Frustrations with time spent on cancer care among patients with metastatic breast or advanced ovarian cancer.
Authors: Vogel Rachel I. , Jewett Patricia , Parsons Helen M. , Brown Katherine , Pecoraro Alyssa , Starks Indya , Ingram Stacey Adewakun , Gupta Arjun , Teoh Deanna Gek Koon , Fan Yingling , Blaes Anne Hudson , Arend Rebecca Christian , Rocque Gabrielle Betty , Wolfson Julian 
Published: September 2024

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Background:
Individuals with cancer face substantial demands on their energy and time due to the complexity of cancer care. We sought to describe frustrations with time-consuming aspects of cancer care among individuals with advanced ovarian or breast cancer. We hypothesized that frustrations would be highest for time spent on administrative tasks, particularly for those who are younger, employed, and have dependents.
Methods:
We analyzed baseline survey data from an ongoing prospective study of the time burdens of cancer care among individuals receiving treatment for ovarian or metastatic breast cancer at the University of Minnesota and University of Alabama-Birmingham. The survey included questions about frustrations with the time needed for cancer-related activities such as travel time, finding transportation, care coordination, receiving treatment, and paperwork (0=Not at all, 10=Extremely frustrated). We summarized the data using descriptive statistics and made comparisons across demographic and clinical characteristics using Wilcoxon rank-sum and Kruskal-Wallis tests.
Results:
A total of 67 participants completed the baseline survey, 37 (55.2%) with metastatic breast cancer and 30 (44.8%) with ovarian cancer. About 1/4 of participants (26.9%) were under 50 years old, 34.3% had dependents, 39.1% were employed, and 57.6% lived 30+ miles from the cancer clinic; 73.1% were non-Hispanic (NH) White and 22.4% NH Black; 4.5% reported another race/ethnicity. Over half (58.2%) agreed minimizing time spent on cancer-related activities was important to them; those employed were significantly more likely to agree (76.0% vs. 48.7%, p=0.03). Activities with the highest reported frustrations were the number of trips, time for care-related travel or paperwork, and wait time. Younger participants reported higher frustration with wait time (p=0.04) and time at the infusion center than older participants (p=0.03). Employed participants reported significant frustration with having to take time off work (p<0.0001), and those with dependents reported frustration needing to organize dependent care (p=0.01). Participants living 30+ miles from the cancer clinic reported greater frustrations with travel time (p=0.01), time needed for care coordination (p=0.01) and waiting for the provider (p=0.02). Some (10.6%) participants reported lacking reliable transportation and, among those, reported high frustration with the time needed for numerous activities, including finding transportation, paperwork, care coordination, and making appointments (all p<0.05).
Conclusions:
Cancer-related time demands are frustrating for many patients. Those employed, younger, with dependents, living further from the cancer clinic, and without reliable transportation experience greatest frustrations about time lost, underscoring the need to address these often unrecognized aspects of care.