14 September is World Atopic Dermatitis Day.
Atopic dermatitis is a chronic inflammatory dermatosis with a recurrent course accompanied by pruritus, which can coexist with other atopic diseases, so a multidisciplinary and holistic approach to each patient with this disease entity is necessary.
The prevalence of AD among children reaches 15-20%. The development of AD occurs due to the interaction of genetic factors, environmental factors, skin barrier damage and immune system disorders. In more than 90% patients, the first symptoms appear by the age of 5 years. The disease definition implies that it is a chronic dermatosis with remissions and exacerbations. In approximately 10% patients, AD persists into adulthood.
Among the recommendations arising from the report 'Situation of adults with atopic dermatitis in Poland' prepared by the Amicus Foundation in 2020, we find:
"Development and introduction of a model for comprehensive and coordinated patient care, which will include specialist consultations (dermatologist, allergologist, pulmonologist, etc.) and psychological care. As part of the model, it is necessary to designate and define the role of the coordinator of the treatment process". Unfortunately, the situation has deteriorated considerably recently, requiring urgent improvement and implementation of the recommended changes.
The quality of life of AD patients is lower than that of patients with type I diabetes.
– In patients with AD, numerous emotional and psychological disturbances are observed, such as avoidance of life activities (school, employment, social life, sport, etc.), adaptation disorders, anhedonia, tantrums and aggression, high risk of developing depression, moderate to low risk of suicide, sleep disturbances, mainly due to itching of the skin. The need for systematic topical treatment, due to the smell and consistency of the ointment and, above all, the time-consuming nature, also does not improve the patients' quality of life. Consequently, in children, adolescents and adults alike, there can be a significant reduction in contacts and social ties. It is recognised that the quality of life of AD patients is lower than that of patients with type I diabetes. - comments Prof. Joanna Narbutt in the Amicus Foundation report 'Situation of adults with atopic dermatitis in Poland'.
It is currently estimated that as many as 30-40% patients with skin conditions require psychiatric or psychological care. Unfortunately, according to the report, as many as 86% patients have never been offered a psychological or psychiatric consultation as part of their treatment. Almost 91% of the study participants feel embarrassed about their skin appearance (24% very strongly, 28% strongly, 39% a little).
Prof. Irena Walecka emphasises how much patients' social functioning is affected by atopic dermatitis: - Adult patients are less productive at work and children and adolescents are less productive at school due to chronic sleep deprivation, associated irritability and fatigue, and numerous sickness absences. In family life, too, the disease causes many restrictions, for example in terms of the necessary daily rigours of care, the medication used and the associated additional expenditure from the household budget, or restrictions on leisure activities or certain sports. All these restrictions generate in some patients low self-esteem, lack of acceptance of their bodies, social withdrawal and lack of coping skills, so it seems that society should pay attention to the fate, needs and problems of people affected by atopic dermatitis.
Significant psychological support from the moment of diagnosis
21 September marks the start of online meetings for the third edition of the programme's support group "Psychologist For The Skin", implemented by the Amicus Foundation under the Honorary Patronage of the Ombudsman for Patients and Medical Centre for Postgraduate Education in Warsaw.
The online group meetings are aimed at all adults who are struggling with the emotional difficulties associated with experiencing a skin disease. The organisers invite people who are having difficulty taming their illness, problems in daily functioning, social and professional difficulties. The support group is for all those who want to learn how to cope better with their skin disease in terms of the emotions they experience, are willing to participate in weekly meetings in an atmosphere of mutual respect and security, and share their experiences. The meetings will be led by psychologist Agnieszka Bartczak.
Here are some of the contributions from participants in previous editions:
– I'm glad there is such a place on earth, that there are people who can help me.
- This group is the best thing I could have done for my psyche.
- Thanks to the group work, I opened up to talking about the illness with friends.
- Influenced by the group, I started to keep an eye on myself - taking my medication regularly, lubricating myself, because that's what I'm influenced by having AD.
- I have suffered from AD for thirty years. For the first time I was able to meet people who have similar
problems, concerns and difficulties in living with the disease.
- The group made me get motivated and I went to the doctor. I am getting treatment and I am happy.
At all times, people with chronic skin conditions have the opportunity to receive free online psychological consultations through the 'Psychologist for Skin' programme.
Registration: www.psychologdlaskory.pl
- Unfortunately, due to the pandemic, many more people with atopic dermatitis and other chronic dermatoses in a more severe condition are coming to our Foundation. Patients require comprehensive support. - says Dagmara Samselska, President of the Amicus Foundation and adds. We refer them to clinical centres. For psoriasis patients, we have set up the PSOs psoriasis helpline, which we will soon expand to support patients with other chronic dermatoses and people with psoriatic arthritis. The pandemic has made it extremely challenging for chronically ill people to seek medical help. Our Foundation strives to meet the needs of these patient groups and support them in overcoming barriers to accessing effective treatment that is seemingly available and reimbursed.
Psychologist for the Skin programme
The programme aims to build a comprehensive psychological support system for people with chronic inflammatory skin diseases - such as psoriasis, AD, urticaria CSU and hidradenitis suppurativa, among others. More than 60% people with chronic dermatoses suffer from depression. Patients are also accompanied by other psychiatric conditions, which have a huge impact on adherence to therapeutic recommendations, but also on efforts to improve physical health and thus improve quality of life. Unfortunately, these diseases do not spare children either, for whom it is particularly difficult to function with a skin disease, especially since, due to a lack of social awareness, children face dramatic manifestations of stigma and discrimination on a daily basis.
For this reason, the 'PSYCHOLOGIST FOR SKIN' programme is being implemented and developed, whereby people with dermatological diseases will in future be able to benefit from a psychologist trained in the programme by eminent experts, as well as online support groups and, later, groups set up at dermatology clinics.
Registration and information about the 'Psychologist for Skin' programme: www.psychologdlaskory.pl
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More information:
Dagmara Samselska, d.samselska@amicusfundacja.org, 695 728 288