This article is part of our special report The real face of eczema in Europe.
A landmark study on the quality of life and costs for people suffering from atopic eczema in Europe has revealed the effect of the disease on patients, particularly the sometimes high social and financial costs.
Atopic eczema is one of the most common non-communicable inflammatory skin diseases, affecting 1-3% of adults in the EU who suffer from chronic or relapsing itching. For almost 10% of patients with atopic eczema, the condition is severe.
On 13 September, the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) presented the outcomes of the “Itching for life – Quality of Life and Costs for People with Severe Atopic Eczema in Europe” study at a conference in Paris.
Atopic eczema has a long time been perceived as a superficial, trivial skin disease. However, the study found that the chronic and relapsing nature of atopic eczema can impact greatly on patient wellbeing and quality of life.
The study included 1,189 patients from all over Europe with severe atopic eczema. The interviews in the report draw a dark picture about patients’ standards of living as well as the high cost to tackle the disease.
“There is little awareness about atopic eczema. Even those who live with patients with atopic eczema do not understand the full impact it has on people,” EFA President Mikaela Odemyr said.
“Severe atopic eczema patients need support with the utmost urgency. We call on the medical and scientific community to join forces to better support patients’ with severe atopic eczema in their daily life challenges,” she added.
The study sets out some recommendations to EU policymakers, as well as to stakeholders from the healthcare and research field.
Public authorities do not take them seriously, the patients say, and call on EU policymakers “to increase the recognition of skin diseases, notably atopic eczema, as a serious chronic illness with a high social and emotional impact.”
Another burden for patients suffering from this disease is the way strangers may consider them. The survey suggests that EFA members ensure launch information campaigns about the disease.
The objective is to move away from the prejudice that atopic eczema is a contagious and self-inflicted disease.
Referring to other economic charges patients have to cope with to prevent their symptoms, the study proposes increasing reimbursement among member states and reducing red tape for patients.
People with severe atopic eczema spend extra money on health care expenses, on average €927.12 annually, and have additional spending on everyday necessities, such as personal hygiene which costs 18% more on average per month, the study emphasised.
Patients urge policymakers to facilitate their access to better and affordable healthcare combined with higher financial support from health insurance.
The study also suggests healthcare professionals not just focus on the skin symptoms but to pay more attention to the people living with eczema.
Interviewed patients do not understand why the biggest organ in the body is not of interest for research. They urge researchers to look for new solutions and call on the pharma industry to launch new clinical trials for new treatment options.
Social and emotional aspects of eczema
According to the survey, many patients (23%) do not have an optimistic view on their life with eczema, 45% had serious eczema symptoms at the time of the survey, and despite the care, they had almost every day dry or rough skin (36%), itchy skin (28%), cracked skin (17%) or felt their skin was flaking off (20%).
The study shows that 1 in 4 patients are sometimes unable to face life, especially those over 50, and patients dealing with severe skin conditions.
For 45% of the patients, the disease influenced their relationships, sexual life, and hobbies, the week before the interview. In addition, 38% of respondents noted they felt impaired at work because of their skin.
In addition to the physical aspect, the emotional burden cannot be ignored: 1 in 4 patients feel they cannot keep atopic eczema under control, itching drives them crazy (57%) and they feel guilty about scratching (39%).
Patients are constantly looking for information (70%) on new and more efficient treatments that would help them live better lives.
They believe more efforts are needed to improve the acceptance and understanding of the disease among public, healthcare professionals, national and EU policymakers and patients to better understand their own chronic condition.
With only 15% of the patients highly satisfied with their current treatment, patients and their families ask for more investment in research to develop better treatments to break the cycles and flare-ups that dominate the lives of patients.
Dr. Jean Paul Stahl, Professor of Infectious Diseases, commented, "Patients presenting an atopic disease are not recognized enough, as it is not life-threatening, or severe enough. But their life is deeply impacted by this disease, on a daily social point of view. Medicine, in general, doesn’t consider enough this point. It is what I define as an invisible handicap, or hidden handicap: a handicap that society doesn’t want to face with. It is important to organize advocacy, probably with links to other similar conditions, in order to push authorities to evaluate more the quality of life evaluations."
"It is already done in most of the European countries, but probably not enough. We need social research in this field to demonstrate the importance of the impact," he added.