Health Literacy and Sickle Cell Disease: An Assessment Of Adolescents, Young Adults and Caregivers

Sickle cell disease (SCD) is an inherited, lifelong disease affecting red blood cells. In the US, SCD affects approximately 100,000 individuals. SCD is typically diagnosed at birth with newborn screening, and the burden of disease management during childhood, including prevention of complications, medication management including decision-making about treatments, and navigating the healthcare system, falls to the caregiver. As life expectancy with SCD increases well into adulthood, this responsibility progressively transitions to adolescents in tandem with transition to adult care.

Health literacy is defined by the Institute of Medicine as “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions”. This includes understanding medication instructions, consent forms, patient education materials, and navigating complex healthcare systems. Understanding healthcare providers’ verbal and written instructions, and asking medical providers questions are also important aspects. Additionally, individuals with a chronic illness must understand and self-manage needs specific to their condition, including recognizing critical signs and symptoms.

Research has demonstrated a relationship between low health literacy and poor outcomes in a number of chronic illnesses. However to our knowledge, there is not published research specifically about SCD and health literacy.

Caregivers of children ages newborn – 18 years old with a confirmed diagnosis of SCD were recruited at the Cincinnati Comprehensive Sickle Cell Center (CCSCC), and adolescents/young adults (14-22 years old) with SCD were recruited at the CCSCC and the University of Cincinnati Adult Sickle Cell clinic. Caregivers completed a demographic survey and Newest Vital Sign (NVS) health literacy test. Adolescents/young adults completed the REALM-Teen and demographic survey.

To date, 56 caregivers have participated in the study with the majority being the child’s mother; the majority of these caregivers' children have Hb SS (Hb SS 71%; Hb SC 27% SB+beta thal 2%). Demographics showed that 56% of participants completed high school/GED; 21% obtained a bachelors’ degree, and 14% obtained a master’s degree. Over 95% of caregivers reported confidence in understanding information from healthcare providers, and over 85% reported “always understanding prescription directions.” Additionally, 90% reported being comfortable asking a healthcare provider questions during a clinic visit. Consistent with this, NVS results indicated that 93% of caregivers had “adequate” or “limited” health literacy and only 7% had a “high likelihood of limited health literacy”.

To date, 50 adolescents/young adults have participated in the study: Hb SS (54%), Hb SC (20%), SB+Beta Thal (6%), beta thal intermedia (2%), and unknown Hb on self-report (16%). REALM-Teen results showed that the majority (52%) of adolescents/young adults obtained a health literacy score equivalent to the 6^th-7^th grade levels; 20% scored consistent with an 8^th-9^th grade level; 18% scored at the10^th grade level and above; 6% scored at the less than 3^rd grade level, and 4% scored at the 4^th-5^th grade level. In contrast to this, 66% of adolescent/young adult respondents reported that they usually understand medical information from healthcare providers, and 72% reported that they “always” understand prescription directions.

Health literacy assessments of caregivers of children with SCD demonstrated overall “higher than average” health literacy. However, the average health literacy level of adolescents and adults with SCD appears to be much lower (6^th-7^th grade level). The study is continuing to enroll participants so this could change with a larger sample size. Despite this limitation, this study highlights the importance of understanding health literacy levels of caregivers and adolescents/young adults with SCD and the need to tailor patient education materials to meet health literacy needs.

No relevant conflicts of interest to declare.