Cancer Survivorship Care Plans, Financial Toxicity, and Financial Planning: Alleviating Financial Distress among Cancer Survivors

Abstract

Concomitant with the increasing use of cancer care plans has been an increasing awareness of the potential for oncology care to result in long-term financial burdens and financial toxicity. Cancer survivors can benefit from information on support and resources to help them navigate the challenges after acute cancer treatment. While cancer survivorship plans could be a vehicle for patients to receive information on how to mitigate financial toxicity, cancer survivorship plans have typically not dealt with the financial impact of cancer treatment or follow-up care. Embedding information into cancer survivorship plans on how to reduce or avoid financial toxicity presents an opportunity to address a highly prevalent patient need. Patient-centered qualitative studies are needed to assess the type, format and level of detail of the information provided.

Cancer survivorship care plans have been increasingly adopted in oncology [1]. The purpose of these plans, which are typically provided at the end of acute cancer therapy, is to help cancer survivors deal with the challenges associated with cancer survivorship [2]. Survivorship care plans summarize the patient’s treatment and possible late effects of cancer treatment and provide follow-up care plans.

In addition, there has been an increasing awareness of the potential for oncology care to result in long-term financial burdens [3] and financial toxicity [4]. About 28% to 48% of cancer survivors experience financial toxicity based upon monetary measures (covering out of pocket spending and percentage of out of pocket spending to income ratios) and (depending on study design, etc.) 16% to 73% experience financial toxicity based upon subjective measures [5]. However, cancer survivorship plans have typically not dealt with the financial impact of cancer treatment or follow-up care, but the inclusion of such information should be considered.

BACKGROUND

Cancer survivors may be vulnerable to out-of-pocket expenses due to unemployment, medical debt, and diminished consumer credit [6, 7]. This is especially true for women, young patients, racial and ethnic minorities, persons who have low income or low financial literacy, and those without health insurance [3, 5]. Patients who report cancer-related financial problems or high costs are more likely to forgo or delay prescription medications, mental health care and other medical care [5, 8]. Financial distress due to financial obligations, debt, and diminished wealth may interfere with the ability of cancer patients to cope with physical symptoms and follow-up care, and lead to poorer health-related quality of life and health outcomes and greater premature mortality [5, 9]. To address the financial needs of cancer survivors, there is a need for patient resources about financial considerations and managing the costs of cancer survivorship care.

Cancer survivorship plans can address patient’s needs by providing information on expected direct costs (e.g., copayments) and indirect costs (e.g., time off from work and the costs of transportation) of follow-up care, and providing resources to manage and minimize those costs. Studies have shown that the cascade of economic burden of cancer starts at diagnosis and leads to medical debt, financial declines, and appreciable out-of-pocket expenses long after the completion of acute oncology care [3, 10, 11]. This can occur due to lost productivity due to chronic adverse effects of cancer treatment, missed days from work due to illness, unemployment, and depletion of financial assets [7, 10]. Studies have shown that survivors can experience difficulty paying for medical bills and basic necessities such as utilities, mortgage, and food [11]. Patients may use retirement savings, borrow money, use credit, or mortgage their home to pay for the cost of oncology care [6, 10]. Cancer survivors’ risk of bankruptcy, which has been associated with increased risk of mortality [12], is 2.5 to 5 times higher than those with no cancer history [13]. Information for cancer survivors might include information on navigating conversations with employers, engaging policies for job protection, and credit and debt management.

Such information could be provided in cancer survivorship plans, similar to the information disseminated by ASCO and CancerCare to patients just beginning or receiving primary cancer care. Leading cancer organizations such as ASCO have developed materials for cancer patients to help them manage the cost of cancer care. This includes information for patients who are just starting cancer treatment such as questions to ask providers about costs, financial resources available to patients currently receiving cancer treatment, medication and treatment cost assistance (e.g., Partnership for Prescription assistance), help available from service organizations such as the American Cancer Society, housing assistance (e.g., Ronald McDonald House Charities), and basic information about health insurance and the Affordable Care Act [13]. In these patient resources, the focus is on acute oncology care. For example, information provided by CancerCare tells patients “Do not delay applying for benefits [e.g., Medicare and Medicaid] as it can take a long time for them to process” [14]. While these organizations are currently filling the gap for providing resources, these resources may be readily available to those who have the means to seek out the information while missing the most vulnerable, or those who have completed acute care.

Cancer survivorship plans also have the opportunity to provide information to patients at different stages of disease. Cancer survivors who have completed primary treatment often have very different financial concerns and difficulties than those of patients who are just beginning cancer treatment. For example, patients who have gone into debt or experienced diminished consumer credit would likely benefit from information about how to get out of debt or improve their credit. Patients with advanced cancer may be especially vulnerable to financial distress, due to the difficulties of generating or increasing income in the context of a debilitating disease and the high cost of targeted therapies [15]. Patients who have advanced-stage disease may also benefit from financial information that is not provided in existing patient resources about managing the cost of cancer. This might include where to access resources on financial management for end-of-life, setting up trusts, or estate planning.

Using cancer survivorship plans as a way to provide information on cost and financial resources to help with cost can also resolve a challenge that many providers cite. Several studies have suggested that medical providers do not always feel they have the appropriate information to discuss financial issues with patients [16, 17]. At institutions where cancer survivorship plans are based on a template, there could be (modifiable) language about expected costs for certain potential treatments, or adverse effects, as well as guidance on how to access institution-specific, publicly available, or other charitable assistance.

Embedding information into cancer survivorship plans on how to reduce or avoid financial toxicity presents an opportunity to address a highly prevalent patient need. Using survivorship care plans as vehicle for providing information on financial resources could help disseminate information on financial resources, reduce the likelihood of patients abandoning follow-up treatment due to cost, and reduce financial distress for cancer patients.