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 后来的谈话者的孩子，包括有或没有唐氏综合症（DS）的孩子 沟通和语言发展的弱点。在 针对DS儿童的药理和行为干预措施，并为此设计了干预措施 没有DS的晚讲的孩子。迫切需要确定适当的结果指标 与已故谈话者的幼儿一起使用。已经确定了这类学龄儿童的措施， 青少年和具有DS和其他临床人群的成年人。可靠和有效的语言结果 已故讲话者的幼儿（2-3岁）的措施不存在，这是不可能的任务 研究人员和临床医生有效评估干预措施的影响。这个年龄范围特别是 重要的是，因为这是语言学习的基本时期，并为成功奠定了基础 并在上学时在社交上。因此，为了更好地为这个临床组服务，我们必须确定可行的， 可靠的，有效的结果措施。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的样本作为年轻的结果指标 孩子们。该研究具有三个特定的目的：1）确定语言测量的可行性和可靠性 源自两个技术支持的样本：护理人员收集的视频记录和语言 环境分析系统（LENA）基于照顾者 - 孩子的互动，2）确定的有效性 通过当前的金色标准 方法，包括标准化的测试和审查员与孩子的互动，3）确定关系 在已知会影响已故语言的关键变量之间（即智力残疾和智力）和 从照顾者和基于莉娜的互动得出的变量。数据收集将发生 参与者的房屋将包括两个时间点（相距1个月）。照顾者收集和莉娜 录音将在没有审查员的情况下进行。在每个时间点学习团队都会完成家 访问以完成标准化评估和审查员与孩子的语言互动。此方法将 允许我们建立从这些语言采样得出的变量的心理计量适当性 方法，这些变量在1个月内的稳定性，以及它们如何受到重要的影响 儿童特征。对于父母项目，我们将在两年内招募40名DS儿童。为了 这项为期一年的补充剂，我们将招募20个2-3岁的孩子，这些孩子是后来没有DS的讲话者。 这将使我们能够理解这些结果措施是否敏感并且在 一组已故的谈话者，或者是否存在病因特定差异。这是一系列研究的第一步 这将为已故讲话者的儿童提供针对性的语言治疗。但是，没有清楚的 强大的结果度量无法确定干预措施是否有效和有效。