Atopic dermatitis (AD), the most common form of eczema, is a multifaceted chronically relapsing skin disease involving skin barrier function abnormalities and skin inflammation.1 In the majority of cases, AD presents in infants and children, but one-third of cases persist into adulthood. In the United States, 18 million adults (7.2%) and 9.6 million (13%) children younger than 18 years have AD, with 33% of children suffering from moderate to severe AD.2 The onset of AD is usually in early childhood, and it can impact the entire family. Furthermore, AD is increasingly recognized as a disease that often persists or begins in adulthood. As a result, AD can have a detrimental effect on patients’ lives and their families throughout the lifespan.3
It is associated with a poorer health-related quality of life and social, academic, and occupational impacts. AD also places a significant financial burden on patients, their families, and society. A recent report on the burden of AD placed a conservative estimate of the annual costs (direct and indirect) at $5.2 billion in the Unites States.3
The exact cause of AD is unknown. Therefore, the management of AD can be complex and often requires intensive education and treatment to control the disease. “AD is challenging at any age. It’s a complex chronic relapsing disease with pruritus as the key symptom. For patients with moderate to severe disease, it has a profound impact on patients/families’ quality of life. Despite significant advances in our understanding of the underlying pathophysiology (eg, skin barrier and immune abnormalities), we still cannot give the patient or caregiver some of the critical answers to their questions about the disease,” explained Mark Boguniewicz, MD, professor, division of allergy-immunology, department of pediatrics, National Jewish Health (NJH) and University of Colorado School of Medicine.
NJH’s Pediatric Eczema Program
Dr Boguniewicz, who came to NJH in April 1990 from Boston Children’s Hospital/Harvard Medical School, is one of the physicians specializing in NJH’s pediatric eczema program. “I am passionate about AD and our program,” he said. The program brings together a multidisciplinary team with specialized expertise in the diagnosis and treatment of AD. He told The Dermatologist that having a multidisciplinary approach is important in treating this skin disease. “Having a chronic or relapsing disease with significant pruritus, at times painful skin, ongoing sleep disturbance, other behavioral problems, often complicated by secondary skin infections, uncertainty about triggers, concerns, or misunderstanding of medications, requires more than just quickly making a diagnosis and handing the patient/caregiver a prescription.”
NJH, located in Denver, Colorado, has been treating patients with chronic illness for more than 100 years. Initially as a tuberculosis sanatorium, then as a national referral center for chronic steroid-dependent asthma, and continues to treat the spectrum of allergic/respiratory and immune disorders, according to Dr Boguniewicz, who noted AD and question of multiple food allergies as 2 of the most common reasons why patients come to NJH from around the country and occasionally from abroad. In the past, children would come to the center and live there for 1 to 2 years, which is why NJH has a school on its campus. Dr Boguniewicz said now patients come for 2-week stays, although some patients may come for shorter evaluations.
The Program’s Approach
The program strives for individualized care as much as possible. Children are evaluated by a team that includes physicians, nurse educators, behavioral clinicians, dietitians, rehabilitation specialists, and others on the Day Program unit (Figures 1 and 2). Patients are evaluated from 8 am to 5 pm, but may remain overnight to evaluate sleep, undergo a procedure, or may be admitted to inpatient status, for example, if acutely infected, explained Dr Boguniewicz.
Typically, patients undergo intensive skin care for the first 4 to 5 days, then it is important to step down to a more doable maintenance regimen while evaluating triggers, addressing scratching behavior, and other issues. Patients stay at the Ronald McDonald house in Denver, nearby hotels, or with friends or family if local. The multidisciplinary team meets with the patient/caregivers daily, has interval conferences including by phone with family members who could not come, and communicates with referring physicians back at the patient’s hometown. Patients are given a suggested Home Management Plan prior to leaving, which can be modified by their health care provider once they return home. “Several years ago, with my colleague Dr Noreen Nicol, we published the largest study4 to date using a validated outcomes tool looking at incorporating wet wrap therapy as an acute intervention in our multidisciplinary program (Figures 3 and 4). It showed not only immediate benefit but importantly lasting improvement 1 month after discontinuing this intervention,” he said.
Success and Challenges
“What is so striking is that for the vast majority of patients coming to our program, no matter how severe their eczema, what prior treatment they have been on (and we have seen them all, ranging from multiple systemic therapies to various nontraditional/alternative treatments), how infected their skin (and we have a high percentage that are MRSA [Methicillin-resistant Staphylococcus aureus] positive), patients tend to get dramatically better when our nurses take over initial skin care with the assistance of behavioral health clinicians, child life specialists, and other members of our team,” he said.
“You have to realize that so many [children] will scream or cry at the sight of a bathtub or with application of medication or moisturizer, but I cannot recall a child leaving our program who has not come to enjoy tub time with age appropriate toys or reading materials for what comes to be a therapeutic and relaxing experience,” continued Dr Boguniewicz. “The dramatic change in children’s personalities and behavior when they are no longer frantically scratching and bleeding and when they (and their caregivers) have slept through the night (Figure 5) is better reflected in their pre-/post-treatment photos than words.”5 He also emphasized that a well-meaning provider will often send off blood for food allergy testing and in patients with AD, their total serum IgE is often in the thousands, making results of specific IgE not very specific, and all too often the patient is told to avoid all 5, 10, 20, or even more foods that were positive.
