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

项目总结 尽管有证据表明，自闭症谱系障碍(ASD)可以在第二个阶段被准确识别 生命年，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出患有自闭症。寻求自闭症评估的家庭通常面临以下障碍 专家的可用性，漫长的等待名单，以及距离三级医疗诊断中心很远。这是 对于来自传统上服务不足的群体和社区的儿童来说尤其如此。如果没有创新的 在幼儿、家庭和临床医生中迅速发现ASD的方法将继续努力 接触和提供护理。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健康、有效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的父母管理/临床医生- 指导式远程评估工具，TAP(以前为TELE-ASD-PEDS；R21 MH118539)。初步成功 在受控实验室环境下进行的研究产生了非常高的家庭满意度， 临床医生对ASD风险分类的感知效用，以及对ASD风险分类的一致意见 评估。虽然这项工作很有希望，但由于依赖受控的实验室环境，这项工作受到了限制，相对来说， 小样本均一，并在单个研究小组内使用。我们还没有对水龙头进行验证- 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，我们也没有足够的 展示了它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。这个 目前的提案代表了对ASD远程评估工具的第一次严格评估，该工具具有大量、多样化的 在他们家里的儿童样本。在目前的研究中，我们将在两个地点招募360名幼儿(18-42岁 几个月)明确使用ASD评估工具参与基于家庭的远程医疗评估 为此目的而开发的(即水龙头)。样本将包括来自社区的儿童，他们有 ASD筛查呈阳性，以及从初级保健和国家早期干预转诊的患者 系统。我们将随机安排家庭接受基于远程医疗单独或远程医疗加的评估 一次面对面的评估，然后在6个月的时间间隔内跟踪家庭。这种方法将使我们能够 对水龙头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， 纵向评估服务访问和家庭参与度，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的评估过程和 极大地改善了传统上服务不足的群体的机会。

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.