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"Medical Journeys" is a set of clinical resources reviewed by physicians, meant for the medical team as well as the patients they serve. Each episode of this journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.

The management of atopic dermatitis has improved dramatically over the last few years, thanks to better understanding of this chronic inflammatory skin disease as well as more effective therapies. In spite of this, however, poor adherence to treatment remains a barrier to optimal control.

This relapsing, remitting disease -- characterized by eczematous lesions, erythema, and pruritus -- can have a negative impact on quality of life, and is estimated to affect 15-20% of children and 1-3% of adults worldwide. Why aren't more patients sticking with the recommended treatment plan?

There is strong on patterns of non-adherence among patients with atopic dermatitis and for ways to improve adherence, said the authors of a 2021

"What's needed most is better education among physicians who treat atopic dermatitis on treatment adherence strategies and how to effectively implement them into clinical practice," concluded Heather L. Tier, MD, of the Center for Dermatology Research at the Wake Forest School of Medicine in Winston-Salem, North Carolina, and colleagues.

Patient adherence to topical therapy within the first few days of beginning the treatment regimen, and continues to fall over time. Patients may stop skin care regimens or discontinue recommended anti-inflammatory medications. Those with more severe disease may be wary of systemic therapies that are immunosuppressive and increase the risk of infection or that have renal or hepatic toxicity.

The reasons for poor treatment adherence in atopic dermatitis are many, but clinically the common red flag is unresolved symptoms. Not surprisingly, patients who don't adhere to treatment often pretend otherwise.

"It's hard for the patients and the caregivers," said Amy S. Paller, MD, chair of the Department of Dermatology and director of the Skin Biology and Diseases Resource-Based Center at Northwestern University Feinberg School of Medicine in Chicago. "I do have some patients who admit that they're not doing or not doing enough, but the majority will tell me they're adherent."

Ongoing Patient Education Key

Experts agree that robust is the key to keeping treatment on track. Forging a trusting relationship with the patient/caregiver is also essential, along with addressing any concerns about treatment side effects and costs, and creating a straightforward treatment plan that is based on shared decision-making. Scheduling also improves adherence.

"The most effective clinical cocktail is a mixture of disease basics, including skin care, safety, and efficacy of available therapies, expected natural history, potential co-morbidities ... and hope," said Robert Sidbury, MD, MPH, chief of the Division of Dermatology, Department of Pediatrics, at the University of Washington School of Medicine and Seattle Children's Hospital.

Added Steven Feldman, MD, PhD, professor of Dermatology at the Wake Forest University School of Medicine: "Establishing a sense of trust in the healthcare provider and holding patients accountable is the foundation of achieving good adherence."

In addition, since atopic dermatitis is a complex disease, "most patients require more than one visit to an experienced professional to feel prepared to manage their disease effectively," noted Dawn M.R. Davis, MD, professor of Dermatology and Pediatrics at the Mayo Clinic in Rochester, Minnesota.

"Placing the unique background and experience of the patient front and center is critical to adherence," said Raj Chovatiya, MD, PhD, director of the Center for Eczema and Itch at Northwestern. "A treatment plan may seem perfect to the clinician, but without a clear understanding of the needs and motivations of the patient, it may not be such a 'perfect' plan, and may thus have low adherence."

At the initial visit, after a big-picture discussion, Chovatiya asks patients to describe how the disease has affected them. The patient then guides the discussion based on the specific issues that matter most. "This can include the signs, symptoms, treatment, long-term course of the disease, costs, or simply, the impact that it has on their day-to-day life," Chovatiya explained. This type of conversation helps build trust, he noted.

Paller takes the same approach. "When we as physicians meet a patient or caregiver for the first time, the first thing we need to do is warmly brief them and then listen to them about the history of the disease and the impact on their life. After that, you can hone in on the individual patient and what you think is needed, and put forward the suggestion that a treatment plan is developed through shared decision-making."

Written Treatment Plan

All the evidence suggests that a written treatment plan, customized with input from each patient, should be used routinely, said Jonathan Silverberg, MD, PhD, MPH, director of Clinical Research and Contact Dermatitis at George Washington University School of Medicine and Health Sciences in Washington, D.C.

"I would argue that treatment plans are essential in terms of managing patients' long-term treatment," he added. "Written documentation of a treatment plan is ideal in order to address the use of multiple topical therapies, complex regimens, treatment versus prevention of flares, and the use of steroidal medications together with non-steroidal medications."