He pointed out a paper published in the Journal of Pediatrics6 from NJH that showed approximately 8 of 10 foods that were avoided based on in vitro testing in children with eczema could be safely re-introduced when done under proper supervision.
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“As I teach our fellows in allergy-immunology, you go out to the supermarket and read labels and see what it’s like for a parent to have to avoid even one common food like soy before telling them that they should avoid multiple foods,” he said. However, you need to be able to first clear up a child’s eczema in order to properly challenge them, and not many centers can do that, yet this is tremendously important in improving the quality of life of our patients and families.”
The program is not without challenges. “Challenges are often the result of our current medical environment with insurance companies/gatekeepers not understanding the nature of a chronic severe pruritic illness with sleep disturbance etc and the rationale for sending a patient to our program—this is so much more than a trivial itchy rash,” he said. Additionally, “unlike the past, when we had months to work with our patients, now the clock is ticking and trying to not only heal the skin inflammation, but taper therapy and address triggers, behavioral aspects, sleep, [and so on] keeps the team very busy.”
Dr Boguniewicz is all too familiar with the barriers in treating children with eczema. “In many ways, the current approach to medicine in general is not conducive for caring for patients with chronic relapses disease (and when caregivers are often also terribly sleep deprived). Clinicians often do not have adequate time to spend with patients/caregivers to properly educate them about the nature of the disease, triggers, testing (and limitations of tests), treatments with risks vs benefits and prognosis, and also proper follow up,” he said.
Through research that included anonymous phone surveys (ISOLATE study)7, Dr Boguniewicz said we learned that patients/caregivers often delay using their prescribed medications, most often a topical steroid, for up to a week after a flare of their eczema has started. Therefore, on follow up, it is important to review what is going on, what medication is being used, how much, and where it is being applied. “[We should] not just assume something did not work and quickly give the patient the next prescription,” he said.
Education Plays A Vital Role
Dr Boguniewicz stressed the importance of providing patients/caregivers with as much evidence-based medicine as possible to help them make the best decision for their child. “Previously, we would only have to counter the anecdotal recommendations of a friend or family, but now we have to compete with all of the unfiltered information on the internet, and there are many unscrupulous people trying to take advantage of often desperate families, he said.
Future Outlook for AD in Children
When asked how new treatment options for AD are benefitting children, Dr Boguniewicz told The Dermatologist that “it’s great to have new nonsteroidal options. While topical steroids on balance have been extremely safe and effective, too many of our patients/caregivers will not use them even with proper education. In addition, the FDA has given the green light to study biologics, which really brings targeted therapy ‘from bench to bedside’ in adolescents and younger patients with severe AD.”
He also said that including children in early phase clinical trials is important in helping advance treatment options for the pediatric population. “As studying effects of a treatment early in the disease, might yield results very different from studying adults with chronic recalcitrant disease. In addition, an important concept to recognize is that of the atopic march, as a significant number of children with AD go on to develop allergies and asthma and much of the allergic sensitization may be occurring very early through the abnormal skin barrier.”
Dr Boguniewicz is optimistic about the future landscape of AD treatment that goes beyond new drugs emerging. “It is also the recognition by the FDA that children need to be included [in clinical trials] when developing new therapies.” He was part of a consensus group, spearheaded by Elaine Siegfried, MD, professor of pediatrics and dermatology, Saint Louis University, that submitted a draft guidance document Developing Drugs for Treatment of Atopic Dermatitis in Pediatric Patients (≥3 months to <18 years of age): A Draft Guidance for Industry to the FDA and Pediatric Dermatology.
Research at NJH also continues as it is the key site for the National Institutes of Health sponsored Atopic Dermatitis Research Network with research studies looking at various disease phenotypes, genetics, novel skin barrier abnormalities, microbiome, and novel therapies. “Colleagues in other centers that we collaborate with are looking at systemic aspects of AD and nonallergic comorbidities, [it is] a very exciting time to be involved in AD research, he said
For more information on NJH’s pediatric eczema program and the services it provides, visit https://www.nationaljewish.org/treatment-programs/directory/eczema-atopic-dermatitis.
1. Simpson EL, Irvine AD, Eichenfield, LF, Friedlander SF. Update on epidemiology, diagnosis, and disease course of atopic dermatitis. Semin Cutan Med Surg. 2016;35(5 suppl):S84-88.
2. Eczema facts. National Eczema Association website. https://nationaleczema.org/research/eczema-facts/. Accessed January 21, 2018.
3. Drucker AM, Wag AR, Li W-Q, Seveston E, Block JK, Qureshi AA. The burden of atopic dermatitis: summary of a report from the National Eczema Association. J Invest Dermatol. 2017;137(1):26-30.
4. Nicol NH, Boguniewicz M, Strand M, Klinnert MD. Wet wrap therapy in children with moderate to severe atopic dermatitis in a multidisciplinary treatment program. J Allergy Clin Immunol Pract. 2014;2(4):400-406.
5. Boguniewicz M, Nicol N, Kelsay K, Leung DY. A multidisciplinary approach to evaluation and treatment of atopic dermatitis. Semin Cutan Med Surg. 2008;27(2):115-127.
6. Fleischer DM, Bock SA, Spears GC, et al. Oral food challenges in children with a diagnosis of food allergy. J Pediatr. 2011;158(4):578-583.e1.
7. Zuberbier T, Orlow SJ, Paller AS, et al. Patient perspectives on the management of atopic dermatitis. J Allergy Clin Immunol. 2006;118(1):226-232.