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.

项目摘要/摘要 解决教育等因素的政策可能对健康产生更大的影响 进步加在一起。在美国，没有高中文凭的成年人可能会早就死了九年 比大学毕业生。我们的团队表明，一名15岁的男性患有镰状细胞贫血，来自 低收入家庭有70％的学校失败的学校，使他有辍学的风险。高的 甚至一门课程失败的学校学生辍学的可能性高33％。这些统计数据是 对于100,000名患有镰状细胞病（SCD）的美国人来说，这是一种慢性溶血性贫血， 造成器官损伤和早期死亡。超过90％的人口是非裔美国人，60-70％的人居住在 或接近贫困，他们患有与中枢神经系统高风险有关的慢性疾病 （CNS）受伤。医学进步，例如预防青霉素，用预防性筛查thrancranial多普勒筛查 慢性输血和羟基脲降低了死亡的风险。尽管有这些进步，但中位生存 患有SCD的人只有30 - 40年，比非洲的平均预期寿命少30 - 45年 美国人。我们的多学科团队解决了认知功能和教育程度以改善 SCD患者的整体健康状况。患有镰状细胞贫血的孩子，沉默的脑梗塞和父母没有 预计高中教育的全尺度智商比没有沉默的孩子低13分（SD = 15） 梗塞和受过大学教育的父母。 NHLBI的2014年基于证据的管理指南说， “无声CNS Infacts可能会出现非焦点标志，例如发展延误或贫困或学校下降 儿童表现或成人社会角色或工作功能的变化。一生，人们 当评估揭示其中任何一个时，应考虑使用SCD进行正式的神经认知评估 “我们假设更好地实施这些建议的认知评估和 转化为学校中定义明确的教育支持计划，将增加学生的成功 教育成就并促进改善健康。该应用程序的长期目标是改善 通过实施基于证据的青少年和成年人的健康和学术成就 神经认知测试和干预指南。响应镰状细胞疾病的实施 财团RFA，我们提出以下目的：1）完成基于社区的需求评估 为青少年和成人提供基本医疗保健和最佳教育成果的促进者和障碍 与SCD及其护理人员； 2）根据我们的设计和实施一个新颖的实施项目 以前的工作着重于认知评估和高风险青少年的教育成就 SCD; 3）与数据协调合作参与SCD注册表的开发 中心和NHLBI。我们的目标共同确定我们的网站能够改善健康和福祉 通过开发针对多模式，多部门干预措施的青少年和成年人 提高SCD患者获得循证护理的速度。