OBJECTIVES: A previous survey distributed in Europe and the US found that lupus affects patients’ career, physical well-being and everyday living. The LEO survey was developed to explore further the effect of lupus on work productivity, fatigue and health-related quality of life (HRQoL) in Europe. METHODS: The survey had four sections. Section 1 included patient-developed questions on demographics, lupus diagnosis and impact of lupus on work and career. Sections 2–4 used lupus-specific patient-reported outcomes (PRO) instruments to assess work impairment (Work Productivity and Activity Impairment Questionnaire, Lupus V2.0), fatigue (lupus-specific Fatigue Severity Scale) and HRQoL (LupusQoL). The survey was available May–August 2010 and in five European languages. RESULTS: A total of 1566 participants with self-reported lupus completed the survey: from France (n=139), Germany (n=537), Italy (n=357), Spain (n=267) and the UK (n=266). Most were female (93%, 1440/1557) and aged 26–55 years (81%, 1253/1550). In section 1, over two-thirds (70%, 1028/1475) of participants reported that lupus affected their career (highest UK, 79% [199/252]; lowest France, 56% [73/131]). Of these, 31% (288/928) now work flexible hours, 29% (265/928) applied for sick leave, 24% (219/928) applied for social or disability allowance and 17% (156/928) changed career. Of those who reduced work hours, almost a quarter (23%, 150/646) had to reduce by >75%. In the WPAI assessment, participants reported missing an average of 13% (SD=24.2) of their working time because of lupus. At work, productivity was reduced by an average of 40% (SD=25.8). Overall, an average of 43% (SD=27.1) of total work hours available to participants were lost due to lupus. Ability to carry out non-work activities such as housekeeping, childcare and studying was, on average, impaired by 56% (SD=26.7). CONCLUSIONS: Lupus diminishes European patients’ likelihood of working and their productivity while at work. These findings emphasise the need for improved management of lupus.