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

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

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7 days ago
LUPUS EUROPE

We have exciting news!!!

Lupus Europe keeps growing! Sara Badreh has now joined our team as the Patient Advisory Network (PAN) coordinator!
We are very excited to be working with Sara; you can read more about her in our newsflash!

What is the PAN?

At LUPUS EUROPE we believe that patients have great potential to be an added value in research and development. That's why we invest in training and have created our PAN: trained patients involved in research projects with organisations like EULAR, the European SLE Society and ERN Reconnet.

The PAN is formed by 25-30 trained and energised patients, experienced in living with #lupus, appointed by LUPUS EUROPE to act as liaison and resource to value-adding scientific projects, clinical trials and other research related to lupus. They also had an active role in #LUPUS2022!

The PAN also connects the patient community to the scientific community by providing prompt, reliable and consistent advice and support from the very initial stages of research all the way to effective access through treatment plan

Do you want to see what it is like to be part of the PAN? In this video, Francesca shares her insight

youtu.be/eJtGDtL9Ngg

Do you want to be part of this amazing team?

If the answer is "YES”, e-mail zoe@lupus-europe.org and find out more about it. No previous knowledge needed!

Don't miss our Newsflash, where our Chair, Jeanette Andersen, introduces Sara Badreh, talks about her background and her role in Lupus Europe.
Welcome to the team Sara!

mailchi.mp/lupus-europe.org/lupus-europe-newsletter-january-2023
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1 week ago
LUPUS EUROPE

Remember!

Our #kicklupus competition is running! Get your chance to attend our #lupusconvention and see firsthand all that we are doing for the European #lupus community!

All you have to do is tell us how volunteering for a lupus organisation has helped you changed your life. Send your testimonial (drawing, short/long text, song... any format is valid!) to zoe@lupus-europe.org.

As our Chair, Jeanette Andersen says, you can do it in your own language!
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1 week ago
LUPUS EUROPE

Comorbidity occurs when a person has more than one disease or condition at the same time. 2 of the most frequent comorbidities in #SLE are cardiovascular diseases and infection.
Prevention is key.

As per Dr. Angela Tincani says, "don't be worried because you have a higher risk than the general population. Take action to prevent it because there are several effective strategies:
- Stop smoking
- Have a healthy diet
- Do exercise
- Follow what your Dr. says.

Learn more about prevention and lupus here:

youtu.be/l10LsKDDkuY
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2 weeks ago
LUPUS EUROPE

Remember that next Wednesday, 18th January, at 17:00 CET (i.e. Paris time), we will be able to learn the latest data on #fatigue in #SLE thanks to Prof. Arnaud and Lou Kawka.

Don't miss this amazing ERN RECONNET webinar and register now!

us02web.zoom.us/webinar/register/WN_s-I4UVxsTW-eJd3bKPLvSg
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