A review of select sickle cell disease education materials reveals that many of these patient resources are too difficult for most U.S. adults to understand, according to a study from the University of North Carolina at Chapel Hill.
Researchers reviewed 13 free patient-education materials, giving them scores based on health literacy. They found that the materials require too high a level of reading and math skills to be helpful to most Americans.
The Centers for Disease Control and Prevention suggests that an appropriate Literacy-Index score should fall in or above the 90th percentile. The scores for the materials evaluated in this assessment ranged from the 44th to the 76th percentiles. Eight of the 13 materials scored within the acceptable range for cultural sensitivity.
Many issues that affect the lifelong health of people with sickle cell disease were not covered in the materials. Management of sickle cell disease differs from childhood to adulthood, and no specific guidelines were offered for each stage of life in the materials assessed. Finally, perhaps the most complex issues in living with sickle cell relate to accessing information on pain management and routine care. The materials examined in this study did not address these issues directly.
“This study supports the importance of health literacy as a key consideration in the development and revision of patient education materials for people with sickle cell disease,” researchers suggest. “Health departments should assess the suitability of materials they distribute in their communities.”
Article: A Mismatch Between Patient Education Materials About Sickle Cell Disease and the Literacy Level of Their Intended Audience, Elizabeth McClure, MS; Jared Ng, MD; Kelly Vitzthum, MPH; Rima Rudd, ScD, Preventing Chronic Disease, doi: 10.5888/pcd13.150478, published 12 May 2016.