Background: While children are affected by every manner of disease, the burden of chronic skin disease is uniquely severe. Not only are these diseases prevalent, but they are visible, and take a devastating toll on the physical, social, and psychological well-being of children and their caregivers. Among chronic pediatric skin diseases, none matches atopic dermatitis (AD or eczema) in terms of prevalence, complexity of disease, heterogeneity of disease burden, and the breadth of emerging treatment options.
Proposed Solution to the Problem: This Engagement Award seeks to address the anticipated gap in education and awareness of patient and research stakeholders in the management of pediatric AD with emerging therapies to accommodate near-term treatment decisions and future patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER) amidst the backdrop of a rapidly evolving AD treatment landscape.
Objectives: The primary objective of this proposal is to improve long-term health outcomes for patients with pediatric AD by establishing broadly applicable capacity to shape efficient and effective PCOR and CER that inform treatment decisions for pediatric AD patients. We will: (1) Use gamification to equip clinician researchers, teens/young adults, and caregivers with relevant, relatable, and practical knowledge to participate in PCOR and CER and (2) Use gamified real-world engagement to translate knowledge into a meaningful basis for future PCOR and CER related to eczema treatment options, burdens, and unmet needs.
Activities: (1) The PeDRA Research App and NEA Research Ambassadors platforms will be used for ongoing engagement of the researcher and patient stakeholder audiences, respectively, through a series of games and virtual education modules that provide the opportunity for expansion of knowledge, creativity, and problem-solving relevant to PCOR and CER. (2) PeDRA Annual Conferences and NEA Eczema Expos will be used to facilitate in-person engagement between patient and research stakeholders using a gamified approach and initiate early-stage discussions of PCOR and CER in the field of pediatric AD.
Projected Outcomes and Outputs:
- Short-term (during project period): Patient and research stakeholders will demonstrate increased PCOR and CER competence and depth of knowledge regarding new and emerging treatments for pediatric AD and will establish (or strengthen) relationships capable of facilitating future partnerships on collaborative PCOR and CER.
- Medium-term (after project period ends): Patient-centered research priorities will be established and the first actionable PCOR and CER projects will begin with the support of stakeholders who participated in the activities of this engagement award.
- Long-term (after project period ends): Results from early-stage PCOR and CER for the management of pediatric AD in the new treatment landscape will be published and begin to inform shared decision making and best practices for disease management. Ultimately, this will improve quality of life and long-term health outcomes of importance for patients and healthcare providers by facilitating evidence-based decision making.
Patient and Stakeholder Engagement Plan: As an equal partnership between a patient advocacy organization (NEA) and research alliance (PeDRA) this project is inherently the product of fruitful engagement between patient and research stakeholders. Co-project leads from each organization and a multi-stakeholder steering committee will work together to shape project deliverables that engage teens and young adults with AD, parents of children with AD, and clinician-scientist researchers across all career stages in the field of pediatric dermatology.
Project Collaborators: PeDRA and NEA will operate as equal partners throughout the project representing a unified, strategic alliance between key research and patient organizations in the field of pediatric AD.
*The Pediatric Dermatology Research Alliance is partnering with the National Eczema Association on this Engagement Award project.