Once the treatment plan is nailed down, ask the patient for a verbal repeat of the information to determine whether he or she really understands, Silverberg advised. And make sure the patient receives appropriate quantities of topical medication, another factor that can sabotage the best-laid treatment plans. "Many of the treatment options come only in small-size tubes that simply aren't sufficient for patients with more extensive needs," he explained.

Prescribing multiple topical medications -- one for the face, one for the body, and one for the difficult-to-treat areas -- is common in atopic dermatitis, but can present a challenge for most patients. Experts advise keeping the treatment regimen as simple as possible.

"Treatment is an enormous burden for the patient, and it can be difficult to understand how to do it correctly, especially when you have more than one medication," confirmed Elaine C. Siegfried, MD, professor of Pediatrics and Dermatology at Saint Louis University School of Medicine in Missouri.

Polypharmacy often results when a physician tries to avoid the use of stronger topical corticosteroid formulations, Silverberg noted. "We only prescribe stronger ones when we absolutely need to and prescribe weaker formulations to minimize side effects whenever possible. But that's complicated for patients."

'Steroid Phobia'

Corticosteroids serve as the mainstay of anti-inflammatory therapy in atopic dermatitis, and have a relatively long history of efficacy and safety associated with their use. Unfortunately, many patients and caregivers continue to have negative feelings about using them -- a phenomenon commonly referred to as "steroid phobia."

Clinicians can inadvertently contribute to that by advising patients to arbitrarily limit the amount or duration of product use, explained the authors in a 2017 on the management of atopic dermatitis for pharmacists. Under-dosing and early treatment discontinuation can lead to uncontrolled atopic dermatitis and potentially inappropriate escalation to second- and third-line therapies, the team said.

Paller said she takes a proactive approach to steroid phobia by routinely raising the issue -- even when caregivers don't. "What parent doesn't have some worries about their child using steroids on a chronic basis?" she said.

The caregivers of children with atopic dermatitis tend to be particularly cautious about treatment, agreed Silverberg. "And rightly so," he emphasized. "The youngest patients are often more vulnerable to the adverse events since there is greater absorption through the skin than in adults. And while patients generally tend to recover well from the adverse events, we also worry about patients potentially experiencing adverse events or harms in their formative years that could potentially have long-terms impacts on their development. We would like to avoid that at all cost."

A discussion of the potential side effects of treatment should include all classes of drugs. While non-steroidal topical treatment options have reduced the risk of thinning of the skin associated with prolonged topical steroid use, for instance, they still carry the potential for adverse events. Each has its own mechanism of action, noted Silverberg. "We have to think about each drug separately."

Although adherence rates tend to decrease rapidly over time, anticipation of a scheduled follow-up visit or other contact with the clinician can increase the patient's sense of accountability and lead to improved treatment adherence.

In a randomized controlled of adherence and outcomes in pediatric atopic dermatitis, an extra office visit increased adherence at 1 week and led to disease improvement that suppressed the risk of non-adherence later in the month.

Between office visits, Paller keeps in touch with patient caregivers by email, noting that this is particularly helpful when improvements in symptom severity mean that treatment needs to change. "My patients email me all the time and we go back and forth. I encourage them to do that, but I don't know that that's practical for most physicians," she said.

Paradoxically, the treatment plan that's created at the first visit -- when most of Paller's pediatric patients present in a flared state -- "doesn't necessarily tell the caregiver what to do in 2 weeks when they're better, or what to do a month later when they need to maintain," she pointed out. The fact that the disease course and response to treatment cannot be predicted at that first visit "is one of the big challenges of dealing with an unpredictable disease such as atopic dermatitis."

In the end, even after everything possible has been done to maximize disease control, adherence to atopic dermatitis therapy will continue to vary patient to patient.

Feldman feels strongly that we shouldn't blame patients for poor adherence. "Physicians need to take responsibility for making the right diagnosis, prescribing the right treatment, and encouraging good adherence."

"Some are more diligent in following the action plan than others," Silverberg said. "Some will follow it to the letter, and others will do their own thing. But best practice guidelines recommend that we empower patients with the tools to help them optimize their clinical response to therapy."

Read previous installments in this series:

Part 1: Atopic Dermatitis: Reasons for Optimism

Part 2: Atopic Dermatitis: The Latest on Diagnosis and Assessment

Part 3: The Many Ways to Measure the Severity of Atopic Dermatitis

Part 4: Case Study: Why Is This Young Boy's Atopic Dermatitis So Resistant to Treatment?

Part 5: Atopic Dermatitis Has Myriad Life-Altering Comorbidities

Part 6: Topical Therapies for Adult Atopic Dermatitis