{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,2]],"date-time":"2026-10-02T01:00:20Z","timestamp":1790902820852,"version":"4.1.0"},"reference-count":21,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2017,8,23]],"date-time":"2017-08-23T00:00:00Z","timestamp":1503446400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000009","name":"Foundation for the National Institutes of Health","doi-asserted-by":"publisher","award":["1 K23 HL127303\u201001"],"award-info":[{"award-number":["1 K23 HL127303\u201001"]}],"id":[{"id":"10.13039\/100000009","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Molec Gen &amp; Gen Med"],"published-print":{"date-parts":[[2017,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Despite universal screening that detects sickle cell trait (<jats:styled-content style=\"fixed-case\">SCT<\/jats:styled-content>) in infancy, only 16% of Americans with <jats:styled-content style=\"fixed-case\">SCT<\/jats:styled-content> know their status. To increase <jats:styled-content style=\"fixed-case\">SCT<\/jats:styled-content> status awareness, effective education for patients and their families is needed. The objective of this study was to assess caregivers\u2019 <jats:styled-content style=\"fixed-case\">SCT<\/jats:styled-content> knowledge before and after an in\u2010person <jats:styled-content style=\"fixed-case\">SCT<\/jats:styled-content> education session.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A trained educator provides in\u2010person <jats:styled-content style=\"fixed-case\">SCT<\/jats:styled-content> education to caregivers of referred infants with <jats:styled-content style=\"fixed-case\">SCT<\/jats:styled-content> at Nationwide Children's Hospital. From August 2015 to July 2016, primarily English\u2010speaking caregivers of infants with hemoglobin S\u2010trait were recruited and completed a health literacy assessment and a <jats:styled-content style=\"fixed-case\">SCT<\/jats:styled-content> knowledge assessment (<jats:styled-content style=\"fixed-case\">SCTKA<\/jats:styled-content>) before and after receiving education. Caregivers repeated the <jats:styled-content style=\"fixed-case\">SCTKA<\/jats:styled-content> again after \u22656\u00a0months, if they could be contacted.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Thirty\u2010eight (38.1%) percent of 113 caregivers had high <jats:styled-content style=\"fixed-case\">SCTKA<\/jats:styled-content> scores (\u226575%) before education but 90.3% achieved high scores after education. Caregivers with low <jats:styled-content style=\"fixed-case\">SCTKA<\/jats:styled-content> scores after education had significantly lower health literacy (<jats:italic>P<\/jats:italic>\u00a0=\u00a00.029) and baseline <jats:styled-content style=\"fixed-case\">SCTKA<\/jats:styled-content> scores (<jats:italic>P<\/jats:italic>\u00a0=\u00a00.003) compared to those with higher scores after education. At \u22656\u00a0months, caregivers\u2019 scores were significantly higher (<jats:italic>P<\/jats:italic>\u00a0=\u00a00.014) than baseline, but only 73.3% scored \u226575%.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Our results suggest that caregivers\u2019 baseline <jats:styled-content style=\"fixed-case\">SCT<\/jats:styled-content> knowledge is low, improves with in\u2010person education but may decline with time. Caregivers who do not achieve high <jats:styled-content style=\"fixed-case\">SCT<\/jats:styled-content> knowledge after education had lower health literacy and baseline knowledge. Future studies should determine if adapting in\u2010person education to caregivers\u2019 health literacy and knowledge levels results in high and sustained <jats:styled-content style=\"fixed-case\">SCT<\/jats:styled-content> knowledge among all caregivers and more individuals who know their <jats:styled-content style=\"fixed-case\">SCT<\/jats:styled-content> status.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mgg3.327","type":"journal-article","created":{"date-parts":[[2017,8,24]],"date-time":"2017-08-24T01:26:41Z","timestamp":1503538001000},"page":"692-699","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":28,"title":["Sickle cell trait knowledge and health literacy in caregivers who receive in\u2010person sickle cell trait education"],"prefix":"10.1002","volume":"5","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4730-8139","authenticated-orcid":false,"given":"Susan","family":"Creary","sequence":"first","affiliation":[{"name":"Nationwide Children's Hospital Columbus Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ismahan","family":"Adan","sequence":"additional","affiliation":[{"name":"Nationwide Children's Hospital Columbus Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joseph","family":"Stanek","sequence":"additional","affiliation":[{"name":"Nationwide Children's Hospital Columbus Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah H.","family":"O'Brien","sequence":"additional","affiliation":[{"name":"Nationwide Children's Hospital Columbus Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Deena J.","family":"Chisolm","sequence":"additional","affiliation":[{"name":"Nationwide Children's Hospital Columbus Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tanica","family":"Jeffries","sequence":"additional","affiliation":[{"name":"Nationwide Children's Hospital Columbus Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristin","family":"Zajo","sequence":"additional","affiliation":[{"name":"Nationwide Children's Hospital Columbus Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth","family":"Varga","sequence":"additional","affiliation":[{"name":"Nationwide Children's Hospital Columbus Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2017,8,23]]},"reference":[{"key":"e_1_2_7_2_1","first-page":"389","article-title":"Elk Grove Village, IL. 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