Survey highlights quality of life sentiment among patients with AD

A recent survey shows that only half of patients are satisfied with their atopic dermatitis (AD) treatment. Yet only around one-third regularly discuss quality-of-life concerns with their healthcare providers.

Between December 2019 and April 2020, 408 adults answered an 80-question online survey sponsored by Health Union, a patient resource that supports healthcare communities including AtopicDermatitis.net.

“It’s telling that only 49% are satisfied with the care they're receiving,"¹ says Sara Hayes, executive director of community development at Health Union. "Often, satisfaction with your physician or healthcare team correlates strongly to how well-controlled you feel on your treatment plan."

Among other key findings, only 36% of respondents report that their healthcare providers regularly discuss the quality-of-life impact of the disease.

"That's a big thing for healthcare professionals to understand — they need to ask more about how this condition is impacting patients day-to-day," she says.

Only 56% of respondents reported completely agreeing with their healthcare provider on the severity of their disease. While clinicians typically gauge severity through clinical measures such as body surface area, Hayes says, they should also factor in quality-of-life impact.

"It's a little disheartening for people to be told something is mild when they feel it's consuming their lives," Hayes says.

As with other autoimmune diseases, no two patients’ experiences are identical. However, there are commonalities, she says. For example, the top symptom reported by patients is intense itching (79%), which often leads to sleep disturbances.

Patients feel misunderstood, she adds.

“We've also heard stories of people who find it embarrassing when their skin starts to become weepy and oozes, and sometimes can bleed,” she says.

These open wounds can cause social anxiety and invite infections.

“People talk about how hard it is to go on a first date when your hands are covered in eczema," she says.

It's also important that patients discuss triggers with their peers and healthcare providers, Hayes says.

"Not everyone realizes that there are certain triggers for their eczema. Some people find that clear correlation. But not everyone can find a connection to some life event, such as something they eat or wear," she says.

Even sweat can trigger flares, she adds, and patients must know what factors to avoid.

Fearing side effects

Elsewhere, the survey reflects high levels of topical corticosteroid (TCS) use and associated concerns. For example, 42% of patients report continuous TCS use for five years. Patients do not necessarily use topical steroids daily, Hayes explains, but they keep a prescription continually refilled to use intermittently for each flare.

Meanwhile, more than half of respondents worry about topical steroid side effects, addiction and withdrawal. Experts estimate that approximately 12% of patients with AD who use topical steroids develop topical steroid addiction (TSA).2 Instead of having a psychological compulsion, patients must continually use TCS or their eczema flares. During topical steroid withdrawal (TSW), symptoms may worsen beyond pretreatment levels. This process often leads to red skin syndrome (RSS), in which painful redness develops in the application area and spreads elsewhere. Patients can become bedbound. Some patients describe this as the lowest point in their lives, she says.

Hayes finds it equally concerning that 31% of respondents have never heard of TSW.

“When people do hear about it,” she says. “I don’t know that they understand the severity of topical steroid withdrawal.”

Not surprisingly, following physicians' orders is a “huge topic” in the AD community, she says. While many patients plan to stop using TCS before their skin becomes somewhat addicted, she says, patients don’t necessarily consider the future — they want relief now.

Patients tend to follow their physicians' instructions, she says. "But when they don’t see results, they’ll go back to the doctor and perhaps get a higher potency steroid. That pattern repeats until they’re using very strong steroids." In the survey, 47% of patients required a higher-strength topical steroid, although less than two-thirds of this group ultimately achieved skin clearance.

Furthermore, only 15% of respondents are satisfied with TCS. “That’s an awfully low number. Many people consider atopic dermatitis ‘just eczema.’ I don’t know that many people have a full understanding of how much it impacts patients’ quality of life.”

Some patients may skip topical steroid doses or avoid TCS entirely. “There’s a good portion of the community who have that fear of the potential side effects. So they use them only sparingly and absolutely when needed."

On a positive note, 39% of respondents actively seek information about the latest AD treatments. The top resources they use include healthcare providers, Internet searches and AD-specific websites. Although many types of treatments are under development, says Ms. Hayes, patients find new biologics particularly exciting.

"We see that 42% of respondents feel that they've done everything they can, and their condition is still not controlled. So seeing new research happen, and potentially new drugs being approved in the future, is very exciting for them because they've basically run out of options."

Disclosures:

Ms. Hayes is executive director of community development with Health Union.

References:

1. Health Union. Atopic Dermatitis in America 2020. Published May 2020.

2. Fukaya M, Sato K, Sato M, et al. Topical steroid addiction in atopic dermatitis. Drug Healthc Patient Saf. 2014;6:131-138.