Financial Toxicity and Cancer Treatment (PDQ®)—Health Professional Version - National Cancer Institute

Financial Toxicity and Cancer Treatment (PDQ®)–Health Professional Version

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Financial Toxicity Associated with Cancer Care—Background and Prevalence

Introduction

A number of studies demonstrate that individuals with cancer are at higher risk of experiencing financial difficulty than are individuals without cancer.[1-5] This summary reviews the extant literature onfinancial toxicity among American cancer patients and survivors.

Background

Historically, cancer has been one of the most costly medical conditions to treat in the United States.[1] Compared to a decade ago, cancer patients are receiving increasingly expensive chemotherapy and biologics, both alone and in combination.[2,3] The use of expensive supportive agents and hematopoietic growth factors has also increased.[2] The cost of newly introduced chemotherapy and supportive drug-based treatments is growing,[2-4] and prices higher than $10,000 a month for individual drugs and biologic agents are common.

At the same time, commercial insurers in the United States have increasingly shifted medical care costs to patients through higher premiums, deductibles, and coinsurance and copayment rates. The 2014 Commonwealth Fund Biennial Health Insurance Survey indicated that 23% of insured adults aged 19 to 64 years experienced out-of-pocket costs equal to 10% or more of household income.[6] Infused chemotherapy and supportive agents covered under patients’ medical benefits entail high out-of-pocket costs; these costs also appear to be growing as care shifts from the community into hospital-based outpatient departments.

Oral cancer drug–based treatments are frequently covered under patient pharmacy benefits’ specialty tier, requiring high coinsurance that patients pay out of pocket. High cost-sharing plans, including tiered outpatient prescription formularies (i.e., copays that escalate depending on whether the drug is generic or branded, and by price) may be particularly troublesome for patients with cancer who are prescribed expensive oral chemotherapeutics. The proportion of health care plans with multi-tiered prescription formularies, in which expensive oral specialty drugs are associated with the highest cost sharing, increased from 3% in 2004 to nearly 25% in 2013.[7] These trends in treatment cost and changes in insurance coverage suggest that financial distress associated with acute and chronic cancer is highly prevalent, even among persons with health insurance.

When compared with individuals without a cancer history, cancer survivors have higher out-of-pocket costs, even many years after initial diagnosis,[5,8-10] reflecting ongoing cancer care and care for any late or lasting treatment effects. In addition, cancer survivors are more likely to report being unable to work because of their health,[5,8-10] including more missed work days or additional days spent in bed because of poor health.[5,8-10] Limited ability to work may also reduce employment-based health insurance options and resources to pay for medical care, further magnifying the financial impact of cancer. Combined, these factors contribute to the phenomenon of adverse financial effects of cancer treatment.

A number of terms have been used to describe the financial impact of cancer, its treatment, and lasting effects of treatment, including financial distress, financial stress,financial hardship, financial toxicity, financial burden, economic burden, and economic hardship.[11,12]

Etiology and Risk Factors

The interplay between cancer and financial distress is complex and related to a number of factors, as shown in Figure 1.[13,14]

Flow chart showing the conceptual framework relating severe illness, treatment choice, and health and financial outcomes. — Figure 1. Conceptual framework relating severe illness, treatment choice, and health and financial outcomes. Credit: Scott Ramsey, MD, PhD.

A number of factors in a household at the time a member of that household is diagnosed with cancer will influence the vulnerability to financial distress. The risk of severe distress and the period between illness and these outcomes will be influenced by the following factors:

Wage-earner status of the affected household member (primary, secondary, etc.).
Pre-illness debt load.
Assets.
Illness-associated costs.
The influence of the illness and its treatment on ability to work.
The presence and terms of the health and disability insurance of the patient.
Incomes of others in the household.

At the time of cancer diagnosis, several factors that determine the long-range risk of financial hardship include the following:

The general health and noncancer comorbidities of the patient.
Assets.
Existing debt.
Household income.
A household with income from other sources, such as a spouse or family member who works outside the home.

Components of these measures include material conditions that arise from increased out-of-pocket expenses, lower income from the inability to work, and psychological response to increased household expenses and reduced income.[11,12]

The material conditions of patients and their families that may be adversely affected by a cancer diagnosis and treatment are typically measured as follows:[11,12]

Out-of-pocket medical costs.
Out-of-pocket costs as a percentage of income.
Reduction in income and assets.
Medical debt.
Trouble paying medical bills and for necessities (e.g., housing, food).
Bankruptcy.

