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

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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).