Caregiver word reading literacy and health outcomes among children treated in a pediatric nephrology practice

BACKGROUND Caregivers play a major role in the healthcare of pediatric patients, particularly during childhood and adolescence. This study examined the impact of caregivers' functional literacy on the health outcomes of adolescents with chronic kidney disease (CKD) or end-stage kidney disease (ESKD). METHODS Caregiver-child dyads in a Southeastern US pediatric nephrology clinic participated in this cross-sectional study. We collected demographic information, data on caregivers' functional literacy skills (Wechsler Individual Achievement Test Word Reading Subtest) and child health outcomes (healthcare utilization and adherence). Negative binomial regression analyses were used to test the relationships. RESULTS A total of 98 pediatric patients and their caregivers participated. Caregivers' word reading literacy was associated with their children's healthcare utilization. Patients whose caregivers had lower word reading literacy skills (<7th grade) had greater incidence of emergency room (ER) visits (adjusted incidence rate ratio = 2.05, 95% confidence interval: 1.007, 4.177, P < 0.05) after adjusting for major demographic factors. Patients' hospitalization rates and adherence to medication/diet/appointments were comparable in the two groups. CONCLUSIONS Low caregiver functional word reading literacy was negatively related to health outcomes of adolescents with CKD/ESKD as reflected by greater ER visits. Educational materials and teaching strategies (dialysis training protocols, patient education materials) adjusted for low literacy levels may contribute to better outcomes.