The intersecting time, administrative, and financial burdens of a cancer diagnosis

Abstract

Cancer and its care create substantial financial, time, and administrative burdens both for patients and their loved ones. Although cancer-related financial burdens have been well documented in the past decade, time and administrative burdens of cancer care have received substantially less attention. We define time burdens as the burden patients and caregivers experience due to the time needed to complete cancer-related treatment and tasks that take away from other life responsibilities. Relatedly, we conceptualize administrative burdens as those burdens patients and caregivers experience due to cancer-related, resource-consuming bureaucratic and logistical tasks. Finally, financial hardship can be conceptualized as problems patients experience related to the cost of medical care. These burdens do not exist in isolation; time, administrative, and financial burdens intersect with and compound each other. Currently, we have limited evidence-based measures on the objective (eg, scheduling time, transportation, wait time) and subjective (eg, mental, emotional and physical stress) measures of time and administrative burden. We have even more limited evidence of the risk factors for and outcomes from increased time and administrative burdens, and how they differentially impact populations across social and demographic groups. In this commentary, we present a research agenda to map, measure, evaluate, and mitigate the time, administrative, and financial burdens of cancer and its care.

“Today was a good day. I only spent two hours driving to and waiting for medical appointments, another hour coordinating care and a final hour on the phone with the insurance company for a denied claim. While exhausting, I know it’s necessary so my dad can get the best care for his glioblastoma.” ∼ H. Parsons, November 2021

As a team of cancer researchers with firsthand experience as cancer caregivers, clinicians, and advocates, we see every day the toll that a cancer diagnosis has on patients and their families. Significant innovation in cancer treatment has led to improved survival and an estimated 18 million cancer survivors in the United States.¹ A cancer diagnosis also creates substantial financial, time, and administrative burdens for individuals that only grow over time. Cancer-related financial burdens for patients and caregivers have been well documented in the past decade, with hardships including cancer-related costs, distress and worry about medical bills, and delaying or forgoing medical care because of costs.² In contrast, there is substantially less recognition of and focus on the time and administrative burdens of cancer care; therefore, these burdens are rarely considered in the provision of cancer and survivorship care. As author Elizabeth Emens wrote, it is “the invisible … work that steals our time… . [I]t’s the kind of work that managers and secretaries get paid in an office to do, but that we all do invisibly and for free.”³ These aspects of time and administrative coordination, as Ms Emens describes, are required in daily life, even when one is healthy, but are exponentially heavier after a cancer diagnosis, with patients and caregivers quickly needing to become experts in navigating a complicated system completely foreign to many. In prior work,⁴ we began a dialogue highlighting the growing burden of time toxicity, identifying opportunities to create simple, purposeful measures (eg, number of health-care contact days) to aid in communication about decision making between patients and health-care professionals. We increasingly recognize the need, however, to acknowledge that these burdens do not exist in isolation; time, administrative, and financial burdens intersect with and compound each other. Further, measurement of these burdens requires a more nuanced understanding of the unique context and challenges individuals experience. In this expanded context, we present a research agenda to map, measure, evaluate, and mitigate the time, administrative, and financial burdens of cancer and its care.

Definitions of time, administrative, and financial burdens

We define time burdens as the burden patients and caregivers experience because of the time needed to complete cancer-related treatment and tasks that take away from other life responsibilities, such as driving to, waiting for, and attending medical appointments. Relatedly, we conceptualize administrative burdens as those burdens patients and caregivers experience because of cancer-related, resource-consuming bureaucratic and logistical tasks (eg, making appointments, completing prior authorization forms, or applying for medical leave [if even available]). Finally, financial hardship can be conceptualized as problems patients experience related to the cost of medical care,⁵ which may encompass domains such as material conditions, psychological response, and coping behaviors.² On their own, each of these burdens may create substantial stress that affects the health, well-being, and outcomes for individuals with cancer and their families; frequently, however, these burdens intersect to compound the overall burden.

Mapping the intersection between time, administrative, and financial burdens

We provide illustrative examples of individual and intersecting time, administrative, and financial burdens in Figure 1. Each of these burdens has components that may more clearly fall within a single domain. For example, direct travel costs, such as gas, parking, food, or lodging required to attend appointments, can create substantial financial burdens; however, these particular financial burdens may not create overt time or administrative burdens. Similarly, although waiting for an appointment may result in substantial time burdens for individuals, this burden may not necessarily result in clear financial or administrative burdens. Many tasks required to successfully navigate and complete cancer care, however, create intersecting burdens. For example, handling insurance-related issues may create administrative burdens through required paperwork, financial burdens through noncovered benefits, and time burdens through multiple calls and meetings to resolve insurance issues. Recognizing the unique aspect of each burden and how the burdens intersect is critical for measuring and intervening to reduce these burdens.

