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: 8756338
• 负责人: EMILY FEINBERG
• 金额: $ 98.21万
• 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/8756338
• 关键词: Adoption; Age; Autistic Disorder; Behavioral; Behavioral Research; Boston; Caregiver Burden; Caring; Case Management; Child; Collection; Community Health Centers; Community Health Services; Data; Development; Diagnosis; Diagnostic; Diagnostic Services; Early Intervention; Early identification; Effectiveness; Ethnic Origin; Evaluation; Family; Funding; Goals; Health; Healthcare; Healthcare Systems; Home environment; Hospitals; Hybrids; Individual; Institution; Insurance; Intervention; Language; Link; Low income; Measures; Mediator of activation protein; Medical; Medical Records; Medical center; Minority; Modeling; Navigation System; Outcome; Patients; Pediatric Hospitals; Performance; Philadelphia; Pilot Projects; Primary Health Care; Problem Solving; Process; Protocols documentation; Race; Randomized; Research; Research Design; Role; Self Management; Series; Services; Site; Societies; Stress; Structure; Supervision; System; Testing; Time; Transportation; United States Agency for Healthcare Research and Quality; United States Health Resources and Services Administration; Universities; Visit; Vulnerable Populations; abstracting; arm; autism spectrum disorder; base; care systems; collaborative care; community based service; comparative effectiveness; design; effectiveness trial; evidence base; experience; improved; innovation; intervention effect; medical specialties; novel; patient oriented; peer; primary care setting; programs; public health relevance; satisfaction; scale up; screening; service intervention; service utilization; skills; suspected autism; theories

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，并且早期识别和干预可以改善结果。然而，低收入和少数民族的自闭症儿童被诊断出来的时间较晚，在提供服务方面比他们的白色和经济上更困难的同龄人经历了更大的延迟。有必要采取可行的、文化上适当的、具有广泛推广潜力的干预措施，以缩小这一差距。该R 01应用程序建立在患者导航调整版本的试点研究（Augustyn，HRSA R40 MC 19928; Feinberg，AHRQ R 03 HS 22155）基础上，作为减少ASD诊断和服务提供差异的方法。患者导航是一种非专业提供的病例管理方法，其重点是在定义的事件期间克服护理的后勤障碍。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，又增加了与服务的互动。我们提出了一项多中心，随机比较有效性试验（n= 19，500）的系统，奠定交付FN协议，开始之前，儿童的18或24个月的健康监督访问和结束后100天ASD诊断。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。两个干预机构的基本结构是一个协作护理系统。传统护理管理臂（CCM）与传统但高质量的医疗之家提供的护理类型一致。新生力量部门提供更密集、个性化的护理协调和基于理论的家庭支持。孩子们将被跟踪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措施将在4个收集时间点进行管理，与关键干预结果相关联。我们将评估FN与CCM相比的优越性，作为一种手段：在所有地点实现80%的自闭症谱系障碍指标筛查率;实施转诊至自闭症谱系障碍评估的决策规则;缩短疑似自闭症谱系障碍儿童的诊断时间;缩短在被诊断者中部署自闭症谱系障碍服务的时间;并改善对自闭症谱系障碍服务的参与。我们的层交付FN系统设计具有广泛的放大潜力。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提供的绩效差距。如果成功，我们的研究将提供真实的世界初级保健实践与可复制的护理模式，增加早期识别和获得及时的诊断和早期干预服务的城市家庭的弱势群体。