Annual Out-of-Pocket Expenditures and Financial Hardship Among Cancer Survivors Aged 18–64 Years — United States, 2011–2016

Donatus U. Ekwueme, PhD; Jingxuan Zhao, MPH; Sun Hee Rim, PhD; Janet S. de Moor, PhD; Zhiyuan Zheng, PhD; Jaya S. Khushalani, PhD, MBBS; Xuesong Han, PhD; Erin E. Kent, PhD; K. Robin Yabroff, PhD

Disclosures

Morbidity and Mortality Weekly Report. 2019;68(22):494-499. 

In This Article

Abstract and Introduction

Introduction

In the United States in 2019, an estimated 16.9 million persons are living after receiving a cancer diagnosis.[1] These cancer survivors face many challenges, including functional limitations, serious psychological distress,[2] and other lasting and late effects of cancer treatments. Because of the high cost of cancer therapy, many cancer survivors are more likely to face substantial out-of-pocket health care expenditures and financial hardship, compared with persons without a history of cancer.[3,4] Out-of-pocket expenditures and financial hardship associated with cancer have been higher among survivors aged 18–64 years than they have been among older survivors.[5] To estimate annual out-of-pocket expenditures and financial hardship among cancer survivors aged 18–64 years, compared with persons without a cancer history, CDC, the American Cancer Society, and the National Cancer Institute analyzed data from the 2011–2016 Medical Expenditure Panel Survey (MEPS).* The average annual out-of-pocket spending per person was significantly higher among cancer survivors ($1,000; 95% confidence interval [CI] = $886–$1,113) than among persons without a cancer history ($622; CI = $606–$639). Financial hardship was common; 25.3% of cancer survivors reported material hardship (e.g., problems paying medical bills), and 34.3% reported psychological hardship (e.g., worry about medical bills). These findings add to accumulating evidence documenting the financial difficulties of many cancer survivors. Mitigating the negative impact of cancer in the United States will require implementation of strategies aimed at alleviating the disproportionate financial hardship experienced by many survivors. These strategies include systematic screening for financial hardship at cancer diagnosis and throughout cancer care, integration of discussions about the potential for adverse financial consequences of treatments in shared treatment decision-making, and linkage of patients and survivors to available resources to ensure access to high-quality evidence-based care.

MEPS is conducted by the U.S. Department of Health and Human Services' Agency for Healthcare Research and Quality and is an annual, nationally representative household survey of the civilian noninstitutionalized population that collects detailed information on demographic characteristics, health status, health insurance coverage, household income, and health care expenditures, including out-of-pocket spending. This report used pooled data from the 2011–2016 MEPS (average annual response rate of 46.0%) and the 2011 and 2016 MEPS Experiences with Cancer self-administered questionnaires completed by cancer survivors (response rates of 90.0% and 81.2%, respectively). MEPS self-administered questionnaires included questions about how cancer, its treatment, and lasting effects of treatment affected access to care, employment, and financial situation. All analyses were conducted using SAS (version 9.4; SAS Institute) and Stata/IC (version 14; StataCorp) to account for the complex survey design and nonresponse. Statistical tests were two-sided, and differences were considered statistically significant if p<0.05.

Cancer survivors were identified as persons who responded affirmatively to the MEPS question "Have you ever been told by a doctor or other health professional that you had cancer or a malignancy of any kind?" Out-of-pocket spending was estimated in two ways: 1) annual out-of-pocket spending in 2016 dollars (https://www.bea.gov/) and 2) high annual out-of-pocket burden (defined as spending >20% of annual family income on medical care). Multivariable generalized linear regression with a gamma distribution and a log link was used to estimate annual out-of-pocket spending, comparing persons with and without a cancer history, and adjusted for the following sociodemographic characteristics: age group, sex, race/ethnicity, health insurance status, employment status, number of MEPS priority conditions (excluding cancer), marital status, and educational attainment. Multivariable logistic regression was used to evaluate the association between cancer history and high annual out-of-pocket burden adjusted for the same sociodemographic characteristics.

Financial hardship associated with cancer, its treatment, or the lasting effects of that treatment was measured in material and psychological domains. Material hardship was measured by asking survivors whether they ever had to borrow money, go into debt, or file for bankruptcy or had been unable to cover their share of medical costs. Psychological hardship was considered being worried about large medical bills. The percentages of material and psychological financial hardship were estimated using multivariable logistic regression analyses adjusted for the same sociodemographic characteristics.

Cancer survivors were more likely to be older, female, non-Hispanic white (white), married, privately insured, working full-time, and have higher education and multiple chronic conditions than were persons without a cancer history (Table 1). Approximately one half of cancer survivors (54.2%) received their diagnosis at least 5 years before the survey. In unadjusted analysis, cancer survivors had higher mean annual out-of-pocket expenditures and were more likely to have high out-of-pocket burden than were persons without a cancer history.

In adjusted analyses, mean annual out-of-pocket spending was $1,000 (CI = $886–$1,113) for cancer survivors and $622 (CI = $606–$639) for persons without a cancer history (p<0.001) (Table 2). Cancer survivors also had higher annual out-of-pocket expenditures than did persons without a cancer history in each sociodemographic stratum. Annual out-of-pocket spending was higher among persons with and without a cancer history who were older and who had more MEPS priority conditions.

Cancer survivors were more likely to report high out-of-pocket burden (>20% of annual family income), compared with persons without a cancer history (1.9% versus 1.0%; p<0.001). Among cancer survivors, annual out-of-pocket spending was higher among those with private health insurance coverage than those without health insurance ($1,114 versus $959; p<0.001), but out-of-pocket burden was higher among the uninsured (2.8%) than among those with private insurance (1.9%) or public insurance (1.5%). Out-of-pocket spending was highest among survivors who were not working (4.3%) followed by those who were working part-time (2.9%) and those who were working full-time (0.6%).

In adjusted analyses, approximately one fourth (25.3%) of cancer survivors reported material hardship associated with cancer, and one third (34.3%) reported psychological financial hardship (Table 3). The percentage of survivors who reported experiencing material or psychological financial hardship was higher among minority racial/ethnic groups than among whites and highest for persons aged 40–49 years. Survivors who were uninsured were most likely to report material financial hardship (36.5%) followed by those with public (33.1%) and private (21.9%) insurance. Psychological financial hardship was also higher among the uninsured (49.4%) than among those with public (35.9%) or private (32.5%) health insurance coverage.

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