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Online Survey: Your Help Needed.

Utrecht University would like your help in participating in an online survey on the understanding or lack of it with regard to rheumatic diseases. Lack of understanding can be frustrating and problematic when it comes to getting the help we need with fibromyalgia.

This survey will look into the problems people have encountered. The following is the letter we received from Marianne Kool M.Sc. from the Dept. of Clinical and Health Psychology.

Dear representative of the patient association,

With this letter, I would like to ask to help us with acquiring respondents for a large-scale international internet questionnaire study about understanding and lack of understanding for rheumatic diseases, which we recently started in the Netherlands at Utrecht University. This study is conducted in collaboration with Dutch patients and international researchers. The study is approved by the Dutch medical ethics committee of the University Medical Center Utrecht.

Dutch patients with fibromyalgia and rheumatoid arthritis report that lack of understanding (invalidation) for their illness is an important issue in their lives. The aim of the current study on the internet is to examine how much invalidation by others is experienced by people who have a rheumatic disease. We also want to examine the consequences of this invalidation. We would like to compare this between different countries. Patients with any rheumatic disease can fill out a questionnaire on the internet in their own language, which will take approximately 20 minutes. Participation will be voluntary and anonymous.

To receive representative information, we would like to recruit as many participants as possible. We try to do this by putting information and a hyperlink of the study on websites of patient associations. In the Netherlands and Belgium we already recruited more than 1000 participants in this way. We would like to ask you if your patient association will be willing to put a hyperlink and some information of the study on the patient association website. The link and information of the study are as follows:

SEEKING PARTICIPANTS TO FILL OUT A QUESTIONNAIRE ON UNDERSTANDING AND LACK OF UNDERSTANDING FOR RHEUMATIC DISEASES: Patients with any rheumatic disease are asked to participate in a questionnaire study on the internet. Filling out the questionnaire will take approximately 20 minutes. The aim of the study is to examine how much understanding and lack of understanding is experienced by people who have a rheumatic disease. Also the consequences of this (lack of) understanding will be examined. This study is performed by researchers of Utrecht University (the Netherlands) in collaboration with researchers form universities in Detroit (USA), Coïmbra (Portugal), Marburg (Germany), Ghent (Belgium), and Barcelona and Jaén (Spain). The study is financed by the Dutch Arthritis Association. If you want more information or want to participate, please click on the following hyperlink: www.lackofunderstanding.nl

Hopefully, I have provided sufficient information about the study. If you have any questions, you can always contact me. We would be very grateful if you would like to collaborate by placing a link of the study on your website!

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