Adolescents with Sickle Cell Disease Demonstrate Limited Health Literacy

Elizabeth Perry Caldwell, PhD, RN, CNE

A new study observed disparities in health literacy between adolescents with and without sickle cell disease.

An exploratory study led by Elizabeth Perry Caldwell, PhD, RN, CNE, and Erin Killingsworth PhD, RN, CNE, of Louise Herrington School of Nursing at Baylor University, measured health literacy among sickle cell disease patients using the Newest Vital Sign health literacy instrument, thus comparing scores with non-sickle cell individuals.

“Adult health literacy is shown to be a better predictor of health outcomes than educational level, race, age, employment status, or income," Caldwell and Killingsworth wrote. “Recent data suggest that health literacy may also significantly influence health behaviors in adolescents.

They explained the health literacy could influence health outcomes and transition experience among patients with sickle cell disease.

The Study

The investigators recruited a total of 239 individuals, 134 of whom had sickle cell disease. The mean age of the sickle cell population was 14.9 years—compared to 15.87 years in the non-sickle cell population.

The sickle cell cohort was recruited from a large, tertiary care center, while adolescents without sickle cell disease were recruited more widely across Texas.

Each participant was administered the NVS, a tool designed to evaluate literacy, numeracy, and the ability to locate and apply information.

The assessment consisted of an ice cream nutrition label, followed by relevant questions. The likelihood for limited health literacy was then determined based on the participant’s score (maximum, 6 points).

The Results

The mean NVS score for sickle cell patients was 2.66, versus 3.77 in the non-sickle cell population. The differences in scores between the groups was found to be statistically significant (t = 4.772; P<.001).

Although these findings suggested lower health literacy levels in patients with sickle cell disease, Caldwell and Killingsworth noted that the mean scores from both groups demonstrated the possibility of overall limited health literacy.

They further observed that age (r = .286, P < .01) and grade level (r=.317, P = .00) were significantly and positively correlated with health literacy. However, there were no significant relationships between health literacy and household income or parental education level.

On the contrary, among patients without sickle cell disease, annual household income (r = .235; P<.05) and parental education level (r = .263; P<.01) were significantly and positively associated with health literacy, while age or grade level had no such relationship.

“These differences are noteworthy and more research is needed to better understand these differences,” the investigators wrote. They emphasized the importance of conducting systematic evaluations of the influencing factors and consequences of health literacy.

“Gaining further insight into health literacy and health outcomes in adolescents with SCD provides a potential path forward towards more successful transitions from pediatric care to adult care in these patients,” Caldwell and Killingsworth wrote.

“With this knowledge, nurses can fight the struggle against systematic lifelong inequities of care for patients with SCD with more focus and fervor, with hopes of better health outcomes and longer lives for these patients,” they concluded.

The study, “The health literacy disparity in adolescents with sickle cell disease,” was published online in Journal for Specialists in Pediatric Nursing.