Figure 1.

Examples of overlapping time, administrative, and financial tasks.

We must, however, also consider the unique context and needs of individuals to provide a broader picture of how certain tasks may be more or less burdensome in specific settings. Consider an individual with cancer who has young children. To attend a medical appointment to receive their recommended cancer care, this individual will likely need to take time off of work (either paid or unpaid) while arranging for childcare during their appointment. Making these arrangements requires physical and mental energy to plan and coordinate the appointment and childcare as well as time to set up, then attend, appointments. These burdens are coupled with potential additional costs (eg, babysitters, extended day care) and lost wages. Others may require assistance from caregivers to coordinate care, drive to appointments, or navigate prior authorizations and insurance denials, creating additional time and administrative burdens for a family⁶ when individuals may already be experiencing challenges with fatigue and concentration caused by cancer treatment.⁷ These indirect burdens can be substantial but are hardly ever measured. Furthermore, the resources caregivers invest into providing labor are implicitly taken for granted in a health-care system that heavily relies on the voluntarily provided and unpaid work of caregivers.⁸

Conceptualizing and measuring the intersection among time, administrative, and financial burdens

Conceptualization of some of these burdens is not new; “treatment burden” in chronic disease management has been described and characterized. Treatment burden is a multidimensional concept, including physical, financial, and psychosocial demands related to the management of chronic diseases (eg, diabetes), that includes subjective and objective burdens.⁹ Theories such as the Burden of Treatment Theory¹⁰ and Cumulative Complexity Model¹¹ have highlighted the complexity of the treatment burden concept. Accordingly, instruments such as the Treatment Burden Questionnaire¹² and the Patient Experience with Treatment and Self-management¹³ questionnaire have been developed and validated to collect self-reported, recall-based data on various aspects of treatment burden, including patient workload and the negative impact of that workload on patient well-being. Our goal here is to highlight the complexities of a few components of “treatment burden”—time, administrative, and financial burdens—in oncology specifically, describe how they intersect and compound each other, and outline gaps in knowledge that hinder design and broad implementation of effective interventions. Compared with many other chronic diseases, cancer adds a dimension of a perceived imminent threat to patients’ lives. Given the subjective urgency of this threat, it is possible that there is a higher threshold with regard to the time and administrative burdens patients and clinicians find acceptable compared with other chronic diseases. In addition, cancer is often approached from a series of implicitly condensed timelines. Treatments are typically considered in terms of a months-long commitment with a finite endpoint, at which point treatment response and other factors contribute to shared decision making about next steps. The treatment burden considered acceptable over 1 treatment cycle may be higher than what would be considered acceptable long term. Changes in cancer treatments, however, have substantially prolonged life such that short-term, treatment burden–intensive time intervals often become years or the remainder of patients’ lives. In contrast, many other chronic diseases, such as diabetes and hypertension, are approached as lifelong conditions, with more stable and predictable treatment burden patterns. Together, the death threat from cancer and the conceptualization of cancer treatment as occurring in cycles, each of which have an end, may have resulted in a lack of serious efforts to address treatment burdens in the context of cancer compared with other chronic diseases.

Researchers focused on cancer care delivery and outcomes lack critical measures of the objective and subjective time and administrative burdens of cancer care that individuals with cancer and their caregivers face. Objective measures of time and administrative burdens to date have relied heavily on data from electronic health records and administrative claims, which capture medical and pharmacy visits only but include limited information about other objective (eg, scheduling time, transportation, wait time) and subjective (eg, mental, emotional, and physical stress) measures of burden from these activities that are necessary to gain a complete picture of the impact.^14-16 The additional challenge of measuring time and administrative burdens is that objectively similar activities may be more or less subjectively burdensome to different individuals. For example, in-person medical visits to receive treatment or review test results may be necessary time commitments for most patients. For some, such visits may enhance quality of life through reassurance from their oncologist or through increased social support from connecting with nurses or other patients during a chemotherapy infusion. For others, however, such visits may increase stress in their life, with the subjective burden of these visits depending on the social and demographic contexts of individuals¹⁵; those patients who have competing time demands (eg, work responsibilities, dependents, lack of paid leave) tend to experience greater impacts from this burden.

