Video
Assessing Impact of AD on Quality of Life
Author(s):
Expert perspectives on assessing quality of life when discussing atopic dermatitis and inflammatory disease with patients.
Transcript:
Marc Serota, MD: Assessing quality of life is very important when you’re assessing a patient with atopic dermatitis. In the field of dermatology, it’s very easy to fall into the trap of walking into the room and using our eyes to say what their severity is. As I always say, that’s the snapshot, but for atopic dermatitis, you have to ask what the movie looks like. On an average day, 0 to 10, how bad is your itch? On an average day, what body surface areas are affected? On an average day, 0 to 10, how would you rate your atopic dermatitis?
Then I take the most severe of those answers and try to put that together to come up with what their overall quality of life is and what their overall severity is. Walking in the room and seeing the snapshot is 1 piece of information, but it’s much more important to ask yourself, what does the movie look like? I’d love to hear what my colleagues think about, how they assess what the movie looks like when they’re seeing patients.
Peter A. Lio, MD: I love it. You brought up many great topics. One thing you alluded to that I often talk about is the idea that the patient is suffering directly, but everybody around them is suffering indirectly. The parents aren’t sleeping well. The sibling’s life is affected: the school, work, even us. Not to sound like a martyr, but as a clinician taking care of hard cases of atopic dermatitis, it’s really hard. No one is gunning for our jobs. It’s not a glamorous thing. It’s as if you have to work hard to get people better and work with them and listen to their suffering. It’s incredible.
The second point you brought up, which is really powerful as well, is trying to figure out how we can assess severity in that point scale. You’re looking at something and all you’re seeing are clinical signs and hearing maybe a little about some symptoms, but I love that idea. Is it a snapshot? What’s the movie? The disease is really variable. It can go up and down relapsing and remitting, and it’s just weird to look at somebody. We have the mechanic problem all the time. I know I look good today, but I’ve been terrible. Every time I come to see you I feel like I’m having a good day, so please don’t undercode me. Don’t underassess my severity. That’s why we need new tools.
One thing I’ve become obsessed with recently is a fairly new tool called the ADCT, the Atopic Dermatitis Control Tool. It’s free and validated. There are 6 questions. It takes, I kid you not, 45 seconds for the patient to do it. They can circle them. I do it with them. I print it and bring it in. Then we do it together, and I say, “You keep it. You take it home, and I document their number.”
I have a patient who’s on methotrexate. She’s been on it for a long time, and we were talking about some other options. What can we do? She was sent as a referral, and I said, “You’re doing OK.” She said, “Yeah, I’m pretty good.” I said, “Why don’t we do these?” She got a 21 on this thing. I said, “You’re not doing well. Anything more than 7 means you’re under poor control. You’re really bad.”
That opened up this whole thing. A lot of the more severe patients become inured to the disease. They’re so used to it. They’re like, “I guess I’m OK.” I’d love to hear from everybody. What do you guys think about this trouble in terms of figuring out the severity?
Matt Feldman, MD: I completely agree, Dr Lio. I had an adult patient who was referred for asthma. When I saw his skin, I saw excoriations, scabs, evidence of bleeding. It immediately struck me, right when I walked in the door. We started, led with the asthma, and had the whole conversation. I said, “Let me ask you something. Tell me about your skin.” He demurred and said, “This is what I always look like.” I said, “It looks like you’re bleeding from time to time.” He said, “Yeah, probably once or twice a week. I have to change the sheets. My wife gets mad at me. I bleed through the sheets.”
It turns out he was in much more need of our care for his atopic dermatitis that he was used to. With these control tests, I like your idea of utilizing different tools because not all our measurements are accurate. The key is yes, believe your patient when they tell you they’re not feeling well, but sometimes don’t believe them if they tell you they’re feeling well. A lot of these patients are just used to it and compensate. When you start delving deeper and peeling the layers of the onion, you realize they need additional help.
Neal Jain, MD: Absolutely. When we see our patients with atopic dermatitis, to the point you made, Dr Lio, it can be challenging when you see that severe child or adult with bad atopic dermatitis, but I also get excited because you internally know the suffering—we’ve heard these stories so often. Not that we’ve experienced it, but we hear how it affects their sleep, how it affects the entire family, how the entire family isn’t sleeping, how they’re not performing in school, how sometimes they’re not growing.
There’s been a study recently that’s demonstrated that patients with more severe atopic dermatitis don’t grow well. That may be because they’re not sleeping well. You talk to them and ask them questions. Are you sleeping? Is he waking up at night, what’s going on with his growth and his development? They tell you, and they instantly understand that you have this understanding of what’s going on in their lives.
To be able to offer them this hope, especially with some of the things we’re going to talk about a little later, is exciting and rewarding. To provide them the information and education about this disease is 1 of the favorite things I do in my job: taking care of these kids and adults with atopic dermatitis.
Marc Serota, MD: Another important point regarding the patient’s quality of life is that if it’s a pediatric patient, it can affect their ability to sleep. It can affect school performance, and it can be very difficult not just for the patients but also assessing how the parents and the caregivers are feeling about their child’s disease and how it’s impacting their quality of life as well.
When you’re counseling parents in the office, 1 thing that always comes up is how long is my child going to have this? I always start by explaining that atopic dermatitis at its core is a genetic skin condition. Patients and parents are always looking for what they’re doing to cause the disease, what external factor is causing their disease, so I always try to start the conversation [by saying] this is a genetic skin condition. There are certain triggers that can flare it and make it worse, but at its core, it’s a genetic problem. There’s not something you’re doing that caused you to have this disease in the first place.
Transcript edited for clarity.
