The Burden of Living with Atopic Dermatitis
Atopic dermatitis (AD) is a common skin condition that creates a significant burden on those who are affected by it, as well as their family members. Physically, AD causes the skin to become red, scaly, weepy, 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 AD 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).
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 AD may experience bullying or exclusion, and adults with AD also experience the stigma of having AD. Quality of life scores of people with AD include the mental health aspects, and people with AD have higher levels of anxiety, which is of particular concern as stress can trigger the itch-scratch cycle and set off a flare of AD.
Time and money
In addition to the physical and mental aspects, AD causes a burden of time and money. Caring for someone with AD 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
People dealing with AD and their families need more than just treatment for their physical symptoms. Research has shown that educational and psychosocial support programs can reduce AD symptoms and stress associated with having the skin disease.
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 AD. After a year of the program, those who had some form of psychological training had significantly improved symptoms of their AD than the standard care or dermatologic educational group.
Parents of children with AD 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 AD 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 AD on the family and decreased out-of-pocket expenses.
Have you been diagnosed with atopic dermatitis?