Atopic eczema is one of the most common non-communicable inflammatory skin diseases, affecting 1-3% adults in the EU who suffer chronic or relapsing itching. Eczema can drive patients crazy, but what does it really mean, daily?At EFA we decided to launch the biggest-ever study to document the impact atopic eczema has in our lives. A survey from patients to patients, on what matters to us.
In 2017, we developed a Quality of Life (QoL) and economic impact survey, which includes validated questionnaires as well as a new question developed by EFA to measure emotional consequences in adult patients. We received the ethical approval from the 9 European countries surveyed (Czech Republic, Denmark, France, Germany, Italy, Netherlands, Spain, Sweden, and the UK) and we recruited and interviewed most of the 1,200 participants in the study. The survey will be published in 2018.
For long, eczema has been dismissed as a superficial skin disease. The results of this project will serve to get the attention and support atopic eczema patient deserve from healthcare systems. We will be able to refresh the outdated data we have about eczema, and analyse the similarities and inequalities among countries. We hope the knowledge the participants of the study provide us, will help to ensure a smoother eczema management and less impact for the whole community affected by the disease, as patients or carers.
We have chosen September 12th to mark the first European Awareness day. It will be a day to inform the public about atopic eczema, to reach out to patients that for sure have felt lonely going through difficult times managing the disease, and to acknowledge their effort to battle it everyday. To mark the day, we will have a discussion during the European Academy of Dermatology and Veneraology (Paris) Congress in Paris, and exhibition to show the daily lives of atopic eczema patients, and media work.