Mobilizing Community Systems to Engage Families in Early ASD Detection & Services

动员社区系统让家庭参与早期 ASD 检测

• 批准号: 9319815
• 负责人: AMI KLIN
• 金额: $ 170.4万
• 依托单位: FLORIDA STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-08-25 至 2019-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9319815
• 关键词: 3 year old; 5 year old; Academy; Address; African American; Age; Age-Months; American; Annual Reports; Autistic Disorder; Automation; Birth; Caring; Characteristics; Child; Church; Communication; Communities; Community Healthcare; Community Services; Congresses; Country; Detection; Diagnosis; Disabled Persons; Early Diagnosis; Early Intervention; Education; Effectiveness; Electronic Health Record; Eligibility Determination; Evaluation; Evidence based intervention; Evidence based practice; Family; Family Characteristics; Federally Qualified Health Center; Food; Genetic Research; Gold; Healthcare; Individual; Infant; Interdisciplinary Study; Internet; Intervention; Intervention Studies; Investigation; Lead; Learning; Link; Low income; Mediating; Mediator of activation protein; Methods; Monitor; Neurosciences Research; Online Systems; Outcome; Outcome Measure; Outcome Study; Pediatrics; Phase; Primary Health Care; Privatization; Process; Protocols documentation; Provider; Public Health; Randomized; Randomized Clinical Trials; Recruitment Activity; Research; Research Personnel; Sampling; School-Age Population; Science; Services; Societies; Special Education; System; Technology; Testing; Time; Underserved Population; Universities; Woman; arm; autism spectrum disorder; base; community intervention; community setting; compare effectiveness; cost; course development; design; ethnic disparity; evidence base; follow-up; health care delivery; health disparity; improved; income disparities; innovation; intervention effect; motivational enhancement therapy; nutrition; population based; pragmatic trial; predicting response; provider intervention; public health relevance; racial disparity; response; rural families; rural setting; satisfaction; screening; service intervention; social communication; standard care; standard measure; tool; uptake; urban setting; web-based tool

DESCRIPTION (provided by applicant): The American Academy of Pediatrics recommends screening all children for autism spectrum disorder (ASD) at 18 and 24 months because research indicates that earlier intervention maximizes children's outcomes5. The earliest signs of ASD are delays in social communication milestones that appear in the first 2 years and yet most children are not diagnosed until 4-5 years of age. Underserved families are identified even later and significantly underrepresented in intervention research. It is vitally important to mobilize community service systems to impact family engagement throughout the process of screening, evaluation, and early intervention (EI) and to support linkages to public community-based EI in order to address health disparities. In response to RFA-MH-14-100, this collaborative investigation of 4 universities aims to document the effectiveness of an online automated universal screen for communication delay and autism initially at 18 months of age and decision rule for referral to an ASD evaluation, and to study an evidence-based intervention to increase family engagement and expedite receipt of screening, diagnosis, eligibility for EI, and EI services. The study will focus on the youngest age when ASD can be detected reliably, which is 18 months, and compare the effectiveness of screening and referral by 3 different community service systems: 1) primary care including private and public health care agencies and federally qualified health centers; 2) Women, Infants, and Children (WIC) Food and Nutrition Service; and 3) the National Black Church Initiative (NBCI). Using a web-based platform we will expand their capacity for universal ASD screening and referral for diagnosis and determining eligibility by EI providers through the public Individuals with Disabilities Education Act (IDEA) Part C system for children birth to 3 years of age. Innovative web-based technology will be integrated at multiple levels- as the basis for an interactive professional development course to enable these community service systems to efficiently learn about autism and implement a universal broadband and autism-specific screening with seamless automation that links to electronic health records and provides families with web-based tools about autism. This multidisciplinary research team will conduct a multisite pragmatic randomized clinical trial to tes the effectiveness of an evidence-based Family Engagement Intervention. We will also conduct an exploratory study to test strategies to improve uptake of evidence-based intervention by community-based EI providers throughout the Part C system. This protocol has the potential to lower the age of screening for ASD to 18 months, which will have important implications for earlier access to intervention and improving ASD service systems and be ready for immediate and rapid implementation in community settings across the US. Findings will advance science by providing researchers with a method for recruiting a population-based sample, allowing for research at younger ages, which could accelerate genetic, neuroscience, and intervention research, and lead to transformative changes to community healthcare delivery.

描述(由申请人提供)：美国儿科学会建议在18个月和24个月时对所有儿童进行自闭症谱系障碍(ASD)筛查，因为研究表明，早期干预可以最大限度地提高儿童的预后。自闭症的最早迹象是在最初两年出现的社交里程碑延迟，但大多数儿童直到4-5岁才被诊断出来。服务不足的家庭被发现的时间甚至更晚，在干预研究中的代表性明显不足。动员社区服务系统在整个筛查、评估和早期干预(EI)过程中影响家庭参与，并支持与公共社区EI的联系，以解决健康差距，这一点至关重要。作为对RFA-MH-14-100的回应，这项针对4所大学的合作调查旨在记录在线自动普遍筛查18个月大的沟通障碍和自闭症的有效性以及转介到ASD评估的决策规则，并研究基于证据的干预措施，以增加家庭参与度和加快接受筛查、诊断、EI和EI服务的资格。这项研究将关注能够可靠检测到ASD的最年轻年龄，即18个月，并比较3种不同社区服务系统的筛查和转诊效果：1)初级保健，包括私人和公共卫生保健机构和联邦合格的卫生中心；2)妇女、婴儿和儿童(WIC)食品和营养服务；以及3)国家黑人教会倡议(NBCI)。利用基于网络的平台，我们将扩大他们的能力，通过公共残疾人教育法(IDEA)C部分针对3岁以下儿童出生的儿童进行普遍的ASD筛查和转诊，以供EI提供者诊断和确定资格。创新的基于网络的技术将在多个层面上整合，作为互动专业发展课程的基础，使这些社区服务系统能够有效地了解自闭症，并实施具有无缝自动化的普遍宽带和针对自闭症的筛查，连接到电子健康记录，并为家庭提供关于自闭症的基于网络的工具。这个多学科研究团队将进行一项多点、务实、随机的临床试验，以检验循证家庭参与干预的有效性。我们还将进行一项探索性研究，以测试在整个C部分系统中改善社区EI提供者采用循证干预的策略。该方案有可能将ASD的筛查年龄降低到18个月，这将对更早地获得干预和改进ASD服务系统产生重要影响，并为在全美各地的社区环境中立即和快速实施做好准备。这些发现将为研究人员提供一种招募基于人群的样本的方法，从而推动科学的发展，从而允许在更年轻的年龄进行研究，这可能会加速遗传、神经科学和干预研究，并导致社区医疗保健服务的变革性变化。