Because few studies have measured the level and consequences of the administrative tasks and time needed for cancer care, risk factors for these burdens have not been extensively studied. More is known about the contexts that aggravate financial burdens, including low incomes and wealth; being younger, female, a person of color, and single; and having dependents.^17,18 Given the interdependencies between financial, time, and administrative burdens, we hypothesize that at least some of these risk factors are shared across these 3 domains (Figure 2). Marginalized identities (due to one’s race and ethnicity, gender identity, or sexual orientation) are characterized by unique experiences, with evidence that discrimination (structural, interpersonal, and internalized), lower socioeconomic status, and wear-and-tear stressors over the life course reduce resiliency, confidence, and support.^19,20 Lower health and insurance literacy, which have been associated with increased medical care avoidance and reduced financial well-being,²¹ can also decrease the capacity of an individual to successfully take on variety of administrative and time burdens. Additional antecedents may include rural residency, which can increase travel time to health-care facilities,²² financial and energy costs of travel, and reduced access to local clinical and support infrastructure.^23-25 Partner status and having minor or adult dependents determine family obligations, commitments, income relative to competing financial needs, and whether one is in a position that allows for a focus on one’s own needs.¹⁸ Further, work obligations directly affect financial and time outcomes. In the United States, health insurance is often tied to employment, potentially creating situations where individuals have to work to keep their insurance while potentially being unable to work at full capacity because of their disease.^26-28 Finally, clinical factors such as cancer type and stage shape existential concerns (eg, fear of dying), time and money required for care, symptoms and side effects, and available peer support. These and other potential predisposing factors are not equitably distributed in the population, and their intersections and interactions likely determine subjective cumulative burden.²⁹

Figure 2.

Predisposing factors and impacts on the time, administrative, and financial burdens of cancer care.

The immediate and long-term outcomes of these time and administrative burdens are also not fully understood. When assessing outcomes, especially in the context of receipt of cancer treatments, the oncology discipline has typically focused on measuring and reporting long-term clinical outcomes such as progression-free survival and overall survival. Relatedly, when assessing the quality of cancer care, the focus has been on process measures related to receipt of cancer treatments, such as time to treatment initiation, receipt of guideline-recommended treatment, and adherence to cancer treatment.^30,31 Research on financial burdens of cancer has shown that additional outcomes include foregone and skipped clinical care and nonadherence to prescription medications that could result in worse oncological outcomes; it is also possible that these same outcomes are a consequence of time and administrative burdens. As examples, among more than 38 000 Medicare or commercial insurance adult enrollees with cancer, even small copays of less than $10 were associated with a 10% rate of prescription abandonment of cancer drugs, with higher copays also associated with delayed treatment initiation.³² Among younger insured adults, one-third reported delayed or foregone care because of an administrative task, such as “obtaining authorization from your health plan for health care or prescription drugs.”³³ Importantly, in addition to the more objective consequences such as delayed or foregone care and objective financial ruin (eg, bankruptcy)—which are also related to each other³⁴—higher financial burdens are associated with worse psychosocial outcomes, including health-related quality of life and mental health.³⁵ Based on these studies and related literature, we hypothesize that increased time and administrative burden may result in higher immediate and downstream impacts, such as lower levels of self-care, higher direct and opportunity costs, poorer psychosocial and clinical outcomes, and coping mechanisms to avoid these burdens. Further research is needed, however, to describe and quantify these outcomes.

Intervening to measure and mitigate time, administrative, and financial burdens

To advance our understanding of the level and impact of time and administrative burdens, the field requires critical investment in research into measurement of these burdens and interventions to reduce them. Specifically, we must build a portfolio of patient-centered objective and subjective measures of time and administrative burden for individuals with cancer and their caregivers. One recent example is an ongoing study assessing a novel automated sensor technology to comprehensively and objectively measure cancer-related time use in survivors of breast and ovarian cancer.³⁶ Other opportunities include use of existing administrative and electronic health record data to quantify where opportunities exist to reduce duplication, redundancy, and inefficiencies in scheduling and time commitments for individuals (eg, scheduling a blood draw 1 day, a computed tomography scan the next, and a follow-up appointment with the oncologist at the end of the week) and in-depth qualitative studies with patients who have cancer to understand the subjective impact of time and administrative cancer burdens to develop comprehensive measures in this space. At the heart of these measures, we must include the patient’s voice and capture the subjective burdens of time and administrative requirements as well as how they vary by patient social and demographic characteristics.

