Development of a Novel mHealth Platform to Track Health Behaviors of Young Children with Down Syndrome

项目摘要/摘要 大约一半的唐氏综合症儿童患有肥胖症，这使他们处于不成比例的高风险状态 糖尿病、阻塞性睡眠呼吸暂停综合征和步态障碍。尽管存在这些风险，但预防 在这群人中，努力被忽视了。本申请中提出的研究旨在开发一种 新的mHealth平台用于跟踪唐氏综合症儿童的健康行为并识别 可能导致儿童早期体重快速增加的行为。创新的早期儿童健康： 唐氏综合症(每个DS)平台将提示照顾者跟踪与体重有关的健康行为 结果，并将此数据安全地提供给临床医生。每个DS寻求将临床实践范例转变1) 强调了识别唐氏综合症特定风险因素对早期体重快速增加的重要性， 2)提供与健康促进相关的临床治疗计划；3)提供评估健康的平台 并建立及时干预措施，以支持以家庭为中心的行为改变。这部作品 代表着早期护理重点的必要转变，以预防肥胖和减少与体重相关的健康 观察到唐氏综合症儿童之间的差异。为了设计一个与利益相关者相关的mHealth平台， 我们将遵循敏捷软件开发模型，强调来自 技术我们将聘请护理员和临床医生(即，职业、身体和语言 治疗师)最终用户，以促进每个DS mHealth平台的未来实施和采用。我们 将收集定性和定量数据，以收集对每个DS的流程、功能和可用性的反馈 同时设计、开发和中试这项新技术。我们将首先使用以下工具设计每个DS 与照顾者(n~24)和临床医生(n~24；目标1a)进行迭代焦点小组讨论。接下来，我们将开发一种 每个DS的全功能版本，并根据专家小组的通知建立内容有效性(n~6；目标 1B)。然后，我们将与护理人员(n=10)和临床医生(n=10)一起对每个DS平台进行试点测试和优化 30天以上(目标2)。使用数据(例如响应率、使用频率)和关于儿童健康行为的数据 将直接从每个DS移动应用程序和临床医生门户收集。参赛者将完成 调查和简短访谈，以描述和评估每种药物的临床实用性、可接受性和总体可用性 DS.已经建立了基准来确定每个DS的可用性和可接受性。这个 研究团队在移动健康开发、生态瞬时评估、 唐氏综合征，健康促进完成研究。这一系列研究的长期目标是 预防唐氏综合症儿童肥胖。该项目直接与特别通知保持一致 对移动健康技术的兴趣，以支持评估和干预以促进个人健康 患有唐氏综合征(非-OD-21-092)。

Project Summary/Abstract Approximately half of all children with Down syndrome are obese, placing them at disproportionately high risk of diabetes mellitus, obstructive sleep apnea syndrome, and gait disorders. Despite these risks, prevention efforts have been neglected in this population. The research proposed in this application seeks to develop a novel mHealth platform to track the health behaviors of young children with Down syndrome and identify behaviors that may contribute to rapid weight gain during early childhood. The innovative Early Child Health: Down syndrome (EACH DS) platform will prompt caregivers to track health behaviors linked to weight outcomes and provide this data securely to clinicians. EACH DS seeks to shift clinical practice paradigms by 1) highlighting the importance of identifying Down syndrome specific risk factors for rapid weight gain early in life, 2) informing clinical treatment plans related to health promotion, and 3) providing a platform to assess health behaviors and build just-in-time interventions to support family-centered behavior change. This work represents a necessary shift in the focus of early care to prevent obesity and reduce weight-related health disparities observed among children with Down syndrome. To design a stakeholder-relevant mHealth platform, we will follow the agile software development model, emphasizing iterative feedback from end-users of the technology. We will engage both caregiver and clinician (i.e., occupational, physical, and speech-language therapists) end-users to promote future implementation and adoption of the EACH DS mHealth platform. We will collect qualitative and quantitative data to gather feedback on EACH DS's flow, functionality, and usability while designing, developing, and pilot testing this novel technology. We will first design EACH DS using iterative focus group discussions with caregivers (n~24) and clinicians (n~24; aim 1a). Next, we will develop a fully functional version of EACH DS and establish content validity as informed by an expert panel (n~6; aim 1b). Then, we will pilot test and optimize the EACH DS platform with caregivers (n=10) and clinicians (n=10) over 30 days (aim 2). Usage data (e.g., response rate, frequency of use) and data on child health behaviors will be collected directly from the EACH DS mobile application and clinician portal. Participants will complete surveys and brief interviews to describe and rate the clinical utility, acceptability, and overall usability of EACH DS. Benchmarks have been established to determine the usability and acceptability of EACH DS. The research team demonstrates requisite expertise in mHealth development, ecological momentary assessment, Down syndrome, and health promotion to complete the study. The long-term goal of this line of research is to prevent obesity among children with Down syndrome. This project is directly aligned with the Notice of Special Interest for mHealth technology to support the assessment and intervention to promote health for individuals with Down syndrome (NOT-OD-21-092).