The following has been adapted from transcripts of Expert Insights in Atopic Dermatitis: Confronting Issues and Challenges Beneath the Surface, a multimedia content series examining atopic dermatitis at levels deeper than the skin’s surface. This series is developed in partnership with the National Eczema Association and is made possible through funding from AbbVie.
Assessing Severity and Impact, featuring Dawn M.R. Davis, MD
Clinical and QoL Indicators of Disease Severity
Commonly, there are three severity gradations for AD: mild, moderate, and severe. Mild AD is demonstrated on the patient's skin by mild erythema, mild skin accentuation, dryness, and mild to minimal scale. Moderate levels of AD are similar to mild but more intense: increased erythema, increased lichenification and accentuation of skin lines, increased dryness demonstrated by further scale, the presence of superficial erosions, and excoriation. Severe AD demonstrates all of those findings, plus oftentimes, skin infiltration and exudate.
Oftentimes, use of a particular QOL rating scale or body surface area (BSA) measurement is insufficient to truly express the impact of the dermatitis on the patient. When someone has generalized disease, it is obvious to the patient, provider, and others that their QOL is impacted because you can see they are inflamed and have active skin disease. However, if somebody has localized disease in only a sensitive area, that area can cause enough symptomatology on its own that, even if it is a small BSA, it can have profound consequences for the patient with regards to QOL (Table 5). Thus, assessing AD by BSA alone is insufficient. The entire picture should be taken into consideration. QOL factors are very important for patients and their caregivers and influence how they perceive their own disease severity. Some QOL factors are evident to the patient, their caregiver, and the provider, such as work or school attendance, cost or availability of medications, or sleep quality, consistency, and hygiene. Other factors may impact patients and not be as readily evident, such as psychosocial and mental health concerns: bullying, being embarrassment from their skin appearance, fear of contagion (from others), or fear of social stigma. Oftentimes, others imply the AD is the patient’s “fault”, caused by something he/she did voluntarily. Other concerns include downstream ramifications of work or school truancy, including missing school or work to attend medical appointments.
Atopic comorbidities can affect QoL and the severity rating as well. It is not uncommon for patients with AD to have other medical conditions related to atopy, such as allergic rhinoconjunctivitis, reactive airway disease or asthma, and/or food allergies. If any of those atopic diseases tend to be flaring or are poorly controlled, oftentimes the patient will have difficulty with his/her skin disease at the same time.
I like to educate my patients and their caregivers that AD is a systemic disease requiring a whole person perspective and whole person care, often in conjunction of our friends in primary care, allergy, social work, psychology, and psychiatry.
Assessing Severity in Clinical Practice
With regards to clinical or scoring assessment of AD and/or QOL, there are several scales available to dermatologists, primary care providers, allergists, and others (Table 6). Whether a provider uses a particular index in clinic is up to the provider and his/her choice. Some find it to be very helpful to monitor a patient over time. Others find it to be more useful for research or data collection versus day-to-day clinical management. Providers should be mindful and aware while various QOL assessments and scoring systems are available to providers, certain insurance companies or health care consortiums may require a QOL assessment, pain scale, or other QOL or severity index to reimburse medical care or treatments.
I prefer to use a 1 to 10 scale in my practice. I will ask the patient, “with 1 being almost nothing and 10 being the most severe state you can imagine, where would you put your sleep hygiene?” We can swap sleep hygiene for sleep quality, itch, discomfort, pain, concern, bullying, embarrassment, among others. For children who are younger and cannot necessarily articulate concerns on a numerical scale, use of a picture diagram with a spectrum of faces, from a happy face escalating to an angry or sad face, is helpful. Ask the patient to point to the face they identify with most.
I also like to list their activities of daily living and top hobbies. For example, when I see a patient who enjoys swimming, in follow up I may ask: Were you able to continue swimming? Have you had to adapt your swimming regimen? Have you had to give up swimming? How are you accommodating swimming into your life with eczema? These questions allow me to make a relative gradation of not only severity and QoL but also their response to treatment, so I know if treatment needs to be escalated or modified.
