{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,29]],"date-time":"2026-09-29T18:38:19Z","timestamp":1790707099951,"version":"4.1.0"},"reference-count":58,"publisher":"Wiley","issue":"7","license":[{"start":{"date-parts":[[2019,4,2]],"date-time":"2019-04-02T00:00:00Z","timestamp":1554163200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000030","name":"Centers for Disease Control and Prevention","doi-asserted-by":"publisher","award":["U58 DD001138"],"award-info":[{"award-number":["U58 DD001138"]}],"id":[{"id":"10.13039\/100000030","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100013726","name":"Abraham J. and Phyllis Katz Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100013726","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Blood &amp; Cancer"],"published-print":{"date-parts":[[2019,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Patients with sickle cell disease (SCD) may require chronic transfusion therapy (CTT) for prevention of stroke or other complications. Limited health literacy (HL) is common and is associated with poor health\u2010related knowledge and outcomes in chronic disease. We sought to assess HL and transfusion knowledge in patients with SCD on CTT and their caregivers.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A cross\u2010sectional study of patients was conducted in outpatient hematology clinics. Forty\u2010five pairs of adolescent patients and caregivers and 20 caregivers of pre\u2010adolescent patients completed the Newest Vital Sign HL assessment and answered questions assessing SCD and transfusion knowledge. Community\u2010level median income and unemployment rates were estimated from Census data. We computed the correlation of HL with knowledge and compared each to Census variables, payor status, educational attainment, and stroke.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>HL was inadequate in 22 (34%) caregivers and 31 (69%) adolescents. Adequate caregiver HL was associated with higher educational attainment but not community\u2010level socioeconomics or payor status. Mean knowledge score was lower in adolescents than in caregivers and correlated with age in adolescents (r = 0.42, <jats:italic>P<\/jats:italic> = .004). HL correlated with knowledge (r = 0.46, <jats:italic>P<\/jats:italic>\u00a0&lt; .0001). There were no significant correlations of HL or knowledge between adolescents and their caregivers. Neither HL nor knowledge was associated with prior stroke. The greatest knowledge was demonstrated for iron overload and SCD genotype, whereas knowledge gaps existed in alloimmunization, indication for CTT, and SCD curative therapy.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Enhanced educational resources in transfusion therapy, alloimmunization, and curative therapy are needed for patients with SCD and caregivers of all HL levels.<\/jats:p><\/jats:sec>","DOI":"10.1002\/pbc.27733","type":"journal-article","created":{"date-parts":[[2019,4,3]],"date-time":"2019-04-03T03:44:51Z","timestamp":1554263091000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":17,"title":["Health literacy and knowledge of chronic transfusion therapy in adolescents with sickle cell disease and caregivers"],"prefix":"10.1002","volume":"66","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6082-8385","authenticated-orcid":false,"given":"Marianne E. McPherson","family":"Yee","sequence":"first","affiliation":[{"name":"Department of Pediatrics Division of Hematology\/Oncology Emory University  Atlanta Georgia"},{"name":"Aflac Cancer and Blood Disorders Center Children's Healthcare of Atlanta  Atlanta Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erin K.","family":"Meyer","sequence":"additional","affiliation":[{"name":"Department of Pathology and Laboratory Medicine Nationwide Children's Hospital  Columbus Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ross M.","family":"Fasano","sequence":"additional","affiliation":[{"name":"Department of Pathology and Laboratory Medicine Emory University  Atlanta Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peter A.","family":"Lane","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Division of Hematology\/Oncology Emory University  Atlanta Georgia"},{"name":"Aflac Cancer and Blood Disorders Center Children's Healthcare of Atlanta  Atlanta Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cassandra D.","family":"Josephson","sequence":"additional","affiliation":[{"name":"Department of Pediatrics Division of Hematology\/Oncology Emory University  Atlanta Georgia"},{"name":"Aflac Cancer and Blood Disorders Center Children's Healthcare of Atlanta  Atlanta Georgia"},{"name":"Department of Pathology and Laboratory Medicine Emory University  Atlanta Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela G.","family":"Brega","sequence":"additional","affiliation":[{"name":"Colorado School of Public Health Anschutz Medical Campus University of Colorado  Aurora Colorado"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2019,4,2]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.md.0000189089.45003.52"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM199406093302303"},{"key":"e_1_2_8_4_1","unstructured":"Centers for Disease Control and Prevention.Sickle cell disease data & statistics.2011.http:\/\/www.cdc.gov\/ncbddd\/sicklecell\/data.html. 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