By Steve Nelson
This article is the first in a series provided by the National Eczema Association.
More than 31 million Americans live with eczema, and yet the condition affects every person differently. The disease is complex and heterogeneous: every patient has a unique interplay of triggers, symptoms, comorbidities, and disrupted lifestyle. Given these variables, healthcare providers can benefit from hearing the individual experiences and concerns of their patients with eczema as they determine an appropriate and more personalized treatment plan. Eczema usually begins in infancy or childhood, but it can develop any time in a person’s life. Symptoms can vary greatly across different demographic groups. The severity of eczema ranges from mild, to moderate, to severe. Three essential diagnostic criteria to determine the severity of a patient’s condition include: the amount of body surface area affected, intensity of flares and frequency of flares. Chronic itchy skin is a universal symptom of most types of eczema. Caregivers of children with eczema carry a significant burden, reporting frustration, anxiety, sleeplessness, and “desperation” while trying to manage their child’s symptoms. Many people with eczema share a common hope when choosing a treatment: immediate and sustained relief from itch. Designing the perfect treatment plan starts with listening to the patient’s unique experience, concerns, and treatment preferences, from which a discussion about the available and appropriate options can occur. Through the process of shared decision making, the patient and healthcare provider, working together, can best customize a solution that meets each individual patient’s or caregiver’s needs.
Eczema, atopic dermatitis, shared decision making, dupilumab, burden of disease
More than 31 million Americans live with eczema, and yet the condition affects every person differently. The disease is complex and heterogeneous: every patient has a unique interplay of triggers, symptoms, comorbidities, and disrupted lifestyle. Given these variables, healthcare providers can benefit from hearing the individual experiences and concerns of their patients with eczema as they determine an appropriate and more personalized treatment plan.
As the largest patient advocacy organization serving those who live with eczema and those who care for them, the National Eczema Association (NEA) collects, interprets, and distributes patient-reported data and insights that increase awareness of the patient’s individual experience with the disease. In 2019, NEA co-hosted the landmark Patient-Focused Drug Development (PFDD) meeting for eczema where insights on the lived experience from patient and caregiver panels, as well as a survey administered prior to the meeting, were shared directly with representatives of the United States Food and Drug Administration (FDA), drug manufacturers, and other key stakeholders highlighting the burden of disease and implications of managing and treating eczema. The key findings and patient perspectives were published in the More Than Skin Deep Report, many of which are cited in this article; NEA also conducts regular surveys of the eczema community and select findings of that research is also included here.
AGE OF DIAGNOSIS, SYMPTOMS, AND PREVALENCE
Eczema usually begins in infancy or childhood, but it can develop any time in a person’s life. Symptoms look different in infants and toddlers than in older children. With infants, early signs of the disease usually appear on the face, cheeks, chin, forehead, and scalp. As babies with eczema start crawling, symptoms can also appear on their elbows and knees. Eczema is also common in adults over the age of 60, with research into the adult onset of eczema on the rise. Skin can become drier and thinner as patients age, leaving the skin barrier less robust and more susceptible to environmental triggers.1
Symptoms can vary greatly across different demographic groups. In patients with lighter skin, eczema often appears as a red, itchy rash or dry, scaly patches on the skin; in patients of color, eczema can look darker brown, purple, or ashen grey in color. In the United States, atopic dermatitis (AD) affects a greater percentage of Black children and White children compared to Hispanic children,2-4 whereas Black and Hispanic children tend to have more severe AD compared to White children.5
SEVERITY OF DISEASE
The severity of eczema ranges from mild, to moderate, to severe. Three essential diagnostic criteria to determine the severity of a patient’s condition include: the amount of body surface area affected, intensity of flares and frequency of flares. Alex Lumsden, a college freshman, described his mild-to-moderate eczema as “somewhat uncomfortable,” with a rash on his neck, arms, and legs. However, over time Alex’s condition progressed and became severe. “I don’t want to move in the morning,” he said, “because my entire face and arms are caked in dead skin cells and pus that has risen at night.”6 Lindsay J., in describing her own severe eczema, said that she would wake up “unconsciously clawing at [her] skin.” Additional patient-reported symptoms of severe eczema may include blood-stained clothing or sheets, shame, disrupted personal relationships, negative self-image, anxiety, depression, and suicidal thoughts. Eczema can affect mental health incrementally, as well: healthcare providers can include mental health screening as a preventative practice in eczema management, even in the absence of any patient-reported mental health symptoms.
BURDEN OF DISEASE
Chronic itchy skin is a universal symptom of most types of eczema. A recent survey of adults with moderate to severe AD found that 70.5 percent of respondents reported severe, unbearable itch in the past two weeks; 85.8 percent reported daily itch; and 62.8 percent reported itching at least 12 hours per day.7 Patients also report skin pain, with 33 percent of adults with AD reporting weekly pain and 5.2 percent reporting daily pain because of their AD.8
Sleep disturbance is also widely reported: 15 to 30 percent of adults with AD experience sleep-related issues including insomnia, daytime sleepiness, and fatigue, and rate sleep disturbance as the ‘most’ or ‘second-most’ burdensome symptom.9 Sarah Pry explained how caring for her son impacted her sleep patterns. “There are nights I’ve slept in the same bed as him,” she said. “I rub and scratch gently for him. If I don’t, he can—and he literally will—tear himself apart.”
