Browsing by Subject "Mobile health technology"

Children and adolescents with sickle cell disease (SCD) are at high risk for medical complications, neuropsychological sequelae, and lower overall quality of life. One target of intervention that can positively impact these outcomes is treatment adherence. Despite the known benefits of treatment adherence for health outcomes, children with SCD encounter several barriers that result in low overall levels of adherence and reduction of treatment benefits. Furthermore, little is known regarding the relationship between adherence and quality of life for this pediatric population. As such, two studies were conducted in order to (a) examine the relationship between treatment adherence and quality of life among youth with SCD, and (b) examine the feasibility, acceptability, and preliminary efficacy of a novel mobile health intervention to improve adherence among youth with SCD. For the first study, 46 children and adolescents with SCD and a caregiver were recruited. Results indicated that participants with good adherence had significantly higher parent-reported quality of life than participants with poor adherence. In contrast, based on child self-report, participants did not differ across quality of life domains. Subsequently, 43 participants were recruited to participate in the pilot intervention study, the Intensive Training Program (ITP). The intervention was conducted in two phases: Phase I recruited participants receiving iron chelation therapy to reduce the risk of iron overload associated with chronic red blood transfusions (n=11); Phase II broadened the scope of participants to those prescribed hydroxyurea (HU; n=32), a once daily oral medication. Results indicated that patients and their caregivers endorsed high levels of acceptance, ease of use, and satisfaction with mobile health technology. In addition, participants encountered several technological issues that limited access and resulted in poor compliance with the ITP for some participants early on in the study. Despite this, participants demonstrated significant increases in medication possession ratio (MPR) based on pharmacy refill as well as sustained improvements in disease knowledge. Adherent participants demonstrated significant decreases in outcomes related to caregiver burden as well as significantly lower pain impact when compared to non-adherent youth. In addition, children who were adherent reported quality of life and overall SCD-related functioning at a clinically-significant higher level when compared to those who were non-adherent. Implications for future research and application to clinical care are discussed.

Abstract

Background: 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.