Want to know the best way to take charge of your eczema and be a self-empowered advocate for your health and well-being? Create your own eczema care team consisting of licensed, specialized medical professionals you can trust, and keep those lines of communication open.
That’s right—we said team. Putting the fate of your disease and quality of life in the hands of just one doctor would be like hanging up an original Picasso painting using only one nail. It can be done, but yikes! Wouldn’t you want to ensure that masterpiece is carefully preserved? After all, just like you, it is a priceless work of art.
Atopic dermatitis (AD)—the most common, difficult to treat form of eczema—is a chronic, relapsing inflammatory disease that causes the skin to become dry, discolored, itchy, scaly, oozy, painful and more susceptible to staph infections. It also comes with its fair share of comorbidities including asthma, allergic rhinitis or hay fever, food allergies, depression and sleep troubles.
“This is so much more than an itchy, trivial rash,” said Dr. Mark Boguniewicz, professor, division of allergy-immunology, department of pediatrics at National Jewish Health and University of Colorado School of Medicine.
“Having a disease like AD—with significant pruritus (itch), painful skin, ongoing sleep disturbance, uncertainty about triggers, and concerns or misunderstandings about medications—requires more than just making a quick diagnosis and handing out a prescription,” he said.
“Clinicians often do not have adequate time to spend with patients or caregivers to properly educate them about the nature of this disease, triggers, testing (and limitations of tests), or treatment risks vs. benefits. In many ways, our current approach to medicine in general is not conducive for caring for patients with chronic, relapsing disease. And our health care system really doesn’t make it easy to facilitate a team approach. That’s the sad reality.”
Dr. Vivian Shi, director of the eczema and skin barrier clinic at University of Arizona College of Medicine in Tuscon—and longtime eczema warrior herself—agreed. “Since there is no universal electronic medical record system, it is often difficult for multiple out-of-network providers to gain access to a patient’s medical record. In my opinion, this is an intrinsic impediment to patient care,” she said.
“Certain specialists also may not be familiar with diagnosing and managing all aspects of AD, as it is a very multi-factorial and heterogeneous condition. Additionally, a multidisciplinary team is often challenging to assemble within the same health care network, partly due to institutional constraints and insurance reimbursement issues. Thus, most multidisciplinary AD specialty centers are within tertiary teaching medical centers and are few in number.”
Two examples of eczema care teams in action
Boguniewicz is a pioneer when it comes to taking a team approach to treating AD. He runs the Day Treatment Program at National Jewish Health in Denver, where pediatric patients and their families often stay on or near campus for days at a time. Here, young patients with AD are evaluated by a medical team that includes physicians, nurse educators, behavioral clinicians, dieticians and others.
Patients undergo intensive skincare routines, including wet wrap therapy, for the first four to five days. Then they step down to a more achievable maintenance regime while the team continues to evaluate triggers and address scratching behaviors and other issues. Before leaving the program, patients are given a home management plan and referred to physicians who specialize in AD in their hometowns.
“What is so striking is that, for the majority of patients coming to our program, no matter how severe their eczema is, or what prior treatment they have been on, or how infected their skin may be, they tend to get dramatically better when our nurses take over initial skincare with the assistance of behavioral health clinicians, child life specialists and other members of our team,” Boguniewicz said.
The Atopic Dermatitis Center at Boston Children’s Hospital also takes a team approach to treating pediatric AD cases. Crew members include an allergist or allergy nurse practitioner who completes a medical assessment and provides educational resources to the patient and their family, and a psychologist who counsels the patient on distraction techniques and coping mechanisms to minimize scratching.
How to find and build your own eczema care team
Think of your eczema care team as if they were specialized contractors hired to perform fine repair work on your home. You wouldn’t hire a plumber to install the windows. You don’t expect the roofers to handle the electrical wiring. You want to hire the person who specializes in that particular field of work so that the job will be done correctly. The same principle applies in the medical world.