As we develop measures of time and administrative burden, we must also look toward interventions to reduce their impact. These interventions will most likely involve a combination of individual, health-care system, and policy-level solutions. As a starting place, we recommend implementing solutions known to streamline care and help patients navigate the health-care system, including access to care coordinators, social workers, and social service organizations.^37,38 Recent commitments from leading health insurers and oncology professionals to provide and cover navigation services make comprehensively implementing patient navigation across the cancer care continuum more realistic.³⁹ Creative solutions are also warranted, including developing and testing nonmedical services and supports that directly address known stressors and burdens for patients. Recent examples include the Guaranteed Income and Financial Treatment trial,⁴⁰ which provided unconditional cash transfers to individuals who have low incomes after a cancer diagnosis, as well as an ongoing pilot study testing the impact of an early legal care intervention on financial and time burdens.⁴¹ On-site childcare and access to affordable or free transportation and lodging remain important additional solutions for evaluation.^42-44 A separate intervention approach might be to facilitate meaningful time uses for patients during unavoidable cancer-related tasks. For example, infusion visits could be coupled with opportunities to connect with other patients with cancer for peer support or to participate in physical therapy or exercise.

We must do more, however, to identify and implement system-level solutions that address the biggest time burdens. Two key examples include requirements for prior authorizations for cancer care and enrollment processes for state and federal insurance and disability programs (eg, Medicaid, Social Security Disability Insurance) that create barriers to accessing key financial and medical benefits for low-income and disabled individuals (including many people with terminal cancer).⁴⁵ One recent study found that 69% of patients with cancer reported that a prior authorization resulted in delays in care, with 20% of patients reporting spending 11 or more hours dealing with prior authorization–related issues.⁴⁶ Recent announcements by large private insurers that they would eliminate prior authorization requirements for several common, non–cancer-related tests and procedures⁴⁷ provide a path forward for discussions to further reduce these requirements in oncology. Innovative approaches to reduce administrative burdens for state and federal insurance and disability programs, however, are more limited. Yet, these programs are focused on supporting the financial and medical well-being of the most vulnerable individuals in our population⁴⁸ who already have fewer financial resources, medical literacy, and support to complete the application process.⁴⁹ The Social Security website currently estimates that once an application has been submitted for disability benefits, it takes 6-8 months for an initial decision,⁵⁰ with 1 estimate suggesting that more than 67% of applications are denied.⁵¹ The Medicaid program also presents unique challenges: As a state-federal partnership, each state sets its own unique application process and eligibility requirements, which can create hurdles to enroll and remain enrolled during cancer treatment, particularly for people who must cross state lines to access specialized cancer care.^48,52 Exploring opportunities to streamline the application and re-enrollment process for these programs presents a path to intervening to reduce time and administrative burdens for our most vulnerable populations. Although these highlighted possibilities for intervention have focused on potential program and policy interventions to reduce burdens on patients and caregivers, we must also acknowledge the critical need to extend our evaluation of measures and interventions to oncology care team members, who continue to experience the burden of an increasingly complex health-care system, with substantial documentation and prior authorization burdens,^53,54 among other challenges.

For the more than 18 million cancer survivors in the US today, a cancer diagnosis and its associated treatment can result in substantial time, administrative, and financial demands. Our goal here was not to comprehensively describe these burdens but rather to highlight their existence and the need to understand their complexities and how they intersect. We present a call to action to bolster research needed to accurately and feasibly measure these burdens, identify barriers and facilitators, describe outcomes, and develop effective mitigation strategies.

Author contributions

Helen M. Parsons, PhD, MPH (Conceptualization; Writing – original draft), Arjun Gupta, MD (Conceptualization; Writing – original draft), Patricia Jewett, PhD (Conceptualization; Visualization; Writing – original draft), Rachel Vogel, PhD (Conceptualization; Visualization; Writing – original draft).

Funding

H.M.P., A.G., and R.I.V. are supported in part by grant P30 CA77598 from the National Institutes of Health (Masonic Cancer Center). R.I.V., P.J., and H.M.P. received funding from 1R01CA277714-01.

Conflicts of interest

The authors have no conflicts of interest to disclose.

Data availability

Not applicable.