Reducing Disparities in Timely Autism Diagnosis through Family Navigation

通过家庭导航减少自闭症及时诊断的差异

• 批准号: 8490793
• 负责人: EMILY FEINBERG
• 金额: $ 10万
• 依托单位: BOSTON MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-09-01 至 2015-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8490793
• 关键词: Reducing; Disparities; Timely; Autism; Diagnosis

Project Summary Autism spectrum disorder (ASD) is a chronic condition that occurs in almost 1 in every 88 children and conveys lifelong disability in the areas of communication, social interaction, and behavior. Because a determination of ASD made by a qualified health care provider is required to receive autism-specific services, age at diagnosis is a critical marker of timely access to recommended services. Despite progress identifying children at younger ages when interventions to improve outcomes are most successful, disparities in the age of diagnosis persist. The goal of this study is to assess the feasibility and acceptability of a novel application of patient navigation to support families of low-income and minority children, age 15 months to 3 years, who have positive behavioral screens indicating a need for an ASD diagnostic assessment. Patient navigation is rooted in adult cancer care. It has been implemented to reduce institutional and individual level barriers to cancer diagnoses and has demonstrated efficacy in both improving adherence to follow-up visits after a screening abnormality and decreasing the time from an abnormal screen to diagnostic resolution. We have reframed the model from patient to family navigation and will focus on a defined episode of care, beginning with an abnormal autism screen and ending with the completion of the diagnostic assessment. We will conduct a pilot randomized control trial (N=40) to accomplish the following specific aims: 1) field test logistical aspects of randomized study of family navigation, including family navigator training, participant recruitment and flow, delivery and tracking of navigator services, and collection of baseline and follow-up data; 2) obtain empiric estimates of key study parameters to inform future study design, including within-group standard deviation of outcome measures; correlation of outcomes measured at baseline and follow-up, and effect size estimates of the intervention on timely diagnosis and self-reported family outcomes; 3) assess qualitatively, from the perspective of parents and pediatric providers, the feasibility and acceptability of family navigation offered during the episode of care beginning with a suspicious autism screen and ending with diagnostic resolution; and 4) assess the resource utilization and develop a decision analytic model that will allow us to estimate the economic impact of family navigation compared to routine care in low-income and minority children identified as at-risk for delays in ASD diagnostic assessment. The current study proposes to test the feasibility of an intervention to decrease disparities in timely ASD diagnosis that occur at a critical point in the continuum of the delivery of ASD services for young children. The need for support to navigate the complex network of autism services is widely recognized. The proposed project will lay the ground work for a definitive trial of our intervention model. If efficacious, the intervention has the potential for replication and expansion to other childhood behavioral conditions.

项目摘要 自闭症谱系障碍（ASD）是一种慢性疾病，几乎每88名儿童中就有1名发生， 在沟通、社会交往和行为方面的终身残疾。因为， 由合格的医疗保健提供者提供的ASD需要接受自闭症特异性服务，诊断时的年龄 是及时获得推荐服务的关键标志。尽管在确定儿童年龄方面取得了进展， 在改善结果的干预措施最成功的年龄，诊断年龄的差异仍然存在。 本研究的目的是评估患者导航新应用的可行性和可接受性， 支持低收入家庭和少数民族儿童，年龄15个月至3岁，谁有积极的行为 显示需要ASD诊断评估的屏幕。患者导航植根于成人癌症护理。 它已被实施，以减少机构和个人层面的障碍，癌症诊断， 在改善筛选异常后随访访视的依从性和 减少了从异常屏幕到诊断分辨率的时间。我们重新构建了模型， 患者到家庭导航，并将专注于一个定义的护理事件，从异常自闭症开始 筛选并以完成诊断评估结束。我们将进行一个随机的试点 对照试验（N=40），以实现以下具体目标：1）随机研究的田间试验后勤方面 包括家庭导航员培训、参与者招募和流动、交付和跟踪 导航服务，收集基线和随访数据; 2）获得关键研究的经验估计 为未来研究设计提供信息的参数，包括结局指标的组内标准差; 基线和随访时测量的结果的相关性，以及干预措施对 及时诊断和自我报告的家庭结果; 3）从父母的角度进行定性评估， 儿科提供者，在护理过程中提供家庭导航的可行性和可接受性 从可疑的自闭症筛查开始，以诊断决议结束;以及4）评估资源 利用和开发一个决策分析模型，使我们能够估计家庭的经济影响， 导航与低收入和少数民族儿童的常规护理相比，被确定为ASD延迟的风险 诊断评估。目前的研究建议测试干预的可行性，以减少 在ASD服务连续交付的关键点发生的及时ASD诊断的差异 为年幼的孩子。需要支持来导航复杂的自闭症服务网络， 认可.拟议的项目将为我们的干预模式的最终试验奠定基础。如果 该干预措施有效，有可能复制并扩展到其他儿童行为领域 条件