“Patients must be empowered to manage their disease because their illness has daily challenges that can last a lifetime. These challenges may be far more frequent than can be dealt with in the relatively few clinic visits they may have per year,” said Dr. Donald Leung, head of the allergy/immunology division in the department of pediatrics at National Jewish Health.
“Although the patient may require multiple medical providers, it is important that the patient has one health care provider who can orchestrate the various subspecialists to treat these complex cases. The multi-disciplinary team led by the patient’s primary health care provider is most effective in optimizing care for the patient with moderate to severe eczema.”
It’s important to feel comfortable with the experts you’re relying on, Shi added. In addition to evaluating your symptoms and providing answers to your questions, your eczema care team should take the time to listen to any concerns you might have about skincare, triggers, treatments or quality of life.
“Patients/caregivers are often the catalyst and glue for their own care team,” said Shi. “It is tremendously helpful to identify specialists that are committed to working with the patient/caregiver, as well as other AD specialists, though it may take some effort and time to assemble the ‘right’ team of doctors.”
NEA’s Eczema Provider Finder is a good place to start. Our online directory allows you to search for medical providers who specialize in treating eczema. All you have to do is plug in your zip code. The directory pulls up vital information including their contact info, medical specialty, types of treatments they provide, and whether they are covered by Medicare/Medicaid or private insurance.
Managing your eczema care team
Being proactive in your trigger tracking and following your doctors’ orders when it comes to skincare and treatment are a big part of successfully managing your eczema care team. Patients should come to medical appointments equipped with photos, notes and other evidence demonstrating the progress (or lack thereof) of that person’s current skincare and treatment regimen.
“Important elements that patients and caregivers can provide for the doctors during office visits should include disease severity trends, such as itch, redness, sleep loss; trigger tracking diaries and medication use logs,” Shi said. “Without this information, it is more challenging for the doctor to fully understand whether or not one’s AD is adequately controlled on the current regimen and how to modify the management plan moving forward.
“An emerging solution for this practice gap is called shared decision-making (SDM),” Shi continued. “It’s process in which the patients/caregivers and providers collaboratively make disease management decisions based on available clinical evidence in order to improve treatment outcomes. SDM tools have been implemented in a number of medical specialties outside of dermatology.”
But not for long. NEA is forging new and innovative paths in patient care by bringing the SDM model to dermatologists and other medical providers serving the eczema community.
This year, we will launch a beta model of our SDM platform, a custom e-tool or website that will help eczema patients and their caregivers track and monitor symptoms and triggers on their computers. Serving two research grants to start, NEA is working directly with patients and providers to place this tool in active use at clinics with the ultimate goal to provide this important resource to our entire community.
The SDM platform also equips patients with pre-appointment checklists, action plans, decision aids and more. Since patients will be able to share these items with their health care providers, their medical team will be able to gain more complete insight into how the patient’s disease is progressing in between medical appointments.
Becoming empowered is one of the most important steps Eczema Warriors can take in their journey to wellness. Learn everything there is to know about this disease and find medical professionals who are determined to get to the bottom of your symptoms. Remember, you are a priceless work of art, and you deserve an eczema care team that will nourish and support all aspects of your health.
6 steps to become an empowered eczema patient
- Go to any and all medical appointments. A medical professional’s time is valuable, and so is yours. Don’t deny yourself the opportunity to receive professional care or advice about your eczema.
- Be candid with your health care team. Discuss any symptoms you are experiencing, regardless of how minor they might seem.
- List all medicines you’re taking, including over-the-counter medications, vitamins and alternative therapies.
- Discuss any emotional symptoms you are having. If you are feeling anxious or having trouble sleeping, let them know. These are common side effects of eczema.
- You have the right to get a second opinion—from a medical provider, that is. Your friends, family and coworkers mean well, but you need a professional’s input.
- Talk to your doctor before trying any new treatment. Once you agree to a treatment plan, follow through with it. If the treatment is not what you expected, talk to your doctor before stopping the treatment.