In addition, a patient's psychological response to increased financial burden associated with a cancer diagnosis and treatment is typically measured as financial stress, distress, orworry.[11,12]

Prevalence

A number of studies have measured components of at least one aspect of financial hardship,[5,10,6,7,15-18,18-27] although methods and measures vary widely, limiting comparisons across studies. In addition, most studies that have evaluated financial hardship were conducted at single institutions, which are geographically defined, or in other selected samples of cancer survivors. Nationally representative estimates of financial hardship from survey data are generally reported for all cancer survivors, and scant information is available by cancer site or stage of disease at diagnosis. Household surveys generally include few newly diagnosed cancer patients, those with rare cancers, or those with projected short-term survival. Because data about financial hardship are not routinely collected and can be difficult to measure, few studies have reported incidence of financial hardship among the newly diagnosed or newly treated.

The following sections describe the prevalence of specific measures of financial hardship, including out-of-pocket costs, productivity loss, asset depletion and medical debt, bankruptcy, and financial distress and worry.

Prevalence of high out-of-pocket costs

Out-of-pocket costs are one of the most common measures of financial hardship and are the amounts that patients pay directly for their medical care, including insurance copayments, coinsurance, and deductibles for prescription and nonprescription medications, hospitalizations, outpatient services, and other types of medical care. Cancer survivors generally report higher out-of-pocket expenditures than individuals without a cancer history.[5,8,9,15,28] In a nationally representative sample, recently diagnosed cancer survivors aged 18 to 64 years reported $1,107 annually in out-of-pocket spending, compared with $747 annually for previously diagnosed cancer survivors and $617 annually for those without a cancer history (all in 2010 dollars).[8]

In a study of long-term breast cancer survivors, 18% paid $2,100 to less than $5,000 in out-of-pocket expenses, and 17% paid more than $5,000.[20] Cancer survivors are also more likely to report high out-of-pocket burden (i.e., annual out-of-pocket spending on health care >20% of annual income) than individuals without a cancer history,[10,17,18] although estimates vary widely, reflecting differences in population characteristics.

In a study conducted using the nationally representative Medical Expenditure Panel Survey (MEPS), 4.3% of cancer survivors aged 18 to 64 years reported high out-of-pocket burden compared with 3.4% in those without a cancer history.[10] In a study using the nationally representative Medicare Current Beneficiary Survey, 28% of cancer survivors reported high out-of-pocket burden compared with 16% of those without a cancer history.[18] Approximately 84% of the Medicare beneficiaries were aged 65 years and older.

Prevalence of productivity loss

Productivity loss is typically measured as the inability to work or pursue usual activities, days lost from work or disability days, reduction in work hours, and days spent in bed. Productivity loss may be quantified directly from employment data [19,26] or estimated with median wages.[5,8,9] Several studies have used data from the nationally representative MEPS. One analysis reported that, among the employed, those receiving cancer care missed 22.3 more workdays per year than individuals without any cancer treatment.[29] An estimated productivity loss for adult survivors of adolescent and young adult cancers was $4,564 compared with $2,314 for adults without a cancer history (in 2010 dollars).[9] Employed cancer survivors reported cancer interfered with physical tasks (25%) and mental tasks (14%) required by their jobs.[5]

Prevalence of asset depletion and medical debt

A number of studies have reported the prevalence of asset depletion and medical debt for cancer survivors, although this information is rarely reported in relation to individuals without a cancer history or before and after a cancer diagnosis. Further, most estimates are based on self-report, and little validation work has been conducted.

Studies of cancer survivors have suggested that between 33% and 80% of the survivors have used savings to finance medical expenses,[15,20,23,25,27] and between 2% and 34% have borrowed money to pay for their care or have medical debt.[7,16,20,21,23] In a study of colon cancer survivors in Washington state, the mean debt among the survivors with debt was $26,860 (in 2009 dollars).[23] To cope with expenses, cancer survivors have reported decreasing spending on leisure activities, food, clothing, and utilities; selling stocks, investments, possessions, or property; and changing housing.[20,23,25,27,29]

Incidence and prevalence of bankruptcy

One of the few studies to measure the incidence of financial hardship reported that 1.7% of cancer survivors filed for bankruptcy in the 5 years after diagnosis.[22] Cancer survivors were 2.7 times more likely to file for bankruptcy than individuals without a cancer history.[22] Others have reported a prevalence of bankruptcy ranging from 1.2% to 3% of the study populations of cancer survivors.[15,16,21,30]

Prevalence of financial stress, distress, or worry

Several studies have found a prevalence of financial stress and worry about paying medical bills for cancer ranging from 22.5% in a nationally representative sample [16] to 64% in a sample of working-age cancer survivors.[6,16] About 45% of cancer survivors recruited from a single outpatient oncology clinic study reported wage concerns.[6] Patients and their families may also experience difficulty and stress in interpreting complex medical bills, although this stress is less studied.

