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

• 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
• 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

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的诊断，早期识别和干预可以改善结果。然而，患有自闭症的低收入和少数族裔儿童被诊断得更晚，比他们的白人和更有经济优势的同龄人在服务提供方面经历了更大的延误。为了缩小这种差距，有必要采取可行的、文化上适当的、具有广泛扩大潜力的干预措施。此R01应用程序建立在对患者导航的改编版本的试点研究(Augustin，HRSA R40 MC19928；Feinberg，AHRQ R03 HS22155)的基础上，作为减少ASD诊断和服务提供方面的差异的手段。患者导航是一种外行交付的病例管理方法，其重点是克服后勤障碍，以便在定义的发作期间进行护理。来自我们研究小组的试点数据表明，在疑似ASD儿童的家庭中，采用适应的患者导航方法(称为家庭导航(FN))是可行的，并提供了提示性证据，表明该方法既减少了ASD诊断的时间，又增加了对服务的参与。我们建议进行一项多点随机比较有效性试验(n=19,500)，该试验是一项系统性的、层层递送的FN方案，在儿童18个月或24个月的健康监督访问之前开始，在ASD诊断做出100天后结束。这项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。两个干预机构的基本结构都是协作式护理系统。传统护理管理部门(CCM)与传统但高质量的医疗机构提供的护理类型是一致的。FN ARM提供更密集的、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。父母压力、自我管理技能、照顾者负担和服务满意度的测量将在4个收集时间点进行，并与关键干预结果相联系。我们将评估与CCM相比，FN的优势在于：在所有站点实现ASD指标的80%筛查率；实施转介到ASD评估的决策规则；缩短疑似ASD儿童的诊断时间；缩短确诊患者部署ASD服务的时间；以及改善ASD服务的参与度。我们的Lay-Deliver FN系统设计为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环境中最好地实施和传播这种系统的关键信息，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提供方面的绩效差距。如果成功，我们的研究将为现实世界的初级保健实践提供一种可复制的护理模式，增加城市家庭弱势群体的早期识别和获得及时诊断和早期干预服务的机会。