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New survey finds lupus has negative impact on patients’ careers

Results showed 7 out of 10 patients reported that lupus affected their careers

Within one year of lupus diagnosis approximately 28% of working respondents, aged on average 36 years, had to change their career1

BRUSSELS & LONDON, 27 May, 07:00 CET – LUPUS EUROPE (LE) and UCB today announced results from the pan-European Lupus European Online (LEO) survey, believed to be the first online survey of its kind completed by lupus patients using validated measures assessing the impact of lupus. These patient-reported outcome (PRO) measures included assessments of fatigue, work impairment and health-related quality of life. The results from the survey of over 2,000 lupus patients were presented during the Annual Meeting of the European League Against Rheumatism (EULAR) in London, May 25–28.1,2

"By using validated PRO measures specific for lupus to quantify the level of fatigue, and the impact of the disease on work and overall health-related quality of life, we have been able to show just how debilitating lupus can be in terms of the number of patients having to stop or change their work or apply for sick leave,” said Prof. D. Isenberg, one of the lead authors of the report from LUPUS EUROPE (England). “The significant participation in this e-survey from the lupus patient community demonstrates that such surveys are needed and valued.”

The questionnaire was designed by patients from LE in collaboration with lupus experts and was distributed online in five European languages by the LE patient network. Questions ranged from those collecting information on lupus diagnosis, work and career to validated PRO measurements assessing fatigue (Fatigue Severity Scale), work impairment (Work Productivity and Activity Impairment Questionnaire Lupus V2.0) and the lupus-specific health-related quality of life measure (LupusQoL).1

The results detailed the negative impact of the disease on patients’ working lives, with 70% (1,359 of 1,954) of patients reporting that lupus had affected their careers. Over a quarter of these patients (27%; 332 of 1243), had to apply for sick leave and 28% (353 of 1,243) had to apply for social or disability allowance.1 Furthermore, although the majority of patients surveyed, 72% (1,458 of 2,032), were educated to college/university level, only 52% (1011 of 1931) were employed, 60% (548 of 912) reported that the disease had reduced their working hours by ≥50% and 28% (310 of 1121) had to change careers as a result of their diagnosis within the first year. Additional results found nearly 7 out of 10 patients (68.3%) suffered with fatigue.1


Notes to Editors:


For further information

Scott Fleming, Global Communications Manager – Immunology
Tel: +44.770.277.7378,

About the LEO survey
The Lupus European Online (LEO) survey was instigated to investigate the patient-reported impact of systemic lupus erythematosus (SLE) on fatigue, health-related quality of life (HRQoL) and work productivity.

Previous studies show that SLE has a negative impact on HRQoL.3-5 As many patients are of working age, the effect of SLE on work productivity is of particular interest. Employed SLE patients have higher HRQoL scores than those who are unemployed.6

The LEO survey was published online by LUPUS EUROPE between May and August 2010 in English, French, German, Spanish and Italian and promoted to patients. Responses were anonymised; all self-identified lupus patients were eligible to respond. A total of 2,070 of individuals with lupus completed the survey, of which 93.1% were women, 86.7% were aged <50 years, and 39% were diagnosed within the previous 5 years.

The Lupus European Online (LEO) survey was developed by a steering committee consisting of members of the expert LUPUS EUROPE advisory board, a LUPUS EUROPE patient representative, and a representative from UCB. It is, to the steering committee’s knowledge, the first Europe-wide survey comparing different HRQol measures conducted in SLE patients.

About systemic lupus erythematosus (SLE)
SLE, commonly referred to as lupus, is a chronic and potentially fatal autoimmune disease with a variable and unpredictable course. Antibodies are generated against the body’s own nuclear proteins causing the immune system to attack its own cells and tissues resulting in inflammation and tissue damage. This can occur in any part of the body, but most often targets the heart, joints, skin, lungs, blood vessels, liver, kidneys and nervous system. Lupus is characterized by periods of flares, or exacerbations, interspersed with periods of improvement or remission.

About UCB
UCB, Brussels, Belgium ( is a biopharmaceutical company dedicated to the research, development and commercialization of innovative medicines with a focus on the fields of central nervous system and immunology disorders. Employing more than 9000 people in over 40 countries, UCB produced revenue of EUR 3.22 billion in 2010. UCB is listed on Euronext Brussels (symbol: UCB).

Forward-looking statements
This press release contains forward-looking statements based on current plans, estimates and beliefs of management. Such statements are subject to risks and uncertainties that may cause actual results to be materially different from those that may be implied by such forward-looking statements contained in this press release. Important factors that could result in such differences include: changes in general economic, business and competitive conditions, effects of future judicial decisions, changes in regulation, exchange rate fluctuations and hiring and retention of its employees.

LUPUS EUROPE currently represents 23 national lupus groups in 21 member countries. LUPUS EUROPE aims to bring lupus to the attention of all relevant bodies and counterparts in Europe and assist the national groups in their efforts to raise awareness of lupus among patients, professionals and the general public.


1. Lerstrøm K et al. Lupus European Online (LEO) survey: a patient-driven survey to examine the impact of lupus. Presentation: OP0277-PARE.

2. Schneider M et al. Impact of lupus on fatigue, health-related quality of life and work productivity: Results from the lupus European Online Survey. Poster: FRI0243.

3. Hanly, J. G. et al. SF-36 summary and subscale scores are reliable outcomes of neuropsychiatric events in systemic lupus erythematosus Ann Rheum Dis;6-1-2011;70;6;961-967

4. McElhone, K. et al. The LupusQoL and associations with demographics and clinical measurements in patients with systemic lupus erythematosus J Rheumatol;2010;37;11;2273-2279

5. Tamayo, T. et al.Factors influencing the health related quality of life in patients with systemic lupus erythematosus: long-term results (2001--2005) of patients in the German Lupus Erythematosus Self-Help Organization (LULA Study) Lupus;2010;19;14;1606-1613

6. Almehed, K. et al. Health-related quality of life in systemic lupus erythematosus and its association with disease and work disability Scand J Rheumatol;2010;39;1;58-62

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