Children with moderate to severe eczema experience extreme discomfort, sleep disturbance, depression, and difficulty in school. The impairment in quality of life has been shown to be greater than or equal to that of asthma and diabetes. Patients, parents, and caregivers have experiential knowledge about how to best manage the condition on a day-to-day basis, an understanding of interventions that are or are not feasible for young children, and insights from their trial-and-error approaches to treating the disease. Likewise, researchers have information about discoveries and advancements in treatment that may take years to reach families in the absence of a more direct communication channel.
In Tier I, we built a robust international parent/caregiver partnership and engaged in a formal research priority–setting process. Three research topics were identified through this process as highest priority for further development. In Tier II, we will refine, revise, and improve these research ideas and shape them into final comparative effectiveness research questions through close partnerships with researchers and using input from diverse stakeholders. We will employ an inclusive, collaborative process. Ultimately, this effort will lead to a patient-centered research agenda for moderate to severe pediatric eczema that will result in meaningful improvements in quality of life for children affected by this difficult-to-manage condition.