The Implementation of Cognitive Screening and Educational Support to Improve Outcomes of Adolescents and Young Adults with Sickle Cell Disease: From Clinic to the Community and Back

实施认知筛查和教育支持以改善镰状细胞病青少年和年轻人的预后：从诊所到社区再返回

• 批准号: 9458547
• 负责人: Allison A King
• 金额: $ 12.63万
• 依托单位: WASHINGTON UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-08-05 至 2022-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9458547
• 关键词: 15 year old; Address; Adolescent; Adolescent and Young Adult; Adult; African American; American; Area; Back; Behavior; Biology; Caregivers; Caring; Cerebral Infarction; Cessation of life; Child; Chronic; Chronic Disease; Clinic; Clinical; Cognitive; Collaborations; Communities; Data Coordinating Center; Databases; Development; Developmental Delay Disorders; Disease; Dropout; Drops; Education; Educational Background; Educational Intervention; Educational Models; Employment; Enrollment; Evaluation; Family; Focus Groups; Future; Goals; Guidelines; Health; Health Personnel; Health Resources; Health Services Administration; Healthcare; Hematology; Hemolytic Anemia; High School Student; Impairment; Individual; Infarction; Intelligence quotient; Intervention; Knowledge; Legal patent; Life; Life Expectancy; Measures; Medicaid; Medical; Methods; Modality; National Heart, Lung, and Blood Institute; Needs Assessment; Neuraxis; Neurocognitive; Nurses; Organ; Outcome; Parents; Patient-Focused Outcomes; Patients; Penicillins; Performance; Physicians; Policies; Population; Poverty; Prophylactic treatment; Recording of previous events; Red Cross; Registries; Research; Risk; Role; Schools; Self Management; Series; Sickle Cell Anemia; Site; Social Work; Students; Trainers Training; Transfusion; Translations; United States; Vascular Diseases; Vocational Guidance; Work; adolescent health; base; central nervous system injury; cognitive development; cognitive function; cognitive testing; college; community organizations; design; disease registry; evidence base; evidence based guidelines; experience; high risk; high school; high-risk adolescents; hydroxyurea; implementation science; improved; improved outcome; literacy; lower income families; male; member; metropolitan; multidisciplinary; neurocognitive test; novel; novel strategies; prophylactic; public health research; response; school district; screening; skills; statistics; success; teacher

Project Summary/Abstract Policies that address factors such as education could have a bigger influence on health than all medical advances combined. Within the U.S., adults without a high school diploma are likely to die nine years sooner than college graduates. Our team showed that a 15-year-old male with sickle cell anemia who comes from a low-income family has a 70% risk of failing a grade in school, putting him at risk of becoming a dropout. High school students who fail even one course are 33% more likely to drop out of high school. These statistics are a stark reality for the 100,000 Americans who have sickle cell disease (SCD), a chronic hemolytic anemia that causes organ damage and early death. Over 90% of this population is African American, 60-70% are living at or near poverty, and they suffer from a chronic disease associated with a high risk of central nervous system (CNS) injury. Medical advances such as penicillin prophylaxis, transcranial Doppler screening with prophylactic chronic transfusion and hydroxyurea reduce the risk of death. Despite these advances, median survival of individuals with SCD remains just 30-40 years, 30-45 years less than the average life expectancy for African Americans. Our multidisciplinary team addresses cognitive function and educational attainment to improve overall health of people with SCD. A child with sickle cell anemia, a silent cerebral infarct, and a parent without a high school education is predicted to have a full-scale IQ 13 points (SD = 15) lower than a child with no silent infarct and a college-educated parent. The 2014 Evidence Based Management guidelines from NHLBI stated, “Silent CNS infarcts can present with non-focal signs such as developmental delays or poor or declining school performance in children or changes in social role or work functioning in adults. Throughout their lives, people with SCD should be considered for formal neurocognitive evaluation when assessments reveal any of these concerns.” We hypothesize that better implementation of these recommended cognitive evaluations and translation to well-defined plans for educational support in schools will increase students’ success in educational attainment and promote better health. The long-term goal of this application is to improve the health and academic attainment of adolescents and adults with SCD by implementing evidence based guidelines for neurocognitive testing and intervention. In response to the Sickle Cell Disease Implementation Consortium RFA, we propose the following aims: 1) To complete a community-based needs assessment of the facilitators and barriers to essential healthcare and optimal educational attainment for adolescents and adults with SCD and their caregivers; 2) To design and implement a novel implementation project based on our previous work that focuses on cognitive evaluation and educational attainment of higher risk adolescents with SCD; 3) To participate in the development of a SCD Registry in collaboration with the Data Coordinating Center and NHLBI. Together, our aims will establish that our site is able to improve health and well-being of adolescents and adults with SCD in through the development of multi-modal, multi-sector interventions aimed at improving the rate at which patients with SCD receive evidence-based care.

项目概要/摘要 解决教育等因素的政策可能比所有医疗政策对健康产生更大的影响 在美国，没有高中文凭的成年人可能会提前九年死亡。 我们的团队发现，一名患有镰状细胞性贫血的 15 岁男性来自 低收入家庭有 70% 的学业成绩不及格的风险，使他面临辍学的风险。 即使一门课程不及格的学生高中辍学的可能性也会增加 33%。 对于 100,000 名患有镰状细胞病 (SCD) 的美国人来说，这是一个严峻的现实，这是一种慢性溶血性贫血， 造成器官损伤和过早死亡，其中 90% 以上是非裔美国人，其中 60-70% 生活在 或接近贫困，并且患有与中枢神经系统高风险相关的慢性疾病 （中枢神经系统）损伤。如青霉素预防、经颅多普勒筛查等预防性治疗。 尽管有这些进展，慢性输血和羟基脲仍可降低死亡风险。 患有 SCD 的人的寿命只有 30-40 岁，比非洲人的平均预期寿命短 30-45 岁 我们的多学科团队致力于改善美国人的认知功能和教育程度。 患有镰状细胞性贫血、无症状性脑梗塞的儿童和患有镰状细胞性贫血的父母的整体健康状况。 预计受过高中教育的孩子的全面智商比没有沉默的孩子低 13 分 (SD = 15) NHLBI 的 2014 年循证管理指南指出， “无症状的中枢神经系统梗塞可能会出现非局灶性症状，例如发育迟缓或学业成绩不佳或下降 人们一生中的社会角色或工作功能的变化。 当评估显示以下任何一项时，应考虑对患有 SCD 的患者进行正式的神经认知评估 我们采取了更好的实施这些建议的认知评估和 转化为明确的学校教育支持计划将提高学生的成功率 教育程度并促进更好的健康 该应用程序的长期目标是提高。 通过实施基于证据的方法，提高患有 SCD 的青少年和成人的健康和学业成就 针对镰状细胞病实施的神经认知测试和干预指南。 RFA联盟，我们提出以下目标： 1）完成基于社区的需求评估 青少年和成人基本医疗保健和最佳教育程度的促进因素和障碍 与 SCD 及其护理人员一起； 2) 设计并实施一个基于我们的新项目 之前的工作重点关注高风险青少年的认知评估和教育程度 3) 与数据协调部门合作参与 SCD 注册系统的开发 中心和 NHLBI 的共同目标是确保我们的网站能够改善人们的健康和福祉。 通过制定多模式、多部门干预措施，预防患有 SCD 的青少年和成人 提高 SCD 患者接受循证护理的比率。