Video
The Impact of Atopic Dermatitis on Quality of Life
Author(s):
Expert dermatologists review the impact of atopic dermatitis on quality of life for both the patient and their families.
Linda Stein Gold, MD: Matt, you see a lot of these patients with complicated atopic [dermatitis]. You practice in Ohio. Do you find the same thing, that this impacts not only the patient but also the entire family unit?
Matthew Zirwas, MD: Absolutely. One of the first things I talk about with parents, especially when I’m seeing children, is that it’s not their fault. This is a sea change in the way we think about atopic dermatitis. For years, before we had good therapies, almost all we could offer patients or talk to families about were things like, “How frequently are you bathing? What soap are you using? Do you have carpet? Do you have hardwood floors? Do they have stuffed animals? Do you have a humidifier? Do you have an air purifier? Have you been keeping track of their diet? How often are you putting moisturizer on? Which moisturizer are you putting on? Are you keeping track of their schoolwork? Have you talked to their teachers about it?” We never said it, but what the parent heard was, “If you were a good enough parent, if you tried hard enough, if you did everything, then your child wouldn’t have eczema.” That’s what they heard. We never said it, but that’s what they heard.
I emphasize telling parents that there’s nothing they could have done to prevent their child from getting this. Lifestyle wise, there’s almost nothing you can do that’s going to get your child better. If your child has diabetes, for example, we wouldn’t say, “Your child doesn’t need insulin. You just need to monitor their diet.” Well, you need to monitor their diet, but without insulin they’re going to die. With atopic dermatitis, you need to pay attention to their lifestyle, but it’s about getting them on effective therapy. When I talk to parents about this, I use my hand when I say, “Your skin is supposed to look like this. Anything that gets on your skin can’t get in, can’t cause a problem.” If I’m talking to an adult I’ll say, “Your skin looks like this.” Anything that gets on gets in. Then I talk about, “It’s not your moisturizer or your soap.” We have data now showing that it’s air pollution, pollen in the air, hard water, your own sweat, your microbiome, residual laundry detergent, and clothing. The things you can’t get away from are the things that are getting in and causing this inflammatory response. I’ve had many parents break down in tears when I say, “It’s not your fault. It’s not your fault, and we’re going to be able to get your child better.” That’s because we have treatments that work.
Linda Stein Gold, MD: That’s such an important point. Parents feel guilty. They feel as if they did something. On the other hand, a lot of parents are looking for 1 treatment or 1 food item that they can eliminate to make their child feel better. Aaron, you practice in Texas. It’s a human environment with different patients, but do you find the same thing?
Aaron Farberg, MD: The heterogeneity with atopic dermatitis is so wide, and that’s why it’s important that we have a variety of treatment options. Listening to my colleagues here, I recognize there’s a large educational gap between what our patients know about this disease. It’s very important for all of us to take the time and educate our patients on the different techniques, lifestyle changes, modifications, as well as therapies that we have available to treat patients with atopic dermatitis. Thankfully, it’s a good time to be a dermatologist. We have a variety of other treatments that we can utilize to help these patients.
Linda Stein Gold, MD: Trying to delve into the impact is also important. Sometimes I’ll interview the child in front of the parents because children don’t want to say in public that they’re being bullied. Children don’t want to say that they’re afraid to sit in the lunchroom because others look at them and think they’re contagious. Talk to the child in that environment, so the parents realize this is having a major impact on their child. Even though they know it—they know they’re not sleeping, they’re crying when the water hits their skin because it stings so badly—sometimes you need to encourage the family to go to that next step with a more significant treatment. It has to have that conversation to delve into the overall quality of life.
Aaron Farberg, MD: You hit the nail on the head. Quality of life is key; it’s paramount. It’s the important question that I’m always trying to answer with all my patients who come in the door with atopic dermatitis. We have a lot of objective outcomes, which are great, but we’re often asking open-ended questions because you don’t know where the impact is going to be. As a father of 2 little kids, their sleep is important because it affects the parents’ sleep. It could be school or work. You never know how you’re going to understand how this disease is impacting their quality of life with just 1 question. Keeping it open is important.
Alexandra K. Golant, MD: I find myself making the majority of my treatment decisions based on quality of life. I use that as the guiding light to determine if you’re well controlled. It’s really, “Are you living a life that you could live free of the impact of your atopic dermatitis?” If the answer is no, it’s time to do something different.
Matthew Zirwas, MD: Linda, I feel we’re giving adults short shrift.
Linda Stein Gold, MD: I was thinking the exact same thing. We talk about the kids, but we can’t forget the adults—the impact and the bullying that occurs for adults as well.
Matthew Zirwas, MD: It’s not just the bullying. One of my favorite terms that I’ve heard in the last few years is flare anticipation. The disease is doing this, but we often see patients when they’re not in a flare. We might look at them and say, “You look like you’re not doing that bad.” But for them, there’s always something: “I’ve got a big presentation in a couple weeks. I’ve got an interview. I’ve got a wedding coming up. What if I flare?” Even when they’re going, they’re worried about when the next flare is going to be. I couldn’t agree more with Aaron: the objective severity is often misleading. We’re so used to seeing bad atopic dermatitis that sometimes, if it doesn’t look that bad, you’ll say, “It’s not that bad.” But if you ask them, “Is your eczema going good enough?” I’m always looking to simplify things. If their answer is yes, then I say, “Then I’m happy with how we’re doing.” If their answer is anything other than “I’m doing great,” then I say, “Here’s what we can do.”
Linda Stein Gold, MD: Peter, in terms of the adult as well as the child and depression, do you ask that up front and try to tease it out?
Peter Lio, MD: I do. There’s a stigma to mental health disorders in our society. Sometimes individuals aren’t forthcoming. Part of it is reading the room. When you walk in there, you can feel it—that autonoesis, when suddenly you feel down. You’ll look at the patient and say, “How are you? I don’t think everything is going so great.” Asking those questions in a very structured way can help. Keep it simple too. I don’t think you need to do a fancy survey or questionnaire, but you can say, “How has your mood been? How has your sleep been?” All of these are connected. “How are you eating?” When patients start to get depressed, their sleep gets disturbed, their eating changes, and they’re wasting away in many ways. In dermatology, we’re structured to go very fast. We don’t have a ton of time, and if you’re hustling, you might miss it. We’re more likely to miss it than if you sit down for a moment and make eye contact with a patient to find out how they are.
Transcript edited for clarity
