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.

项目摘要 虽然有证据表明，自闭症谱系障碍（ASD）可以准确地确定在第二个 早期干预可以改善发育结果，许多美国儿童 直到很久以后才被诊断为ASD。寻求ASD评估的家庭往往面临着诸如低 专家的可用性，漫长的等待名单，以及到三级护理诊断中心的距离。这是 对于传统上得不到充分服务的群体和社区的儿童尤其如此。如果没有创新 在幼儿、家庭和临床医生中迅速识别ASD的方法将继续努力， 获得和提供护理。远程医疗为满足这一需要提供了巨大的潜力。然而，在这方面， 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保健平台远程管理， 以指导服务和行动。我们最近开发并评估了一种新型的家长管理/临床医生- 引导式远程评估工具TAP（以前称为TELE-ASD-PEDS; R21 MH118539）。初次成功 在受控实验室环境中的研究产生了非常高的家庭满意度， 临床医生的感知效用，以及关于ASD风险分类与盲态综合 评价虽然这项工作很有前途，但由于依赖于受控的实验室环境， 小的同质样本，并在一个单一的研究小组内使用。我们还没有验证TAP的有效性- 在更广泛的社区样本中的家庭使用，以及新的诊断临床医生群体，我们也没有充分 这表明了其对代表传统上得不到充分服务的人口和地区的家庭的价值和影响。的 目前的建议是第一个严格的评估远程评估工具的ASD与一个大的，不同的， 孩子们在家里的样本。在目前的研究中，我们将在两个地点招募360名幼儿（18 - 42岁 个月）参与基于家庭的远程医疗评估，使用ASD评估工具明确 为此目的而开发的（即，TAP）。样本将包括来自社区的儿童， 在ASD筛查仪上筛查为阳性，以及从初级保健和国家早期干预中转诊的患者 系统.我们将随机分配家庭接受基于单独远程医疗或远程医疗加的评估 一个面对面的评估，然后跟踪家庭超过6个月的时间间隔。这种方法将使我们能够 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， 纵向评估服务获得和家庭参与，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评估过程， 大大改善传统上得不到充分服务的群体的机会。