This study was conducted to measure the health literacy (HL) and disease-specific knowledge (DSK) of caregivers for children with sickle cell disease (SCD) and relate them to their child's health care utilization. The authors conducted a cross-sectional study of caregiver-child dyads attending an urban pediatric sickle cell clinic. Caregivers were administered the Shortened Test of Functional Health Literacy (S-TOFHLA) and a locally developed DSK questionnaire. Retrospective review of the child's electronic medical record (EMR) was performed to determine annual emergency department (ED) visits and hospitalizations. A total of 142 caregiver-child dyads were recruited for the study. Less than 5% of caregivers had limited HL, with less education (P =.03) and primary language other than English (P =.04) being the only risk factors. Although caregiver HL was not associated with ED visits or hospitalizations, surprisingly DSK was. Caregivers with higher DSK scores had children with higher annual rates of ED utilization (P =.002) and hospitalizations (P =.001), and these children were also more likely to be classified as high ED utilizers (≥4 visits per year; P =.01). Further, caregiver adherence to medication and clinic visits was associated with their child's age (P =.01). Although HL and DSK are both constructs that measure basic health understanding, they differently affect caregivers' ability to navigate and understand the health care system of children with chronic illnesses. This study suggests that the DSK/health care utilization relationship may be a more important measure than HL for programs following children with sickle cell disease and could also have applications in other pediatric chronic diseases.
Keywords: Disease-specific knowledge; health care utilization; health literacy; sickle cell disease.