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Lupus: hitting patients’ careers

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    An interesting new pan-European study puts numbers on something that has been suspected for some time: Lupus has a negative impact on patients’ working life.

    The numbers are quite stark. Lupus affects the careers of seven out of 10 people living with the disease - seven out of ten!

    What makes this study particularly noteworthy is that it has been carried out in collaboration with patients and the research methods are robust.

    The Lupus European Online (LEO) survey is supported by UCB and LUPUS EUROPE and is believed to be first of its kind to use validated measures to assess the impact lupus has on patients.

    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

    Looking at patient-reported outcome measures including fatigue, work impairment and health-related quality of life, the study reveals that, within one year of lupus diagnosis, approximately 28% of working respondents had to change their career.

    More than one in four of those surveyed had to apply for sick leave and 28% had to apply for social or disability allowance.

    On top of this, the survey found that although the majority of patients (72%) were educated to college/university level, only 52% were employed.

    In addition, 60% reported that the disease had reduced their working hours by more than 50%., while nearly seven out of 10 patients (68.3%) suffered with fatigue.

    The questionnaire was designed by patients from LUPUS EUROPE in collaboration with lupus experts and was distributed online in five European languages by the LUPUS EUROPE patient network.
     
    “By using validated patient-reported outcome measures specific for lupus to quantify the level of fatigue, 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).

    He said the significant participation in this e-survey from the lupus patient community demonstrates that such surveys are needed and valued.

    References
    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.
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