Disease-Specific Knowledge Assessment of Caregivers Is a Better Predictor of Health Care Utilization Than Caregiver Functional Health Literacy Among Children with Sickle Cell Disease

Recent data suggests 20–30% of parents of young children in the United States have low health literacy. Caregiver health literacy has implications for recognizing illness and can affect child health outcome. We used the Short Test of Functional Health Literacy in Adults (S-TOFHLA), a 36-item validated measure of functional health literacy (FHL) that can be administered in a short period of time, to identify caregivers of children with sickle cell disease that had inadequate or marginal FHL. We further sought to identify caregivers' disease-specific knowledge (DSK) deficits by administering our own unique questionnaire. We then determined if FHL and DSK were related to emergency department (ED) visits and hospitalizations.

We conducted a cross-sectional study of caregiver-child dyads from a sample of children aged 12 months to 18 years that presented to routine visits in a comprehensive sickle cell clinic at an urban teaching hospital. Caregivers were administered the S-TOFHLA and also given a 22-item questionnaire assessing both demographic data and also qualitative and quantitative measures of DSK. A 12-month retrospective review of the child's electronic medical record was then performed to determine number of annual emergency room visits and hospital admissions at our institution.

A total of n=85 caregiver-child dyads were enrolled in the study during one year of recruitment. On the S-TOFHLA, only 3/85 caregivers (3.5%) had inadequate or marginal FHL. Of all 85 caregivers, 82% identified themselves as mothers to the patient, while 6% were fathers. Nearly 97% graduated from high school. We selected 12 unique items assessing DSK on our questionnaire and gave each item a value of 1 point. Caregivers were divided based on correct answers to these 12 items using a median split, with 49/85 caregivers (n₁) scoring between 9–12 and 36/85 caregivers (n₂) scoring 8 or less. Although there was no difference in FHL outcome between the two groups, those in n₁ scored slightly higher on the 36-item S-TOFHLA than those in n₂ (average 33/36 vs. 34/36, p=0.01). Group n₁ was more likely to have attended college (p=0.03) and children of caregivers in this group were younger (average age 9 years vs. 12 years, p=0.008). Children of caregivers in n₁ were nearly twice as likely to visit the ED than those in n₂ (p<0.01). Rates of hospitalizations were similar between the two groups, but the ratio of hospitalizations to ED visits for group n₁ was 1.3 times that of n₂.

Only 3.5% of caregivers of children with sickle cell disease had inadequate or marginal FHL. Our data suggests caregivers with more DSK were more educated and more likely to identify illness in their children. Knowledge-based questionnaires for chronic childhood illnesses such as sickle cell disease may be more useful than standard measurements of FHL to assess caregivers' ability to identify and react to illness.

No relevant conflicts of interest to declare.