Confronting Issues and Challenges Beneath the Surface: Patient-Centric Care Plans

The Care Plan in Action featuring Vikash S. Oza, MD

Because eczema is a chronic disease, there is so much information to go through with the patient. It is not just their prescriptions; we explain what their disease trajectory might look like and the potential impacts on their quality of life (QOL) that they might not even yet recognize. Generally, in my first appointment with a new patient with eczema, there are probably more than 30 complex care points that I try to explain.

Although there is a lot of information to go over, we must pair that with an understanding that health literacy is a barrier for many of our patients and their caregivers. One in four people in the United States have difficulty understanding their prescriptions and basic health education material. For atopic dermatitis (AD), we tack on top of that an incredibly complex disease state with multiple care components. Our patients typically use several topical therapies; they need to understand how to shop when they go to the store to buy products and how to bathe. Because of the great amount of information, we need to have educational resources and materials to help explain what we cannot in the initial visit. Photographs or video content can really help to increase comprehension as well. These resources can also be instructional to help capture information between visits as well, so that when we see patients for follow up, we can work through a shared decision-making model to get a better sense of the severity of their AD and whether we need to take next steps.

A few key things are necessary to have in physician-provided instructions for an eczema care plan. First, you want to make sure that you get across the core principles of care. Explaining what each product does and when to use it is essential, and you may need to rely on some of that information being shared through other educational materials or links to resources you are sending patients home with. Second, the patient should understand that we are here to help them and when to contact us. It is always disappointing when a patient comes back to see us 3 or 4 months later and they are not well controlled. I often tell families, for instance, if we are talking purely about topical therapy and getting over a flare, that if the patient is not better in 1 to 2 weeks, I want to know. I may have undershot the strength of the medicine I should have used. That gives them a sense of when they should be improving and when to contact you if they are not better.

In addition, our instructions should inform the patient and their caregiver of the danger signs of eczema. These typically have to do with infection. If the patient is having fevers, areas of pus, or sores on the skin, that could be a concern for herpetic infection of the skin. You should provide patients with instructions that go over danger signs of infection, and also instructions on what to do when skin in not improving on current topical therapy.

The single most important thing a provider can do to confirm patient comprehension of their care plan is teach back. That’s where you have the family or patient literally go over the steps you want them to follow. Teach back is a core principle of health literacy education and ensures that the patient received the materials and education, processed it, and internalized it. When we are teaching trainees, we recommend they do teach back because it really will let them know whether the patient has comprehended the information.

Coaching Patients Through the Care Plan, featuring Robert Sidbury, MD, MPH

Depending on the practice, a new visit for AD could range anywhere from 10 to 20 minutes. You could spend 10 to 20 minutes alone just disabusing false notions about the role of bathing and moisturization, let alone food allergies, in AD before you can even address comorbidities and patient questions about the disease. If we delved into all those things whether in the initial appointment or in follow up, we would never, ever get to the crux of the issue: treating the patient appropriately and getting them better. Much of the information available can be frightening or concerning to patients or their caregivers, even if it may not be relevant at all to the patient either in the short term or in the future.

Providers really do have to meter the information that they share. A follow-up appointment for AD should be an opportunity to respond to questions that the patient or caregivers ask. Train their attention on the things that you know will be important to that patient’s skin. If items remain on the table that you cannot cover in the time allotted, point them to resources such as the National Eczema Association to extend the educational portion of that visit beyond the constraints of its limited time.

As I address a patient’s or their caregiver’s concerns at follow-up, I think back to the first visits. Presuming they had fairly significant eczema, then they were certainly itching, likely losing sleep, and may well have had impact on school performance or ability to enjoy their friends and activities. I try to have them think back to what specific impacts that patient was having and the particular impacts on their QOL and then probe there. General questions (eg, better, worse, or same itch?) can give a good overview of how the care plan is going and what may need to be addressed. Then, from there, I dig deeper into whether that was a patient who was having some sleep loss due to their itch, or if it was a patient who was having skin infections, and if any of those issues have continued or appeared since the last visit.

Something that I always tell parents before they leave a visit is that the patient or caregiver is going to be the experts on the skin, not me. Opening that door to the patient’s experience gives me an idea of how dynamic their AD may be and what the patient sees from day to day. It also lets me know what questions a patient might about a therapy or alternative medical approach from search engines or a relative. Sometimes, that information is spot-on, and sometimes what the patient has heard or read is not backed by evidence. Patients might even have information overload and come in with these mixed messages about bathing, food allergies, and the like.

When I am meeting a patient for the first time, I assume they trust me less than their pediatrician or their relative or whomever. What I try to do is say, “Listen, let’s just talk about the fundamentals.” If relevant to that child, for instance, I will point out the areas of the skin that tend to do better vs the areas that tend to do worse.

Link those general concepts to, perhaps, showing the patient or caregiver those sorts of things on their own skin or their child’s. Then, give them the facts. In general, moisturizing is an unambiguous good. Bathing will depend; if you bathe and do not moisturize, I would probably rather you bathe less. If you moisturize after you bathe, then I think bathing every day is just fine. But I have some parents say, “We do exactly what you’re saying and little Johnny seems to do worse when he bathes.” Then, maybe, bathing twice a week or when he’s dirty, when he needs to be bathed is more appropriate when using a daily bath, a soak-and-smear technique as therapy. I just try to make sure they understand the things we know and the many things we don’t know. Then, have them realize that they can adjust as they see fit based around those principles at home.