Sickle Cell Trait Knowledge and Health Literacy in Caregivers Who Receive in-Person Sickle Cell Trait Education

Abstract

Background Sickle cell trait (SCT) affects approximately 8% of African Americans and these individuals are at risk of having children with SCT and sickle cell disease (SCD). Universal newborn screening in the United States detects SCT, but only 16% of individuals of childbearing age with SCT know their status. This is because SCT is not reliably recorded in medical records and SCT may not be consistently or effectively communicated to caregivers. Interventions that increase caregivers' SCT knowledge are important so that individuals with SCT can make informed decisions about their reproductive health. Objectives The objectives of this study were to determine if in-person SCT education with a trained educator improved caregivers' SCT knowledge and to assess caregivers' satisfaction with their SCT education. Methods Nationwide Children's Hospital (NCH) is a SCT referral center in Columbus, OH. At NCH, it is standard that caregivers of infants with SCT who are referred by their primary care providers receive in-person SCT education using visual aids from an educator who has completed a hemoglobinopathy counselor training course. From August 2015-July 2016, we performed a prospective, cross-sectional study of English-speaking caregivers of infants with hemoglobin S-trait who presented for education. Caregivers were excluded if they had SCD or previously received SCT education at NCH. Prior to receiving education, subjects electronically reported their demographic information and completed a health literacy assessment using the Newest Vital Sign (NVS, range 0-6) and an 8-question (true/false, multiple choice) pilot-tested, SCT knowledge assessment (SCTKA) that included items from a published SCT knowledge study and items routinely discussed during NCH SCT education. Lower NVS scores suggest a higher likelihood of limited health literacy. Caregivers with SCTKA scores <75% were considered to have low knowledge. Immediately after receiving education, caregivers repeated the SCTKA and provided feedback about the session. Assessments were not available to the educator during the session. The Wilcoxon Signed-Rank test was used to compare SCTKA scores pre- and post-education. Mann-Whitney tests were used to compare NVS and pre-SCTKA scores between those with high and low SCT knowledge after education. Results We recruited 114/374 eligible caregivers who presented during the study period and 113 completed the study. Subjects were mostly female (77%), 18-39 years of age (95.6%), parents or step parents (95.6%) of the child, and some (34.8%) reported that they had SCT. Many caregivers (52.2%) had NVS scores <4, but most (94.7%) reported the education was easy to understand, their questions were answered (99.1%), and they do intend to inform their child of their SCT status (99.1%). Caregivers' median pre-education SCTKA score significantly improved from 62.5% (IQR=25%) to 87.5% (IQR=12.5%) with education (p <0.0001). Only 38.1% of caregivers had high SCT knowledge pre-education but most (90.3%) achieved high knowledge with education. Caregivers with low SCT knowledge after education had significantly lower NVS scores (median=1, p=0.0286) and baseline SCTKA scores (median=50%, p=0.0032) compared to those with high SCT knowledge after education (NVS=3.5, baseline SCTKA median=62.5%). Discussion Our study suggests that caregivers' baseline SCT knowledge is low and improves with in-person education. Despite overall caregiver satisfaction and intensive in-person education from a trained educator, approximately 10% did not achieve high SCT knowledge and our results show that these caregivers may have lower baseline SCT knowledge and health literacy. Assessing caregivers' health literacy and SCT knowledge prior to education may be useful to allow educators to modify their education to meet the needs of those with limited health literacy and SCT knowledge. Future studies need to determine if tailored education results in high SCT knowledge among all caregivers, if caregivers' SCT knowledge is sustained, and if high caregiver knowledge results in more individuals with SCT knowing their status and using this knowledge to inform their reproductive decision-making. Disclosures No relevant conflicts of interest to declare.

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.…”

“…Studies on the association between health literacy and SCT genetic knowledge are limited (Creary et al, ). 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, ). 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, ; Creary et al, ).…”

Incidence, demographic characteristics, and geographic distribution of sickle cell trait and sickle cell anemia births in Michigan, 1997–2014

“…A study of young adults with sickle cell disease or trait found that a web‐based intervention education program increased knowledge of sickle cell trait and disease, but did not affect intention or behavior to reduce their risk of having a child with sickle cell disease (Gallo et al, ). Another study of an in‐person educational intervention aimed at caregivers of children with sickle cell trait showed an increase in sickle cell trait knowledge that declined over time (Creary et al, ). Further research is necessary to understand the best approaches to providing individuals with sickle cell trait with the necessary information to make informed family planning decisions.…”

Creation and validation of a health guidance booklet for family members of children with sickle cell disease

“…8 However, national and international literature has revealed that many family members and caregivers have had low knowledge about sickle cell disease, its pathophysiology, genetic inheritance, complications, necessary care, among other information. [9][10][11][12] From this perspective, it is pointed out that health education aims to promote self-care in people with sickle cell disease; when infants, this care is linked to the relatives, because these people are dependent on others with greater age and knowledge. In this way, professionals must establish an educational process and preparation for both the sick and their families, related to daily activities, health maintenance, complications prevention and crisis management.…”