Q. What role does the psychosocial burden of psoriasis play in the pediatric population?
A. One important consideration to address first in terms of psychosocial burden is how we define psoriasis severity. The traditional definition is based solely on body surface area (BSA) of involvement. In pediatric and adult patients, BSA does not tell the whole story. There are some patients who have 80% BSA, but if most of the psoriasis is hidden and does not bother them, they may not want aggressive treatment. That’s not to say we should undertreat this patient, as we know that inflammation and widespread disease can have systemic impacts such as early cardiovascular disease in adults and so forth, but the point is to emphasize that sometimes psoriasis does not impact the psyche at all, but other times we may have a patient with only 2% BSA, but that BSA happens to involve the face and the genitals, and this psoriasis is symptomatic, itchy, and bothersome. The psychosocial impact would be much greater and may necessitate a more aggressive treatment protocol despite the very low BSA involved.
So, in terms of psoriasis severity, it is really important to take inventory of not only the BSA, which is an objective measure, but also the subjective measures: How does the psoriasis make the patient feel? Is psoriasis keeping a child out of school? Are they engaging with their peers, or are they socially isolating because they’re embarrassed? Are there other impacts on their health as a result of the psychological impact of having a visible disease, such as social isolation, coping by overeating and subsequent development of obesity?
Having a visible condition in childhood and early adolescence is one of the big predictors of problems with self-esteem development and overall future psychological health. It really is important that when a child has visible psoriasis to recognize that even a 1% BSA can be a burden. Take for example a child who may have both of their palms and their nails involved. That might not seem like a lot, but when they are in art or music class trying to participate in a project or play an instrument with their friends, or they want to play baseball but their hand is cracked and bleeding when they put on their glove, or people are shunning them because they think they have something contagious—that psychological impact is huge. We should not only address that burden, but we should also use it to determine what our treatments are and how we are going to approach a child. This might call for escalation of management, despite objectively “mild” disease, if a child is emotionally and psychologically impacted.
The nuance here, I think, is that for a long time it has been thought that if the psoriasis is visible, looks bad, and feels bad, then the sadness or anxiety result as a downstream consequence. But there actually may be some pathophysiologic pathways where there is a high level of tumor necrosis factor (TNF) or a TNF imbalance, for example, in a psoriatic plaque but also a TNF imbalance in the brain and the central nervous system that might lead to depression and other symptoms. Dr John Koo, a psychiatrist and psoriasis expert, and I have had conversations around the idea that it might not just be a downstream consequence of a visible disease but more an intrinsic psychiatric issue related to an imbalance of inflammation.
Q. What strategies do you recommend for addressing this impact?
A. The psychosocial aspects of psoriasis impact kids of different ages in different ways. Very young children are not really aware of how their skin may be different. But it is well established that around the age of 3 or 4 years, kids start recognizing differences in their peers vs themselves. As they enter preschool and kindergarten, that can be a crucial time to address the differences in appearance.
There is a two-part approach to addressing a child’s difference in appearance and interaction with the world around them. One is treating the psoriasis, but the other is arming children of all ages with a response to public commentary. This means teaching children about what they have, what to call it when somebody asks them, and how to redirect the conversation and move on. We teach the “identify, explain, distract”, or name it, explain it, move on, technique to children and parents. For example, if a peer says, “Ew, what is that on your hands?”, the child responds with “Oh, it’s just psoriasis” (name it). “It’s a skin condition, but you can’t get it. It’s not contagious” (explain it). The last step is to distract, so the child would then say something like “Do you want to go ride bikes?” to move the conversation on.
Teaching kids of all ages in developmentally appropriate language to understand their condition and how it impacts them and their peers is valuable, now and for their future. I spend quite a bit of time in my clinics teaching not only kids but also their parents that we have to talk about psoriasis. The most important thing a dermatologist can do during a visit is ask an open-ended question such as How is your psoriasis impacting you? or Is your psoriasis preventing you from doing things you’d like to be doing?, and wait for the answer. When we give children the space to tell us how their psoriasis is impacting them, this lets them know that it is not a matter of vanity, but a critically important piece of information that helps us develop a management plan. Some families are under the misguided perception that bringing up the idea that by asking, we might make a child psychologically vulnerable and that is not the case. Asking a patient if their psoriasis bothers them does not make their psoriasis bother them, just like asking a patient if they are depressed and suicidal does not make them depressed and suicidal. It just gives space for that dialogue to happen. It is very important to have that dialogue.
Children with psoriasis have a 25% to 30% increased risk of developing depression and anxiety, and the earlier patients have depressive or anxious episodes in life, the more likely the child will have chronic psychiatric disability.1 So, it is a really nuanced issue but important to understand that that risk of psychiatric disturbance, probably in large part, reflects the social stigmatization of the disease itself but also a likely immunopathologic pathway between inflammation in the brain and inflammation in the skin. We really need more research to clarify that distinction, but it is important not only to address it, but also to manage to the level of disability, whether that is functional/physical, psychiatric, or emotional. We have to make sure our treatment plans adequately address the inflammation, and have a low threshold to refer to mental health experts when necessary to aid in the psychological comorbidity if present.
Q. What other aspects of psychosocial burden should dermatologists consider?
A. I see this in my own patients, but there are also data to suggest that quality of life is negatively impacted not only among affected children, but among their caregivers. Dr Megha Tollefson at the Mayo Clinic did a great study on impact of disease on caregivers of children with psoriasis.2 Children with psoriasis often have overly complicated treatment plans, which can have a large impact on parents or caregivers who are trying to manage treatment as well as the emotional ramifications of being a caregiver of a child with a chronic illness. Simply asking caregiver, “Hey Mom, hey Dad, how’s this going for you?” establishes that you care, it matters, and knowing this information will inform medical management plans.
Quality of life can be measured with validated instruments, but it also can just be measured with a simple open-ended question. Providers should not feel like they have to use sophisticated tools, inventories and questionnaires in their clinics. Just having a conversation about impact beyond the skin is incredibly valuable and will allow for a more optimally productive relationship with patients and their parents. The ultimate goal is better therapeutic and functional outcomes for the child and the family.
1. Osier E, Wang AS, Tollefson MM, et al. Pediatric psoriasis comorbidity screening guidelines. JAMA Dermatol. 2017;153(7):698-704. doi:10.1001/jamadermatol.2017.0499
2. Tollefson MM, Finnie DM, Schoch JJ, Eton DT. Impact of childhood psoriasis on parents of affected children. J Am Acad Dermatol. 2017;76(2):286-289.E5. doi:10.1016/j.jaad.2016.09.014