Addressing disparities in ASD diagnosis using a direct-to-home telemedicine tool: Evaluation of diagnostic accuracy, psychometric properties, and family engagement

使用直接到家远程医疗工具解决 ASD 诊断中的差异：评估诊断准确性、心理测量特性和家庭参与度

• 批准号: 10667589
• 负责人: Sally Ozonoff
• 金额: $ 66.92万
• 依托单位: VANDERBILT UNIVERSITY MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-08-04 至 2026-07-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10667589
• 关键词: Address; Affect; Age; Agreement; Assessment tool; Blinded; COVID-19 pandemic; Caregivers; Caring; Characteristics; Child; Childhood; Classification; Clinical; Communities; Decision Making; Development; Diagnosis; Diagnostic; Diagnostic Services; Diagnostic Specificity; Diagnostic tests; Disparity; Disparity in diagnosis; Early Intervention; Eligibility Determination; Ethnic Origin; Evaluation; Face; Family; Family Characteristics; Feedback; Geography; Health Insurance Portability and Accountability Act; Health Services Accessibility; Home; Improve Access; Laboratories; Life; Link; Measures; Mediating; Methodology; Methods; Outcome; Parents; Pathway interactions; Perception; Performance; Persons; Population; Predictive Value; Primary Care; Procedures; Process; Property; Provider; Psychometrics; Questionnaires; Race; Randomized; Reporting; Research; Research Personnel; Resources; Sampling; Secure; Self Efficacy; Services; Site; Socioeconomic Status; Specialist; Standardization; Stress; Surveys; Symptoms; System; Technology; Telemedicine; Testing; Text; Time; Toddler; Underserved Population; United States; Wait Time; Waiting Lists; Work; access restrictions; autism spectrum disorder; autistic children; barrier to care; clinical encounter; design; diagnostic accuracy; disorder risk; disparity reduction; empowerment; evidence base; experience; geographic barrier; handheld mobile device; health disparity; improved; infancy; innovation; instrument; medically underserved; novel; primary care provider; recruit; remote administration; rural setting; rural underserved; satisfaction; screening; service engagement; service intervention; socioeconomics; sound; telehealth; tertiary care; time interval; tool; underserved area; underserved community

PROJECT SUMMARY Although there is evidence that autism spectrum disorder (ASD) can be accurately identified during the second year of life, and that early intervention can improve developmental outcomes, many children in the United States are not diagnosed with ASD until much later. Families seeking ASD evaluation often face barriers such as low availability of specialists, lengthy waitlists, and long distances to tertiary care diagnostic centers. This is especially true for children from traditionally underserved groups and communities. Without an innovative approach for prompt identification of ASD in young children, families and clinicians will continue to struggle with accessing and providing care. Telemedicine offers tremendous potential for addressing this need. However, there are few psychometrically sound, validated tools that can be administered remotely, via telehealth platforms, in order to guide service and action. We recently developed and evaluated a novel parent-administered/clinician- guided tele-assessment tool, the TAP (previously the TELE-ASD-PEDS; R21 MH118539). Initial successful studies within a controlled laboratory context yielded very high levels of family satisfaction with the experience, perceived utility by clinicians, and agreement regarding ASD risk classification with blinded comprehensive evaluation. Although promising, this work was limited by its reliance on controlled laboratory settings, a relatively small homogeneous sample, and use within a single research group. We have not yet validated the TAP for in- home use in a broader community sample, with novel groups of diagnostic clinicians, nor have we adequately demonstrated its value and impact for families representing traditionally underserved populations and areas. The current proposal represents the first rigorous evaluation of a tele-assessment tool for ASD with a large, diverse sample of children within their homes. In the current study, across two sites, we will recruit 360 toddlers (18-42 months) to participate in a home-based telemedicine evaluation using an ASD assessment tool explicitly developed for this purpose (i.e., the TAP). The sample will include children from the community who have screened positive on an ASD screener, as well as those referred from primary care and state early intervention systems. We will randomize families to receive assessment based on telemedicine alone or telemedicine plus an in-person evaluation, and then follow families over a 6-month time interval. This methodology will allow us to conduct rigorous psychometric evaluation of the TAP and comparison to widely used diagnostic tests, longitudinally evaluate service access and family engagement, and examine factors that affect diagnostic decision-making and family outcomes. This work has potential to transform the ASD evaluation process and dramatically improve access for traditionally underserved groups.

项目概要 尽管有证据表明自闭症谱系障碍（ASD）可以在第二阶段被准确识别 美国许多儿童认为早期干预可以改善发育结果 直到很久以后才被诊断出患有 ASD。寻求自闭症谱系障碍 (ASD) 评估的家庭经常面临诸如低等障碍 专家的可用性、漫长的等候名单以及距三级护理诊断中心的距离。这是 对于来自传统上服务不足的群体和社区的儿童尤其如此。没有创新的 快速识别幼儿自闭症谱系障碍的方法、家庭和临床医生将继续努力解决 获得并提供护理。远程医疗为满足这一需求提供了巨大的潜力。然而， 很少有心理测量学上合理的、经过验证的工具可以通过远程医疗平台进行远程管理， 以指导服务和行动。我们最近开发并评估了一种新颖的家长管理/临床医生- 引导式远程评估工具 TAP（以前称为 TELE-ASD-PEDS；R21 MH118539）。初步成功 在受控实验室环境下进行的研究使家庭对这次经历非常满意， 临床医生感知到的效用，以及关于盲法综合自闭症谱系障碍风险分类的一致意见 评估。尽管前景广阔，但这项工作受到其对受控实验室环境的依赖的限制，这是一个相对 小均质样本，并在单个研究小组内使用。我们尚未验证 TAP 的 in- 在更广泛的社区样本中家庭使用，以及新的诊断临床医生群体，我们也没有充分 展示了其对代表传统上服务不足的人口和地区的家庭的价值和影响。这 当前的提案代表了对 ASD 远程评估工具的首次严格评估，该工具具有大量、多样化的数据 家中儿童的样本。在当前的研究中，我们将在两个地点招募 360 名幼儿（18-42 岁） 月）明确使用 ASD 评估工具参与家庭远程医疗评估 为此目的而开发的（即 TAP）。样本将包括社区中患有以下疾病的儿童： 自闭症谱系障碍 (ASD) 筛查仪以及初级保健和州早期干预转介的筛查结果呈阳性 系统。我们将随机家庭接受仅基于远程医疗或远程医疗加远程医疗的评估 进行现场评估，然后以 6 个月的时间间隔跟踪家庭。这种方法论将使我们能够 对 TAP 进行严格的心理测量评估，并与广泛使用的诊断测试进行比较， 纵向评估服务获取和家庭参与度，并检查影响诊断的因素 决策和家庭结果。这项工作有可能改变 ASD 评估流程 极大地改善了传统上服务不足的群体的获取机会。