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.

项目概要/摘要 说话较晚的儿童，包括患有或不患有唐氏综合症 (DS) 的儿童，会经历显着的 沟通和语言发展方面的弱点。已取得重大进展 针对 DS 儿童的药物和行为干预措施，并且有针对 DS 儿童的干预措施 没有 DS 的说话晚的孩子。迫切需要确定适当的结果措施 与说话较晚的幼儿一起使用。已为学龄儿童确定了此类措施， 患有 DS 的青少年和成人以及其他临床人群。可靠且有效的语言结果 对于说话晚的年幼儿童（2-3岁），目前还没有采取措施，这给他们留下了一项不可能完成的任务。 研究人员和临床医生有效评估干预措施的效果。这个年龄段尤其 很重要，因为这是语言学习的基础时间，并为学术上的成功奠定了基础 以及入学后的社交活动。因此，为了更好地服务这一临床群体，我们必须找到一种可行的、 针对迟到说话者的一套可靠且有效的结果衡量标准。本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，作为年轻人的结果衡量标准 孩子们。该研究有三个具体目标：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 基于环境分析系统 (LENA) 的看护者与儿童互动，2) 确定 使用当前黄金标准的看护者收集的视频记录和基于 LENA 的看护者与儿童互动 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（即智力障碍和清晰度）之间 来自看护者与儿童以及基于 LENA 的互动的变量。数据收集将在 参与者的家，并将包括两个时间点（相隔 1 个月）。护理人员收集和 LENA 录音将在考官不在场的情况下进行。在每个时间点，研究小组都会完成主页 访问以完成标准化评估和考官与儿童的语言互动。这个方法将 让我们能够确定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 1 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，我们将在两年内招募 40 名患有 DS 的儿童。为了 在这个为期一年的补充中，我们将招募 20 名 2-3 岁的儿童，他们是后来说话的、没有 DS 的。 这将使我们能够了解这些结果衡量标准在广泛的范围内是否敏感且适当。 一群迟到的说话者，或者是否存在病因学上的具体差异。这是一系列研究的第一步 这将为说话晚的儿童提供有针对性的语言治疗。然而，在没有明确的情况下， 强有力的结果衡量标准无法确定干预措施是否有效。