Prevalence of financial hardship as a composite measure

Several studies combine multiple components of financial hardship using summary measures, scores, or measures, including the Comprehensive Score for Financial Toxicity (COST) measure and the Personal Financial Wellness Scale (PFW Scale) (formerly known as the InCharge Financial Distress/Financial Well-Being Scale (IFDFW Scale), but the results are rarely presented in relation to the general population and can be difficult to interpret.

In a study of multiple myeloma patients undergoing treatment at a single academic cancer center, cancer survivors had a mean COST score of 23 (score range, 0–44, with lower values equivalent to higher burden).[31] Another study used the IFDFW Scale in a convenience sample of cancer patients receiving radiation therapy or chemotherapy at a single outpatient cancer center and found an average financial distress score of 5 (score range, 1–10, with lower numbers indicating higher distress).[7] In other studies, financial burden scores were based on the count of affirmative responses to a series of questions,[21,25,29] and the mean number (e.g., 2.94 economic burden items related to work and hardship events) was calculated.[21]

References

Soni A: Trends in the Five Most Costly Conditions among the U.S. Civilian Institutionalized Population, 2002 and 2012. Statistical Brief 470. Rockville, Md: Agency for Healthcare Research and Quality, 2015. Available online. Last accessed June 9, 2016.
Bradley CJ, Yabroff KR, Warren JL, et al.: Trends in the Treatment of Metastatic Colon and Rectal Cancer in Elderly Patients. Med Care 54 (5): 490-7, 2016. [PUBMED Abstract]
Shih YC, Smieliauskas F, Geynisman DM, et al.: Trends in the Cost and Use of Targeted Cancer Therapies for the Privately Insured Nonelderly: 2001 to 2011. J Clin Oncol 33 (19): 2190-6, 2015. [PUBMED Abstract]
Conti RM, Fein AJ, Bhatta SS: National trends in spending on and use of oral oncologics, first quarter 2006 through third quarter 2011. Health Aff (Millwood) 33 (10): 1721-7, 2014. [PUBMED Abstract]
Ekwueme DU, Yabroff KR, Guy GP Jr, et al.: Medical costs and productivity losses of cancer survivors--United States, 2008-2011. MMWR Morb Mortal Wkly Rep 63 (23): 505-10, 2014. [PUBMED Abstract]
Ell K, Xie B, Wells A, et al.: Economic stress among low-income women with cancer: effects on quality of life. Cancer 112 (3): 616-25, 2008. [PUBMED Abstract]
Meisenberg BR, Varner A, Ellis E, et al.: Patient Attitudes Regarding the Cost of Illness in Cancer Care. Oncologist 20 (10): 1199-204, 2015. [PUBMED Abstract]
Guy GP Jr, Ekwueme DU, Yabroff KR, et al.: Economic burden of cancer survivorship among adults in the United States. J Clin Oncol 31 (30): 3749-57, 2013. [PUBMED Abstract]
Guy GP Jr, Yabroff KR, Ekwueme DU, et al.: Estimating the health and economic burden of cancer among those diagnosed as adolescents and young adults. Health Aff (Millwood) 33 (6): 1024-31, 2014. [PUBMED Abstract]
Guy GP Jr, Yabroff KR, Ekwueme DU, et al.: Healthcare Expenditure Burden Among Non-elderly Cancer Survivors, 2008-2012. Am J Prev Med 49 (6 Suppl 5): S489-97, 2015. [PUBMED Abstract]
Tucker-Seeley RD, Yabroff KR: Minimizing the "financial toxicity" associated with cancer care: advancing the research agenda. J Natl Cancer Inst 108 (5): , 2016. [PUBMED Abstract]
de Souza JA, Yap B, Ratain MJ, et al.: User beware: we need more science and less art when measuring financial toxicity in oncology. J Clin Oncol 33 (12): 1414-5, 2015. [PUBMED Abstract]
