Describe the physical and emotional journey of a moderate to severe (adult) atopic dermatitis patient in Germany.
"Atopic dermatitis (AD) is a chronic, pruritic inflammatory skin disease." The pathology of the disease is driven by genetic and environmental factors and is characterized by periods of acute symptom worsening or "flares" followed by dormant periods. Approximately 10,000 people in Germany between the ages of 18-65 were surveyed, and it was revealed that 2.2% of adults in Germany are affected by AD. Women are more prone than men with the peak adult occurrences of AD occurring between 35-44 years of age.
After extensive research I was unable to find information on payer/insurance influence in Germany. There were, however, direct quotes from patients in relevant blog posts. Unfortunately, as most are in German, it is difficult to pull out exact quotes from the information publicly available with the degree of personal impact potentially being lost in translation. With that said, the blog posts do provide us a glimpse into the personal experience of adults living with AD.
AD is a chronic inflammatory skin disease that is driven by genetic and environmental factors. The disease is characterized by periods of acute symptoms commonly referred to as flares which are followed by dormant periods. There are several treatments for AD including topical corticosteroids, adjuvant therapy, and therapeutic patient education.
Approximately 10,000 people in Germany between the ages of 18-65 were surveyed where the results revealed that 2.2% of adults in Germany are affected by AD.
Definition and Symptoms
As an inflammatory skin disease "AD lesions are characterized by itchy erythematous papules with dry skin, excoriations, and severe exudate. Chronic AD is associated with areas of thick, scaly skin (lichenification) and severe lesions." The underlying cause of AD is genetic which is further aggravated by environmental factors. In fact, chronic airborne-patterned AD typically presents in patients that are sensitive to pollen and other airborne allergens.
Typically the disease manifests in early childhood with the majority of cases occurring before the child reaches the age of five and up to 60% of cases occurring within the first year of life. Of all AD cases, 67% present with mild severity.
Where a patient presents with symptoms, their physician will first access the patient's clinical history, looking for patterns that would indicate they were suffering with a chronic case.
With genetics being a primary trigger, doctors also look to see if the patient has a family history of the disease and whether there is a history of atopy. Following this is a physical exam and evaluation to assess the specific morphology or typical distribution of the eczema, which is different in adults as opposed to children and teens.
When undertaking the physical examination, the doctor is looking for lesions and areas of skin thickening. A patch test will also be conducted to rule out AD or any other allergies. Frequently, AD presents intermittently with periods of latency and then flares. There is usually diffuse and symmetrical dermatitis with eczema of the face. It is commonly unevenly distributed on the trunk and limbs. Many adult patients have a severe form of the disease making it difficult to treat.
The doctor will also perform a prick test to check for a "history of immediate allergic reaction" or if it develops over time after exposure to allergen in the prick test. The test is recommended particularly in determining hand eczema where there is a history that is suggestive of protein contact dermatitis. If there is intense widespread reddening, a skin biopsy is advised to test for chronic AD as it typically cannot be cured by traditional means.
AD treatment focuses on hydration through the use of a topical ointment and “avoidance of specific and unspecific provocation factors.” Anti-inflammatory treatment is based on glucocorticosteroids, and topical calcineurin inhibitors (TCI) which are commonly used to manage the exacerbation of symptoms. The main therapy is topical corticosteroids, but TCI tacrolimus and pimecrolimus are preferred in certain locations.
In severe refractory cases, systemic immune-suppressive treatment is an option if the more traditional methods have failed. Where "microbial colonization" and superinfection are documented, additional antimicrobial treatment can be justified. “Adjuvant therapy includes UV irradiation preferably with UVA1 wavelength or UVB 311 nm.” For patients who also have a diagnosed food allergy dietary recommendations may also be given that are individualized to that patient.
Quality of Life and Psychological Treatment
Many patients with AD suffer physically and mentally. Specific environmental factors exacerbate the symptoms of AD and some occupations will also expose people to stimuli that negatively impacts their condition. An example is a job that requires frequent hand washing or the handling of substances that irritate the skin, such as a hairdresser.
AD significantly effects all psychological aspects of life. The results of therapeutic patient education (TPE) on AD was evaluated around the world, including Germany. Patient education was approached by individual and group therapy sessions. Individual sessions included the participation of two experts, a physician and a nurse. Group sessions ran around 2 hours and included approximately 10 patients of a similar age. GADIS results illustrated that, in comparison to standard care, six group sessions per week resulted in the sustained reduction in the severity of symptoms as assessed with the "SCORAD index", a clinical measure of the impact of AD (the Scoring AD index). Patients also reported improvements in their overall quality of life score.
However, funding such programs is problematic. Most of the TPE programs were set up as personal initiatives without direct funding. Funds are nearly nonexistent and usually are linked to grants from patient associations or pharmaceutical companies. Patient associations participate in fundraising by using specific criteria. In Germany, the Federal Ministry of Health recognized eczema centers and atopic schools. The programs also depend on the experts who run the meetings being able to build the motivations of team members to become involved and actively engaged.
One German cross-sectional study indicated suicidal ideation was high (21.3%) among patients with AD. Significant factors that predicted suicidal ideation were high severity of symptoms, younger age, and family history. Statistics showed that 3.9% indicated a suicidal crisis while 8.8% had a depression score. 26% presented with anxiety as a result of AD. Depressive symptoms increased with the severity of the disease. 6.6% of patients with AD attempted suicide while 21.5% reported recent suicidal ideation. 12.7% reported thoughts of suicide.
Psychiatric screening during the treatment process to assess suicidal tendencies and depression symptoms is recommended.
I was able to locate some blogs of Germans discussing life with AD. One blog, written in German, consisted of reviews from more than 4 patients discussing how they were coping and what treatment they were getting Atopic Dermatitis. Another, also in German, discussed symptoms of AD. There was an additional blog that talked about symptoms and solutions that people with AD were discussing. One final blog talked about the onset of symptoms of AD. These blog posts were from people who were discussing their problems, fears, and how they are coping with the disease.
AD is a chronic inflammatory skin disease that impacts patients physically and mentally. Depending on the severity it can have serious implications for suicidal ideation and suicide attempts. Studies in Germany showed that suicidal ideation was high at 21.3%. The severity of AD correlated with depressive thoughts with German patients. 2.2% of 10,000 people surveyed in Germany from the ages of 19-65 said that they had AD.