Supporting data driven translational patient‐centered care using network analysis to visualize symptom distress in children with serious illness

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.