{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,26]],"date-time":"2026-08-26T16:17:26Z","timestamp":1787761046079,"version":"build-2784847793"},"reference-count":65,"publisher":"Wiley","issue":"9","license":[{"start":{"date-parts":[[2026,7,29]],"date-time":"2026-07-29T00:00:00Z","timestamp":1785283200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,7,29]],"date-time":"2026-07-29T00:00:00Z","timestamp":1785283200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Blood &amp; Cancer"],"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Sickle cell disease (SCD) is a hereditary blood disorder in which abnormal haemoglobin leads to severe anaemia, painful crises and organ failure. Caregivers\u2019 health literacy (HL) \u2013 their ability to assess, understand and apply information, and interact with healthcare professionals \u2013 is crucial for managing children with SCD, yet insight into these skills is limited.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>This study examines HL levels of caregivers of children with SCD, including performance\u2010based HL, self\u2010reported HL, disease knowledge and perceived self\u2010efficacy, and their independent relationships.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A cross\u2010sectional study was conducted at the Erasmus MC Sophia Children's Hospital (April\u2013October 2019) among Dutch\u2010speaking caregivers of children (\u226412 years) with SCD. Data were collected on demographics, socio\u2010economic status, performance\u2010based HL (short assessment of health literacy in Dutch [SAHL\u2010D]), self\u2010reported HL (set of brief screening questions in Dutch [SBSQ\u2010D]), self\u2010efficacy (Perceived Self\u2010Efficacy in Caregiver\u2010Physician Interactions [PECPI]), and SCD\u2010specific knowledge (SCD\u2010K). Relationships between performance\u2010based HL and self\u2010reported HL, self\u2010efficacy and SCD knowledge were analysed using ANOVA and linear regression.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Of 59 caregivers (mean age 34 years; 85% mothers; 59% born outside the Netherlands), 22% had adequate performance\u2010based HL, while 97% had adequate self\u2010reported HL; agreement was poor (\n                      <jats:italic>r<\/jats:italic>\n                      = 0.42). Disease knowledge was limited overall and unrelated to HL. Perceived self\u2010efficacy was high overall and unrelated to HL.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Inadequate performance\u2010based HL is common, and disease knowledge is limited among caregivers of children with SCD. Healthcare professionals should recognise HL barriers and tailor health information to the needs of families managing SCD.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/1545-5017.70471","type":"journal-article","created":{"date-parts":[[2026,7,30]],"date-time":"2026-07-30T04:17:51Z","timestamp":1785385071000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Health Literacy, Self\u2010Efficacy and Knowledge of Sickle Cell Disease Among Caregivers"],"prefix":"10.1002","volume":"73","author":[{"ORCID":"https:\/\/orcid.org\/0009-0006-5107-6496","authenticated-orcid":false,"given":"Melanie","family":"Bruinooge","sequence":"first","affiliation":[{"name":"Department of Paediatric Haematology and Oncology Erasmus MC Sophia Children's Hospital University Medical Centre Rotterdam  Rotterdam the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1152-7361","authenticated-orcid":false,"given":"Maite E.","family":"Houwing","sequence":"additional","affiliation":[{"name":"Department of Paediatric Haematology and Oncology Erasmus MC Sophia Children's Hospital University Medical Centre Rotterdam  Rotterdam the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rowena L.","family":"Grohssteiner","sequence":"additional","affiliation":[{"name":"Department of Paediatric Haematology and Oncology Erasmus MC Sophia Children's Hospital University Medical Centre Rotterdam  Rotterdam the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ferdows","family":"Atiq","sequence":"additional","affiliation":[{"name":"Department of Haematology Erasmus MC University Medical Centre Rotterdam  Rotterdam the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sonja A. M. C.","family":"Teuben","sequence":"additional","affiliation":[{"name":"Department of Paediatric Haematology and Oncology Erasmus MC Sophia Children's Hospital University Medical Centre Rotterdam  Rotterdam the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mirjam P.","family":"Fransen","sequence":"additional","affiliation":[{"name":"Department of Public and Occupational Health Amsterdam University Medical Center  Amsterdam the Netherlands"},{"name":"Amsterdam Public Health Research Institute Quality of Care and Digital Health  Amsterdam the Netherlands"},{"name":"Department of Behaviour and Health Centre for Prevention Lifestyle and Health National Institute for Public Health and the Environment  Bilthoven the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1557-2995","authenticated-orcid":false,"given":"Marjon H.","family":"Cnossen","sequence":"additional","affiliation":[{"name":"Department of Paediatric Haematology and Oncology Erasmus MC Sophia Children's Hospital University Medical Centre Rotterdam  Rotterdam the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,7,29]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2214-109X(13)70150-5"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1136\/adc.2009.165290"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.281.6.552"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2458-12-80"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12887-015-0412-x"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2009-1162B"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1001\/archpediatrics.2008.539"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.acap.2014.01.004"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.7717\/peerj.3961"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.arbr.2019.02.004"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12889-016-3621-9"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1002\/jha2.762"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.3390\/hemato6040041"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/jspn.12353"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.3233\/ISU-170834"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11606-018-4624-2"},{"key":"e_1_2_11_18_1","first-page":"297","volume-title":"From Crescent to Full Moon: The Promise of Better Patient Outcomes for Sickle Cell Disease","author":"Houwing M.","year":"2025"},{"key":"e_1_2_11_19_1","unstructured":"S.Netherlands.Education level: CBS https:\/\/www.cbs.nl\/en\u2010gb\/news\/2018\/20\/well\u2010being\u2010not\u2010distributed\u2010equally\/education\u2010level."},{"key":"e_1_2_11_20_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1475-6773.2010.01119.x"},{"key":"e_1_2_11_21_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12874-019-0762-4"},{"issue":"8","key":"e_1_2_11_22_1","first-page":"588","article-title":"Brief Questions to Identify Patients With Inadequate Health Literacy","volume":"36","author":"Chew L. 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