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; 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）是一种慢性病 在沟通，社会互动和行为领域的终身残疾。因为确定 由合格的医疗保健提供者制造的ASD必须接受特定于自闭症的服务，诊断年龄 是及时访问推荐服务的关键标志。尽管进步识别了年轻的孩子 年龄在改善预后的干预措施是最成功的，诊断时代的差异持续存在。 这项研究的目的是评估患者导航在 支持低收入和少数民族儿童的家庭，年龄15个月至3岁，他们的行为积极 屏幕表明需要进行ASD诊断评估。患者导航植根于成人癌症护理。 它已被实施，以减少癌症诊断的机构和个人水平障碍 在筛查异常和 减少从异常屏幕到诊断分辨率的时间。我们已经从模型中重塑了 病人到家庭导航，并将专注于定义的护理情节，从异常自闭症开始 屏幕和结束诊断评估结束。我们将进行一个随机的飞行员 对照试验（n = 40）完成以下特定目的：1）随机研究的现场测试后勤方面 家庭导航，包括家庭导航员培训，参与者招聘和流程，交付和跟踪 导航器服务以及基线和后续数据的收集； 2）获得关键研究的经验性估计 参数为未来的研究设计提供信息，包括群体内标准级别的结果； 在基线和随访时测量结果的相关性，以及对干预措施的效果大小估计 及时的诊断和自我报告的家庭成果； 3）从父母的角度进行定性评估 小儿提供者，在护理情节中提供的家庭导航的可行性和可接受性 从可疑的自闭症屏幕开始，并以诊断分辨率结束； 4）评估资源 利用和开发决策模型，该模型将使我们能够估计家庭的经济影响 与低收入和少数族裔儿童的常规护理相比，ASD延迟 诊断评估。当前的研究建议测试干预措施的可行性以减少 及时的ASD诊断差异，在交付ASD服务连续的关键点发生 适合幼儿。需要支持自闭症服务的复杂网络的需求广泛 认可。拟议的项目将为我们的干预模型进行明确试验奠定基础。如果 有效的，干预有可能复制和扩展到其他童年行为 状况。