In this podcast, Peter Lio, MD, discusses how atopic dermatitis lesion location impacts patients' quality of life, and why it is important for dermatologists to discuss quality of life concerns with patients.
Dr Lio is a clinical professor of dermatology and pediatrics at Northwestern University Feinberg School of Medicine in Chicago, IL.
Melissa: Hello. Welcome to another edition of our podcast, “Updates in Atopic Dermatitis.” I am Melissa, your host and Associate Editor of The Dermatologist. Today, I will be speaking with Dr Peter Lio about his study, “Impact of Atopic Dermatitis Lesion Location on Quality of Life in Adult Patients in a Real‑World Study,” published in the Journal of Drugs in Dermatology.
Dr Lio is a clinical professor of dermatology and pediatrics at Northwestern University Feinberg School of Medicine.
Thank you for joining us today. Why did you and your team decide to do this study?
Dr Peter Lio: It is such an interesting thing that even despite all of the education, all of the heightened visibility of atopic dermatitis, there is still a real tendency outside of people who are focused on the disease to dismiss it and to say, “Oh, it’s just a rash. It’s just a skin thing. It’s not a big deal.”
We’re always trying to understand better what is the impact on quality of life. In particular, the question comes up and it’s a little bit of one of those things you might expect.
In some ways, we’re just sort of getting the actual evidence to back up something that seems very reasonable and instinctively correct, that the areas that are most visible and that are most active—for example, the head and the hands—those probably have an outsized impact on quality of life.
That’s really what this was an attempt to look at, to quantify the effect on quality of life depending on the body area of atopic dermatitis, where it’s involved.
Melissa: Could you discuss the methods used in your study and why you decided to include patient‑reported outcomes in addition to physicians’ assessment of atopic dermatitis?
Dr Lio: One of the other things that’s been fascinating in this area, but throughout all of medicine, especially in dermatology, we’re seeing it more and more, is to think about these patient‑reported outcomes. We’re seeing this in particular with a lot of new medications.
Historically, when people want to ask the question about whether or not a drug works, all they really wanted to know was, was it effective or not? We saw this big push that people just had a very simple clinical score or a scale, and that was enough.
But increasingly, we realize that that is only part of the story. What we’re really looking for is not only did it have an effect on some kind of an objective scale, which is clearly important too, that’s not to minimize that, but we want to know did it actually affect the patient’s quality of life, did it have a patient‑reported outcome.
The older I get, the more I look into studies, it turns out that, maybe paradoxically, is actually what I’m much more interested in. Because we realize that just showing an improvement on a scale that’s objective may not always correlate to the same degree on the patient‑reported outcome.
We’re seeing best practices really to try to capture both, to get a sense of objectively, what are the findings and the signs we’re seeing. But maybe just as importantly or more importantly, what are the patients reporting?
For atopic dermatitis, that of course includes things like sleep quality, itch quality, and, of course, their ability to be able to do their activities of daily life and feel good about themselves. Those last three are really tough to measure if you’re just using a scale from zero to four in terms of eczema severity.
Melissa: That’s really interesting and goes into the next point, which is that your study found all locations were associated with lower quality of life, but lesions in visible areas, such as the face and hands, were associated with worse quality of life out of all lesion locations, which does seem kind of obvious. But what is the significance of your findings?
Dr Lio: We understand that, as you would expect, instinctively, if your face, your neck, these visible areas, or your hands are involved, that’s going to have an outsize effect on your experience of a disease.
We know that, for example, inverse psoriasis that tends to be in the folds can be miserable, but because it’s able to be hidden, those patients have a different overall experience of it than psoriasis that’s affecting the scalp or the hands.
We’re seeing a very similar type of experience here with atopic dermatitis. I often think of atopic dermatitis as being everything that’s bad about psoriasis, which arguably we know quite a bit more about. Psoriasis has been in the eye of sort of the dermatology research group for much longer than atopic dermatitis.
Finally, we’re getting some interest in atopic derm. These run hand in hand with the ability to develop new medicines. Of course, we’re seeing new treatments and approaches for it, but we’re seeing a very similar effect.
Now, of course, in the recent months with the pandemic, we’ve had an enormous increase in hand dermatitis and hand eczema. I’m seeing this not only being a visible thing, which, again, has a huge effect, but also a functional piece. We don’t really get into that directly in this paper, but it is implied.
If your hands are cracked, bleeding, fissured, painful, that is going to have a huge effect on your ability to work and do your daily activities. That, of course, is different than just having it in a visible area. It’s even a level beyond the subject of psychological impact of seeing it.
Melissa: Disease severity has been associated with lower quality of life. But did you also notice a correlation between the location of the disease and quality of life in patients even with mild skin disease?
Dr Lio: Yes. You’re right. In general, the severity of the disease tends to correlate with the effect on quality of life. Obviously, the mildest, mildest disease tends to be a less impact on the quality of life than the most severe. But, of course, we know that’s not a perfect correlation.
Again, I’m always cautious because someone might say, “Oh, you’re pretty mild, so it’s probably not affecting you much.” Individually, there is a great deal of variability. Some patients are kind of stoic, and they are miserable. But they’re saying, “You know what? I’m OK. I can get through this.” Other patients don’t look too bad, but they’re [laughs] really affected heavily.
