Shared insight on the best ways to educate patients on their atopic dermatitis and explain the nuances of available therapies.
Peter A. Lio, MD: The last piece is about education. This is important because to make a good shared decision-making process with the patient, they have to be on the same page. There’s a huge amount of education that has to happen. Of course, we all have luxurious amounts of time. You guys usually have, what, 1 to 2 hours for a new visit? Maybe longer—it’s only a few patients a day. No. We’re crunched. You have crunched time, and you have so much to cover. Sometimes the visit has many factors: where have you been? What are you using currently? What are your hopes, your fears, concerns? Then you get derailed. All they want to talk about is food. What food should we avoid? If we mention that, it can derail the whole visit. You’re trying to get to the next step to figure out how to get their skin better, and they’re doing this.
That doesn’t take into account the paperwork that has to happen after: the insurance forms, the prior authorization, the patient support stuff—all these things. How do we do that? One thing that’s so important is to bring external resources. I’m obsessed with handouts. I’m the king of handouts. Every time I see anybody for anything, they’re going home with a handout, and it’s usually going to list my action plan: what to do when you’re flaring up and what to do when you’re better. That’s such a big deal for me because it’s cut a lot of calls. Not 100%, but many calls [are answering the questions], “Which do I do first? Do I put this 1 on and then this 1?” I put them in numeric order. “In the morning, you’re going to do 1, 2, and 3.” We can really bring them through that.
The other piece that’s important is utilizing some of the national organizations that have patient support resources. I’m very conflicted because I’m a board member of the National Eczema Association. I don’t get paid any money. In fact, I donate a lot every year. I love the National Eczema Association. They’re a nonprofit organization that does a lot of patient advocacy support and education. I try to have my patients go to their website , to get signed up, to learn a little more about it. It’s nice when it doesn’t have to come directly from us. Sometimes they have a rapport with us, they understand us, but it’s nice to hear someone else’s voice, to get another opinion. That can help and give them some of the tools that can help them ask the good questions at the next visit, because I don’t like to be pushy.
On the first visit, sometimes I say, “Here are some options. I want you to think about this. Here’s some homework for you to read. Let’s talk, either by phone”—if they’re from out of state or from far away—“or when I see you in a few weeks, we’ll make our decisions at that point.” How do you guys feel about the education burden that we have?
Matt Feldman, MD: I agree. All of our patients are—if they haven’t already before they come to the visit—going to Google and Facebook to crowdsource and ask for advice from trusted friends and family members beyond their trusted allergist or dermatologist. Beyond the sheet that has all those important, point-by-point instructions, there needs to be a trusted links list. Something like the [National] Eczema Association and our national societies, which have great patient handouts. Let them kind of go down the rabbit hole online in a safe place, in a place they’re going to get good information.
Giving links and trusted sources are really helpful. But I also find that having that patient back with a short turnaround time is important. We’re all busy, but in patients with atopic dermatitis, we give them homework, we give them food for thought, but they need to come back shortly thereafter with questions fresh in mind. [Once they’re] able to move the ball along the field, get closer to that touchdown, get closer to that goal line, we can make management decisions incrementally. It’s OK to make management decisions incrementally for these patients. If you do that, they’ll follow you along that pathway.
Peter A. Lio, MD: I was going to make 1 quick [point]. We’ve alluded to the food thing. There may be some listeners [wondering], “Why are they laughing about the food? Why aren’t they talking about that?” I can speak a little for Dr Jain because I just attended 1 of his amazing lectures about food allergy and atopic dermatitis. The point—and the way I say it to my patients—is that I wish the food were the cause. When food is the cause, it’s easy. Arguably, you don’t actually have atopic dermatitis. You have an eczematous food reaction—you’re done, you don’t need us, you don’t need any of this. But for many patients, food may be playing some role. It might be inflammatory. They may have some food triggers. Of course, there’s a huge concurrence of real food allergies that are IgE mediated.
