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

Abstract

BackgroundDespite 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.MethodsA 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.ResultsThirty‐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%.ConclusionOur 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.

Identifying Factors Underlying the Decision for Sickle Cell Carrier Screening Among African Americans Within Middle Reproductive Age

“…Approximately 1 in 12 (8.3%) African Americans is a carrier (Brousseau et al 2010;Goldsmith et al 2012;Hassell 2010). Because SCT is not reliably recoded in medical records and many parents are not informed of their child's status during screening at birth, only 16% of individuals within childbearing age know their SCT status (Creary et al 2016;Kavanagh et al 2008;Pass et al 2000). These carriers will not develop sickle cell disease; however, they can unknowingly pass the trait on to their offspring.…”

Sickle cell carriers' unmet information needs: Beyond knowing trait status

“…Much of the current research on sickle cell carriers focuses on increasing knowledge of SCT, increasing knowledge of SCD, and providing reproductive counseling (Creary et al, ; Housten et al, ; Ulph, Cullinan, Qureshi, & Kai, ,). While these are areas of great importance for SCT, studies are beginning to highlight the issue of intergenerational communication.…”

“…Many participants in this study had received information on SCT from their parents. Yet, by the time Studies on the association between health literacy and SCT genetic knowledge are limited (Creary et al, 2016). Further research is warranted to provide sickle cell carriers with written informational support that meets their health literacy needs.…”

“…General practitioners, whose clientele includes patients with SCT, are often tasked with deciding how much information to disclose, streamlining the communication process, and balancing information sharing in the context of uncertainty of how it will impact patients (Lautenbach, Christensen, Sparks, & Green, 2013). Despite providers offering information, resources, and education to facilitate informed decision-making, studies consistently report that sickle cell carriers have insufficient or erroneous knowledge about the risk of complications associated with SCT, the genetic inheritance pattern of SCD, and are misinformed about their own or their partner's SCT status (Acharya et al, 2009;Creary et al, 2016).…”

The Harms of Carrier Status Identification: A Cautionary Warning Against Newborn Sequencing

“…(3) increased parental assessment of child vulnerability after carrier identification. [3][4][5][6] And yet, despite reaffirming the potential harms of carrier status identification in NBS, Farrell et al expect it to expand, concluding that they "suspect that genome sequencing on blood spots will be routine within the coming generation, regardless of ELSI [ethical, legal, and social implications] concerns." Below, we explore why the data from Farrell et al further strengthen the ethical, legal, and social concerns and reject the inevitability of universal adoption of genomic sequencing into NBS programs.…”