Project Details
Description
Project Summary.
In line with NIH’S INCLUDE research plan (NOT-OD-24-044), we propose to develop a multicomponent
intervention that combines mobile and wearable technologies to facilitate healthy behaviors (physical activity,
diet, sleep) and improve quality of life and nutritional status among children and adolescents with Down
Syndrome (DS). Individuals with DS are at higher risk for lifestyle related adverse health outcomes including
obesity and sleep apnea, which can lead to reduced well-being in both the child with DS and their caregivers.
Mobile technologies (e.g., applications, sensors) are increasingly being used to promote healthy routines at
home due to their high ecological validity and scalability. Problematically, there are few wellness apps designed
specifically for the DS population. This high-risk/high-reward research application aims to (1) develop ThriveDS,
a game-based wellness app for children and adolescents with DS (and their caregivers), and (2) conduct beta-
testing of the ThriveDS mobile app to assess its feasibility, acceptability, and usability. Throughout the project,
we will involve a group of stakeholders including individuals with DS to guide our research procedures and app
development. Content modules, game elements and features for the ThriveDS app will be initially selected based
on evidence review and theory-based behavioral change techniques, and finalized following a series of
qualitative user research. Focus groups will be conducted with parents of children and adults with DS to
understand the users’ needs/requirements from a wellness app and gather feedback on the features, format,
and educational content of the Thrive-DS app. Then we will interview experts in relevant fields (e.g., nutrition,
physical therapy, and occupational therapy), who will provide insights into key evidence-based mechanisms for
DS-specific nutrition, physical activity, and sleep interventions, respectively. We will then employ directed content
analysis to synthesize these findings, identify a priority list of elements for the application, and then develop the
alpha version (first iteration) of the ThriveDS app. Next, the app will undergo usability testing (n=10) followed by
the full development of the app (beta version). We expect that the ThriveDS mobile intervention will use a
combination of educational modules/videos, game elements, and personalized, real-time brief intervention
prompts based on data from wearable activity trackers (e.g., activity level, sleep patterns). In Aim 2, the app will
undergo 3-month beta testing in a cohort of individuals DS (n=27). We will then assess its feasibility (recruitment,
retention, usage statistics), acceptability (user satisfaction), and usability (ease of use) via app analytics and
questionnaires. We will then interview caregivers (n=15) who participated in the beta testing, which will be
analyzed to identify core facilitators and barriers to app usage. We anticipate that our next step will be an inclusive
clinical trial in the DS population, addressing component 3 of the INCLUDE Research Plan. We plan to rapidly
disseminate our findings and data, thus accelerating development of interventions for co-occurring disorders in DS.
We will also disseminate our findings to the local and national DS communities via manuscripts and presentations.
| Status | Active |
|---|---|
| Effective start/end date | 8/19/25 → 7/31/27 |
Funding
- Eunice Kennedy Shriver National Institute of Child Health and Human Development: $431,750.00
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