It’s a complex, messy thing, but it’s often not where the money is to get the skin better. There’s this tension because the patients want to focus on the diet, “How can I fix my diet to get better?” [We say], “I don’t know.” Even if you did a super-severe, extreme diet—we’ve all had patients with literal malnutrition because they’ve been so stringent on their diet, and their eczema is still terrible. It’s trying to redirect, not because we’re trying to push drugs on somebody, but because we’re trying to help them. Some of the patients and families have done this for years. I’ll just sit there and say, “You would’ve found it without me. You’ve cut everything out. You’re feeding the child rocks and water, but his eczema is still bad. I don’t think it’s food. I want it to be too, but can we work on other things?”
One of the little tools in my toolbox that I’ll share—this is a pretty universal thing; we all feel the pain of this is that I often say to families who are fixated on it, “When the skin is super inflamed, like now, when it’s a mess, it’s similar to when you get up on the wrong side of the bed.” You’re in a bad mood. No matter what anybody says to you, you’re going, “Grr.” Somebody says, “Good morning,” and you’re, “Grr.” But when you get up and you’re in a good mood, even if someone says, “You’re a jerk,” you say, “Have a great day.” It rolls off you.
It’s very difficult to evaluate what’s triggering your skin when it’s a mess, so I say, “Let’s get it better.” Let’s spend a little time cleaning things up. If there are still triggers, we can then see with much clearer eyes If they had an aha moment when they ate—fill in the blanks—dairy, gluten, strawberries, whatever it may be. That definitely made it worse. But right now, we can’t even see that. I put that there not because we don’t take it seriously. We do, but it could take up all the time. Sometimes that’s all people want to talk about. We have to redirect, because I want to get people better. Do you guys agree with that? Not to derail it too much, but it’s so important.
Neal Jain, MD: Absolutely. When we talk about what works and what helps patients get buy-in, we take for granted that we understand this pathology of atopic dermatitis, but they don’t. You just spoke about this with regard to their focus on foods or other things, what mindset they come in with. We need to take a step back and teach them that this is a disease where there’s barrier dysfunction, helping them understand that we’re learning that this is true not only of atopic dermatitis but also other type 2 inflammatory diseases, whether it’s asthma, allergic rhinitis, chronic rhinosinusitis with nasal polyps, eosinophilic esophagitis.
We know that there are these similarities with this barrier dysfunction, and that barrier dysfunction leads to this inflammation. That’s how you develop food allergies. It happens first there. We need to help them understand this so that they get the focus away from some things that they have preconceptions about, and then we can educate them about the options to manage that and help restore that function to help their skin better. That’s hugely helpful. When this comes from reputable sources like the National Eczema Association, the AAD [American Academy of Dermatology], our societies in allergy, getting that same message repeatedly helps.
We did some survey on patients’ perceptions about bathing. You hear these patients coming in, saying that they’ve been told 15 things about what they should do with bathing, and they’re just confused. So to have some science to back this up gives us credibility, and that allows for the buy-in that ultimately leads to success in skin improvement.
Marc Serota, MD: Educating patients about their disease course is very important at the outset. It’s important to set expectations, and there’s no more important way for me to do that than to tell them this is not something you’re doing. It’s not your fault. It’s a genetic skin condition, and it’s a condition that waxes and wanes over time. There are going to be periods when you forget that you have eczema. There are going to be periods when it’s very flared. Our job is to control those flares so that you’re not having flares very often and when you do have flares, to not be concerned about treating them at the first sign of trouble.
One way to do that is to talk about the use of steroids and how to properly use them so that they’re not afraid to use them. Another way is to use nonsteroidal medications that might promote less fear within the patient or the parents so that they use them at the first sign of trouble. I always say that it’s like a little fire that’s burning. The sooner you put it out, the better off you’ll be—but you have to completely put it out. If you use your medication for a few days and then there are still some embers there, it will come right back. It’s important to set those expectations.
A third thing that’s very important to talk about is avoiding systemic steroids. Very commonly, patients come to the office with chronic waxing-and-waning flares. It’s a vicious cycle, and it’s usually triggered by the use of systemic steroids, either injectable or oral prednisone or Medrol dose packs. What happens is the patient’s skin rebounds once they come off their systemic steroids. It’s important to educate parents, patients, and providers that using systemic steroids should be a bridge to some other therapy and should not in and of itself be the plan to treat someone’s atopic dermatitis. In the long term, they have adverse effects. In the short term, they’re going to create a rebound that’s only going to continue their waxing-and-waning flare cycle.
Transcript edited for clarity.