Health Literacy and Disease Knowledge in Adolescents and Young Adults with SCD in Benin

Introduction: Disease knowledge and health literacy are important health competencies that individuals with chronic conditions like Sickle Cell Disease (SCD) need for self-management. This study aimed to: (I) describe and compare SCD knowledge and health literacy levels in adolescents and young adults (AYAs) with SCD in Benin; (II) examine associations between genotype, socio-demographic factors, health literacy, and SCD knowledge; and (III) examine the associations between patients SCD knowledge, health literacy, socio-demographic factors, and (a) frequency of hospitalisations and (b) frequency of occurrence of painful episodes. Methods: AYAs aged 14 to 25 years with SCD attending routine consultations at two Benin clinics—the National Sickle Cell Disease Centre (CPMI-NFED) and the Haematology clinic of the University Teaching Hospital (CUMAS), completed a questionnaire assessing SCD knowledge and health literacy (Health Literacy Measure for Adolescents, HELMA). Results: Most participants had inadequate health literacy: 72.1% at CPMI-NFED and 82.1% at CUMAS, with no significant differences between centres (t = 1.642, p = 0.200). CPMI-NFED participants had higher SCD knowledge than those at CUMAS (t = 4.303, p = 0.038). Higher SCD knowledge (β = 0.466; p < 0.001) and health literacy (β = 5.081; p < 0.001) were associated with older age. Tertiary-level education was associated with higher health literacy (β = 4.286; p = 0.023). Participants with high SCD knowledge experienced fewer painful episodes (IRR = 0.777, p = 0.046), but no significant differences in hospital admissions (IRR = 0.764, p = 0.162). Conclusions: Inadequate health literacy is common in AYAs with SCD in Benin. Having high SCD knowledge may have an impact on the occurrence of painful episodes.