Characterization of Psychosocial Symptoms and Illness Perception in People with Scleroderma

Please send your answers for the following questions to Caterina Leite on following e-mail: associacao [dot] apde [at] gmail [dot] com. Or please follow this link to go to the survey link for your country. Thank you.

What does having scleroderma mean to you? How does scleroderma affect your life?

Most people visiting this website will have answers to these questions. Now there is a serious study being made in Europe of the psychological and social effects of scleroderma. This research programme is designed to find out what kind of help people with scleroderma need.

The research study is called “Characterization of Psychosocial Symptoms and Illness Perception in People with Scleroderma.” It is a European study resulting from a Canadian study.

The investigation is being conducted at the University of Minho, Portugal. The researchers in charge are Ângela Maia (coordinator) and Catarina Leite (researcher and FESCA member). This project has the full support of FESCA. Its main purpose is to determine issues that are important for people living with scleroderma, and so it includes questions about symptoms and their effect on daily life, as well as psychological, social, employment, and financial issues. It also asks about ability to obtain appropriate healthcare.

Answering the questions about your symptoms will give valuable input to the study. If you would like to be involved, contact your national patient association, or email the researchers on associacao [dot] apde [at] gmail [dot] com for a link to the questionnaire.

This is your opportunity to help focus research into areas that you have identified as important to you. Your participation in this study only involves completing a questionnaire. It is voluntary and confidential—your name is not attached to your answers. It is quite simple and you do not have to look up dates or medications. The questionnaires will remain active in the study until June 30, 2011.

Thank you for participating in this valuable study.

You can also go directly to the surveys from these LINKS - please select the links from your country.

FESCA

Federation of European Scleroderma Associations

Upcoming events

International Scleroderma Day, June 29th

EULAR Congress 2012, Berlin