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）：新出现的证据表明，自闭症谱系障碍 (ASD) 可以在两岁时得到可靠诊断，并且早期识别和干预可以改善结果。然而，与白人和经济条件较好的同龄人相比，患有自闭症谱系障碍的低收入和少数族裔儿童的诊断较晚，而且服务提供的延迟也更大。为了缩小这种差距，需要采取可行的、文化上适当的、具有广泛推广潜力的干预措施。该 R01 应用程序以患者导航的改编版本的试点研究（Augustyn，HRSA R40 MC19928；Feinberg，AHRQ R03 HS22155）为基础，作为减少 ASD 诊断和服务提供方面差异的手段。患者导航是一种非专业病例管理方法，重点是克服特定事件期间护理的后勤障碍。我们研究小组的试点数据证明了在疑似 ASD 儿童的家庭中采用患者导航（称为家庭导航 (FN)）的适应性方法的可行性，并提供了提示性证据，表明该方法既缩短了 ASD 诊断时间，又提高了参与度与服务。我们提出了一项系统性、现场实施的 FN 方案的多中心、随机比较有效性试验（n=19,500），该试验在儿童 18 或 24 个月的健康监督访视之前开始，在 ASD 诊断后 100 天结束。该试验在为低收入儿童提供医疗保健的城市综合护理网络中进行。两个干预部门的基本结构是协作护理系统。传统护理管理部门 (CCM) 与传统但高质量的医疗之家提供的护理类型一致。 FN 部门提供更密集、个性化的护理协调和基于理论的家庭支持。儿童将被跟踪 12 个月。有关筛查结果、诊断和服务利用的数据将从儿童的医疗记录中提取。将在 4 个收集时间点对家长压力、自我管理技能、照顾者负担和服务满意度进行衡量，并与关键干预结果相关。我们将评估 FN 与 CCM 相比的优越性，作为一种手段：在所有站点实现 80% 的 ASD 指标筛查率；实施转介 ASD 评估的决策规则；缩短疑似自闭症谱系障碍儿童的诊断时间；缩短在确诊患者中部署 ASD 服务的时间；提高 ASD 服务的参与度。我们的外线交付 FN 系统经过精心设计，具有广泛的扩展潜力。因此，为了提供关于如何在全国城市初级保健机构中最好地实施和传播这样一个系统的关键信息，我们将进行同步实施分析——根据理论领域框架系统地检查 FN 交付中的绩效差距。如果成功，我们的研究将为现实世界的初级保健实践提供可复制的护理模式，从而增加城市家庭弱势群体的早期识别以及及时诊断和早期干预服务的机会。