266546 A Pilot Study of the Health Literacy of Adolescents and Young Adults with Sickle Cell Disease

Tuesday, October 30, 2012

Lisa Shook, MA, MCHES , Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
Clinton Joiner, MD, PhD , Cincinnati Comprehensive Sickle Cell Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
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.

Learning Areas:
Assessment of individual and community needs for health education

Learning Objectives:
To identify health literacy levels of adolescents and young adults with sickle cell disease.

Keywords: Adolescents, Health Literacy

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have been the principal investigator on a state and multiple federally funded grants focusing on individuals with sickle cell disease. My scientific research interest includes health literacy and health education, specifically with individuals with sickle cell disease.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.