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: 10647275
• 负责人: Lizbeth H Finestack
• 金额: $ 42.28万
• 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: 2023-05-08 至 2025-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10647275
• 关键词: Adolescent; Adult; Age; Behavior Therapy; Behavioral; Birth; Caregivers; Characteristics; Child; Child Care; Child Development; Child Language; Clinic; Clinical; Clinical Services; Clinical Trials; Code; Collection; Communication; Data; Data Collection; Development; Down Syndrome; Early Intervention; Effectiveness of Interventions; Environment; Family; Floor; Future; Genetic Transcription; Goals; Grant; Growth; Home; Home visitation; Impairment; Individual; Intellectual functioning disability; Intervention; Language; Language Development; Life; Measurement; Measures; Methods; Nursery Schools; Outcome; Outcome Measure; Participant; Performance; Pharmacologic Substance; Psychometrics; Public Health; Research; Research Personnel; Resources; Sampling; School-Age Population; Schools; Standardization; Systems Analysis; Technology; Testing; Time; Toddler; Travel; Video Recording; aged; clinical practice; cost; digital technology; effective intervention; effectiveness evaluation; experience; feasibility testing; improved; intervention effect; language impairment; language outcome; lexical; pharmacologic; programs; randomized, clinical trials; remote health care; skills; social; success; tool; traditional care

PROJECT SUMMARY/ABSTRACT Children with Down syndrome (DS) experience significant weaknesses in communication and language development in addition to impairments in intellectual ability. There have been significant advances in both pharmacological and behavioral interventions for children with DS to support their development. Thus, there is an urgent need to identify appropriate outcome measures to use with young children with DS. Such measures have been identified for school-age children, adolescents, and adults with DS. However, reliable, and valid language outcome measures for younger children (2-5 years) with DS are nonexistent, leaving an impossible task for researchers and clinicians to effectively evaluate the effects of interventions for young children. 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 young children with DS. 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 DS (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. The information from this project has direct implications for clinical trials, including both pharmaceutical and behavioral interventions, research paradigms focused on understanding language development during the early years of development for children with DS, and clinical services offered to young children with DS.

项目概要/摘要 患有唐氏综合症 (DS) 的儿童在沟通和语言方面存在明显的弱点 除了智力障碍之外，还有发育障碍。两方面都取得了重大进展 对 DS 儿童进行药物和行为干预以支持他们的发育。因此，有 迫切需要确定适用于患有 DS 的幼儿的适当结果措施。此类措施 已确定适用于患有 DS 的学龄儿童、青少年和成人。然而，可靠且有效 针对患有 DS 的年幼儿童（2-5 岁）的语言结果测量不存在，因此不可能 研究人员和临床医生的任务是有效评估幼儿干预措施的效果。这 年龄范围尤为重要，因为这是语言学习的基础时期，为语言学习奠定了基础。 入学后在学业和社交上取得成功。因此，为了更好地服务这一临床群体，我们 必须为患有 DS 的幼儿确定一套可行、可靠且有效的结果测量方法。这项研究将 评估护理人员使用数字技术远程收集的语言样本的使用情况 幼儿的成果衡量标准。该研究有三个具体目标：1）确定可行性和 来自两个技术支持样本的语言测量的可靠性：护理人员收集的视频 录音和基于语言环境分析系统 (LENA) 的看护者与儿童的互动，2) 确定看护者收集的视频记录和基于 LENA 的看护者与儿童互动的有效性 使用当前的黄金标准方法，包括标准化测试和考官与孩子的互动，以及 3) 确定已知影响 DS 语言的关键变量之间的关系（即智力障碍 和可理解性）以及从看护者与儿童和基于 LENA 的互动中得出的变量。数据 收集将在参与者家中进行，包括两个时间点（相隔 1 个月）。这 护理人员收集的录音和 LENA 录音将在检查员不在场的情况下进行。在每个时间点 研究小组将完成家访，以完成标准化评估和考官-儿童语言 相互作用。这种方法将使我们能够建立源自变量的心理测量适当性 这些语言抽样方法、这些变量在 1 个月内的稳定性以及它们的稳定性 受儿童重要特征的影响。该项目的信息对临床有直接影响 试验，包括药物和行为干预，研究范式侧重于 了解 DS 儿童早期语言发展以及临床 为患有 DS 的幼儿提供的服务。