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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.
“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).
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. 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 seven out of 10 patients (68.3%) suffered with fatigue.