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 尽管在自闭症的早期识别方面进行了数十年的研究，但父母对自闭症的认识之间仍然存在很长的差距。 第一次关注和正式诊断，随后获得专门服务。减少这方面的挑战 差距包括等待名单很长，许多社区缺乏专业的提供者，以及缺乏有效的筛查 为18个月以下的婴儿提供工具。由于在征聘足够数量的工作人员方面存在方法上的挑战， 在任何一个地理区域，对早期自闭症有特殊关注的婴儿， 关注自闭症儿童的婴儿兄弟姐妹。远程保健提供了扩大 早期识别研究，并进行关键的基础工作，以确定发展 在整个社区环境中有早期发育问题的婴儿的轨迹和结果 美国的我们之前已经在前期工作中证明了这种方法的初步可行性 开发婴儿发育远程保健评估（TEDI; R21 HD 100372和R21 HD 105161，PI 滑石粉）。通过TEDI获得的行为措施是可靠的，有效的，非常满意的家庭。 重要的是，我们还发现，在我们的样本中，大多数婴儿在早期 自闭症特征的测量，沟通，语言和运动技能的发展挑战，以及提高 自闭症的可能性相对于一般人群规范。这一初步工作表明， 对这群婴儿进行全面检查我们建议前瞻性地跟踪一组100名6岁的婴儿， - 12个月前，父母的担忧。我们将在四次访视中使用TEDI远程医疗协议对其进行评估 每隔三个月。在36个月时，我们将通过远程医疗进行结局访视，以产生临床最佳结果 估计结果。该项目将实现三个具体目标。在目标1中，我们将确定比例， 自闭症预后的预测因子在目标2下，我们致力发展以社区为本的 一个后来被诊断为自闭症的婴儿样本，通过检查 结果组，以及跨组发展结果的预测因素。在目标3中，我们将 确定最佳做法，以支持家庭参与和对远程保健评估的满意度， 以及TEDI对不同社区的文化适应性，这将直接支持 在COVID-19之后的社区环境中实施远程医疗筛查和评估 流行病成功实现这些目标有可能大大增加家庭获得保健服务的机会， 开展专门评估，并提高早期识别需要服务的婴儿的能力。它将 这也为未来进行筛查和干预试验奠定了基础，并可能最终有助于 增加获得高质量干预措施的机会，改善更多国家的发展成果 患有自闭症和其他NDD的儿童。