ArticleRheumatology (Oxford, England)2013
The substantial burden of systemic lupus erythematosus on the productivity and careers of patients: a European patient-driven online survey.
Article in Rheumatology (Oxford, England), 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 46 papers, 2 of them syntheses that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
46 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- The 2026 British Society for Rheumatology guideline for the management of children, young people and adults with systemic lupus erythematosus.Rheumatology (Oxford, England) · 2026Guideline
- Work participation in patients with systematic lupus erythematosus: a systematic review.Rheumatology (Oxford, England) · 2022Pooled it
- A randomised controlled trial to assess the feasibility and acceptability of remote psychosocial and exercise interventions for people with lupus: The ADAPT feasibility trial.Rheumatology international · 2025Trial
- Efficacy and Safety of Atacicept in Patients With Systemic Lupus Erythematosus: Results of a Twenty-Four-Week, Multicenter, Randomized, Double-Blind, Placebo-Controlled, Parallel-Arm, Phase IIb Study.Arthritis & rheumatology (Hoboken, N.J.) · 2018Trial
- Efficacy and safety of an interleukin 6 monoclonal antibody for the treatment of systemic lupus erythematosus: a phase II dose-ranging randomised controlled trial.Annals of the rheumatic diseases · 2017Trial
- Observational
- Living with systemic lupus erythematosus in 2024: Latin American experience based on a patient survey.Clinical rheumatology · 2026Article
- Work disability in systemic lupus erythematosus: a systematic review protocol of contributing factors and return-to-work facilitators.BMJ open · 2025Article
- A 6-year prospective study on work participation and the associated factors in Dutch patients with systemic lupus erythematosus (SLE).Arthritis research & therapy · 2025Article
- Falls Among Individuals With Systemic Lupus Erythematosus: An Observational Study.ACR open rheumatology · 2025Article
- Limitations in Activities of Daily Living Among Individuals With Systemic Lupus Erythematosus.Arthritis care & research · 2025Article
- Prevalence and correlates of restricted community mobility in a population-based cohort of adults with systemic lupus erythematosus.Lupus science & medicine · 2025Article
- Impact of quality of life on overall work productivity impairment and activity impairment of patients with systemic lupus erythematosus: the PEONY study.Lupus science & medicine · 2025Article
- Patient Perspectives on Reproductive Health in Systemic Lupus Erythematosus: Exploring Disease Manifestations, Quality of Life, and the Role of Social Support.International journal of women's health · 2025Article
- Current investigation of the high prevalence of sexual dysfunction in female patients with systemic lupus erythematosus: a cross-sectional study.Rheumatology international · 2024Article
- Article
- Fluid Cognition Among Individuals With Systemic Lupus Erythematosus.Arthritis care & research · 2024Article
- Comparison of cognitive performance measures in individuals with systemic lupus erythematosus.Lupus science & medicine · 2024Article
- Physical Performance in a Diverse, Population-Based Cohort of Individuals With Systemic Lupus Erythematosus.Arthritis care & research · 2024Article
- Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThe objective of this study was to explore the burden of SLE and its effect on patients' lives.
methodsThe Lupus European Online (LEO) survey included patient-designed questions on demographics, SLE diagnosis, and the impact of SLE on careers. Three SLE-specific patient-reported outcome (PRO) questionnaires were also completed: the Lupus Quality of Life (LupusQoL), the Fatigue Severity Scale (FSS), and the Work Productivity and Activity Impairment (WPAI)-Lupus v2.0. The survey was available online in five languages from May through August 2010. All self-identified SLE participants were eligible to respond. Survey results were analysed using descriptive statistics. Multivariate linear regression explored factors contributing to impaired productivity.
resultsOf the 2070 European SLE patients completing the survey, 93.1% were women, 86.7% were aged <50 years and 71.8% had a college or university education. More than two-thirds of respondents (69.5%) reported that SLE affected their careers; 27.7% changed careers within a year of diagnosis. All LupusQoL domains (score range 0-100) were impaired, with fatigue (median domain score 43.8) being the most affected and intimate relationships (median domain score 75.0) the least. Most patients (82.5%) reported fatigue (FSS score ≥4). Productivity was impaired across all WPAI domains, both at work and in general activities. Fatigue, an inability to plan and reduced physical health were significantly associated with impaired productivity. Patients whose careers were affected by SLE had worse health-related quality of life, more fatigue and worse productivity than patients whose careers were not affected.
conclusionLEO survey respondents reported that SLE negatively affects their daily lives, productivity and career choices.
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