The Burden of Living with Atopic Dermatitis

Atopic dermatitis (AD) or eczema is a common skin condition that creates a significant burden for those affected, as well as their family members. Physically, AD causes the skin to become red, scaly, Intro to Sarah Hackley: Patient and Caregiverweepy, and itchy. The itching and scratching can impact the quality of sleep, and when the patient is a child with AD, the sleep loss can affect the whole family. The effect of AD on sleep is significant and contributes to a higher rate of behavioral and school problems in children, poor work functioning in adults or parents, and increased daytime drowsiness in everyone. People with eczema report a lower quality of life than the general population or than people who are living with conditions like diabetes or hypertension (high blood pressure).

The emotional impact of eczema

Emotionally, AD causes a burden, too, as having a visible skin condition causes psychological distress, including frustration, anger, and embarrassment with one’s appearance. A child with eczema may experience bullying or exclusion, and adults may also experience the stigma of having AD. The quality of life scores of people with eczema include the mental health aspects. Therefore, people with eczema often have higher levels of anxiety, which is of particular concern as stress can trigger the itch-scratch cycle and set off a flare.

The cost of eczema

In addition to the physical and mental aspects, eczema also causes a burden of time and money. Caring for eczema includes the financial costs of treatment, time missed from work for doctors’ appointments, and many lifestyle changes, including using special soaps and detergents, modifying diets, removing carpets, and using clothing or linens made with all natural fibers. The lifestyle changes can affect the whole family, and making the changes can create a strain on a family’s budget.

Reducing the burden

Those living with eczema, and their caregivers, often need more than just treatment for the physical symptoms. Research has shown that educational and psychosocial support programs can reduce symptoms and stress associated with having eczema.

One clinical trial compared the effectiveness of a dermatologic educational program, relaxation training, cognitive behavioral training, and a combination of dermatologic education and cognitive behavioral training versus standard care in adults with eczema. After a year of the program, those who had some form of psychological training had significantly improved symptoms than the standard care or dermatologic educational group.

Finding support for our support systems

Parents of children with eczema frequently need education and support and joining a support and patient advocacy group, like the National Eczema Association, can provide both. A research project that evaluated the effects of educating parents on eczema found that children of parents who received a 2-hour educational session from a nurse had a decrease in the severity of their AD compared to those families who just received routine information at their doctor’s visit. Educational programs include instruction on the proper use of emollients and medications, and studies have shown that when parents have the proper education, the family’s quality of life and coping skills are increased and treatment costs are reduced.

Another way to reduce the burden of AD is by seeing a specialist – a dermatologist – rather than receiving care from a primary care physician. Research has shown that individuals with AD who receive care from a dermatologist had a decrease in the impact of eczema on the family and decreased out-of-pocket expenses.