Seriously ill pediatric patient, parent, and clinician perspectives on visualizing symptom data

Abstract

Objective: This study examined the perspectives on the use of data visualizations and identified key features seriously ill children, their parents, and clinicians prefer to see when visualizing symptom data obtained from mobile health technologies (an Apple Watch and smartphone symptom app). Materials and Methods: Children with serious illness and their parents were enrolled into a symptom monitoring study then a subset was interviewed for this study. A study team member created symptom data visualizations using the pediatric participant's mobile technology data. Semi-structured interviews were conducted with a convenience sample of participants (n = 14 children; n = 14 parents). In addition, a convenience sample of clinicians (n = 30) completed surveys. Pediatric and parent participants shared their preferences and perspectives on the symptom visualizations. Results: We identified 3 themes from the pediatric and parent participant interviews: Increased symptom awareness, communication, and interpretability of the symptom visualizations. Clinicians preferred pie charts and simple bar charts for their ease of interpretation and ability to be used as communication tools. Most clinicians would prefer to see symptom visualizations in the electronic health record. Discussion: Mobile health tools offer a unique opportunity to obtain patient-generated health data. Effective, concise symptom visualizations can be used to synthesize key clinical information to inform clinical decisions and promote patient-clinician communication to enhance symptom management. Conclusions: Effectively visualizing complex mobile health data can enhance understanding of symptom dynamics and promote patient-clinician communication, leading to tailored personalized symptom management strategies.