Improving the Process of Screening for Medical Financial Hardship in Oncology Practice

For the past several decades, advances in cancer treatment are accompanied by large and growing price tags (1), making cancer one of the most expensive conditions to treat in the United States (2). Along with cost of treatment, the economic burden of cancer to patients and their families is also growing, as health insurers require greater patient cost-sharing for health care, and increases in the number of cancer survivors without health insurance coverage (3). Medical financial hardship, including problems paying medical bills, distress, and forgoing care because of cost (4), is more common among adult cancer survivors than similar adults without a cancer history (5). Financial hardship adversely affects health by lowering quality of life (6) and increasing mortality risk (7). Financial hardship is most common among populations who have historically experienced challenges with accessing cancer care, including people who have low incomes, are uninsured/underinsured, or are racial/ethnic minorities (8), but financial hardship is becoming commonplace across the economic spectrum. Advances in expensive cancer treatments threaten to widen disparities in access to care based on the ability to pay. Thus, understanding how institutions and providers identify patients experiencing financial hardship and the strategies used to mitigate hardship and address patient needs are increasingly important.

Several surveys of cancer care providers have explored practices related to financial hardship screening, navigation, and counseling (9–11). For example, a survey of NCI comprehensive cancer centers found that nearly all reported some form of financial screening (10). Another survey of National Comprehensive Cancer Network (NCCN) member institutions, most of which are comprehensive cancer centers, found that the majority screen for financial hardship, commonly with the NCCN Distress Thermometer (9). In this issue of Cancer Epidemiology Biomarkers & Prevention, McLouth and colleagues describe practices for screening and addressing financial hardship in community oncology practices, where most patients with cancer are treated (12). Their study of 221 community oncology practices affiliated with the NCI Community Oncology Research Program (NCORP) reported that about three-quarters of them have a screening process for their patients and half have cancer-specific financial navigators. The methods of screening and availability of navigation services varied widely. Practices treating a larger proportion of minority patients were less likely to screen for financial concerns or have financial navigators or counselors than those practices treating fewer minority patients. Practices serving more patients with Medicaid coverage, the state and federal program for low-income populations, were more likely to conduct screening, but not any more likely to offer navigation services. This study identifies important disparities in financial hardship screening and/or navigation for practices serving larger minority or Medicaid-insured patients, who may be at greater risk of hardship and adverse outcomes. These findings also highlight the need to optimize and standardize financial hardship screening, counseling, and navigation, as well as efforts to mitigate hardship.

The most common methods for screening in NCORP practices appear to focus on whether patients have health insurance coverage. This approach is inadequate because even privately insured patients and survivors experience financial hardship (5). Insurance coverage can also be unstable, especially for adults with lower income, Medicaid coverage (13), or loss of employment-based private coverage. Reliance on the presence of insurance coverage as a screening mechanism will surely miss insured patients with hardship. This observation raises an important, but somewhat neglected topic—the difference between financial counseling and navigation. Specifically, financial counselors are often employed to minimize uncompensated care for providers and may not function as financial navigators whose primary goal is minimizing patients' financial hardship.

Some NCORP practices use screening tools like the NCCN distress thermometer, which has a list of practical problems, including a single item for “insurance/financial” problems. There are many other tools for identifying patients with financial hardship and/or social needs (14). Some were tailored for patients with cancer, such as the comprehensive score for financial toxicity (COST; ref. 15) and economic strain and resilience in cancer (ENRICh; ref. 16) instruments, whereas others, such as the protocol for responding to and assessing patient assets, risks, and experiences (PRAPARE) tool, are not condition specific, but developed for implementation in clinical practice in federally qualified health centers. Table 1 highlights selected features of these tools. Importantly, any tool for identifying medical financial hardship must be used as part of a process that begins with screening, connects patients with relevant services, and ensures that needs are met. Screening that identifies specific domains of medical financial hardship, material (e.g., problems paying medical bills), psychologic (e.g., distress), and/or behavioral (e.g., delaying or forgoing care because of cost), or other social needs, such as food insecurity or housing instability, can guide interventions. Low-income, minority, or uninsured/underinsured patients can be especially vulnerable if they receive treatment from institutions or facilities that conduct only financial screening without offering or referring for additional needed services.

