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

基本信息

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
项目类别：
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

项目摘要

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).

项目概要/摘要大约一半患有唐氏综合症的儿童肥胖，使他们面临极高的风险糖尿病、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，但仍需预防在这一人群中所做的努力被忽视了。本申请中提出的研究旨在开发一种新型移动医疗平台可追踪患有唐氏综合症的幼儿的健康行为并识别可能导致幼儿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结果并将这些数据安全地提供给临床医生。 EACH DS 力求将临床实践范式转变 1) 强调识别唐氏综合症特定危险因素对于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) 提供健康评估平台行为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唐氏综合症儿童之间观察到的差异。为了设计一个与利益相关者相关的移动医疗平台，我们将遵循敏捷软件开发模型，强调来自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其中（即职业、身体和言语方面）治疗师）最终用户，以促进 EACH DS mHealth 平台的未来实施和采用。我们将收集定性和定量数据，以收集有关每个 DS 的流程、功能和可用性的反馈在设计、开发和试点测试这项新技术的同时。我们将首先使用以下方法设计每个 DS 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 1b).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超过 30 天（目标 2）。使用数据（例如响应率、使用频率）和儿童健康行为数据将直接从 EACH DS 移动应用程序和临床医生门户收集。参与者将完成调查和简短访谈来描述和评估 EACH 的临床实用性、可接受性和整体可用性 DS。已经建立了基准来确定每个 DS 的可用性和可接受性。这研究团队展示了移动医疗开发、生态瞬时评估、完成唐氏综合症和健康促进研究。该研究方向的长期目标是预防唐氏综合症儿童的肥胖。本项目与《特别通知》直接对接对移动医疗技术支持评估和干预以促进个人健康的兴趣患有唐氏综合症（NOT-OD-21-092）。