Beyond the clinic: Comprehensive assessment of time burdens in cancer care.

Abstract

11011 Background: Managing cancer care can be highly demanding, consuming time and energy. Measuring this time has been limited to date. We sought to comprehensively measure the time spent on cancer-related care by leveraging a mobile application, Daynamica, which collects spatiotemporal sensing data in real-time while limiting intrusiveness to capture both objective and subjective dimensions of time use. Methods: As a proof-of-concept, we recruited individuals with metastatic breast or advanced stage ovarian cancer receiving treatment at the University of Minnesota and University of Alabama-Birmingham. Participants utilized the Daynamica app for 28 days, reporting healthcare encounters (location and type), along with completing end-of-day (EOD) surveys regarding at-home cancer-care related activities. We summarized the number and type of healthcare encounters and quantified time spent traveling to/from, waiting for, and receiving care. Utilizing the EOD survey data, we also quantified time spent on cancer-care related tasks at home. Results: A total of 58 individuals provided data for this analysis: 31 (53%) with metastatic breast cancer and 27 (47%) with advanced stage ovarian cancer; 29% were < 50 years old, 72% non-Hispanic (NH) White and 17% NH Black. Participants reported a median of 6 out-of-home healthcare episodes during the study, representing a median of 108 min/week. These episodes were most frequently labeled as including treatment (33%), clinic visit (27%) and/or labs (28%); imaging (12%), pharmacy (11%) and research (3%) were less frequent. Participants reported varying wait times during their healthcare episodes, with most involving < 15 min wait (37%), though both no wait (19%) and > 60 min of waiting (19%) were frequent. We observed variation in time individuals spent traveling to/from their healthcare visit, with a median travel time per episode of 31 min (5th-95th percentile range 4-125). The proportion of time spent receiving care relative to wait and travel time was often less than 50% of the total time, particularly when the time spent receiving direct care was < 60 min. Participants reported spending a significant amount of time on telehealth visits, taking medications, scheduling appointments, and managing insurance and medical bills (median 120 min/week); of these 4 tasks, taking medicines or injections was the most frequently reported and time-consuming category. This estimate jumped to 325 min/week when also including time spent on symptom management, arranging help/transportation, and seeking information about cancer. Conclusions: The time spent on cancer related-care is vastly underestimated when capturing healthcare encounters only. Comprehensive measurement of time spent on cancer related tasks is an important first step towards developing and testing interventions to improve healthcare efficiencies and reduce patient burden.