Time-Related Burdens of Cancer Care

Abstract

Time spent at the beach is time well spent. Time spent at the hospital is time not well spent. Despite advances in cancer care, improvements in survival for some cancers have been modest. The limited time that patients have is extremely precious. Cancer treatments can be burdensome, often with serious side effects that lead to even more health care use. A long prevalent but more recently acknowledged toxicity of cancer treatments is time toxicity, the time impact of cancer treatments. 1-3 When discussing treatment options, including no cancer treatment, many people want to know where they will spend their time, not just how much time they are expected to live. Unfortunately, clinicians rarely have the information they need to have truly informed discussions with people about the time-related consequences of treatment decisions. With that background, the work by Dr Lim et al 4 describing the time spent in health care by people with pancreatic adenocarcinoma undergoing surgery is timely. They included 107 patients who underwent a curative-intent resection for pancreatic adenocar-cinoma at a single center in the Southeast United States. The median overall survival was 17.5 months, and patients on average had health care contact within the same health system on 11% of those days. These included a median of 5 days in preoperative care, 7 days in index surgery, and 14 days for total surgical care. Additionally, 30 days were spent for radiation therapy, and 53 days for systemic therapy (including all medical oncology, chemotherapy and infusion and related bloodwork and radiological visits, and emergency department visits and inpatient care). The median one-way travel time for a visit was 30 minutes. Lim et al found that people who were non-White race and had more comorbidities experienced greater time toxicity. Although important, these data significantly underestimate average time toxicity since the analyses did not include (1) cancer care at external facilities (less than half the patients' systemic therapy was at the same institution and captured), (2) nononcology-related care, and (3) patients who died within 30 days of surgery. If we assume 100 days of health care contact (for patients receiving trimodality therapy) over 500 days (17 months) of survival, a more realistic figure is 20% of days with oncology-related health care contact. It is unclear if facility-based hospice services were included in time spent in health care. Despite excluding people dying within 30 days of surgery, 12% of patients (one in eight) spent more than 10% of their time alive in just surgical care (largely related to surgical complications or readmissions). This Journal has recognized the importance of time toxicity and previously published a single-center report of patients with advanced pancreatic cancer receiving chemotherapy that estimated that 10% of living days (median 22 days of 231 days) were spent in outpatient care related to cancer therapy. 5 Less than half the time patients actually spent at the clinics was care time, with a significant time amount spent commuting or waiting. Dr Lim et al reported that 5% of total time alive was spent in health care (hours spent in health care or hours alive). We believe the 5% value, while mathematically accurate, underestimates the burden on patients. For a typical day, if we consider 12 hours as awake and functional time, a 6-hour visit to the infusion center for laboratories and a liter of fluid may only count as 50% loss of active time and 25% loss of total survival time. For the patient and even caregivers, this may be a 100% time loss (or even more than 100%) as they are not allowed to pursue other activities. Additionally, measures of time toxicity focusing only on health care contact do not take into account that a significant portion of time even at home may be spent ill, either because of or while recovering from cancer treatment. On the basis of two reports from different academic US centers, a conservative estimate is that patients with pancreatic cancer will spend 10%-20% of their living days receiving cancer treatment. 4,5 We recognize that pancreatic cancer is a highly morbid disease, and people often have complex health care needs related to the cancer itself, irrespective of whether and what cancer treatment is administered. We acknowledge that time spent in health care is often unavoidable and may add downstream time (and/or improve quality of life). Thus, for a diagnosis and a treatment approach, time spent in health care should ideally be interpreted in relation to (1) other treatment approaches, including no treatment when applicable, and (2) the survival and patient experience with that approach. Mixed-methods research, incorporating the patient and caregiver voice, should be used to develop meaningful measures of time toxicity. These should then be investigated and reported in clinical trials. With this information, we hope to have ASSOCIATED