Eczema Program Specializes in Pediatric Population
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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