ArticleLupus science & medicine2021
Living with systemic lupus erythematosus in 2020: a European patient survey.
Article in Lupus science & medicine, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 51 papers, 4 of them syntheses that pooled it.
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Who cites it
51 citing papers in PubMed, 4 syntheses or guidelines pooled it, 83 citations in OpenAlex.
- Exercise and physical activity for fatigue, disease activity and immune-inflammatory outcomes in adults with systemic lupus erythematosus: an umbrella review.Frontiers in immunology · 2026Pooled it
- Efficacy and safety of telitacicept in adults with systemic lupus erythematosus: a systematic review and stratified meta-analysis.Frontiers in medicine · 2026Pooled it
- Therapeutic potential of extracellular vesicles in systemic lupus erythematosus: a systematic review.Immunologic research · 2025Pooled it
- The frequency of fibromyalgia in patients with systemic lupus erythematosus and associated factors: a systematic review and meta-analysis.Clinical rheumatology · 2025Pooled it
- Enpatoran, a first-in-class, selective, orally administered toll-like receptor 7/8 inhibitor, in systemic and cutaneous lupus erythematosus: results from a randomised, placebo-controlled phase Ib study.Lupus science & medicine · 2025Trial
- Suboptimal attainment of SLE treat-to-target goals based on persistently high physician global assessment: an analysis of German SPOCS patients.Lupus science & medicine · 2026Article
- Barriers to physical activity in patients with systemic lupus erythematosus in the UK.Clinical rheumatology · 2026Article
- International development of a lupus-specific instrument to assess cognitive symptoms in patients with SLE: Lupus Brain Fog Severity Scale (LBFSS) study.Lupus science & medicine · 2026Article
- Cerebellar volume alterations are associated with cognitive dysfunction and fatigue in patients with systemic lupus erythematosus.BMC rheumatology · 2026Article
- Predictive correlates of arthritis and joint damage in systemic lupus erythematosus: a multinational prospective cohort study.Rheumatology (Oxford, England) · 2026Article
- Article
- Navigating uncertainty: Experience of individuals living with systemic lupus erythematosus.BMC rheumatology · 2026Article
- Living with systemic lupus erythematosus in 2024: Latin American experience based on a patient survey.Clinical rheumatology · 2026Article
- Discordance Between Patients and Physicians on Key Determinants of Systemic Lupus Erythematosus Burden: Insights From a French Comprehensive Survey.ACR open rheumatology · 2026Article
- Anifrolumab in Refractory Oral Manifestations in Systemic Lupus Erythematosus: A Case Report and Literature Review.Biologics : targets & therapy · 2026Article
- Increased Intestinal Permeability and Articular Involvement in Systemic Lupus Erythematosus Patients-A Mutually Exclusive Relationship?Current issues in molecular biology · 2025Article
- The role of the patient in rheumatology.Nature reviews. Rheumatology · 2025Article
- Predictors of patient-reported outcomes phenotypes in SLE during remission: a cluster analysis approach.Lupus science & medicine · 2025Article
- The Lupus Check 5 Tool: A Practical Approach to Initiating Treatment Reviews in Systemic Lupus Erythematosus.Rheumatology and therapy · 2025Article
- Understanding Sex Differences in Autoimmune Diseases: Immunologic Mechanisms.International journal of molecular sciences · 2025Review
Corrections and comments
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Authors and funding
5 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThe aim of this study was to analyse the 2020 burden of Systemic Lupus Erythematosus (SLE) in Europe, from the patients' perspective.
methodsIn May 2020, Lupus Europe, the European umbrella patient association for SLE, designed and disseminated a multilingual anonymous online survey to individuals with a self-reported physician's diagnosis of SLE living in Europe.
resultsData from 4375 SLE survey respondents (95.9% women, median age: 45 (IQR: 36-54) years, 70.7% Caucasians) from 35 European countries were analysed. The median age at SLE diagnosis was 30 years (IQR: 22-40) and the median diagnosis delay was 2 years (IQR: 0-6). The most commonly affected organ-systems included the joints (81.8%) and skin (59.4%), with renal involvement in 30%. Another diagnosis was given before that of SLE in 45.0%, including psychological/mental disorders in 9.1% and fibromyalgia in 5.9%. The median number of symptoms reported was 9 (IQR: 6-11) out of 21, with fatigue most common (85.3%) and most bothersome. The median number of SLE-related medications was 5 (IQR: 3-7), including antimalarials (75%), oral glucocorticoids (52.4%), immunosuppressants (39.8%) and biologics (10.9%). Respondents reported significant impact over their studies, career and emotional/sexual life in 50.7%, 57.9% and 38.2%, respectively. Appropriate access to care was highly variable across countries and care component.
conclusionThis survey underlines the 2020 burden and strong heterogeneity in the care of SLE across Europe, from the patient's perspective. Altogether, these data may prove crucial to physicians, patients and policy-makers to improve the diagnosis and management of this rare and complex disease.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.