Leveraging technology to identify outcome measures for young children with Down syndrome

利用技术确定唐氏综合症幼儿的治疗结果

• 批准号: 10841215
• 负责人: Lizbeth H Finestack
• 金额: $ 20.62万
• 依托单位: UNIVERSITY OF WISCONSIN-MADISON
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-08-01 至 2024-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10841215
• 关键词: 3 year old; Adolescent; Adult; Age; Behavior Therapy; Caregivers; Cellular Phone; Characteristics; Child; Child Care; Child Language; Clinic; Clinical; Clinical Trials; Code; Collection; Communication; Data; Data Collection; Development; Down Syndrome; Early Intervention; Effectiveness of Interventions; Environment; Etiology; Face; Family; Future; Genetic Transcription; Goals; Grant; Growth; Home; Home visitation; Individual; Intellectual functioning disability; Intervention; Language; Language Development; Manuals; Measurement; Measures; Methods; Nursery Schools; Outcome; Outcome Measure; Parents; Participant; Performance; Population; Psychometrics; Public Health; Research; Research Personnel; Resources; Sampling; School-Age Population; Schools; Series; Specificity; Standardization; Syndrome; Systems Analysis; Tablets; Technology; Testing; Time; Travel; Video Recording; aged; clinical practice; cost; digital technology; effective intervention; effectiveness evaluation; experience; feasibility testing; improved; intervention effect; language outcome; lexical; parent project; pharmacologic; programs; randomized, clinical trials; recruit; remote health care; skills; social; success; targeted treatment; therapy design; tool; traditional care

PROJECT SUMMARY/ABSTRACT Children who are later talkers, including children with and without Down syndrome (DS), experience significant weaknesses in communication and language development. There have been significant advances in pharmacological and behavioral interventions for children with DS, and there are interventions designed for children who are late talkers without DS. There is an urgent need to identify appropriate outcome measures to use with young children who are late talkers. Such measures have been identified for school-age children, adolescents, and adults with DS and other clinical populations. Reliable, and valid language outcome measures for younger children (2-3 years) who are late talkers are nonexistent, leaving an impossible task for researchers and clinicians to effectively evaluate the effects of interventions. This age range is particularly important, as it is a foundational time for language learning and sets the stage for success both academically and socially upon school entry. Therefore, to better serve this clinical group, we must identify a feasible, reliable, and valid set of outcome measures for late talkers. This study will evaluate the use of language samples collected remotely by caregivers using digital technology to serve as outcome measures for young children. The study has three specific aims: 1) determine the feasibility and reliability of language measures derived from two technologically-supported samples: caregiver-collected video recordings and the Language ENvironment Analysis System (LENA)-based caregiver-child interactions, 2) determine the validity of the caregiver-collected video recordings and LENA-based caregiver-child interactions using current gold-standard approaches, including standardized tests and examiner-child interactions, and 3) determine the relationships between key variables known to impact language in late talkers (I.e., intellectual disability and intelligibility) and the variables derived from the caregiver-child and LENA-based interactions. Data collection will take place in the participants' homes and will include two time points (1 month apart). The caregiver-collected and LENA recordings will take place without an examiner present. At each time point the study team will complete home visits to complete standardized assessments and an examiner-child language interaction. This method will allow us to establish the psychometric appropriateness of variables derived from these language sampling approaches, the stability of these variables over a 1-month period, and how they are influenced by important child characteristics. For the parent project we are recruiting 40 children with DS over a two-year period. For this one-year supplement we will recruit 20 2–3-year-old children who are later talkers who do not have DS. This will allow us to understand if these outcome measures are sensitive and appropriate broadly among a group of late talkers, or if there are etiology specific differences. This is the first step in a series of studies which will provide targeted treatment for language in children who are late talkers. However, without clear, robust outcome measures it is impossible to determine if the interventions are effective and efficacious.

项目总结/摘要 晚说话的儿童，包括患有和没有唐氏综合症（DS）的儿童， 沟通和语言发展的弱点。取得了大幅度进展 药物和行为干预与DS儿童，并有干预措施， 孩子们是晚说话没有DS。迫切需要确定适当的成果措施， 用于晚说话的幼儿。已经为学龄儿童确定了这些措施， 青少年和成年DS患者以及其他临床人群。可靠、有效的语言结果 对说话晚的幼儿（2-3岁）没有采取措施，这使得儿童无法完成这项任务。 研究人员和临床医生有效地评估干预措施的效果。这个年龄段尤其 重要的是，因为它是语言学习的基础时间，并为学业和学业上的成功奠定了基础。 和社会上的影响。因此，为了更好地服务于这一临床群体，我们必须确定一个可行的， 可靠的，有效的一套结果措施晚说话。这项研究将评估语言的使用 护理人员使用数字技术远程收集样本，作为对年轻人的结果衡量 孩子本研究有三个具体的目的：1）确定语言测量的可行性和可靠性 来自两个技术支持的样本：收集的视频记录和语言 环境分析系统（LENA）为基础的儿童-儿童互动，2）确定的有效性， 使用当前黄金标准的儿童收集的视频记录和基于LENA的儿童-儿童互动 方法，包括标准化测试和考官与儿童的互动，以及3）确定关系 已知影响晚说话者语言的关键变量（即，智力残疾和可理解性）， 从儿童-儿童和基于LENA的相互作用中得出的变量。数据收集将在 受试者的家中，包括两个时间点（间隔1个月）。收集的数据和LENA 录音将在没有检查员在场的情况下进行。在每个时间点，研究小组将完成家庭 完成标准化评估和检查员-儿童语言互动的访问。此方法将 允许我们建立从这些语言抽样中得出的变量的心理测量适当性 方法，这些变量在一个月内的稳定性，以及它们如何受到重要因素的影响。 孩子的特点。对于家长项目，我们在两年的时间内招募了40名患有DS的儿童。为 这个为期一年的补充，我们将招募20个2-3岁的儿童谁是后来说话谁没有DS。 这将使我们能够了解这些结果指标是否敏感和适当， 一组晚说话的人，或者是否有病因特异性差异。这是一系列研究的第一步 这将为晚说话儿童的语言提供有针对性的治疗。然而，没有明确的， 强有力的成果措施，不可能确定干预措施是否有效。