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

开发新型移动医疗平台来追踪患有唐氏综合症的幼儿的健康行为

• 批准号: 10569215
• 负责人: Angela Renee Caldwell
• 金额: $ 42.21万
• 依托单位: UNIVERSITY OF PITTSBURGH AT PITTSBURGH
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-02-10 至 2025-01-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10569215
• 关键词: 6 year old; Adoption; Advocate; Age; Behavior; Benchmarking; Body Weight decreased; Cardiac; Caregivers; Caring; Child; Child Health; Child Nutrition; Clinical; Clinical Treatment; Cognitive; Collaborations; Communication; Data; Deglutition Disorders; Development; Developmental Delay Disorders; Diabetes Mellitus; Down Syndrome; Ecological momentary assessment; Effectiveness; Face; Family; Feedback; Focus Groups; Frequencies; Future; Gait abnormality; Goals; Habits; Health Planning; Health Promotion; Health Technology; Health and Behavior in Children; Health behavior; Healthy Eating; Hyperinsulinism; Individual; Institute of Medicine (U.S.); Intervention; Interview; Knowledge; Language; Lead; Legal Guardians; Life; Link; Longevity; Measures; Medical; Methods; Mobile Health Application; Modeling; Monitor; Motor; Obesity; Obstructive Sleep Apnea; Occupational; Outcome; Parents; Participant; Physical activity; Play; Population; Prevention; Questionnaires; Reporting; Research; Research Personnel; Research Support; Risk; Risk Factors; Role; Secure; Sleep; Speech; Speech Therapist; Structure; Surveys; Technology; Testing; Time; Update; Validity and Reliability; Vulnerable Populations; Weight; Weight Gain; Work; acceptability and feasibility; behavior change; care systems; clinical practice; cohort; comorbidity; cost effectiveness; design; early childhood; empowerment; evidence base; family support; feasibility testing; future implementation; health assessment; health disparity; high risk; implantation; improved; innovation; interest; iterative design; mHealth; mobile application; model development; neglect; new technology; novel; nutrition; obesity in children; obesity prevention; obesity risk; pilot test; prototype; rapid weight gain; recruit; response; satisfaction; sedentary lifestyle; software development; tool; treatment planning; trend; usability

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).

项目总结/摘要 大约一半的唐氏综合症儿童肥胖，使他们处于不成比例的高风险之中 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， 在这一人群中，努力被忽视了。本申请中提出的研究寻求开发一种 一种新型的移动健康平台，用于跟踪唐氏综合症幼儿的健康行为， 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（EACH DS）平台将提示护理人员跟踪与体重相关的健康行为 并将这些数据安全地提供给临床医生。EACH DS寻求通过以下方式改变临床实践范式：1） 强调了识别唐氏综合症特定风险因素对生命早期体重快速增加的重要性， 2)告知与健康促进相关的临床治疗计划，以及3）提供评估健康的平台 行为和建立及时的干预措施，以支持以家庭为中心的行为改变。这项工作 代表了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 在唐氏综合症儿童中观察到的差异。为了设计一个与消费者相关的移动健康平台， 我们将遵循敏捷软件开发模型，强调最终用户的迭代反馈， 技术.我们将让护理人员和临床医生参与进来（即，职业、身体和语言 最终用户，以促进EACH DS移动健康平台的未来实施和采用。我们 将收集定性和定量数据，以收集关于每个DS的流程、功能和可用性的反馈 同时设计、开发和试验这项新技术。我们将首先使用 与护理人员（n~24）和临床医生（n~24;目标1a）进行反复焦点小组讨论。接下来，我们将开发一个 EACH 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 1 b）。然后，我们将与护理人员（n=10）和临床医生（n =10）一起对EACH 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，答复率、使用频率）和儿童健康行为数据 将直接从EACH DS移动的应用程序和临床医生门户网站收集。参与者将完成 调查和简短访谈，以描述和评价EACH的临床实用性、可接受性和总体可用性 DS.已建立基准以确定每个DS的可用性和可接受性。的 研究团队展示了移动健康发展，生态瞬时评估， 唐氏综合症，并完成健康促进的研究。这项研究的长期目标是 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 感兴趣的mHealth技术，以支持评估和干预，以促进个人的健康 唐氏综合征（NOT-OD-21-092）。