Living with Lupus

Survey II Living with Lupus: Career / Work Situation

Last year the response 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 need to investigate this further and have prepared a new survey: this year 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 is in five languages - English, French, German, Spanish and Italian. We hope this will help us collect at least 200 responses per language, but also that having the language versions will encourage even more persons to respond.
We are most grateful to our national groups for sending this message on to each person with lupus in Europe.

English version: http://www.surveymonkey.com/s/VNR5XPM
French version: http://www.surveymonkey.com/s/ZYS5NZS
German version: http://www.surveymonkey.com/s/2VCLY2Q
Spanish version: http://www.surveymonkey.com/s/M8Y8MS3
Italian version: http://www.surveymonkey.com/s/YFX2BBY

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 has been accepted as poster presentation for EULAR 2010 in Rome.

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

During 2011, the results will be presented at key European scientific lupus events and a short report will be distributed to all member countries following publication.

The Trustees hope to gather important findings that will form the basis for future initiatives and thank you for taking time to complete the survey and for your support of LUPUS EUROPE.

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

UPDATE - August 15, 2010

Dear all,

Today is the deadline for responses to our survey. The five versions of our questionnaire about "Living with Lupus: Career / Work situation" have been closed for responses and all data is now transferred to another server for the next step of analysis.

Since last status two weeks ago we have had another 200 respondents entering the survey!

I am very proud to report the final count is:

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!
And according to a quick glimpse on the raw data, it mainly seems to be meeting the basic presumptions of study requirements and  in accordance with the typical lupus profile. Promising.

Look here at the numbers:

 Belgium (FL): 7
 Belgium (FR):  29
 Cyprus: 6
 Denmark: 51
 Finland: 1
 France: 157
 Germany: 552
 Hungary: 96
 Iceland: 1
 Ireland: 10
 Israel: 3
 Italy: 388
 Malta: 1
 The Netherlands: 66
 Norway: 32
 Portugal: 2
 Spain: 258
 Sweden: 2
 Switzerland: 35
 United Kingdom: 281
Other: 141
====================
Answered: 2120
Skipped: 68
Totals: 2188

In Budapest at the LUPUS EUROPE Convention we will be able to discuss this further - the experience, overall top results and the next steps of analyzing the findings.

The volume of responses will have an impact on the value of this survey, where we will work for presenting yet again at the key events next year - European Lupus Meeting in Porto April 6-9 and at EULAR Congress 2011, London, May 25-28.

Looking forward to some open and great discussions, I remain

Sincerely,

Kirsten Lerstrøm
LUPUS EUROPE
Vice-Chair

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