Smith R, Clarke L, Berry K, et al.: A comparison of methods for linking health insurance claims with clinical records from a large cancer registry. [Abstract] Med Decis Making 21 (6): 530, 2001.
Fay S, Hurst E, White MJ: The household bankruptcy decision. Am Econ Rev 92 (3): 706-18, 2002.
Banegas MP, Guy GP Jr, de Moor JS, et al.: For Working-Age Cancer Survivors, Medical Debt And Bankruptcy Create Financial Hardships. Health Aff (Millwood) 35 (1): 54-61, 2016. [PUBMED Abstract]
Yabroff KR, Dowling EC, Guy GP Jr, et al.: Financial Hardship Associated With Cancer in the United States: Findings From a Population-Based Sample of Adult Cancer Survivors. J Clin Oncol 34 (3): 259-67, 2016. [PUBMED Abstract]
Bernard DS, Farr SL, Fang Z: National estimates of out-of-pocket health care expenditure burdens among nonelderly adults with cancer: 2001 to 2008. J Clin Oncol 29 (20): 2821-6, 2011. [PUBMED Abstract]
Davidoff AJ, Erten M, Shaffer T, et al.: Out-of-pocket health care expenditure burden for Medicare beneficiaries with cancer. Cancer 119 (6): 1257-65, 2013. [PUBMED Abstract]
Chang S, Long SR, Kutikova L, et al.: Estimating the cost of cancer: results on the basis of claims data analyses for cancer patients diagnosed with seven types of cancer during 1999 to 2000. J Clin Oncol 22 (17): 3524-30, 2004. [PUBMED Abstract]
Jagsi R, Pottow JA, Griffith KA, et al.: Long-term financial burden of breast cancer: experiences of a diverse cohort of survivors identified through population-based registries. J Clin Oncol 32 (12): 1269-76, 2014. [PUBMED Abstract]
Meneses K, Azuero A, Hassey L, et al.: Does economic burden influence quality of life in breast cancer survivors? Gynecol Oncol 124 (3): 437-43, 2012. [PUBMED Abstract]
Ramsey S, Blough D, Kirchhoff A, et al.: Washington State cancer patients found to be at greater risk for bankruptcy than people without a cancer diagnosis. Health Aff (Millwood) 32 (6): 1143-52, 2013. [PUBMED Abstract]
Shankaran V, Jolly S, Blough D, et al.: Risk factors for financial hardship in patients receiving adjuvant chemotherapy for colon cancer: a population-based exploratory analysis. J Clin Oncol 30 (14): 1608-14, 2012. [PUBMED Abstract]
Regenbogen SE, Veenstra CM, Hawley ST, et al.: The personal financial burden of complications after colorectal cancer surgery. Cancer 120 (19): 3074-81, 2014. [PUBMED Abstract]
Veenstra CM, Regenbogen SE, Hawley ST, et al.: A composite measure of personal financial burden among patients with stage III colorectal cancer. Med Care 52 (11): 957-62, 2014. [PUBMED Abstract]
Wan Y, Gao X, Mehta S, et al.: Indirect costs associated with metastatic breast cancer. J Med Econ 16 (10): 1169-78, 2013. [PUBMED Abstract]
Zafar SY, Peppercorn JM, Schrag D, et al.: The financial toxicity of cancer treatment: a pilot study assessing out-of-pocket expenses and the insured cancer patient's experience. Oncologist 18 (4): 381-90, 2013. [PUBMED Abstract]
Langa KM, Fendrick AM, Chernew ME, et al.: Out-of-pocket health-care expenditures among older Americans with cancer. Value Health 7 (2): 186-94, 2004 Mar-Apr. [PUBMED Abstract]
Finkelstein EA, Tangka FK, Trogdon JG, et al.: The personal financial burden of cancer for the working-aged population. Am J Manag Care 15 (11): 801-6, 2009. [PUBMED Abstract]
Meisenberg BR: The financial burden of cancer patients: time to stop averting our eyes. Support Care Cancer 23 (5): 1201-3, 2015. [PUBMED Abstract]
Huntington SF, Weiss BM, Vogl DT, et al.: Financial toxicity in insured patients with multiple myeloma: a cross-sectional pilot study. Lancet Haematol 2 (10): e408-16, 2015. [PUBMED Abstract]