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Of the over 100,000 people in the U.S. with sickle cell disease (SCD), many face barriers to care in the forms of racism, low income, and lack of access to treatment through publically insured programs. As a result, this population can often find themselves cornered into what feels like a healthcare system that does not work for them. Health literacy is one critical aspect in navigating the healthcare system as a young adult with SCD.

As adolescents with SCD transition into adults who need care, health literacy becomes an important factor in predicting outcomes and navigating the risks of morbidity and mortality. This study, published in the Journal for Specialists in Pediatric Nursing, sought to compare the health literacy rates of adolescents with and without SCD.

This cross-sectional, descriptive, exploratory study included 134 adolescents with SCD and 105 adolescents without SCD. The study evaluated the relationship between health literacy and different factors, such as age, income, grade level, and parental education levels.

Using the Newest Vital Sign (NVS) test, the researchers assessed the participants’ health literacy. The NVS test consists of questions on how to read a food label and make calculations on the information provided. This test has been used extensively in health literacy studies and is endorsed by over 25 peer-reviewed studies.

Ultimately, the study found a significant association between health literacy, age, and grade level in adolescents with SCD. In contrast, a significant relationship was found between health literacy, income level, and parental education levels in adolescents without SCD. Overall, NVS scores were significantly lower in adolescents with SCD versus those without SCD.

This study suggests that patient education is vital for patients to understand their treatment options and ways to access the right treatments for them. Low health literacy scores in adolescents with SCD may indicate the need for better communication strategies, increased health education, and expanded care opportunities to accommodate these shortcomings. In addition, psychosocial intervention may be an added benefit to ensuring a comprehensive health management plan for these adolescents.

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More studies are needed to pinpoint the effects of health literacy on barriers to treatment for adolescents with SCD. Still, this study helps clarify the need for clear communication from providers to offer the highest quality care and close the health literacy gap [1].


[1] Perry Caldwell, E., & Killingsworth, E. (2021). The health literacy disparity in adolescents with sickle cell disease. Journal for Specialists in Pediatric Nursing, 26(4). https://doi.org/10.1111/jspn.12353