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. 2017 Nov;5(6):692-699.
doi: 10.1002/mgg3.327. Epub 2017 Aug 23.

Sickle cell trait knowledge and health literacy in caregivers who receive in-person sickle cell trait education

Susan Creary  1 , Ismahan Adan  1 , Joseph Stanek  1 , Sarah H O'Brien  1 , Deena J Chisolm  1 , Tanica Jeffries  1 , Kristin Zajo  1 , Elizabeth Varga  1
Affiliations

Sickle cell trait knowledge and health literacy in caregivers who receive in-person sickle cell trait education

Susan Creary et al. Mol Genet Genomic Med. 2017 Nov.

Abstract

Background: Despite universal screening that detects sickle cell trait (SCT) in infancy, only 16% of Americans with SCT know their status. To increase SCT status awareness, effective education for patients and their families is needed. The objective of this study was to assess caregivers' SCT knowledge before and after an in-person SCT education session.

Methods: A trained educator provides in-person SCT education to caregivers of referred infants with SCT at Nationwide Children's Hospital. From August 2015 to July 2016, primarily English-speaking caregivers of infants with hemoglobin S-trait were recruited and completed a health literacy assessment and a SCT knowledge assessment (SCTKA) before and after receiving education. Caregivers repeated the SCTKA again after ≥6 months, if they could be contacted.

Results: Thirty-eight (38.1%) percent of 113 caregivers had high SCTKA scores (≥75%) before education but 90.3% achieved high scores after education. Caregivers with low SCTKA scores after education had significantly lower health literacy (P = 0.029) and baseline SCTKA scores (P = 0.003) compared to those with higher scores after education. At ≥6 months, caregivers' scores were significantly higher (P = 0.014) than baseline, but only 73.3% scored ≥75%.

Conclusion: Our results suggest that caregivers' baseline SCT knowledge is low, improves with in-person education but may decline with time. Caregivers who do not achieve high SCT knowledge after education had lower health literacy and baseline knowledge. Future studies should determine if adapting in-person education to caregivers' health literacy and knowledge levels results in high and sustained SCT knowledge among all caregivers and more individuals who know their SCT status.

Keywords: Health literacy and knowledge; sickle cell disease; sickle cell trait education.

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Sickle cell trait knowledge in caregivers who completed pre‐, post‐, and follow‐up assessments.
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