Early identification and service linkage for urban children with autism

城市自闭症儿童早期识别与服务联动

基本信息

批准号：
9305159
负责人：
EMILY FEINBERG
金额：
$ 112.69万
依托单位：
BOSTON UNIVERSITY MEDICAL CAMPUS
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/9305159
关键词：
Adoption Affordable Care Act Age Autistic Disorder Behavioral Behavioral Research Boston Caregiver Burden Caring Case Management Child Collection Communities Community Health Centers Data Development Diagnosis Diagnostic Diagnostic Services Early Intervention Early identification Effectiveness Ethnic Origin Evaluation Family Funding Goals Health Health Services Healthcare Healthcare Systems Home environment Hospitals Hybrids Individual Institution Insurance Intervention Language Link Logistics Low income Measures Mediator of activation protein Medical Medical Records Medical center Modeling Motivation National Institute of Mental Health Navigation System Outcome Patients Pediatric Hospitals Performance Philadelphia Pilot Projects Primary Health Care Problem Solving Process Professional Organizations Protocols documentation Race Randomized Research Research Design Role Self Management Series Services Site Stress Structure Suggestion Supervision System Testing Time Transportation United States Agency for Healthcare Research and Quality United States Health Resources and Services Administration Universities Urban Population Visit Vulnerable Populations arm autism spectrum disorder base care systems collaborative care comparative effectiveness design disparity reduction effectiveness trial evidence base experience family support improved improved outcome individual patient innovation intervention effect medical specialties minority children novel patient oriented peer primary care setting programs public health relevance satisfaction scale up screening service intervention service utilization skills suspected autism theories urban children

项目摘要

DESCRIPTION (provided by applicant): Emerging evidence demonstrates that Autism Spectrum Disorder (ASD) can be reliably diagnosed by age two, and that early identification and intervention can improve outcomes. Low-income and minority children with ASD, however, are diagnosed later and experience greater delays in service provision than their white and more financially advantaged peers. Feasible, culturally appropriate interventions with broad scale-up potential are necessary to reduce this disparity. This R01 application builds upon pilot studies (Augustyn, HRSA R40 MC19928; Feinberg, AHRQ R03 HS22155) of an adapted version of Patient Navigation as means to reduce disparities in ASD diagnosis and service provision. Patient Navigation is a lay-delivered case management approach that focuses on overcoming logistical hurdles to care during a defined episode. Pilot data from our research group demonstrate the feasibility of an adapted approach of Patient Navigation, referred to as Family Navigation (FN), among families of children with suspected ASD, and provide suggestive evidence that the approach both reduces time to ASD diagnosis and increases engagement with services. We propose a multisite, randomized comparative effectiveness trial (n=19,500) of a systemic, lay-delivered FN protocol, which begins prior to a child's 18 or 24 month health supervision visit and ends 100 days after an ASD diagnosis is made. The trial takes place in urban, integrated care networks that provide healthcare to low-income children. The basic structure of both intervention arms is a collaborative care system. The conventional care management arm (CCM) is consistent with the type of care provided within a traditional - but high quality - medical home. The FN arm provides more intensive, individually tailored, care coordination and theory-based family support. Children will be followed for 12 months. Data regarding screening outcomes, diagnosis and service utilization will be abstracted from children's medical records. Measures of parental stress, self-management skills, caregiver burden, and satisfaction with services will be administered over 4 collection time points, linked to key intervention outcomes. We will assess the superiority of FN as compared to CCM as a means to: achieve an 80% screening rate for indicators of ASD across all sites; implement a decision rule for referral to ASD evaluation; shorten the time to diagnosis among children suspected to have ASD; shorten the time to deployment of ASD services among those diagnosed; and improve engagement with ASD services. Our lay-delivered FN system has been designed to have broad scale-up potential. Thus, to provide critical information on how such a system could be best implemented and disseminated across urban primary care settings nationwide, we will conduct a concurrent implementation analysis - systematically examining performance gaps in FN's delivery according to the Theoretical Domains Framework. If successful, our study will provide real world primary care practices with a replicable model of care that increases early identification and access to timely diagnostic and early intervention services for a vulnerable population of urban families.

描述（由申请人提供）：新兴证据表明，自闭症谱系障碍（ASD）可以通过二年龄法可靠地诊断，并且早期的鉴定和干预可以改善预后。但是，低收入和少数ASD的儿童被诊断出来，与白人和财务上优势的同龄人相比，服务提供的延误更大。可行的，适当的具有广泛扩展潜力的文化干预措施是减少这种差异的必要条件。该R01应用程序建立在试验性研究的试点研究（Augustyn，HRSA R40 MC19928; Feinberg，AHRQ R03 HS22155）的基础上，该版本的患者导航是减少ASD诊断和服务提供的手段。患者导航是一种铺设案例管理方法，它着重于在定义的情节中克服后勤障碍。来自我们研究小组的飞行员数据证明了适合患者导航方法的可行性，该方法称为家庭导航（FN），在涉嫌ASD的儿童家庭中，并提供了暗示性的证据，表明该方法既可以减少ASD诊断的时间并增加与服务的参与度。我们提出了一项全身性的，分配的FN方案的多站点，随机的比较有效性试验（n = 19,500），该试验始于儿童18或24个月的健康监督访问，并在进行ASD诊断后100天结束。该试验发生在为低收入儿童提供医疗保健的城市综合护理网络中。两种干预臂的基本结构都是协作护理系统。传统的护理管理部门（CCM）与传统但高质量的医疗之家提供的护理类型一致。 FN臂提供了更密集，定制的，护理协调和基于理论的家庭支持。儿童将被追踪12个月。有关筛查结果，诊断和服务利用率的数据将从儿童的病历中抽象。父母压力，自我管理技能，照料者负担和对服务的满意度的度量将在4个收集时间点上进行，与关键干预结果有关。与CCM相比，我们将评估FN的优势，以此作为以下手段：在所有站点的ASD指标上实现80％的筛选率；实施一个决策规则，以转介到ASD评估；缩短了怀疑患有ASD的儿童诊断时间；缩短了在被诊断的人之间部署ASD服务的时间；并改善与ASD服务的参与。我们使用的FN系统旨在具有广泛的扩展潜力。因此，为了提供有关在全国范围内如何最好地在城市初级保健环境中最好地实施和传播这种系统的关键信息，我们将根据理论域框架进行同时进行的实施分析 - 系统地检查FN交付中的性能差距。如果成功的话，我们的研究将为现实世界中的初级保健实践提供可复制的护理模型，该模型增加了较脆弱的城市家庭的及时诊断和及时诊断和早期干预服务的机会。