First person storytelling: Improving kidney education for Spanish speakers with advanced kidney disease - Optimizing kidney replacement therapy (KRT) initiation is a national priority. Adequate pre-dialysis preparation reduces urgent and sub-optimal dialysis initiation, which is linked to higher mortality and lower use of permanent access or home dialysis. Despite its benefits, populations with Limited English Proficiency (LEP) are less likely to receive adequate pre-dialysis education and yet experience disproportionately higher rates of kidney disease. Indeed, Spanish-speaking populations experience a dearth of culturally and linguistically concordant education and receive a large amount of their health education from their community. Thus, tailored culturally concordant strategies that center the patient lived experience are needed to bridge these gaps and ensure adequate KRT education for groups disproportionately affected by kidney disease. First-person storytelling (FPS) narratives, which are evidence-based digital narratives shared by individuals in their own words, may address this gap. Through centering the patient lived experience, FPS narratives have shown effectiveness in improving health outcomes in chronic disease states such as diabetes and hypertension; however, FPS narratives for people with LEP and advanced kidney disease have not been tested or tailored. In line with NIDDK’s mission to “disseminate and implement evidence-based strategies to improve health and engage stakeholders as partners in research”, the goal of this application is to tailor and test a novel first-person story telling narrative video education intervention for Spanish speakers with advanced kidney disease. In Aim 1, I will develop and conduct a survey utilizing a Best-Worst Scaling instrument, which will elicit and quantify preferences regarding delivery of the intervention. In Aim 2, I will tailor the narratives through iterative educational material development via learner verification and revision, which will ensure that educational materials are suitable, understandable, and culturally acceptable. In Aim 3, I will test the tailored intervention in a single-arm pilot trial with Spanish speaking patients with advanced kidney disease, with the goal to assess feasibility, acceptability, and explore trial penetration, preparation for dialysis, and patient activation in kidney care. Through my comprehensive career development plan, excellent mentoring and advisory team, and the outstanding training environment of Boston University Chobanian & Avedisian School of Medicine and Boston Medical Center, the proposed research will provide me training in survey development, multivariate statistical modeling, culturally tailoring educational messages, and trial design. My multidisciplinary mentor/advisor team with experience in clinical trials, interventions with LEP populations, and implementation science will guide my transition to independence. The results of this proposal will inform my subsequent R01 application to study the FPS narratives in a multicenter, hybrid effectiveness- implementation randomized clinical trial.