In Table 2, we recommend key attributes of tools for medical financial hardship screening, such as ease of their use in clinical settings and their utility for guiding interventions. We also suggest inclusion of multiple measures of economic stability and social needs, such as health insurance coverage, employment, household income, and debt burden, as well as food insecurity, housing instability, transportation challenges, and social support. Multiple measures of medical financial hardship within material, psychologic, and behavioral domains are recommended. Patient clinical and demographic characteristics may be available from existing electronic health records (EHR) and could be used to prepopulate a screening tool, allowing for integration with clinical workflows. If these data are not available, they should be collected as part of screening.

How might a financial hardship screening tool be implemented in clinical practice to systematically identify patients with financial hardship and ensure that their needs are addressed? We suggest adapting the well-accepted “5′As” approach for successful intervention in tobacco cessation: ask, advise, assess, assist, and arrange (17). In this context, patients are asked whether they are experiencing medical financial hardship, and if so, navigators, social workers, or other providers advise and counsel, assess the current treatment plan, assist treatment plan adjustment or identify sources of financial assistance, and arrange for referrals for additional services (Fig. 1). This process must occur iteratively because factors underlying the risk of medical financial hardship (e.g., lack of insurance coverage, unemployment, low income, and social needs) can change throughout the course of treatment and survivorship care. Yet, even in NCCN member institutions, only 56% reported screening for financial hardship more than once (9). It is critical that this process is documented in the medical record to allow for ongoing assessment and evaluation (18). Further underscoring the need for repeated screening, a study conducted within NCORP practices found that one-quarter of newly diagnosed patients with metastatic colorectal cancer reported major financial hardship (defined as major debt, loans, selling or refinancing house, or 20% decline in income) within 3 months of receiving treatment and by 12 months, nearly three-quarters reported major financial hardship (19), demonstrating the cumulative risk of financial hardship as treatment progresses. Strikingly, more than 95% of these patients were insured. Most of these patients would not have been identified by financial hardship screening practices that either rely on whether patients have health insurance coverage or on a one-time hardship screening at treatment initiation.

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Figure 1.

Model for implementation of financial screening in clinical practice. Figure contains a model for implementation of financial screening adapted from the “5′As” approach for successful intervention in tobacco cessation: ask, advise, assess, assist, and arrange (17). In this context, patients are asked whether they are experiencing medical financial hardship, and if so, navigators, social workers, or providers advice and counsel, assess the current treatment plan, assist treatment plan adjustment or identify sources of financial assistance, and arrange for referrals for additional services.

McLouth and colleagues discussed the need for stakeholder engagement from patients and informal caregivers to providers and policy makers, in efforts to identify and address patient medical financial hardship (12). They also acknowledged state and federal policies as central to these efforts. We wholeheartedly agree. In the absence of state and federal policies that ensure comprehensive health insurance coverage options and equitable access to affordable, timely, and effective care, patients, their families, and their treating institutions are left on their own to minimize financial burden. Interventions focused on patient navigation may be best when partnered with multi-level interventions that include policy changes. Such interventions must be both scalable and sustainable in routine practice. We recommend that evaluations of interventions to mitigate financial hardship collect detailed information about the cost, as well as budget impact (20) from the perspective of a practice or health system to inform questions of sustainability. Finally, any solutions must first focus on practices serving minority and underserved populations, who were less likely to screen for medical financial hardship and have cancer-specific navigation.

Cancer is frequently an unexpected diagnosis and its treatment can result in thousands of dollars in out-of-pocket expenses and medical debt for patients and their families, even if they have health insurance coverage (21). In 2017, nearly 40% of American families reported that they could not cover an unexpected expense of $400 (22). The COVID-19 pandemic, which led to widespread unemployment and loss of not only income, but access to employer-sponsored health insurance coverage, has exacerbated the economic challenges that many families face. We expect medical financial hardship to become even more prevalent in 2021 and beyond, especially because people who are racial or ethnic minorities, uninsured or underinsured, or living in poverty have disproportionately experienced adverse effects of the COVID-19 pandemic. Efforts to identify and address medical financial hardship are more urgent than ever, for state and federal policymakers and all institutions treating patients with cancer, to ensure that all have an equitable opportunity to treat and survive cancer.

Authors' Disclosures

Y.-C.T. Shih reports personal fees from Pfizer and AstraZeneca outside the submitted work. No disclosures were reported by the other authors.