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

项目摘要/摘要 近300万非裔美国人具有镰状细胞特征(SCT)，并面临生下镰状细胞儿童的风险 疾病(SCD)，一种严重的慢性血液疾病。超过80%的人不知道或不知道 了解他们的SCT状态，尽管SCT状态可能会对未来产生重大影响 生殖决定。对通过新生儿筛查确认患有SCT的婴儿的父母进行有效教育 危急时刻。这些父母是将有关SCT和SCD的知识传授给患有SCT的孩子的关键，因为他们 成熟，许多父母可以利用这一知识来指导他们未来的生育决定， 因为这些父母也被认为有很高的SCT患病率。然而，初步研究 提示SCT患儿父母的健康素养和基线SCT知识水平较低 这可能会限制他们通过目前的教育获得高水平和持续的知识的能力 如果是这样的话。这项建议的目标是制定一个有吸引力和有效的健康素养为基础的 为家长提供现场SCT测试并识别可能存在的障碍的计划(SCTware) 防止父母知道自己的SCT状态或获得SCT检测。中心假设是 SCT意识教育的实施将是可行的，并将导致高度和持续的父母知识 关于SCT和SCD。随着这些目标的成功完成，SCTware可以扩展到 患有SCD儿童的父母，他们的知识和健康素养也很低，使他们能够 为其子女做出明智的健康决策，并提高对有效SCD的利用和遵守 治疗方法(如羟基尿素)。此应用程序直接响应NHLBI限制竞赛R03 职业发展奖获得者计划(RFA-HL-18-025)。因此，拟议研究的完成情况是 期望促进开发独特和所需的资源(有效的SCD教育计划) 这将加速一位成功的K23获奖者的职业发展，使其成为一名临床医生 研究员。PI将利用这一资源成功竞争R01资金，以确定影响 有效的SCD教育计划和创新的羟基尿素依从性干预对 儿童SCD的结局。

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.