Making Creatinine Meaningful for Youth Kidney Transplant Patients and Caregivers: A User-Centered Design Study (Preprint)

BACKGROUND Understanding complex health information, such as kidney function values (e.g. creatinine), is important for youth kidney transplant recipients and caregivers to effectively engage and participate in their care. Information visualizations, such as visual analogies, highlight the similarities between two different ideas through visual means and can support understanding of abstract data to facilitate self-management. OBJECTIVE Design and evaluate a novel visualization to support the information needs of youth kidney transplant recipients and caregivers, with the goal of increasing accessible knowledge for self-management. METHODS We conducted two studies with youth kidney transplant recipients and their caregivers: Study 1 identifies visualization strategies that support patient and caregiver kidney function information needs and Study 2 evaluates a novel patient-facing Kidney Function Visualization informed by results from Study 1. In Study 1, participants drew representations of their kidney function over time. These findings led to the development of the novel Kidney Bean Visual. In Study 2, participants interacted with the personalized (incorporating EHR data) Kidney Bean Visual component for one week, then completed a feedback session exploring how the novel visual impacted reflection and self-management. All sessions and interviews were recorded, transcribed, and analyzed using content analysis (Study 1), thematic analysis, and affinity diagramming (Study 2). RESULTS In Study 1, youth and caregivers consistently described the difficulty of understanding their creatinine results and related medical terminology, with the majority using emotions to represent their kidney function. Therefore, our Kidney Bean Visual, a visual analogy, incorporated emotions and colors correlating with their creatinine and overall kidney function. In Study 2, we found that for many participants, the Kidney Bean Visual (1) mirrored and validated their emotions, prompting reflections on their kidney function contextualized by their lived experiences, (2) served as a progress check, and (3) acted as a motivator for healthy kidney care habits. CONCLUSIONS Kidney function lab values, although seemingly straightforward in their intended purpose and use, are more complex from the patient and family perspective, as they also closely align with youth kidney transplant recipients and their families' emotions. Our study demonstrates the value of designing visualizations that capture these complexities, which can create opportunities for increased understanding of health information and ultimately facilitate self-management.