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.

项目摘要/摘要 后来会说话的儿童，包括患有和不患有唐氏综合症(DS)的儿童，经历了 在沟通和语言发展方面的弱点。在以下方面取得了重大进展： 对患有DS的儿童进行药物和行为干预，并为以下目的设计干预措施 说话迟缓但没有DS的儿童。迫切需要确定适当的成果措施，以 适用于说话较晚的幼儿。已经为学龄儿童确定了这样的措施， 青少年、患有DS的成人和其他临床人群。可靠、有效的语言结果 针对说话迟缓的较小儿童(2-3岁)的措施是不存在的，给他们留下了一个不可能完成的任务 研究人员和临床医生有效地评估干预的效果。这个年龄段的人特别 重要的是，因为这是语言学习的基础时间，并为在学术上取得成功奠定了基础 以及入学后的社交活动。因此，为了更好地服务于这一临床群体，我们必须找到一种可行的、 为迟到者提供一套可靠、有效的结果衡量标准。这项研究将评估语言的使用情况 照顾者使用数字技术远程收集样本作为青少年结果衡量标准 孩子们。本研究有三个具体目的：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：护理者收集的视频记录和语言 基于环境分析系统(LENA)的照顾者-儿童互动，2)确定照顾者-儿童互动的有效性 使用当前黄金标准的照顾者收集的视频记录和基于Lena的照顾者与儿童的互动 方法，包括标准化考试和考官与孩子的互动，以及3)确定关系 在已知的影响晚期说话的人的语言的关键变量(即智力残疾和可理解性)和 这些变量来自照顾者-儿童和基于Lena的互动。数据收集将在#年进行 参与者的家，并将包括两个时间点(相隔1个月)。《照顾者》--克雷格和莉娜 录音将在没有考官在场的情况下进行。在每个时间点，研究小组都将完成回家 探访以完成标准化评估和考官与儿童的语言互动。此方法将 允许我们建立从这些语言样本中得出的变量的心理测量学适当性 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 儿童特征。对于家长项目，我们将在两年内招募40名患有DS的儿童。为 在为期一年的补充中，我们将招募20名2-3岁的儿童，他们后来会说话，但没有DS。 这将使我们能够了解这些结果衡量标准是否在 一组说话较晚的人，或是否有病因上的具体差异。这是一系列研究的第一步 它将为说话迟缓的儿童提供有针对性的语言治疗。然而，没有明确的， 稳健的结果衡量--不可能确定干预措施是否有效和有效。