Living with Atopic Dermatitis: More than only skin deep

Results from Atopic Dermatitis In America 2018, a recent Health Union research study of over 400 people living with atopic dermatitis or atopic eczema, indicate the condition is much harder to manage than others may believe.

Atopic dermatitis (AD) is unpredictable, not only bringing physical symptoms, but also a worry of getting worse, anger and frustration, and impacting one’s self-confidence and clothing choices. Often people think of AD as just a skin condition, but people living with the condition, like AtopicDermatitis.net writer Jennifer Martin, know it’s more than what appears on the surface.

“When you have a disease on the outside like atopic dermatitis, you may be literally wearing your symptoms on your sleeve,” Martin writes. “It’s hard to have a condition that can be observed so publicly.”

The emotional and social impact of the condition seems to only exacerbate the struggles felt by people with AD while they’re making treatment decisions. Atopic Dermatitis In America 2018 revealed that just over half of respondents agree with their doctor on the severity of their condition, nor feel that their HCP understands their questions and concerns or clearly explains their treatment options.1

While those who see a dermatologist are more comfortable discussing all aspects of their atopic dermatitis and are more likely to agree on its severity, their counterparts who see a primary care physician feel less so.1,2 Regardless of the type of physician seen, and the relationship they have, only nine percent of respondents feel their AD is controlled. Similarly, those using a branded medication report low satisfaction with treatment.

Perceptions of control and satisfaction with treatment may be related to a myriad of circumstances:

  • Fifty-five percent of patients experienced an onset of atopic dermatitis during their childhood or adolescence, with many having been diagnosed for more than 20 years. These people who have been diagnosed for over 20 years are more like to have 50% or more of their body covered and ranked “Very Severe” on the POEM scale.3
  • Over ½ of survey respondents had experienced 10 or more flares in the past year, with 45% of respondents currently experiencing a flare at the time of the survey. Symptoms result in patient frustration with trying to manage or find the proper treatment plan.
  • Ninety-two percent of respondents live with other related health complications such as allergic contact dermatitis, eye problems, and a mental health condition.

The study illuminates the idiosyncratic and often unrecognized challenges related to living with atopic dermatitis. While the process of taking control of the condition and finding relief can be burdensome, an online health community like AtopicDermatitis.net can lead partners to uncover opportunities to more effectively reach and engage this population.

1Top 2 box on a 7-point scale.

2Dermatologist and PCP significantly different, p<.05

3Patient-Oriented Eczema Measure (POEM), The University of Nottingham