There is an individual piece to this. But you’re absolutely right. Those body locations have a much bigger effect on that quality of life. Obviously, there’s not that much data out there yet. This study hopefully contributes to that literature.
But I do expect, and as a clinician I see it, that those certain areas have a much greater impact on quality of life than areas that are easier to hide and cover and that are just sort of out of your own mind. If it’s on the lower back, it might be itchy and uncomfortable, but you never have to see it. No one else has to see it. It’s sort of hidden.
Whereas if it’s on your hands and wrists and every time you reach out to shake someone’s hand, not that we’re shaking many hands right now in the current pandemic, but the person sometimes, they’ll blanch, or they’ll recoil from that hand. They’ll say, “What’s wrong with you?”
I’ve had many patients get very upset about that because they feel like, how can they live a normal life, how can they interact with other people if they are actively showing these signs of the condition?
Melissa: You touched on this a bit already. But why is it important to address quality‑of‑life concerns among patients with atopic dermatitis?
Dr Lio: The quality‑of‑life concerns, at the end of the day, are really what we’re aiming to help in medicine. I don’t think we’ve always said it that way because we’re often thinking about a disease. I want to get the disease better.
But when you really follow it to the teleological finish, it’s that we want to get the disease better so that quality of life improves. In an important way, we can short‑circuit, to a certain degree, some of the more objective findings and really just cut to the chase and say, “Hey, is this helping you? Is this helping your quality of life?”
I do think while these are very correlated, so I’m not trying to stir up too much. Again, in general, if the atopic dermatitis improves, quality of life improves in step. Like it shouldn’t be surprising.
But I do think there are certain little areas that maybe break the rules or bend the rules, where you say, “Boy, you don’t look that much better, but really your quality of life is a lot better.”
For example, we know that treatments may be more targeted on itch. They might have an outsize effect on quality of life and not look quite as good if you’re just looking at an EASI score or an IGA score as something that’s much more disease‑targeted. That’s important because, again, maybe you’re still going to want to pick the one that does the disease, but maybe for certain patients, there might be a reason when you say, “You know what? This doesn’t look as good in terms of the studies if we’re looking at the eczema plaques and the actual extent of disease, but your quality of life is as good or better. Why don’t we pick this one for you in this case?”
This gives us more understanding and more flexibility to create what I’m always going for, which is this concept of personalized or precision medicine, can we really tailor it to the individual.
Melissa: In your opinion, what additional research is needed to study quality of life in atopic dermatitis and also to help improve assessing quality of life in clinical trials and practices?
Dr Lio: I really love some of the work that’s been done. There’s a group called the Harmonizing Outcome Measures for Eczema, the HOME group. They’re really trying to figure out what are the best markers and types of tools we should use when we’re studying atopic dermatitis and, in particular, a lot of the new medicines that are coming.
My hope is that not only will we have greater uniformity in trials coming up so that we can compare. Because so far, we haven’t had a whole lot of options for treating particularly moderate to severe disease, but I’m hoping, if all goes well in the next five years, we’re going to have a whole bunch of options.
If we look at our similar setup in psoriasis, we really are going to have a lot of compelling medication options. What we’re going to need then are the tools to compare them to understand not only their efficacy, that’s key, but also their safety and then ideally, those key differences that will help us individuate those medicines for a given patient.
I’m looking for more uniformity to try to find best practices and disease outcome, yes, but also quality of life impact and to do it in a way that is a little bit more portable. Because as you see with this study and many studies, the way that we solve this is we do dozens of things at once.
You ask so many questions. I feel it’s a burden on the patients and the provider. If we can start to extract and say, “We’re going to get this down to a very simple survey that everyone can use,” that may also then translate to clinical research for anybody. It makes it much more attainable and, potentially, even in the clinic.
What I’m starting to do is use, for example, the POEM scale, the Patient‑Oriented Eczema Measure, which is fantastic. It’s just seven questions. Patients can do that on their own. It’s designed for the patients to do. It takes them just a couple of moments. They can do it before I enter the room.
What a wonderful tool we can use there. I’m excited to see other studies propagating this idea so that maybe everybody seeing an atopic dermatitis patient could do something like that.
Melissa: What key takeaways would you like to leave our audience with?
Dr Lio: The most important one is that atopic dermatitis has a tremendous impact on quality of life. It really is disruptive. It is something that creates an enormous burden, not just for the patient.
Of course, for our study, we’re really looking at the patient, but I just want to always underscore that it’s also for the caregivers. It’s for the family. It’s for the social unit. That ripple effect really affects everybody, and it keeps going out because we know that impact is so severe.
Then second of all, even if their “severity” is not super‑high, even if their body surface area is not super‑high, there are particular areas of the body that can be involved, in particular, we found here head and neck and the hands, that have this outsize damaging effect on the quality of life.
If you kind of roll your eyes and say, “Oh, it’s just a little bit of hand eczema,” you have to look at this and say, “Actually, for hands and fingers, this is an enormous, bothersome aspect for these patients.” I want to make sure we’re not dismissing these patients or simply saying that this is not enough to warrant more aggressive therapy in the patients who may really need it.
Melissa: Thank you so much for joining us today, Dr Lio. If you have any questions or comments, please submit them in the feedback box below. Thank you for listening.