A Pilot Study of the Health Literacy of Adolescents and Young Adults with Sickle Cell Disease

Background: Sickle cell disease (SCD) affects approximately 90,000 individuals, primarily African-Americans, in the US. Studies report African-Americans typically have lower health literacy levels than average. Adolescents with SCD face challenges, including to transition to adult care and becoming responsible for self-management of their illness. Health literacy assessment is an important step of the transition process.

Methods: Adolescents recruited and consented, and REALM-Teen and a demographic survey administered.

Results: 37 adolescents and young adults (14-22 years old) with SCD participated. Highest educational level completed was 7th grade (8%), 8th grade (28%), 9th grade (12%), 10th grade (8%) 11th grade (16%) and 12th grade (28%). REALM-Teen results showed the majority (48%) of participants had a score that correlated to 6th – 7th grade levels; 8% scored less than 3rd grade level; 8% scored 4th – 5th grade level; 16% scored 8th – 9th grade level and 20% scored 10th grade level and above. Participants' confidence in understanding medical information from healthcare providers in sickle cell clinic: 52% “usually” understood, 36% understood “about half of the time” and 12% “always” understood. When asked about understanding directions on their prescriptions, 62% “always” understood, 20% “usually” understood and 18% understood “about half of the time.”

Conclusion: Pilot study demonstrated the average health literacy level of teens and young adults is the 6th-7th grade level. Sample size is a study limitation and enrollment will continue. Understanding the health literacy level of adolescents with SCD is important when creating educational materials and programs.