Itch “Schools” Provide Patient-Facing Education and Support
Clinicians and researchers who specialize in eczema and atopic dermatitis (AD) know that in some cases the itch associated with these conditions is so insidious that it can negatively impact every aspect of a patient’s life from school, to play, to work, to sleep; and that when it disrupts the sleep cycle—especially in combination with all of those other effects—emotional distress can ensue.
Eczema expert and dermatologist Gil Yosipovitch, MD, wanted to do something more than is typically done in the conventional clinic setting to help these patients who endure the relentless effects of AD itch. He borrowed a page from German clinicians who developed an educational program specifically designed to ease the burden of eczema patients and caregivers.1 In Germany, a task force on educational programs for atopic eczema (AGNES, Arbeitsgemeinschaft Neurodermitisschulung) for children, teenagers, and parents was launched, and later a multicenter, randomized controlled clinical study found that education programs improve the ability to cope with AD in children and their parents.2,3 This model inspired Dr Yosipovitch to found a similar program, which he called “The Coping School.” This initiative made him the first US physician to introduce an educational program for AD patients and their caregivers to help them cope with chronic itch.
Approximately 40 patients and family members participated in the program. He offered The Coping School at Temple University where he was previously the chairman of the department of dermatology. While at Temple, he directed the first translational, clinical, and research center dedicated to the study of chronic itch in the United States.
Education and Support
“We offered this education program to interested patients with AD and their families. The program comprised 3-weekly, 2-hour sessions that addressed proper skin care led by a professional team consisting of a dermatologist, a psychologist, a nutritionist, and a nurse practitioner,” explained Dr Yosipovitch, who is the director of The Itch Center at the University of Miami Miller School of Medicine.
He noted that he received positive feedback from the patients and families who participated in the educational and coping support program at Temple, and he is making inroads into starting a similar program in Miami. “We do a good job of raising awareness of AD among our colleagues, but we need to address itch and explain its widespread effects. That is why a lot of my publications deal with how to assess itch in a clinical setting, and how to understand and help the patients in terms of coping with itch,” he said. “It’s important that our colleagues know that [itch treatment] is not just about medication; it’s also about relaxation techniques because stress plays an important role in aggravating itch. Identifying stress reduction techniques that work, and introducing them to our patients really helps,” he explained.
Dr Yosipovitch planted the seed, now other programs are sprouting up across the country. The Dermatologist spoke with professionals who are facilitating these programs, and the consensus is that patients welcome the help. For instance, at Boston University School of Medicine, the director of pediatric dermatology, Margaret Lee, MD, PhD, is in charge of the AD PEER Clinic (Peer Education, Empowerment and Resilience Clinic). Prior to that, she ran an AD educational program at Boston Children’s Hospital.
Dr Lee combined individual patient visits with a group hands-on experience and group education and peer support. “Generally, patients would attend 2 consecutive sessions, ideally 2 weeks apart so that everyone could see how others in the same group did after 2 weeks,” she explained.
Families could feel various over-the-counter topicals, try wrap strategies, and take home samples; new participants got educational materials, and everyone had an opportunity for discussion (Figure).
At Boston Medical Center, the program will start with monthly sessions, attended by Dr Lee, and a dermatology nurse; and there are plans to include a collaborating pediatric psychologist in the near future.
“I would love to have an allergist and nutritionist regularly participating in select sessions, as well,” said Dr Lee.
Benefits and Challenges
Improved compliance is among the benefits associated with these programs, according to Dr Lee. “Thoroughly educating patients and families about why they must do what we advise, and developing individualized strategies is associated with improved compliance. I think it also helps to have a lot of hands-on teaching and exposure to various skin care products because this improves confidence, which improves compliance, and is less expensive and frustrating than trial and error at home,” she explained.
There are also numerous challenges to starting these programs, which is why there are not more of them. “Clinics and hospitals aren’t designed for group visits, and certainly not for individual-group clinics like mine, where several private clinic rooms are found in close proximity to a room large enough to accommodate several families, supplies, and staff,” said Dr Lee.
What’s more, the startup time and expertise required to develop and run new programs is significant, and naturally there are budgetary issues. “I don’t get paid for participating in the group portion of the clinics, but I can still be enthusiastic about my time being well spent because I learn so much about my patients in the group setting; it strengthens our therapeutic alliance and optimizes their care,” she explained.
Other hurdles that block the way to a proliferation of AD education programs, according to Dr Lee, include the fact that it is difficult to design programs that do not conflict with school and work schedules, for patients and their parents/guardians, respectively. “The European eczema school studies describe multiple 2-hour-plus weekly programs that my American colleagues and I find very difficult to replicate,” said Dr Lee.
That said, she believes in the benefits of the model and is dedicated to her fledgling Boston University program. For now, the new group will remain pediatric only, however, she said if logistics and interest support it she aims to offer an adult version in the future.
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