Enhancing Symptom Monitoring Using Mobile Technology for Children and Adolescents with Life -Threatening Illness

Abstract

AbstractBackground: Children and adolescents with life-threatening illness such as cancer or undergoing blood and marrow transplantation experience significant symptom distress. Intense debilitating symptoms are the result of the disease and its treatment. Symptoms are under-recognized, under-reported and thus undertreated in children leading to a cycle of ongoing and escalating symptoms placing them at risk for overall poor outcomes and decreased quality of life. Most research to better understand symptom distress in children and adolescents with life-threatening illness has been cross-sectional. Little longitudinal research has been conducted to advance understanding of symptom dynamics (occurrences, clusters, and trajectories). Advanced understanding of symptom dynamics can lead to the development of targeted personalized symptom management strategies. Mobile Health (mHealth) has the potential to revolutionize our understanding of illness and the associated symptom dynamics by providing dense streams of real-time patient generated health data that can be collected when and where it occurs. Having children track and report their symptoms daily not only provides longitudinal patient generated health data, but also gives their “voice” to their symptom experience. Given the prevalence of mHealth technologies and the strong developmental fit for children and adolescents, the patient generated health data they produce are likely to enhance our understanding of symptom dynamics, address knowledge gaps, and importantly inform precision health symptom management strategies. This dissertation work was framed conceptually by the Theory of Unpleasant Symptoms (TUS). The TUS developed by Lenz guides exploration and evaluation of symptom dynamics by examining symptom characteristics (timing, intensity, duration, distress, and quality). Mobile health technology offers a unique opportunity to gather these real-time patient generated data for this purpose. This dissertation’s purpose was to dissertation was to advance understanding of symptom dynamics (occurrences, clusters, and trajectories) in children and adolescents with life-threatening illness through the use of data from mHealth, describe and visualize these symptom data in a meaningful way, and explore patient and parent caregiver perspectives on the use of mHealth technologies to monitor symptom distress. Knowledge gained from this body of work will inform this under-researched area, address gaps in symptom research in children and adolescents, advance knowledge of symptom dynamics and importantly, lead to precision health symptom management strategies.Methods: After reviewing the literature, a survey study was conducted to inform the design of the study mobile application (app) to be used as the one of the study data collection tools. Next a pilot study (n=10) was conducted to test the study design, procedures, mobile devices, and mobile device data transmission. Finally, the main dissertation study used an exploratory longitudinal mixed methods approach to explore the feasibility of monitoring symptoms in children and adolescents (n = 20) with life-threatening illness using mobile health technology, and developed symptom data visualizations from this data. Interviews with both patients and a parent caregiver (once during the study) were conducted to obtain their perspectives on the mobile technology use and the data visualizations. Results: We successfully designed the study app, Technology Recordings for better Understanding Pediatric Blood and Marrow Transplant (TRU-PBMT) and Technology Recordings to better Understand Oncology for use as one of the symptom data collection tools in the preliminary and dissertation studies. Findings from the pilot study demonstrated that it was feasible to collect longitudinal symptom data on children and adolescents with life-threatening illness using a wearable and a study app. We found it necessary to use a different wearable than the original one based on participant feedback and found our study approach and procedures to be sound. The dissertation study demonstrated feasibility and acceptability for the use of two mobile devices to collect symptom data in children and adolescent with life-threatening illness. We developed data visualizations to illustrate symptom dynamics and found patients and parents to be captivated by the symptom patterns and asking to learn more. Interviews with participants and parents led to a better understanding of the use of mHealth technology in symptom management and how individuals perceive, interpret, and make meaning of data visualized from these technologies. Conclusion: This dissertation established the feasibility and acceptability of using two mobile technologies for monitoring symptoms and further explored opportunities to visualize this data in an effective and useful manner for acutely ill children and adolescents. Knowledge generated from this work advances symptom science research and offers a framework to guide other study designs in the incorporation of mobile technologies to enhance symptom management, and improve patient outcomes. Using mobile health technologies presents new possibilities to develop precision health symptom management strategies for both acute and chronic conditions leading to improved health outcomes and quality of life.