A health literate evaluation of a reproductive health education program for young men with sickle cell disease.

Abstract

Background: Health literacy (HL) is known to be low among those with sickle cell disease (SCD). Reproductive health knowledge gaps exist among those with SCD, which drove the research team to create an education tool for adolescent males entitled, 'Fertility edUcaTion to Understand ReproductivE health in Sickle cell disease' (FUTURES) in 2023. This study sought to evaluate and revise FUTURES using HL tools and a community-advised review to improve clarity, understandability, actionability, and relatability.

Methods: Four evaluators conducted a HL assessment of the original and revised FUTURES programs using the Patient Education Assessment Tool for Audio/Visual Materials (PEMAT-AV) and the modified Centers for Disease Control and Prevention Clear Communication Index (CDC-CCI-modified). Paired samples t-tests were used to compare PEMAT-AV and CDC-CCI-modified scores between the original and revised versions of FUTURES. Community advisory board feedback identified opportunities to improve program design.

Results: HL assessment revealed high HL demand of the original FUTURES program. The revised program had significantly higher understandability and clarity scores and was re-designed to be more engaging and representative of the intended audience. However, the CDC-CCI-modified score fell below the recommended threshold and actionability remained unchanged.

Conclusions: This study outlined an approach that prioritized HL and community voices when revising an education tool, which could be used in future efforts to design accessible and relatable patient education materials for this population and others. More work is needed to evaluate the impact of the HL revision process on patient knowledge and outcomes for this and other at-risk patient populations.