Perception Discord Between Pediatric Patients With AD and Physicians

Although routine assessment of patients with atopic dermatitis (AD) focuses on evaluation of skin signs, examinations largely lack adequate assessment of how AD affects quality of life (QoL), particularly in children, teens, and young adults.¹

In a recent survey, an international team of researchers found that perceptions among patients regarding the most burdensome aspects of AD on QoL can differ from the perceptions of their physicians.² The survey included 1,447 children and teens aged 6 to 17 years with moderate to severe AD, 1,447 paired parents/caregivers, and 1,092 physicians. According to the survey findings, physicians generally acknowledged the affect moderate to severe AD has on daily life, but many of these physicians said they do not discuss QoL factors with their patients or their parents/caregivers.

We spoke with Amy S. Paller, MD, chair, Department of Dermatology and director, Skin Biology and Diseases Resource-Based Center at Northwestern University in Chicago, Illinois, who participated in conducting  the survey, to obtain a better understanding of the study findings and their context for clinical care.

Why are patient-reported outcomes and QoL assessments important for ensuring the quality care of pediatric patients with AD?

To put it simply, the QoL impact is the most important parameter for any disease, especially for patients. If something doesn’t affect somebody in any way, it becomes much less important to treat. When you weigh the potential value, risks, and benefits of using a medication, then you always have to think about the full impact of the disease.

For pediatric AD, the QoL parameter is a concept that really is judged only from asking the patient and/or the parent. Otherwise, the physician is merely basing an assessment on what the skin looks like, which often doesn’t have a good correlation with the QoL impact. For instance, if you’re just looking at the redness, scaling, or even the oozing, you really can’t know what the need is for that particular patient without asking the question and learning about the experienced QoL.

Given that the survey found that AD affects sleep and mental/emotional health in children and teens, is it possible the condition also affects academic performance?

When you don’t sleep, you’re exhausted the next day and you can’t be at your best at school. When your disease is severe, you may not even be able to go to school. Unfortunately, there’s clearly been shown to be a relationship between absence in school and not being able to function well in school and AD severity. If you can’t even get to school because of severe disease, then there’s no question your academic performance is going to suffer. There wasn’t a specific question in our survey that looked at academic performance, but we did have a question about missed school days, which certainly was observed in all groups. Certainly, this was another thing the doctors underestimated.

Why do physicians not routinely discuss QoL factors with patients and/or their caregivers?

There are 2 major reasons. One is time. In this particular study, there was a mix of different types of physicians, including 45% dermatologists, 26% general practitioners, 19% pediatricians, and 10% allergists/immunologists. No matter the physician, many have a busy practice. For some people, looking at the skin is all they do and they don’t have very much time to discuss QoL. The physicians may often say, “You’re not doing so well? OK, we’re going to up the medicine.” Others will at least ask about the itch and sleep quality and factor that into their decision making.

To actually talk about school or feelings takes even more time, and you have to have a relationship to broach some of these subjects. Sometimes it’s a sensitive topic, or the patient may not want to “open up” even if the disease is having a major impact on their psyche. Then, of course, the doctor has to recognize that these are even questions to ask. For dermatologists, there’s a decent amount of training about AD, but this education doesn’t necessarily get into the impact on QoL, including the psychosocial impact and the emotional impact of this disease. Whether we’re talking about the bullying that can occur, the feeling of being ashamed or sad, or we’re just talking about the self-imposed social isolation – it’s all so difficult to navigate.

These are all issues these children with AD experience, but even in dermatology it’s not necessarily taught because the main focus is how to treat the disease. What medications are out there? How do we respond to the physical signs? Then you’ve got general practitioners and pediatricians who may not even take an elective in dermatology. Instead, they learn how to recognize and/or treat eczema from a nondermatologist in a cursory way and possible even in outpatient setting. That means their knowledge is also limited, both in terms of treatment and questions that are really important to patients and families.

Why might there be disparities between children/teens and their practicing physicians regarding perceptions of the burdensome aspects of AD?

In the study, there was a strong concordance between what the patients experienced and what the parent sees the patients experiencing compared with what the physicians reported. Ultimately, this is because of the fact the physicians aren’t living with the disease. The physicians are only understanding the impacts of the disease if they take the time to ask, particularly if they ask the right questions. Additionally, understanding the disease impact is contingent upon a relationship of trust with a specific patient.

We, as physicians, are certainly trained to look and make judgements in terms of the need of that patient and what we see. We’re better trained to do that based on the appearance, while the patient and family are the only ones who can experience the subjective components, including itch, pain, and certainly day-to-day impacts. There’s naturally going to be a discordance between what the doctor thinks, especially when there’s limited time and the right questions are not asked.

Disclosure: This survey study was supported by research sponsored by Sanofi and Regeneron Pharmaceuticals. Several authors declared affiliations with the pharmaceutical industry. Please refer to the original article for a full list of disclosures.

References

1.  Na CH, Chung J, Simpson EL. Quality of life and disease impact of atopic dermatitis and psoriasis on children and their families. Children (Basel). 2019;6(12):133. Published 2019 Dec 2. doi:10.3390/children6120133

2.  Weidinger S, Capozza K, Pink AE, et al. Relative importance of distinct aspects of quality of life for patients aged 6–11 and 12–17 years with atopic dermatitis, caregivers, and physicians (AD-GAP). Presented at the 2021 European Academy of Dermatology and Venereology (EADV) congress September 29, 2021.