The Challenge of Determining Disease Severity in Atopic Dermatitis: Dr Peter A. Lio

Disease severity is not as straightforward as it seems in atopic dermatitis (AD), said Peter A. Lio, MD, clinical assistant professor of pediatrics and dermatology, Northwestern Feinberg School of Medicine. Some of the factors that need to be taken into account are the fact that the disease is dynamic, it may feel different than it looks, and response to treatment can be variable.

In part 2 of an interview with The American Journal of Managed Care^® (AJMC^®), Lio also discusses tools to assess disease severity, the impact AD has on quality of life, alternative medicine approaches, and more.

In part 1, Lio discussed diagnosis of AD, comorbidities, and the management of pediatric and adult patients.

AJMC^®: How do we typically measure disease severity in atopic dermatitis?

Lio: Disease severity is one of those little talking points that seems like it should be so straightforward and ends up being a gigantic rabbit hole of complexity and confusion. It's in part because this is a dynamic disease. One of my favorite concepts is what we call the mechanic problem. Your car is making a funny noise—“tutututu”—and you’ve got to bring it to the mechanic. You go to the mechanic, and it doesn't make the noise. And the mechanic says, “I believe, sure. Why don't you bring it back when it makes that noise?” And you're like, “No, I swear, it's making this noise all the time. It's just not doing in front of you.” The same thing can happen with atopic dermatitis. If a patient comes in, and looks pretty clear that day, what is their severity? How would you define that? Well, that day, maybe they're mild. Maybe they're clear; maybe you wouldn't even diagnose atopic dermatitis. But they're telling you that in the past few months they've had had some terrible sleepless nights, they've had open sores—there's been blood on the sheets. So how do we put this all together? And I think that can be very tricky.

The second piece is that the way something looks, and the way something feels, that's different, too. Maybe their skin doesn't look that bad, maybe you'd say, “Oh, this looks mild,” but maybe their itch is really severe and keeping them up at night and interfering with their quality of life.

And then the third piece is the refractoriness to treatment. One of the other hard parts is people sometimes look really, really bad, but then respond with very minimal treatment. So, I'm like, “Oh wow. Well, you look severe, but now you're clear. Great.” And other times people don't look that bad, but I'm throwing the kitchen sink at them, and it's not getting better. And I say, “Golly maybe it looks more mild to moderate, but it is highly refractory.” Now I need to use medicines that we might reserve for “severe atopic dermatitis,” and this can be confusing because then the insurance company might say, “Why did you put only 10% body surface area and moderate or mild on this thing, but you're telling me this is severe. Why is there a disconnect?” And the truth is because the disease is complex. All of those pieces come into play.

AJMC^®: Do you feel that there's any disconnect between tools that may be used in clinical trials versus tools or assessments that we're using in clinical practice?

Lio: For clinicians, we don't use really any of the same tools that we use in the clinical trial because honestly, the clinical trial tools are pretty unwieldy. You ideally should be trained in how to use them. You can read the instructions and do it, but ideally, you have a calibration-type deck where you practice and you make sure you're all on the same page. We really don't use any of the scores you'll see in the clinical trials, the EASI [Eczema Area and Severity Index], SCORAD [SCORing Atopic Dermatitis], even the IGA [Investigator’s Global Assessment], which is probably the closest thing that we use in clinic, that one is pretty straightforward. But again, ideally, you would calibrate it and it has a lot of different foibles.

My favorite tool is a free tool. It's available online. There's no branding or anything like that. It's called the Atopic Dermatitis Control Tool: ADCT. It is a wonderful tool. It’s 6 questions. It only takes about 45 seconds to ask, and you get a score to see if somebody's under control. So to me, this is actually the better question. What is the severity? It's almost like you're asking the wrong question. When you say “Are you under control?” Now you're asking the right question, because there you want to get a score that's below 7 on this scale to know that you're under control.

One of the most amazing and life-changing things that I found talking to patients is that they'll come in saying, “I'm doing pretty well. I'm OK. I feel like I'm fine.” And we'll do those 6 questions, and they'll have a very high score. Sometimes they'll break down right there, and they'll say, “I guess you're right. I'm not doing well. I'm not under control. I'm just so inured to the disease. I'm so used to it that I didn't even realize.” I highly recommend asking those questions, or if you don't want to use that particular scale, just read it. There are 6 questions—they ask about sleep and itch and quality of life. And just asking down those lines I think can really open up a lot of possibilities for you and your patient.

AJMC^®: What is the impact on quality of life for patients with atopic dermatitis?

Lio: The impact on quality of life is gigantic, and not only is it from the disease itself—because the disease has a lot of issues with the itch and the pain and the bleeding and the appearance—but then all the secondary issues because those patients aren't able to sleep. They're having trouble going to school or showing up at work. Even when they're there, they're not able to concentrate in the same way.

They also have to make changes in their lifestyle choices. If they wanted to do some water polo, maybe that's not going to work because they find that every time they swim and get irritated and warm in the pool, then when they come out they get worse. Things like that can actually change their entire life.

I will even say part of the thing we're not good at measuring is maybe nearly as important, and it's the impact on all of the family members, the friends, everybody else around them. A lot of times the whole family unit comes in, everybody looks like crap. Because the baby's not sleeping, the parents aren't sleeping, the siblings are stressed out because everybody's focusing on this kid. The quality-of-life impact is gigantic, and it really does ripple outward to affect many more people beyond the primary patient.

AJMC^®: What are some effective alternative medicine approaches for atopic dermatitis that you've seen be successful?

Lio: That's my favorite area, and I started this Chicago Integrative Eczema Center really to delve more deeply into some of the alternative and complementary treatments that we can try. I will say there are some things that I think hold some real promise. One of them is topical sunflower seed oil—it really does seem to help many patients. Topical coconut oil is another one, and it actually seems to have some antibacterial effect. It seems to help strengthen the microbiome and help rebalance things.

Other things that I really like are having people take a little bit of extra hemp oil by mouth. This is an oral supplement type of hemp oil, because it seems like the fats in there seem to strengthen the skin and decrease disease severity. Finally, one of my other little favorite concoctions is what I call “pink magic.” It's a topical vitamin B12 cream that seems to have a gentle anti-inflammatory effect. So really, really neat. Of course, the data, by definition, will not make it to the highest standards, that's why it's in this alternative area. But I really do think that for the right patient, it can be a huge, huge boon. Especially just to be able to talk about it a little bit and explore it. Sometimes that's all the patient wants is just some acknowledgment that “yes, there may be some other things. There may be adjunctive tools.” In so doing, we can connect better with those patients instead of turning them off.

AJMC^®: What are you working on in atopic dermatitis that you're excited to share?

Lio: I'm working on a number of different, exciting projects. One of the ones I'm fascinated with is this prevention project called the SEAL Study. Can we use a high-quality moisturizer from birth to prevent the disease in the first place? Prevention is better than cure. If we can get it so that it never even happens, we save so much suffering, so much expense, so much energy. I'm excited about that study.

I'm also working in the microbiome space. Maybe we can treat some patients without even using anti-inflammatory medicines. We can change the whole body using the microbiome, this important extra organ that we've only just begun to understand. I also am fascinated by different types of moisturizers, including ones that have cannabinoids. I think that have cannabinoids have anti-inflammatory effects and wound-healing effects and anti-itch effects.

There are many, many things I'm excited about, but those are I think my top few.