Patient Evidence

What is the burden of atopic eczema, and what can be done to address it? Download the resources below to join us in campaigning for better atopic eczema care across Europe!

Audiovisual and other materials

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The results of Atopic Eczema Consensus Europe have led to a call to action for policymakers: a list of demands from the atopic eczema community to instil changes in the healthcare and social systems and improve quality of life for patients. To support you in advocating for these changes at the national and European level, download the toolkit to guide you in your advocacy work. You will find:

  • A project powerpoint to explain the Atopic Eczema Consensus Europe project (English)
  • A template letter to contact your local politicians and policymakers (English)
  • Upcoming! Digital materials to advocate for change for atopic eczema care (English)
Download the Atopic Eczema advocacy toolkit

The European Atopic Eczema Consensus Report is the result of the discussions of a Consensus Committee of 15 key opinion leaders from the atopic eczema community. As multidisciplinary experts, they conducted an assessment of the atopic eczema community around the three areas that affect patients the most:

  • The physical and emotional burden of AD/E
  • The diagnosis and care burden of AD/E
  • The financial and economic burden of AD/E

EFA and its national member associations have transformed the findings of the Consensus Committee of AD/E into a Call-to-Action addressing European and national decision-making bodies. Some of these recommendations include:

  • Reinforce the role for specialised nurses, psychologists, pharmacists and nutritionists in atopic eczema care
  • Ensure the respect of the newest clinical guidelines, establishing an agile system of referral for AD/E patients
  • Adopt a new clinical approach, where AD/E diagnosis is not static but adapts based on the developing condition of the patient and latest scientific evidence

In 2021, EFA invited a panel of leading European AD/E healthcare professionals and expert patients to form a consensus committee. Two virtual consensus meetings were organised to discuss and agree on the current situation, challenges, and solutions to reduce the burden of AD/E in Europe. Consensus meeting participants represented several European countries and sectors. Through this collaborative initiative, EFA aims to inform healthcare policymakers and stakeholders on current unmet needs in the care of AD/E in Europe.

Healthcare professionals

 Wollenberg  

Prof. Andreas WOLLENBERG

(Co-Chair) Professor and Head of Conservative and Pediatric Dermatology Unit, Department of Dermatology - Ludwig-Maximilian University, Munich (LMU)

Germany

         
Angier

 

 

Dr. Elizabeth ANGIER

Clinical Director, Primary Care - West Hampshire Clinical Commissioning Group - University of Southampton

United Kingdom

         

Sondergaard

 

Prof. Mette SONDERGAARD DELEURAN

Chairman, MD, DMSc, Department of Dermatology - University of Aarhus

Denmark

         
Gutermuth

 

 

Prof. Jan GUTERMUTH

Chairman of the Department of Dermatology & Head Skin Immunology & Immune Tolerance Research Group - University Hospital Brussels

Belgium

         

John

 

Prof. Swen Malte JOHN

Chairman of the Department of Dermatology, Environmental Medicine - University of Osnabrueck

Germany

         

Paul

 

Prof. Carle PAUL

Full Professor and former chairman, Department of Dermatology at Larrey Hospital - CHU Toulouse and Paul Sabatier University, Past President European Academy of Dermatology and Venerology

France

         

Habibi

 

Ms. Sibylle PLANK-HABIBI

Head of Dietitian Team, Department of Dermatology and Allergology - Vital Klinik Alzenau

Germany

         

Rasmussen

 

Ms. Gitte RASMUSSEN

Clinical Nurse Specialist, MScN, Department of Dermatology and PhD student - Aarhus University Hospital

Denmark

         

Ring

 

Prof. Johannes RING

Professor and former Chairman of the Department of Dermatology and Allergology - Technical University of Munich (TUM)

Germany

         

Baldrich

 

Dr. Esther SERRA BALDRICH

Deputy Physician Head of the Skin Immunoallergic Diseases, Dermatology Service - Hospital de Sant Pau, Barcelona

Spain

         

Szalai

 

Prof. Zsuzsanna SZALAI

Leader of the Department of Peadiatric Dermatology - Heim Pal National Children's Institute Budapest

Hungary

 

Patient representatives

Camillo

 

Ms. Joana CAMILO

(Co-Chair) Founding President of the Portuguese Association of Atopic Dermatitis (ADERMAP) and Executive Director of Creating Health

Portugal

         

Ceylan

 

Ms. Ozlem CEYLAN

Founding President of Living with Allergy Association

Turkey

         

Mesaric

 

Ms. Tina MESARIC, PhD

PhD, Project leader - Institute Atopika

Slovenia

         

Vardic

 

Ms. Snežana ŠUNDIC VARDIC

President of Allergy and Me

Serbia

In the past years, EFA has been vocal in advocating change for all people living with atopic eczema in Europe. One of our most relevant contributions has been the biggest-ever Quality of Life survey on severe atopic eczema, published in 2018, a patient reported outcome measurement (PROM) that surveyed almost 1,189 patients from 9 European countries. The resulting report “Itching for Life” was a breakthrough piece that sheds light into the life and economic costs encountered by atopic eczema patients.

Despite growing awareness and advancement around skin conditions, the burden atopic eczema patients endure each day is not sufficiently recognised, nor equal. It implies pain, isolation and economic costs that result from the gap in consensus around multidisciplinary care approaches based on needs that could address the impacts patients face in Europe. Awareness around these issues is currently only acknowledged among the atopic eczema community.

The lack of a strong consensus on atopic eczema burden in Europe from the healthcare community leads to a persisting approach to give low priority to atopic eczema as a serious chronic disease. At EFA we seek to change this situation.

Download the report

Reaching a consensus across Europe

In 2021, EFA launched a project to fill the awareness and care gaps and find consensus on the burden of Atopic Eczema/Dermatitis for patients and carers. We gathered 15 key opinion leaders from the atopic eczema community (patients, patients’ representatives and multidisciplinary healthcare professionals) to discuss and find common ground on the social burden caused by Atopic Eczema by showing the gaps. These opinion leaders formed the Consensus Committee and shared expert advice on the challenges faced by atopic eczema patients and potential solutions.

The result of this project is a report to serve as a key, regional, advocacy tool for the community patients and healthcare professionals, and stakeholders, to develop the voice and joint position to change patients’ access to quality of care based on the real burden of atopic eczema.

Acknowledgements

The EFA’s Atopic Eczema Consensus Europe Project, meeting and consensus report have been funded with unrestricted grants from EFA’s Sustainable Funding Partners AbbVie, LEO Pharma, and Sanofi/Regeneron.