| dc.description.abstract | Patient Reported Outcomes (PRO) is any report of the status of a health condition that comes directly from the patient without interpretation by the clinician. PROs contain valuable information that a doctor cannot easily observe, such as symptoms experienced in day-to-day life. However, clinicians face a difficulty to use the format of PROs, typically gathered via a questionnaire, preferring to interact with patients directly. Consequently, clinicians appear repeating questions already gathered in the PRO data, while patients experience their detailed PRO reporting as a time-wasting activity. Existing attempts at improving the format of PROs have not focused on creating a solution that meets the time requirements of clinicians. This study aims to learn how to improve the format of PROs by means of visualization, so PROs can be effectively integrated in clinician workflows. To achieve such integration, this study followed the nine-stage “design study” methodology, where visualization researchers directly investigate a real-world problem in a target domain, design a validated visualization solution for it, and reflect on lessons learned to refine guidelines. This study was thus conducted at a pediatric rheumatology department of a Dutch hospital. Fly-on-the-wall observation of a pediatric rheumatologist followed by a semi-structured interview indicated that clinicians need a quick overview of the progression of PRO results of an individual patient over time while comparing these results to medication changes. Interviews of four patients indicated that patients need their doctors during their meeting to show that they understood and remember their PRO data well to the extent that they pose relevant rather than repetitive questions. Based on those observations, PROVis was developed, a visualization system that supports the clinicians in quickly learning the most important PRO data in a narrative summary and allowing for identified attributes to be plotted over time through line graphs. The visualization system is centered around hospital visit dates, clearly illustrating whether the patient filled in their questionnaire for each visit. PROVis has been evaluated with four pediatric rheumatologists and a nurse. A thematic analysis of the evaluation has shown that PROVis allows clinicians to get a quick grasp of the PRO results as well as an understanding of the chronology of the PRO data. Future renditions of PROVis should include comparisons of PRO data with clinician observations. The results of this study stress the importance of visualizations for clinicians taking the limited time available during clinics into account. Visualizations of PRO data should further illustrate the results over time, while also allowing comparisons with the changes in medication and the measurements of the clinicians. | |
