Observational studyJMIR formative research2026
Digital Health Tools Embedded in a Cancer Genetics Clinic: Observational Study.
Observational study in JMIR formative research, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Authors and funding
14 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundDigital Health Tools (DHTs), including wearables and mobile apps, offer promising avenues for personalized care and real-time monitoring, but user engagement and clinical utility-especially in pediatric populations-remain unclear. Li-Fraumeni syndrome (LFS) is a genetic mutation in the TP53 tumor suppressor gene, predisposing individuals to cancer, requiring lifelong surveillance and associated psychological stress.
objectiveWe evaluated engagement with DHTs in a cancer genetics clinic for families affected by LFS and explored their utility for patients and clinicians. Our goal was to identify insights that could inform future integration of DHTs in chronic disease populations and contribute to research.
methodsWe conducted an observational study (January-December 2022) involving patients with LFS and family members aged 5 years and older. Participants received an Empatica EmbracePlus smartwatch and a suite of self-report surveys assessing psychosocial well-being at varying frequencies (ie, daily, weekly, etc). We used survival analysis to characterize engagement over time across age, TP53 status, and previous cancer history. Generalized additive models were used to explore physiological patterns relative to cancer surveillance events. Semistructured interviews provided qualitative insight into user experiences and preferences.
resultsWe enrolled 9 children and 36 adults. Adults wore their smartwatches more often than children (mean 81%, SD 19% vs mean 56%, SD 26%; t
conclusionsDHTs are feasible and can capture clinically meaningful psychological and physiological data in high-risk pediatric and family populations with LFS. They enable timely detection of distress and facilitate targeted interventions. Our findings can inform best practices for patient-centered DHT integration into clinical care, with relevance to pediatric oncology and broader digital health contexts.
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