ABSTRACT
PURPOSE: There are an increasing number of techniques and tools to improve the capacity for children to relay their perceptions of their symptom experience while undergoing blood and marrow transplant (BMT). Network analysis (NA) is a tool that can illustrate associations between symptoms and the distress they cause. We aimed to develop a biopsychosocial assessment clinical analytic tool to examine symptom relationships for children undergoing BMT to find actionable relationships for intervention to improve clinical outcomes including mood. DESIGN AND METHODS: This pilot study used an analytical mobile application tool to support a wide scope of 15 biopsychosocial symptom distress levels and five mood assessments. Children recorded their symptom distress and mood using the app. NA was used to explore relationships between symptom distress and mood. RESULTS: Four children, 11-14 years old, undergoing BMT used the app daily during hospitalization. We found a strong presence of emotional distress and its associations symptom distress and mood. Multiple symptom associations were identified including associations between the set of symptoms difficulty breathing and fever (0.557), sad and worried (0.429). Of note, pain distress had a strong capacity to bridge other symptoms and was connected directly to many symptoms. PRACTICE IMPLICATIONS: We found the significance of patient struggles with emotional and symptom distress and the importance of this relationship to other clinical outcomes. This provides valuable insights and an improved understanding of the child's symptoms. Our findings support early assessment, intervention, and improved symptom communication to enhance sense of well-being and the child's care experience.
Subject(s)
Anxiety , Emotions , Child , Humans , Adolescent , Pilot ProjectsABSTRACT
Background: Mobile health (mHealth) applications (app) have proven to be useful in gathering symptom data for a variety of populations living with chronic and serious illnesses. These mHealth tools have been built for a variety of populations but can quickly lose their novelty over time due to the lack of changes and engagement between the mHealth tool and the user. High costs, constantly changing timelines, and difficulties in building compliant data storage systems are some of the reasons why mHealth development and implementation can be a challenge. Methods: Our team's tool, QuestExplore (QE), was built in collaboration with healthcare providers, child-life specialists, a music therapist, mobile app developers, data specialists, cyber security specialists, researchers, and children living with chronic illnesses alongside their families. Through this process, our team learned various ways to reduce costs, streamline the app development process, and build compliant data storage systems. In addition, our frequent interactions with stakeholders provided us with the ability to continuously make improvements, to build an engaging mHealth app. Results: Based upon our findings, our team needed to include prompting, condensing, gamification, data visualizations, and an engaging user design in the remodel of QE. Through a three-stage process of redesigning our previous symptom monitoring apps, QE was developed to better communicate between our users and their providers, with the overall hope of improving symptom management of these children. Conclusions: In the paper, we aim to explain how our team developed QE with feedback from our stakeholders, while also continuously improving our development process through the lessons we gained through the app's development. QE is now being used in both Duke University and the University of North Carolina at Chapel Hill and will soon be implemented in Amsterdam University Medical Center.
