Digital Health Tools Embedded in a Cancer Genetics Clinic: Observational Study

Area of Science:

• Digital Health
• Genetics
• Oncology

Background:

• Digital Health Tools (DHTs) offer potential for personalized care but their engagement and utility, especially in pediatric populations, are not well understood.
• Li-Fraumeni syndrome (LFS) necessitates lifelong cancer surveillance and causes significant psychological stress due to the TP53 tumor suppressor gene mutation.

Purpose of the Study:

• To evaluate user engagement with DHTs in a LFS cancer genetics clinic.
• To explore the clinical utility of DHTs for both LFS patients and clinicians.
• To gather insights for integrating DHTs into chronic disease management and research.

Main Methods:

• An observational study (Jan-Dec 2022) included 45 participants (9 children, 36 adults) with LFS.
• Participants used an Empatica EmbracePlus smartwatch and completed psychosocial well-being surveys.
• Engagement was analyzed using survival analysis, physiological patterns with generalized additive models, and user experience via interviews.

Main Results:

• Adults showed higher smartwatch wear time (81% vs 56%) and study retention (153 vs 77 days) than children.
• Children reported significantly higher depressive symptoms, sleep impairment, and stress levels.
• Physiological data revealed stress patterns linked to cancer surveillance, and a suicide alert system triggered interventions for 5 participants.

Conclusions:

• DHTs are feasible for capturing meaningful psychological and physiological data in high-risk pediatric and family populations with LFS.
• DHTs facilitate timely distress detection and targeted interventions, improving patient care.
• These findings support patient-centered DHT integration in pediatric oncology and other digital health applications.