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Living with Lupus

Online Survey 2010
Survey II Living with Lupus: Career / Work Situation

The response of the 2009’s survey was clear: Lupus has been a life changing experience with the most highly significant affect on career.
A surprising statement, but yet not at all that big of surprise when you think about it.
Lupus is most often diagnosed when the woman is up to 45 years of age. This means the time of your life, when you study to find your field of expertise and/or are in the midst of establishing a family. Career change.

But how and perhaps why?

We needed to investigate this further and prepared a new survey: with the specific aim to check whether having lupus means career change and how. We have been fortunate to be able to combine the parts of the survey with validated questionnaires on Fatigue, Work Impact and Lupus Quality of Life.

It is the first time all these aspects are combined.
Nevertheless, it is the first time an on-line survey addresses any person in Europe with lupus to give the individual reply to the situation of impact of lupus to career.

The survey was in five languages - English, French, German, Spanish and Italian:

The Clinical Advisory Group for the survey includes Professor Matthias Schneider, Professor David Isenberg and Professor Caroline Gordon from the LUPUS EUROPE Medical Advisory Panel.

Kirsten Lerstrøm is the Project Leader from LUPUS EUROPE working closely with the Trustees and the contacts of the five member countries providing the language translation.

The abstract “Impact of systemic lupus erythematosus on patients’ employment, family relationships, and overall well-being” submitted to EULAR was accepted as poster presentation for EULAR 2010 in Rome.

The methodology of the survey was presented during the 9th International SLE Congress at Vancouver and at the LUPUS EUROPE Annual Convention in Budapest in September 2010.

During 2011, the results will be presented at key European scientific lupus events and in 2013, it was published under the name Lupus European Online - LEO, and is available online. Please click on the link to access the full article : http://rheumatology.oxfordjournals.org/content/early/2013/09/18/rheumatology.ket300.full

For more information, please read our Factsheet Survey 2010 and our Media release.

THE RESULTS

2188 responses in total

English version - 596 responses (97,6% with lupus)
German version - 638 responses (98,9% with lupus)
French version - 215 responses (94,1% with lupus)
Italian version - 405 responses (98,1% with lupus)
Spanish version - 334 responses (97,1% with lupus)

Responses from "Other" (countries) only 6,4%

An amazing result!

The survey has been presented at the key events 2011 - European Lupus Meeting in Porto April 6-9 and at EULAR Congress 2011, London, May 25-28, and presented as poster during the DGRh congress in Munich, Germany, from August 31 - September 3, 2011

ONLINE PUBLICATIONS

MediLexicon - May 27, 2011
Hospital Pharmacy Europe - May 27, 2011
MediLexicon - May 29, 2011

Kirsten Lerstrøm
LUPUS EUROPE
Vice-Chair

This survey has been jointly designed, developed and implemented by LUPUS EUROPE and UCB Pharma SA