This proposal is a multidisciplinary research and training plan to rigorously evaluate and refine a user-centered mobile application (app) for childhood nephrotic syndrome management and enable the applicant, Chia-shi Wang, to obtain the skills needed for an independent research career in kidney disease intervention development and implementation. The broad objectives of the research proposal are to improve self- management and clinical outcomes of childhood nephrotic syndrome, one of the most common chronic kidney diseases in children. The disease is characterized by a relapsing-remitting pattern in the majority of patients and has high rates of complications and treatment side effects. Vigilant home care is central to disease management, yet many families find it difficult to adhere with the demands. Our interdisciplinary team has built a novel mobile app (UrApp) to assist families with self-management. UrApp has excellent technical validity and was well-received by users in preliminary usability testing. In this proposal, we will conduct a pilot randomized trial in three pediatric sites among caregivers of children with newly diagnosed nephrotic syndrome to evaluate the efficacy of UrApp in improving behavioral and biologic outcomes (Aim 1). Concurrently, we will perform process evaluation to determine influences on the effectiveness of UrApp (Aim 2). Lastly, we will engage caregiver stakeholders to use the results of the clinical trial and process evaluation to refine UrApp and plan a future user-centered, full-scale clinical trial (Aim 3). The anticipated outcome is the development of a novel, pragmatic, technology-based intervention that is ready for full-scale testing in a user-centered clinical trial. This proposal is made possible by the applicant?s exceptional research environment. Emory?s Division of Pediatric Nephrology is one of the largest pediatric nephrology programs in the U.S. with many successful, extensive research collaborations with other pediatric institutions, ensuring the feasibility of the current proposal. A strong alliance between Emory University, Children?s Healthcare of Atlanta, and Georgia Institute of Technology enabled the developed of UrApp and provides multidisciplinary mentorship in clinical trial research, behavior science, implementation science, and biostatistics. The mentorship, along with the courses available at Emory, will provide exceptional training for the applicant. In addition, the research activities will provide Chia-shi Wang with hands-on training in qualitative research, mixed-methods analysis, process evaluation methodology, and stakeholder engagement methodology. These new skills will augment the applicant?s background in clinical practice, clinical trials research, and quantitative research with expertise in behavioral and implementation sciences. The successful completion of the proposal will therefore provide Chia-shi Wang with a distinctive skillset to enable an independent research career and produce one of the first evidence-based disease management tools for the childhood nephrotic syndrome population.
Idiopathic nephrotic syndrome is one of the most common chronic kidney diseases in children and patients suffer from high rates of disease relapse and complication. Self-management is difficult for families and nonadherence rates with management tasks are high with adverse effects on the children?s health. The development of a user-centered, evidence-based, pragmatic mobile application has the potential to help families improve their well-being and enhance the health of children living with nephrotic syndrome.
