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

利用远程医疗来识别出生后第一年患自闭症可能性较高的婴儿

• 批准号: 10712632
• 负责人: Meagan Ruth Talbott
• 金额: $ 64.31万
• 依托单位: UNIVERSITY OF CALIFORNIA AT DAVIS
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-08-15 至 2028-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10712632
• 关键词: 4 year old; Address; Age; Age Months; Attention deficit hyperactivity disorder; COVID-19 pandemic; Caregivers; Child; Clinical; Clinical Research; Communication; Communities; Data; Development; Developmental Course; Developmental Process; Devices; Diagnosis; Diagnostic; Early Intervention; Early identification; Ensure; Equity; Evaluation; Family; Feedback; Future; General Population; Geographic Locations; Geography; Goals; Health Services Accessibility; Healthcare; Infant; Infant Development; Infant Health; Intervention; Intervention Studies; Intervention Trial; Language; Life; Measures; Mediating; Methodology; Monitor; Motor Skills; Neurodevelopmental Disorder; Outcome; Parents; Participant; Play; Protocols documentation; Provider; Psychosocial Factor; Race; Reporting; Research; Resource-limited setting; Rural; Sampling; Screening procedure; Services; Siblings; Social support; Speech Delay; Strategic Planning; Stress; Testing; United States; United States National Institutes of Health; Visit; Waiting Lists; Work; acceptability and feasibility; autism spectrum disorder; autistic children; behavior measurement; caregiver education; community setting; digital assessment; digital health; family support; feasibility testing; health assessment; health care availability; improved; infancy; infant outcome; outreach; personalized strategies; prospective; recruit; response; rurality; satisfaction; screening; service delivery; service intervention; skills; social media; telehealth; tool; trait

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.

项目摘要 尽管在早期识别自闭症方面进行了数十年的研究，但父母之间仍有很长的差距 首先关注和正式诊断，并随后访问专业服务。减少这一点的挑战 差距包括长期候补名单，许多社区缺乏专业提供者，以及缺乏经过验证的筛选 18个月以下婴儿的工具。由于招募足够数量的方法论挑战 在任何一个地理领域对自闭症的早期特定关注的婴儿，早期发展的大多数研究 专注于自闭症儿童的婴儿兄弟姐妹。远程医疗提供了扩大范围的机会 早期识别研究并进行确定发展所需的至关重要的基础工作 在整个社区环境中具有早期发育问题的婴儿的轨迹和结果 美国。我们以前已经证明了这种方法在我们的初步工作中的最初可行性 开发婴儿的远程医疗评估（TEDI； R21 HD100372和R21 HD 105161，PI 塔尔伯特）。通过TEDI获得的行为度量是可靠，有效且高度满足家庭的行为度量。 重要的是，我们还发现样本中的大多数婴儿早期得分升高 自闭症特征，沟通，语言和运动技能方面的发展挑战的度量以及提升 自闭症相对于一般人口规范的可能性。这项初步工作表明需要更多 对这群婴儿进行彻底检查。我们建议前瞻性地跟随100个婴儿6岁的小组 - 12个月的早期父母担忧。我们将在四次访问中使用TEDI远程医疗协议对其进行评估 相隔3个月。在36个月时，我们将通过远程医疗进行结果访问，以产生临床最佳 估计结果。该项目将解决3个具体目标。在AIM 1中，我们将确定比例和 自闭症结果的预测因素。在AIM 2下，我们试图表征基于社区的发展 通过检查后来诊断为自闭症的婴儿样本，通过检查之间的发育轨迹差异 结果组以及跨组发展结果的预测因素。最后，在AIM 3中，我们将 确定支持家庭参与和满足基于远程医疗的评估的最佳实践， Tedi对潜水员社区的文化适当性，这将直接支持 在COVID-19以外的社区环境中实施远程医疗筛查和评估 大流行。这些目标的成功完成有可能显着增加家庭的访问权限 专门评估并增加了需要服务的婴儿的早期识别能力。会 还为将来的努力进行筛查和干预试验奠定了基础，并最终可能有助于 增加获得高质量干预措施的机会，并改善更多的发展结果 服务不足的自闭症和其他NDD的儿童。