AAD-PEPR Atopic Dermatitis Project:
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Atopic dermatitis (AD, eczema) is a chronic, inflammatory, itchy skin condition that usually develops in infancy or early childhood. There has been a steep rise in the prevalence of eczema, with up to 20% of children in developed countries now suffering from the disease. In the United States, AD affects about 17% of children with 37% of affected school-aged children having moderate to severe disease and greater severity in lower socioeconomic and minority populations. Although AD is a common condition, there remains uncertainty among health professionals, patients, and caregivers regarding optimal treatment. The psychological, financial, and social burdens of AD are substantial. Childhood AD not only produces physical symptoms such as pruritus, skin discomfort and sleep disruption, but also causes emotional distress, frustration, behavior problems, isolation, embarrassment, social stigma, low self-esteem and poor body image. Eczema is thought to result from the interplay of environmental triggers, skin barrier dysfunction, and immune-mediated inflammation, leading to intense itch and disease flares. These factors exacerbate each other, creating rapidly escalating inflammation and discomfort, with environmental triggers (such as irritants, climate, bacterial overgrowth, and psychological stress) profoundly affecting both the barrier disruption and immune activation.
The difficulties associated with itching and associated scratching are typically the first to be mentioned by parents when asked about the effects of their child’s disease. The mechanisms underlying AD-associated itch remain unclear; it is an area of active research. Itch is considered a crucial contributor to sleep disruption in children with AD, yet available sleep questionnaires do not adequately address the central role of itch in sleep issues.
Our primary objective is to evaluate the validity, reliability and responsiveness of pediatric PROMIS measures in children with AD. We also are working on developing an itch item bank to complement the currently available, more generic pediatric PROMIS tools, thereby capturing the full spectrum of patient-reported outcomes (PROs) and their impact in children with chronic pruritic skin disorders. Aligned with our PROMIS standards and philosophy, we are developing the item pool to be “generic” wherever possible, so that itch in children with other conditions can also be measured precisely.
Upon completion of this project, we expect to have reliable and validated clinical tools, including a new itch item bank, to improve the assessment of outcomes in clinical trials or other research settings and personalize ongoing care of children with AD and other conditions associated with itch. Given the close relationship between AD flares and environmental exposures, these tools will allow for future studies to investigate the impact of environmental stressors on children’s health including their symptoms, functioning and general QOL.
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