Sometimes as providers, we play detective to help our patients. To ensure I am monitoring how AD impacts my patient and their family unit, I try to dig a little deeper with two to three questions into the why or how. Then, to confirm I have an understanding, I will clarify with follow up questions. The classic question I prefer to ask is: If you could only name one thing that drives you crazy, or that you could fix, about your eczema, what would it be? This tells me their biggest stumbling block. I follow up with the “three question”: If you could only tell me three things that bothered you about your atopic dermatitis, what would they be? This question tells me if the answer changes or expands, and guides me on management.
There is more emphasis on quality of life in medical care. There are many more treatment options available to our patients today, and several more on the horizon. This is very exciting for our patients! Along with this, I am pleased to say as a dermatology community, we are learning we should take these questions and their answers and be less hesitant to acknowledge the severity of this disease. With the clinical and emotional factors of severity in mind, if a patient is on the edge of mild to moderate or moderate to severe, it is okay to upgrade the severity. When you upgrade severity, do not be shy to be more proactive and more aggressive with regards to treatment escalation. Start second-line therapy sooner. Patch test earlier. Try phototherapy sooner. Consider a systemic biologic or immunomodulator earlier. This all benefits our patients in the long run.
Engaging the Patient in the Management of Their Disease
It is important to have a thorough and crucial conversation with your patient and their family unit or caregiver when a diagnosis of AD is made. While patients would prefer that AD be a short, time limited condition that can be easily fixed with a pill or cream, preferably a one time use, as we all know, that is not practical. I discuss with them the concept that now that they have AD, they will likely need to adapt some basic things in their activities of daily living to help their skin (Table 7).
These changes become their new normal; sensitive skin care is indefinite, and intervention with first- and second-line therapies comes and goes as the eczema waxes and wanes. I also like to explain although the skin is an organ you can see, it is not uncommon to have dryness and itch that you cannot necessarily see with the naked eye. This may signal active dermatitis or inflammation. We do not necessarily need to have a frankly erythematous, weeping, crusting rash to have an AD flare. In my patients with skin of color particularly, I like to explain at times, it is very difficult to see the early onset stages of inflammation. I typically talk with all patients, regardless of skin type, about the phenomenon of postinflammatory pigment change and how it can be hypopigmented, hyperpigmented, or both. This can be of great concern in patients with skin of color. Sometimes, regardless of patient, there are questions, sensitivities, or perceptions that accompany the concept of postinflammatory pigment change, where it is presumed to be different than eczema, or hard to distinguish active inflammation from postinflammatory pigment change.
It is very important to educate and empower the patient and have them understand he/she is the focus and center of the AD care team. What I like to say is “You are driving your eczema bus, not me. I am simply in the passenger seat helping you drive”. It is my obligation and pleasure as their physician to understand who the patient is, what their lifestyle is like, and how I can best help them, presenting an array of treatment options. I can explain the benefits, risks, side effect profiles, logistics, and potential glitches of each therapy. By arming the patient with that information, he/she is empowered to make an informed decision based on who they are, what works best for their lifestyle, and which treatment options they would like to try. When I see the patient at follow up, because they are aware of the options, if a particular therapy is not working, we can nuance it and move on to a different treatment or adapt it slightly to meet their needs. I always make sure to connect the patient with patient advocacy groups and resources because I find that step to be very helpful. Patient advocacy groups can offer a different perspective and a community to the patient. They often have blog sites or frequently asked questions sections. The patient can use it as a second resource and a source of reprieve or validation. They may feel more comfortable discussing certain topics with the community rather than with the physician. It is important over time for the patient and the provider to develop a cohesive relationship because we are here to help our patients, answer their questions, and help them and their skin feel better. With regards to AD, it really is a care team model, with the patient at the center and focused as our point of discussion. The National Eczema Association CUBE C project (Coalition United for Better Eczema Care) discovered it takes several visits, three to four on average, for patients to feel comfortable with eczema with regards to its pathophysiology, sensitive skin care regimen, escalated treatment options, and their specific care routine. It takes time for their questions and concerns to be addressed before they feel confident in their skin. Dermatologists should be mindful to educate their patients that AD is not simply a skin disease and will require more than one visit with likely more than one modality and treatment approach to find improvement, with sensitive skin care (including avoidance of allergens and irritants and consistent moisturization) and prescription modalities and interventions in the dermatologist's office (such as phototherapy) as first-, second-, and systemic advanced-line therapies thereafter.