectional study based on data from Regisponser (National Spanish Registry of Patients with Spondyloarthropathy). Demographic and disease-related variables were collected. AS patients were classified as work-disabled according to the Spanish Social Security System criteria. Variables that discriminated between AS patients with and those without work disability were identified using chi-square test or unpaired t test when appropriate. Multiple logistic regression was performed. RESULTS: In total 699 AS patients, age 48.7 +/- SD 12.7 years and with disease duration 14.1 +/- 10.1 years, were analyzed; 179 patients (25.6%) had permanent work disability. Several variables had significantly different values in patients with compared to those without work disability. In the regression model (pseudo R(2) = 0.26, p < 0.0001), age (p = 0.001), sex (p = 0.04), disease duration (p = 0.006), total Bath AS Radiological Index (p = 0.007), Bath AS Functional Index (BASFI; p = 0.007), and chest expansion (p = 0.03) retained an independent association with work disability. When BASFI was excluded from the model the independent association with sex did not remain, and a significant association with finger to floor distance was found (p = 0.040). CONCLUSION: The prevalence of permanent work disability in Spanish patients with AS is significant, and the main factors related to it are age, disease duration, structural damage, and physical functioning. Longitudinal studies are needed to confirm these results.

The burden of ankylosing spondylitis in Spain.

OBJECTIVE: To investigate the burden of ankylosing spondylitis (AS) in Spain, as baseline for economic evaluation of the use of biological agents. METHODS: A cross-sectional retrospective observational study was performed in 601 patients with AS in Spain, using a methodology developed in studies in the United Kingdom and Canada. Patients were mailed a questionnaire asking about their health-care consumption, out-of-pocket expenses, work capacity, need for informal care during the past 3 months, as well as quality of life. Patient's current functional status and disease activity level was assessed using the Bath functional and disease activity indexes (BASFI and BASDAI). RESULTS: The mean age (median) was 47.8 (12.4) years, and the mean disease duration was 18.8 years. Eighty percent of patients were male, and slightly more than half of patients below 65 years of age were working. The mean (median) BASDAI and BASFI scores were 4.3 (2.5) and 3.8 (2.9),respectively, and all levels of disease severity were represented. The mean (median) total annual cost per patient is estimated at euro 20,328 (euro 7920). Direct health care represented 22.8%, investments (adaptations of house and devices) and informal care 43.5%, and productivity losses 33.7%. Costs increased significantly with worsening disease, in particular diminishing physical function, covering a range between euro 5000 and euro 75,000 per patient and year. The mean (median) utility was 0.59 (0.30). Utility showed a significant inverse relation with BASFI and BASDAI, covering a range from 0.80 for patients with BASFI/BASDAI below 3 to 0.25 for patients with BASFI/BASDAI greater than 7. CONCLUSIONS: As in studies in other countries, all types of costs accelerate steeply with worsening disease while utility decreases significantly, indicating the need to prevent disease progression.