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

基本信息

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
项目类别：
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

项目摘要

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岁和24个月筛查所有儿童自闭症谱系障碍（ASD），因为研究表明，较早的干预措施可最大程度地提高儿童的结果5。 ASD的最早迹象是在最初两年中出现的社会交流里程碑的延迟，但大多数孩子直到4-5岁才被诊断出。即使在后来发现了服务欠佳的家庭，并且在干预研究中的代表性不足。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基于公共社区的EI的联系以解决健康差异至关重要。为了回应RFA-MH-14-100，这项对4所大学的合作调查旨在记录在线自动化通用屏幕的有效性，该屏幕最初是在18个月大时在18个月以上的沟通延迟和自闭症的有效性，以及转诊至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，以增加筛选，诊断，诊断，诊断，诊断，资格，EI和EI和EI和EI和EI和EI和EI和EI，并获得。该研究将重点关注最年轻的年龄，即可以可靠地检测到ASD的年龄，即18个月，并比较了3种不同的社区服务系统筛查和推荐的有效性：1）包括私人和公共卫生保健机构以及联邦合格的卫生中心在内的初级保健； 2）妇女，婴儿和儿童（WIC）食品和营养服务； 3）国家黑人教会倡议（NBCI）。使用基于Web的平台，我们将扩大其通用ASD筛查和推荐的能力，以通过《残疾人教育法案》（IDEA）Cart C Part C Part Cart System for System for System for System（IDEA）儿童出生到3岁。创新的基于Web的技术将集成到多个级别 - 作为交互式专业开发课程的基础，以使这些社区服务系统有效地了解自闭症并使用无缝自动化实施通用的宽带和自闭症特定的筛选，该筛选链接到电子健康记录，并为家庭提供基于Web的自闭症工具。这个多学科研究团队将进行多个务实的随机临床试验，以探讨基于证据的家庭参与干预措施的有效性。我们还将进行一项探索性研究，以测试策略，以改善整个C系统中基于社区的EI提供者对循证干预的吸收。该协议有可能降低ASD筛查的年龄至18个月，这将对早期访问干预和改善ASD服务系统的重要意义，并准备在美国的社区环境中立即和快速实施。研究结果将通过为研究人员提供招募基于人群的样本的方法来推进科学，从而允许在年轻人中进行研究，从而可以加速遗传，神经科学和干预研究，并导致社区医疗保健提供的转变变化。