Design and Use of Patient-facing ePRO and Sensor Data Visualizations During Outpatient Chemotherapy (Preprint)

BACKGROUND Symptoms and side effects change frequently during outpatient cancer treatment. As electronic patient-reported outcome (ePRO) systems used in oncology have become more common, they have been primarily designed to collect symptoms from patients and shared with providers without making the data collected available to patients. The goal of this study was to develop and evaluate ePRO and sensor data visualizations that patients could access online during chemotherapy. OBJECTIVE The goal of this study was to develop and evaluate patient-facing ePRO and sensor data visualizations that patients could access online during chemotherapy. METHODS As part of an ongoing NCI-funded study to develop a remote symptom monitoring system, we created mobile-friendly web visualizations of daily symptom ratings, wearable data and self-management resources, available to patients undergoing chemotherapy. At the end of the three month study, 141 patients completed a survey. RESULTS Survey respondents were heterogenous in age (M 61 years old, range 29- 92 years old), race (80%, 113/141 white, 20%, 28/141 other) and cancer stage (56%, 75/135 Stage IV). About half (54%, 76/141) of participants accessed the link to their data visualizations. There were no significant differences between the participants who did and did not click the link during the study in terms of average age (P =.74), gender (P =.66), race (P =.50) or cancer stage (P =.31) . Of those who accessed the platform, most (54%, 41/76) viewed it a few times, while 13% (10/76) used it daily. Most (77%, 58/75) believed it was “Somewhat” or “Very Helpful/Informative.” All ten daily users joined the study within three months of starting chemotherapy for the first time. CONCLUSIONS Findings suggest that patients new to chemotherapy may be most interested in viewing visualizations of daily symptom and sensor data and that the web application is widely accessible for patients of different ages, races, and cancer stages.