HELP-KIDNEY: Health Literacy and Patient Outcomes in Pediatric Kidney Transplant

BackgroundBelow adequate health literacy is common and linked to increased risk of adverse health outcomes. Supporting optimal health following kidney transplantation requires the capacity to understand health information and make decisions about care. The impact of low health literacy in the context of pediatric kidney transplant has not previously been studied.MethodsThis retrospective cohort study sought to determine the relationship between caregiver or patient health literacy and healthcare utilization (outpatient hospital visits, days in hospital) and to explore relationships between health literacy and adherence to tacrolimus (trough level coefficient of variation) and allograft function post-transplant.ResultsForty patients were included in the analysis. 60% were identified as having adequate literacy using the Newest Vital Sign (NVS). Lower health literacy was significantly correlated with increased healthcare utilization in the first 3 months post-transplant (rs = -0.36, p = 0.024) and in the first year post-transplant (rs = -0.35, p = 0.029). No association was demonstrated between health literacy level and number of days admitted to the hospital (rs = -0.16, p = 0.321), adherence to tacrolimus 6-12 months post-transplant (rs = 0.078, p = 0.68), or change in allograft function 2 years post-transplant (rs = -0.13, p = 0.43).ConclusionLimited health literacy is common in pediatric kidney transplant recipients and families and is associated with increased frequency of hospital and outpatient clinic department visits early post-transplant. In this small-sized cohort, we did not identify a relationship between health literacy level and hospitalization days, allograft function, or tacrolimus adherence. Larger studies are needed to evaluate the relationship between health literacy and transplant outcomes in children and test interventions that may improve communication and optimize care.