Additional burdens that patients and caregivers report include the following:
• financial costs
• lost time at work
• hospitalization due to infection
• delays in education
• loss of friendships
• complications with physical intimacy
• emotional and mental exhaustion from the chronic nature of the disease.
CAREGIVERS AND ECZEMA
Caregivers of children with eczema carry a significant burden, reporting frustration, anxiety, sleeplessness, and “desperation” while trying to manage their child’s symptoms. “This was not how we envisioned life as new parents,” said Joseph Cutaran, father of two young children with eczema. Caregivers of children with eczema reported higher rates of sleep disturbance (48%) than adults with eczema (22%).6 Keri Kelley said, “Living with eczema means calling the pediatrician at 3:00 a.m., begging for a sedative just to let [her son] get some sleep.”
Caregivers also reported helplessness, disappointment, and guilt for not being able to help their children. Sarah Pry said that her son “has not had, and possibly never will have, the childhood that [she] had wished for him.”
ECZEMA AND COMORBIDITIES
Diagnosed comorbidities are common across all demographics of people with eczema. Children with AD typically develop other atopic conditions in a sequence including food allergies, allergic rhinitis, and asthma–a progression known as the atopic march.10 Mental health comorbidities are also widespread in patients with eczema. Children and adolescents with AD are 2 to 6 times more likely to have depression, anxiety, or attention deficit hyperactivity disorder than children without AD.11,12 Ashley Ellis explained that her daughter Hadley’s anxiety increased so much when she flared that she “stopped eating at school” and that it eventually progressed to “full panic attacks.”6 Adults with AD have a two-and-a-half to three-fold higher risk for anxiety or depression that increases with disease severity,13 and rates of suicidal ideation are 44 percent more likely in people with AD.14
CARE AND TREATMENT
Many people with eczema share a common hope when choosing a treatment: immediate and sustained relief from itch. Lisa Choy, eczema patient and NEA board member, said, “My primary quality of life issue is itch. It’s the itch that drives me crazy.” Alison Piluso agreed: “I just want to not itch.” And Stephen Gawron focused on itch, as well: “Please focus on helping us reduce the itch as that’s where it all starts.”
The challenge and opportunity for patients—and their healthcare providers—is collaborating on the right treatment for each individual. For example, patients report that affordability is a critical component in making a treatment plan work for them, so an open dialogue and exchange of information may best inform an optimal treatment plan. NEA’s recent Out of Pocket Survey revealed that “48.6 percent of AD patient and caregiver respondents had OOP costs for prescriptions not covered by their insurance.15 Additionally, patients at the PFDD meeting used words like “convenient,” “safe,” and “easy to obtain” when describing their ideal treatment. Other patients expressed their desire to see more treatments that focused on the underlying biology of the skin.
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2. Shaw TE, Currie GP, Koudelka CW, Simpson EL. Eczema prevalence in the United States: data from the 2003 National Survey of Children’s Health. J Invest Dermatol. 2011;131(1):67-73.
3. Silverberg JI, Simpson EL. Association between severe eczema in children and multiple comorbid conditions and increased healthcare utilization. Pediatr Allergy Immunol. 2013;24(5):476-486.
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6. McClearly K. The More Than Skin Deep “Voice of the Patient” Report. MoreThanSkinDeep-eczema.org. Published March 2020. Accessed May 19, 2021. http://www.morethanskindeep-eczema.org/report.html
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9. Silverberg JI, Gelfand JM, Margolis DJ, et al. Patient burden and quality of life in atopic dermatitis in US adults: A population-based cross-sectional study. Ann Allergy Asthma Immunol. 2018;121(3):340-347.
10. Spergel JM. Epidemiology of atopic dermatitis and atopic march in children. Immunol Allergy Clin North Am. 2010;30(3):269-280.
11. Garg N, Silverberg JI. Association between childhood allergic disease, psychological comorbidity, and injury requiring medical attention. Ann Allergy Asthma Immunol. 2014;112(6):525-532.
12. Paller A, Jaworski JC, Simpson EL, et al. Major comorbidities of atopic dermatitis: Beyond allergic disorders. Am J Clin Dermatol. 2018;19(6):821-838.
13. Cheng BT, Silverberg JI. Depression and psychological distress in US adults with atopic dermatitis. Ann Allergy Asthma Immunol. 2019;123(2):179-185.
14. Sandhu JK, Wu KK, Bui TL, Armstrong AW. Association between atopic dermatitis and suicidality: A systematic review and meta-analysis. JAMA Dermatol. 2019;155(2):178-187.
15. Smith Begolka W, Chovatiya Raj, Thibau I, Silverberg J. Financial burden of atopic dermatitis out-of-pocket health care expenses in the United States. Dermatitis. 2020;10:1097.
Steve Nelson is Senior Editor, National Eczema Association in Novato, California.
Disclosures: The author has disclosed no potential conflicts of interest, financial or otherwise, relating to the content of this article.