Financial Burden in Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

Abstract

Purpose Survivors of childhood cancer may experience financial burden as a result of health care costs, particularly because these patients often require long-term medical care. We sought to evaluate the prevalence of financial burden and identify associations between a higher percentage of income spent on out-of-pocket medical costs (≥ 10% of annual income) and issues related to financial burden (jeopardizing care or changing lifestyle) among survivors of childhood cancer and a sibling comparison group. Methods Between May 2011 and April 2012, we surveyed an age-stratified, random sample of survivors of childhood cancer and a sibling comparison group who were enrolled in the Childhood Cancer Survivor Study. Participants reported their household income, out-of-pocket medical costs, and issues related to financial burden (questions were adapted from national surveys on financial burden). Logistic regression identified associations between participant characteristics, a higher percentage of income spent on out-of-pocket medical costs, and financial burden, adjusting for potential confounders. Results Among 580 survivors of childhood cancer and 173 siblings, survivors of childhood cancer were more likely to have out-of-pocket medical costs ≥ 10% of annual income (10.0% v 2.9%; P < .001). Characteristics of the survivors of childhood cancer that were associated with a higher percentage of income spent on out-of-pocket costs included hospitalization in the past year (odds ratio [OR], 2.3; 95% CI, 1.1 to 4.9) and household income < $50,000 (OR, 5.5; 95% CI, 2.4 to 12.8). Among survivors of childhood cancer, a higher percentage of income spent on out-of-pocket medical costs was significantly associated with problems paying medical bills (OR, 8.9; 95% CI, 4.4 to 18.0); deferring care for a medical problem (OR, 3.0; 95% CI, 1.6 to 5.9); skipping a test, treatment, or follow-up (OR, 2.1; 95% CI, 1.1 to 4.0); and thoughts of filing for bankruptcy (OR, 6.6; 95% CI, 3.0 to 14.3). Conclusion Survivors of childhood cancer are more likely to report spending a higher percentage of their income on out-of-pocket medical costs, which may influence their health-seeking behavior and potentially affect health outcomes. Our findings highlight the need to address financial burden in this population with long-term health care needs.

Factors influencing risk‐based care of the childhood cancer survivor in the 21st century

“…Numerous studies have documented that adult survivors of childhood cancer are at risk for reduced educational attainment, increased financial burden, underemployment, dependent living status, and limited health insurance coverage . Consistent with observations from the general population, SES (specifically, low educational attainment and household income) is directly associated with an increased risk of noncancer‐related mortality among survivors …”

Adolescent and young adult cancer care: Financial hardship and continued uncertainty

“…c 2018 Wiley Periodicals, Inc. 1 of 7 wileyonlinelibrary.com/journal/pbc https://doi.org/10.1002/pbc.27587 F I G U R E 1 Financial burden among survivors of childhood cancer and siblings. OOP, out of pocket 18 vocation opportunities. 11,12 These limitations in turn have reduced their access to employer-based insurance.…”

“…Nipp et al reporting on patients from the CCSS, highlighted the relationship between high OOP expenses and decisions to seek care. 18 Spending levels of 10% or more of household income on OOP expenses were significantly associated with all of the following: problems paying bills, deferring care, or skipping a test, treatment, or follow-up ( Figure 1). 18 Among those who are employed and insured, another consequence of chronic health conditions after cancer has been a reluctance to change jobs for fear of losing health insurance, known as job lock.…”

“…18 Spending levels of 10% or more of household income on OOP expenses were significantly associated with all of the following: problems paying bills, deferring care, or skipping a test, treatment, or follow-up ( Figure 1). 18 Among those who are employed and insured, another consequence of chronic health conditions after cancer has been a reluctance to change jobs for fear of losing health insurance, known as job lock. Job lock is a concept of feeling tied to a job for the benefits, rather than for job content, personal or professional growth, or room for innovation.…”

The intersection of financial toxicity and family building in young adult cancer survivors

“…These effects may have very real consequences for survivors' long‐term financial outlook and access to care. Compared with age‐matched peers and siblings, YA survivors report lower income and net worth, and they are more likely to be underemployed or unemployed, lack insurance coverage or be covered by Medicaid, have debt, and declare bankruptcy . A recent analysis found that YA survivors also are more likely than their siblings to experience “job lock,” in which they stay in a job to maintain employer‐sponsored medical coverage .…”