Long considered a cornerstone of treatment for atopic dermatitis, topical corticosteroids play a sizable role in the patient journeys of a vast majority of people living with the condition. Despite the seemingly ubiquitous nature of corticosteroid use for atopic dermatitis, this patient-treatment relationship can sometimes be complex.

Findings from the 4th Annual Atopic Dermatitis In America survey, a syndicated research study from Health Union, and observations from AtopicDermatitis.net illustrate a community that has a great deal of concern about the physical and emotional impact of topical corticosteroid use. Of the survey’s 408 respondents, 96% have used topical corticosteroids, such as hydrocortisone, desonide, triamcinolone and clobetasol, at some point during their atopic dermatitis patient journey. Specifically, 59% currently use a topical corticosteroid, and 37% previously used one.

Dealing with Steroid Withdrawal Fears

While often helping to control a person’s atopic dermatitis and typically limited to daily use over a short time period, topical corticosteroids can result in a number of common side effects, including stretch marks, change in skin color and thinning of the skin at the application site. In fact, seven in 10 survey respondents who have ever used topical corticosteroids for their atopic dermatitis said they are at least “somewhat concerned” about thinning of the skin.

Respondents also seemed worried about another, less-discussed consequence of topical corticosteroid use: topical steroid withdrawal (TSW). TSW is the process of discontinuing these medications after the patient experiences topical steroid addiction (TSA). Experts estimate that TSA occurs in approximately 12% of people with atopic dermatitis who use topical corticosteroids. 

TSA is unlike typical addictions characterized by the compulsive need to use a medication. Skin symptoms during withdrawal from the steroids may be worse than they were before the treatment was initially started. The withdrawal process itself can be daunting and painful, often leading to red skin syndrome (RSS), when redness of the skin develops and spreads to other parts of the body.

More than half of survey respondents who have ever used topical corticosteroids for their atopic dermatitis said they were at least “somewhat concerned” about TSW or RSS. AtopicDermatitis.net patient advocate Ashley Ann Lora described her experience with TSW as “a mental battle as much as it is physical” that “had me on the most unstable, emotional roller coaster ride I had ever been on.”

A few years after enduring TSW in 2014, Ashley faced another difficult decision when a doctor tried prescribing topical steroids. She decided against it. “The uncertainties of what would happen after I use the steroids caused me more fear,” she said. “Sure I know it’ll clear me up quickly, but what will happen afterward?”

Low Satisfaction and Extended Use

Unfortunately, topical corticosteroid use is not easy to avoid when living with atopic dermatitis. On top of that, the time spent using topical corticosteroids is often extensive in the long run, despite individual treatment cycles typically lasting no more than two weeks. More than four in 10 survey respondents who have ever used topical corticosteroids said they have taken them – currently or previously – for more than five years.

And nearly half of respondents who have ever used topical corticosteroids have required the use of a higher strength version, with less than two-thirds of this group ultimately achieving skin clearance as a result.

Perhaps related to all of these factors – the extended use, side effects, potential withdrawal and fear – only 15% of respondents who have ever used topical corticosteroids said they are satisfied with using them.

For healthcare providers and pharma marketers alike, understanding the nuances of how people with atopic dermatitis perceive and process their treatment decisions, especially around topical corticosteroid use, can help improve healthcare experiences for these patients.

Engagement on Health Union’s growing portfolio of online health communities combined with large scale patient-reported data from its syndicated In America surveys can offer unique insight and understanding into nuances of the patient journey experienced by different groups of patients. Learn more about Health Union’s custom media, marketing research and clinical services that can help you create smarter, more effective solutions for patients and caregivers.