Leveraging Telehealth to Identify Infants at Elevated Likelihood for Autism in the First Year of life

项目摘要 尽管几十年来对自闭症的早期识别进行了研究，但父母之间的差距仍然很大 第一个问题和正式诊断，以及随后获得专门服务的机会。减少这一问题的挑战 差距包括等待名单很长，许多社区缺乏专门的提供者，以及缺乏经过验证的筛查 供18个月以下婴儿使用的工具。由于在招聘足够数量的 早期关注自闭症的婴儿在任何一个地理区域，大多数关于早期发展的研究 关注的是患有自闭症儿童的婴儿兄弟姐妹。远程医疗提供了扩大 早期识别研究并进行关键的基础工作，以确定发展 社区环境中有早期发育问题的婴儿的轨迹和结局 美国。我们先前已经在初步工作中证明了这种方法的初步可行性。 发展婴儿发育的远程健康评估(TEDI；R21 HD100372和R21 HD 105161，PI 塔尔博特)。通过TEDI获得的行为测量是可靠的、有效的，家庭非常满意。 重要的是，我们还发现，我们样本中的大多数婴儿在早期阶段得分都很高 自闭症特征的测量，在沟通、语言和运动技能方面的发展挑战，以及 自闭症相对于一般人群正常的可能性。这项初步工作表明需要更多的工作 对这群婴儿进行彻底的检查。我们建议对100名6岁的婴儿进行前瞻性跟踪调查。 -12个月，有早期父母的担忧。我们将在四次就诊时使用TEDI远程医疗方案对他们进行评估 每隔3个月。在36个月时，我们将通过远程医疗进行结果访问，以产生最佳临床效果 估计结果。该项目将解决3个具体目标。在目标1中，我们将确定比例和 自闭症结局的预测指标。在目标2下，我们试图描述以社区为基础的发展的特点 通过检查两人发育轨迹的差异，对后来被诊断为自闭症的婴儿样本 结果组，以及跨组发展结果的预测因素。最后，在目标3中，我们将 确定支持基于远程医疗的评估的家庭参与度和满意度的最佳实践， 以及TEDI对不同社区的文化适宜性，这将直接支持 在新冠肺炎以外的社区开展远程健康筛查评估 大流行。这些目标的成功实现有可能显著增加家庭获得 开展专门评估，提高早期识别需要服务的婴儿的能力。会的 也为未来进行筛查和干预试验的努力奠定了基础，并最终可能有助于 增加获得高质量干预措施的机会，改善更多人的发展成果 患有自闭症和其他NDD的儿童服务不足。

Project Summary Despite many decades of research in early identification of autism, there remain lengthy gaps between parents’ first concerns and formal diagnosis and subsequent access to specialized services. Challenges in reducing this gap include long waitlists, lack of specialized providers in many communities, and the lack of validated screening tools for infants under 18 months of age. Due to methodological challenges in recruiting sufficient numbers of infants with early specific concern for autism in any one geographic area, most studies of early development have focused on infant siblings of children with autism. Telehealth offers the opportunity to expand the scope of early identification studies and conduct the crucial foundational work needed to determine the developmental trajectories and outcomes of infants with early developmental concerns in community settings throughout the United States. We have previously demonstrated the initial feasibility of this approach in our preliminary work developing the Telehealth Evaluation of Development for Infants (TEDI; R21 HD100372 and R21 HD 105161, PI Talbott). Behavioral measures obtained via TEDI are reliable, valid, and highly satisfactory to families. Importantly, we have also found that the majority of infants in our sample have elevated scores on early measures of autism traits, developmental challenges in communication, language, and motor skills, and elevated likelihood of autism relative to general population norms. This preliminary work indicates the need for more thorough examination of this group of infants. We propose to prospectively follow a group of 100 infants ages 6 – 12 months with early parent concerns. We will evaluate them using the TEDI telehealth protocol at four visits each 3 months apart. At 36 months, we will conduct an outcome visit via telehealth to generate clinical best estimate outcomes. The project will address 3 specific aims. In Aim 1, we will determine the proportion and predictors of autism outcomes. Under Aim 2, we seek to characterize the development of a community-based sample of infants later diagnosed with autism by examining differences in developmental trajectories between outcome groups, as well as predictors of developmental outcomes across groups. Finally, in Aim 3, we will identify best practices for supporting family engagement and satisfaction with telehealth-based assessments, and the cultural appropriateness of the TEDI for diverse communities, which will directly support the implementation of telehealth screening and assessment in community settings beyond the COVID-19 pandemic. Successful completion of these aims has the potential to significantly increase families’ access to specialized evaluations and increase the capacity for early identification of infants in need of services. It will also lay the groundwork for future efforts to conduct screening and intervention trials and may ultimately help to increase access to high-quality interventions and improve the developmental outcomes of many more underserved children with autism and other NDD’s.