SCTaware: A Comprehensive Program to Increase Sickle Cell Trait Knowledge and Awareness Among Parents of Infants Identified by Newborn Screening

SCTaware：一项综合计划，旨在提高新生儿筛查发现的婴儿父母对镰状细胞性状的了解和认识

• 批准号: 9915969
• 负责人: Susan Creary
• 金额: $ 7.6万
• 依托单位: RESEARCH INST NATIONWIDE CHILDREN'S HOSP
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-04-15 至 2022-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9915969
• 关键词: Adherence; Affect; African American; Age; American; Appointments and Schedules; Awareness; Child; Chronic; Clinical; Conflict (Psychology); Decision Making; Development; Disease; Education; Face; Family; Funding; Future; Goals; Health; Health education; Hematological Disease; High Prevalence; Home environment; Individual; Infant; Intervention; Knowledge; Lead; Learning; Measures; National Heart, Lung, and Blood Institute; Needles; Neonatal Screening; Ohio; Outcome; Pain; Parents; Patient Self-Report; Persons; Phobias; Prevention; Public Health; Reporting; Research; Research Personnel; Resources; Risk; Sickle Cell Anemia; Sickle Cell Trait; Site; Stroke; Testing; Time; Training; Uncertainty; United States; base; blood treatment; career; career development; child bearing; cost; effective therapy; experience; health literacy; hydroxyurea; improved outcome; innovation; mortality; prevent; programs; recruit; reproductive; success; tool

PROJECT SUMMARY/ABSTRACT Nearly 3 million African Americans have sickle cell trait (SCT) and are at risk of having a child with sickle cell disease (SCD), a severe and chronic blood disorder. More than 80% of these individuals do not know or understand their SCT status, despite the significant implications that SCT status can have on future reproductive decisions. Effectively educating parents of infants with SCT identified by newborn screening is critical. These parents are key to passing on knowledge about SCT and SCD to their children with SCT as they mature, and many of the parents can use this knowledge to inform their own future reproductive decisions, since these parents are also presumed to have a high prevalence of SCT. However, preliminary studies suggest that parents of infants with SCT frequently have low health literacy and baseline low SCT knowledge that may limit their capacity to achieve high and sustained knowledge with the education that is currently provided. The objectives of this proposal are to develop an engaging and effective health literacy-based program (SCTaware) that makes on-site SCT testing available for parents and to identify barriers that may prevent parents from knowing their own SCT status or from obtaining SCT testing. The central hypothesis is that SCTaware education will be feasible to implement and will result in high and sustained parental knowledge about SCT and SCD. With the successful completion of these objectives, SCTaware could be extended to parents of children with SCD, who also have low knowledge and health literacy, to enable them to make informed health decisions for their children and to increase utilization of and adherence to effective SCD therapies (e.g., hydroxyurea). This application is directly responsive to the NHLBI Limited Competition R03 program for career development awardees (RFA-HL-18-025). Thus, completion of the proposed research is expected to facilitate the development of a unique and needed resource (an effective SCD education program) that will accelerate the career progression of a successful K23 awardee toward independence as a clinical researcher. The PI will leverage this resource to successfully compete for R01 funding to determine the impact that an effective SCD education program and an innovative hydroxyurea adherence intervention have on the outcomes of children with SCD.

项目概要/摘要 近 300 万非裔美国人患有镰状细胞特征 (SCT)，并且有生下患有镰状细胞的孩子的风险 疾病（SCD），一种严重的慢性血液疾病。其中超过 80% 的人不知道或 了解他们的 SCT 状态，尽管 SCT 状态可能对未来产生重大影响 生殖决定。对新生儿筛查发现的 SCT 婴儿的父母进行有效的教育是 批判的。这些父母是将 SCT 和 SCD 知识传授给患有 SCT 的孩子的关键，因为他们 成熟，许多父母可以利用这些知识来指导自己未来的生育决定， 因为这些父母也被认为有很高的 SCT 患病率。然而，初步研究 表明接受 SCT 的婴儿的父母通常健康素养较低且基线 SCT 知识较低 这可能会限制他们通过目前的教育获得高水平和持续知识的能力 假如。该提案的目标是开发一种有吸引力且有效的基于健康素养的方法 计划 (SCTaware)，为家长提供现场 SCT 测试，并识别可能存在的障碍 阻止父母了解自己的 SCT 状态或获得 SCT 检测。中心假设是 SCTaware 教育将是可行的，并将带来高水平和持续的家长知识 关于 SCT 和 SCD。随着这些目标的成功完成，SCTaware 可以扩展到 患有SCD的儿童的家长，他们的知识和健康素养也较低，使他们能够 为孩子做出明智的健康决策，并提高对有效 SCD 的利用和坚持 疗法（例如羟基脲）。此应用程序直接响应 NHLBI 有限竞赛 R03 职业发展获奖者计划 (RFA-HL-18-025)。因此，完成拟议的研究是 预计将促进独特且所需资源的开发（有效的 SCD 教育计划） 这将加速成功的 K23 获奖者的职业发展，使其成为独立的临床医生 研究员。 PI 将利用此资源成功竞争 R01 资金以确定影响 有效的 SCD 教育计划和创新的羟基脲依从性干预措施对 SCD 儿童的结局。

项目成果

A Health Literate Approach to Address Health Disparities: a Virtual Program for Parents of Children with Sickle Cell Trait.

• DOI: 10.1080/17538068.2022.2026056
• 发表时间: 2022
• 期刊: Journal of communication in healthcare
• 作者: Abrams, Mary Ann;Zajo, Kristin N.;Beeman, Chase M.;O'Brien, Sarah H.;Chan, Peter K.;Shen, Yvette;McCorkle, Ben;Johnson, Latrice;Chisolm, Deena;Barnard-Kirk, Toyetta;Mahan, John D.;Christian-Rancy, Myra;Creary, Susan E.
• 通讯作者: Creary, Susan E.