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 for 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.
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 We will be able to refresh the outdated data we have about eczema, and analyse the similarities and inequalities among countries.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.
This new evidence will allow us to better articulate the voice of the patients suffering from it. Not only it will serve to fully integrate eczema into our EFA advocacy work, but also to reinforce the relationship we started in 2017 with the medical societies representing dermatologists (European Academy of Dermatology and Venereology) and world eczema patients (International Alliance of Dermatology Patient Organizations). The survey results will also lead to a scientific publications and a European report in 2018, and to mark in September the European Atopic Eczema Awareness day.