The unequal burden of time toxicity

Abstract

Many cancer treatments impose large time investments on patients. We have termed these time burdens ‘time toxicity’ and have urged their consideration as adverse events of treatment. Here, we discuss time toxicity measures while considering inequitable access to healthcare, time as a resource, and patterns of time toxicity.

Time toxicity in cancer care

Many cancer treatments impose large time investments on patients and their care partners despite only modest survival benefits. Patients spend hours in clinics, infusion centers, and waiting rooms; in cars, buses, and parking ramps; and on frustrating calls with insurance companies to confirm coverage and with pharmacies to transfer prescriptions [1]. They spend nights in emergency departments and in-patient floors managing treatment complications. In some cases, the time costs associated with a treatment may even offset its marginal survival gains [2]. These time burdens, under-recognized in clinical care and oncology conversations for decades, have recently received more attention [2,3]. We intentionally termed these time burdens for cancer patients as ‘time toxicity’ to encourage the field of oncology to consider them an adverse event of treatment. Our proposed measure of time toxicity – ‘days with physical healthcare system contact’ – considers a day with any amount of physical healthcare system interaction as a time toxic day [2]. By contrast, ‘home days’ are those without healthcare system contact. Our vision for this concept is for clinical trials to report time toxicity alongside traditional survival endpoints to aid patient decision-making on whether to pursue cancer treatments with marginal survival benefits. While our chosen term implies that these days are wholly negative, it is important to acknowledge that these days also represent access to healthcare and therefore require a nuanced interpretation, especially when analyzed retrospectively. In this piece, we review time toxicity in cancer care while considering inequitable access to healthcare, time as a resource, and patterns of time toxicity (Figure 1).

Figure 1.

The unequal burden of time toxicity due to differences in care access, time poverty, and patterns of time toxicity.

Access to healthcare

While the proposed time toxicity metric is pragmatic (dichotomous, easily calculated, and objective), we must be cautious interpreting less time toxicity as universally positive. We initially conceptualized the metric to enable comparisons in a controlled, randomized setting [2]. However, in routine clinical care, it is difficult to differentiate excess healthcare contact days related to the toxicity of a treatment and/or inefficiencies of the health system, with required and necessary cancer care. A patient or population without access to appropriate cancer management (e.g., resection for early-stage colon cancer, hospitalization for symptom crisis, and so forth) would be labeled as having less time toxicity, but this is clearly not good care.

Similarly, home days would ideally represent days that patients do not require care, not days they cannot access care. Ideally, we would be able to tell the difference, but we largely cannot, especially retrospectively. Barriers and disparities in access to quality care abound, including delays in treatment. For example, among patients with colorectal cancer in the USA, the time to treatment after initial diagnosis is significantly longer for patients in racial-ethnic minority groups [4]. This initial time without treatment due to inferior access to healthcare is inherently harmful, but would be labeled as non-time toxic if patients did not have to seek medical care for uncontrolled symptoms. Rural patients with stage III colon cancer living more than 250 miles away from their oncologist have decreased odds of receiving adjuvant chemotherapy [5]. This is especially concerning with healthcare facilities moving out of low-income areas [6]. Without accounting for access to healthcare, such data might indicate that disadvantaged populations have less time toxicity, and thus, better care – that is untrue.

Time as a resource

Like all valued resources such as money, property, and education, time is unequally distributed. Similar in concept to financial poverty, a subset of patients live in time poverty, with less leisure time [7]. For some patients, the same 3 h spent on a clinic visit might represent true ‘time toxicity’ compared with other patients with more discretionary time. As examples, women, patients in racial/ethnic minority groups, patients from lower socioeconomic status, and those living in resource deserts are more likely to be ‘time poor’. Women, in addition to increasing roles in the workforce, still have a higher burden of uncompensated work, spending on average 14.2 h per week on tasks like caregiving and household chores, compared with 8.6 h on average for men [8]. Black patients spend more time on the same everyday activities, such as voting, waiting for cars to stop at a crosswalk, and finding an apartment [9]. Patients with less financial means cannot afford time-saving resources such as reliable childcare and access to a vehicle [7]. Medicare beneficiaries who have lower income or were dually eligible for Medicaid more often report trouble getting places like the doctor’s office [10].

How exactly patients spend time receiving healthcare also varies: Black and Hispanic patients spent significantly more time attending clinic appointments (approximately 150 min) compared with White patients (approximately 120 min) [11]. This extra time is largely spent in travel and administrative tasks (e.g., waiting, paperwork); actual face-to-face time with the clinician is similar [11]. Thus, the same objective time costs might impose amplified burdens on disadvantaged groups. It is important to discuss what a time toxic day might mean to an individual patient to personalize care.

Patterns of time toxicity

The current measure of time toxicity does not consider the length of healthcare contact (minutes and hours spent) in a day; we designed the measure as such because seemingly short appointments can turn into all-day affairs [3]. It is obvious, however, that not all healthcare days are equally toxic. A 15-min pharmacy visit to pick up a medication that is ready is fundamentally different from an unscheduled urgent care visit for intractable vomiting, that leads to an emergency room transfer, and eventual hospitalization. Even if total time toxicity was similar across populations, patterns and sources of time toxicity, and thus their quality, may differ. For example, consider two patients, both with advanced-stage pancreatic cancer with 15% time toxicity (approximately one in 7 days is time toxic) [3]. The first patient is well resourced and lives a mile from the cancer center; they visit the infusion clinic once a week for planned intravenous fluids to maintain hydration and thus, preserve acceptable quality of life. Another patient is unable to come in regularly due to lack of transportation and rural residence – they suffer with dehydration at home, feel poorly, and ultimately require a 4-day hospitalization after 4 weeks. Both will have the same objective time toxicity (4 days over 4 weeks), but their experiences, sources, and trajectories will differ. Patterns of time toxicity can be particularly disparate near end of life. Black patients are more likely to receive unnecessary aggressive end-of-life care [12]. A single overall time toxicity number may not capture this nuance, and can thus be misleading by itself.

Next steps

Ongoing and future work in time toxicity must consider health equity. Researchers and clinicians should interpret findings with caution, with particular focus on how access to care, leisure time, and patterns of time toxicity may affect true time-related burdens. Broad qualitative work, without making assumptions, incorporating patient and cultural perspectives, should form a solid foundation on which the time toxicity concept, and eventual solutions, should be built. As an example, care is increasingly shifted out of facilities and into private residences, in ‘hospital at home’ formats due to payment and innovation reform with the well-intentioned aim of decreasing time toxicityⁱ. While aspirational, this may amplify burdens for unprepared patients and care partners. Similarly, telehealth can theoretically decrease time toxicity [13]. However, disparities in access to digital technology may sober true benefit [14]. While healthcare contact can sometimes be identified and marked as clearly essential or nonessential, some patients may derive subjective benefit from visits – for example, reassurance and education from nursing and decreased loneliness [15]. It is important to note that well-intentioned interventions to decrease time toxicity, like anything else in healthcare, can worsen disparities, emphasizing the importance of analyzing new strategies through a health equity lens.

Concluding remarks

The time toxicity concept is increasingly gaining traction in the oncology community and the lay press. In measuring, interpreting, and communicating time toxicity in clinical care, oncologists need to understand the relation to healthcare access, the experience of time as a resource, and imbalanced patterns of time toxicity.