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Pediatric care requires understanding, not only of the disease impact, but also its presentation and management in children.
Pediatric care requires understanding, not only of the disease impact, but also its presentation and management in children. The Pediatric Dermatology Research Alliance (PeDRA) Patient Advisory Committee (PtAC) sought to expand the understanding on patient and caregiver preferences in order to highlight research areas in need of focus.
"Eliciting insights fromaffected populations helps providers understand and honor patient preferences when co-creating treatment plans for children with cutaneousdiseases such as atopic dermatitis, acne, psoriasis, and skin cancer," Holly Neale, MD, Pediatric Dermatology Research Alliance, University of Massachusetts Chan Medical School, and investigators wrote in the study.
Unique insights from patients have led to the development of many useful tools including validated quality of life measurement, core outcome sets, and patient centered approaches to counseling discussion in clinics, according to investigators. Knowledge gaps surrounding the curaneous clinical presentations and natural histories of rare symptoms have been filled.
Because of this, the team of investigators put their efforts into data-driven analyses to efficiently progress the future of investigational focuses of pediatric dermatology.
The emerging priorities of the field were curated by data from the 2021 PeDRA Annual Conference which derived from discussions at the 2020 PeDRA Annual Conference. The project received an exemption determination from Genetic Alliance institutional review board.
The research consisted of consensus-styled approaches to combine survey and serial meetings supervised by experienced facilitators. Recruitment included individual perspectives from the inter and intra community capacity including PeDRA and pediatric dermatology research association.
Representatives of patients who were also members of PtAC that had one of the following dermatologic condtions: psoriasis, alopecia areata, atopic dermatitis, vascular birthmarks, cogenital melanocytic nevi, ectodermal desplasias, epidermolysis bullosa, Gorlin syndrom, hidradenitis suppurativa, ichthyosis, pemphigus, Sturge-Weber syndrome, or pachyonychia congenita.
After 14 individuals (86.7% women) who represented pediatric patients with a dermatologic condition and attended PrAC meetings completed the study survey, 60 points of research were identified within 5 domains: psychosocial challenges, health care navigation/diseasemanagement, causes/triggers, treatments to preserve or save life, and treatments topreserve or save quality of life, were identified.
The prominent finding revealed 2 domains classified as psychosocial challenges and health care navigation/disease management. Causes and triggers were identified as causes and triggers, treatments to preserve or save life, and quality of life.
"Many pediatric dermatology research priorities align across affectedcommunities and may drive meaningful, patient-centric initiatives and investigations," investigators wrote.
The study "Defining patient-centered research priorities in pediatricdermatology" was published in Pediatr Dermatol.