JMIR Publications

ABSTRACT

Background:

Integrating Digital Health Tools (DHTs) in healthcare, including wearables and smartphone applications, presents a new front in personalized medicine. While these tools promise to improve patient monitoring, their unregulated use raises important concerns. Of particular note, many unanswered questions remain about how patients engage with DHTs and what clinical utility these tools serve.

Objective:

We aimed to explore the role of DHTs in a pediatric cancer genetics clinic, by characterizing engagement and demonstrating clinically actionable utility. We focus on children and families with Li-Fraumeni Syndrome (LFS), a genetic disorder that significantly increases an individual's cancer risk; most patients with LFS will develop some form of cancer in their lives. The mainstay of care involves longitudinal cancer surveillance to identify and treat cancer as it arises. This is a population subject to an immense burden of iatrogenic psychological distress due to the ongoing uncertainty of cancer risk.

Methods:

This observational study focuses on using DHTs to monitor patients with LFS. We explore two main areas: whether LFS patients and families are willing to use DHTs and the potential opportunities and consequences these tools bring to clinicians, patients, and their families. Participants were given an Empatica EmbracePlus smartwatch and a suite of daily, weekly, biweekly, and monthly surveys to contextualize the sensor data. We quantitatively characterize engagement with DHTs and qualitatively describe patient perspectives and insights for future DHT integration into clinical practice.

Results:

Our findings, based on a real-world deployment of DHTs in the cancer genetics clinic of a children's hospital, reveal important insights: DHTs can provide valuable information about the psychological and emotional challenges faced by patients and their families, especially in the context of ongoing surveillance for early cancer detection; information that would otherwise go undetected. For example, we were able to identify participants experiencing major distress and ensure appropriate intervention.

Conclusions:

This study underscores the need for careful consideration of DHT use in clinical settings, highlighting both their potential and the unforeseen consequences of their deployment.