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: 10461849
• 负责人: Sally Ozonoff
• 金额: $ 70.64万
• 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/10461849
• 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; Early Intervention; Eligibility Determination; Evaluation; Face; Family; Family Characteristics; Feedback; Geography; Gold; 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; Predictive Value; Primary Health Care; Procedures; Process; Property; Provider; Psychometrics; Questionnaires; Randomized; Reporting; Research; Research Personnel; Resources; Sampling; Secure; Self Efficacy; Sensitivity and Specificity; Services; Site; Socioeconomic Status; Specialist; Standardization; Surveys; Symptoms; System; Technology; Telemedicine; Testing; Text; Time; Toddler; Underserved Population; United States; Wait Time; Waiting Lists; Work; autism spectrum disorder; autistic children; barrier to care; base; care providers; 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; recruit; 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 尽管有证据表明自闭症谱系障碍（ASD）可以在第二个 生命的一年，早期干预可以改善发展成果，美国许多儿童 直到很久以后才被诊断出患有ASD。寻求ASD评估的家庭通常会面临诸如低点之类的障碍 专家的可用性，冗长的候补名单以及三级护理诊断中心的距离。这是 对于传统服务不足的群体和社区的儿童尤其如此。没有创新的 在幼儿，家庭和临床医生中迅速识别ASD的方法将继续挣扎 访问和提供护理。远程医疗为满足这一需求提供了巨大的潜力。然而， 很少有心理上的声音，经过验证的工具可以通过远程医疗平台远程管理， 为了指导服务和行动。我们最近开发并评估了一个新型的父母管理/临床医生 - Tap（以前是Tele-ASD-PEDS; R21 MH118539）引导的电视评估工具。最初的成功 在受控实验室环境中的研究对经验的家庭满意度很高， 临床医生感知的公用事业，并就ASD风险分类和盲人全面分类达成协议 评估。尽管很有希望，但这项工作受到对受控实验室环境的依赖的限制，这是一个相对的 小型样本，并在单个研究组中使用。我们尚未验证in-in-in-in- 在更广泛的社区样本中，有新型诊断临床医生的家庭用途，我们也没有充分 证明了其对代表传统服务不足人群和地区的家庭的价值和影响。这 当前的提案代表了对ASD的电视评估工具的首次严格评估，该工具具有大型，多样的 在家中的儿童样本。在当前的研究中，在两个地点，我们将招募360个幼儿（18-42 几个月）明确使用ASD评估工具参加基于家庭的远程医疗评估 为此目的开发（即抽头）。样本将包括来自社区的孩子 对ASD筛选器以及初级保健和州早期干预的筛查筛选 系统。我们将单独基于远程医疗或远程医疗Plus随机接受评估 面对面评估，然后在6个月的时间间隔内关注家庭。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， 纵向评估服务访问和家庭参与，并检查影响诊断的因素 决策和家庭成果。这项工作有可能改变ASD评估过程和 大大改善了传统服务不足的群体的访问。