For survivors of childhood cancers, financial hardship can be an ongoing concern for years after cancer. A new study aimed to estimate the prevalence of financial hardship among adult survivors of childhood cancer in the era following the implementation of the main provisions of the Affordable Care Act (J Clin Oncol 2022; doi: 10.1200/JCO.22.00572). "Our findings underscore the importance of screening for financial hardship and the development and evaluation of interventions to mitigate financial hardship to minimize adverse health effects," study coauthor Robin Yabroff, PhD, MBA, Scientific Vice President of Health Services Research at the American Cancer Society, told Oncology Times.
Researchers analyzed data from 3,555 survivors of childhood cancer (who were at least 5 years out from diagnosis) and 956 of their siblings who had completed a survey administered between 2017 and 2019 as part of the Childhood Cancer Survivor Study. The study evaluated 21 questions that measured financial hardship. The researchers analyzed the associations of cancer type, treatment history, and sociodemographic characteristics and financial hardship among survivors. The findings showed that survivors were more likely than siblings to report any financial hardship (63.4% vs. 53.6%), being sent to debt collection (29.9% vs. 22.3%), problems paying medical bills (20.7% vs. 12.8%), more likely than siblings to report foregoing needed medical care (14.1% vs. 7.8 percent), and more likely than siblings to report worry or stress about paying their rent or mortgage (33.6% vs. 23.2%) or having enough money to buy nutritious meals (26.8% vs. 15.5%)
In a statement published with the article, Smita Bhatia, MD, MPH, FASCO, Associate Editor of the Journal of Clinical Oncology, noted, "Guidelines should be developed to screen for financial hardship in childhood cancer survivors. Intervention programs, such as financial navigators, should be developed and evaluated in this population." In an interview with Oncology Times, Yabroff shared more about this work.
1 Why conduct this research now? What is different from other data on this topic?
"Our study examined financial hardship among adult survivors of childhood cancer after the main provisions of the Affordable Care Act were implemented in 2014. These provisions include expansion of Medicaid income eligibility to 138 percent of the federal poverty line in some states, establishment of Marketplace for individual purchase of insurance, out-of-pocket caps for private coverage, and elimination of pre-existing condition exclusions that previously allowed insurers to deny coverage to cancer survivors. These provisions may be especially beneficial for adult survivors of childhood cancer.
"Other research has examined the effects of specific provisions of the Affordable Care Act, such as Medicaid expansions, and found that Medicaid expansion was associated with earlier-stage disease among newly diagnosed patients and better survival. I am not aware of studies examining specific provisions of the ACA among adult survivors of childhood cancer."
2 What were the most significant and new findings from this research?
"The survey included 21 questions about different aspects of financial hardship, including difficulties paying medical expenses, debt and bankruptcy, financial barriers to receiving medical care, the impact of financial hardship on non-medical spending, stress and worry about finances, and delays in care because of cost.
"These measures are meaningful because they are important to patients and cancer survivors. Additionally, accumulating evidence suggests that financial hardship is associated with poorer physical and mental health, reduced quality of life, and worse survival following a cancer diagnosis.
"Adult survivors of childhood cancer were significantly more likely than siblings to report any type of hardship, including being more likely to report being sent to debt collection, problems paying medical bills, foregoing needed medical care, and worry and stress about paying their rent or mortgage or having enough money to buy nutritious meals. Among survivors, sociodemographic characteristics (i.e., having less education, lacking private health insurance coverage) and treatment factors were significantly associated with increased hardship.
"In our evaluation of factors associated with financial hardship among cancer survivors, we found that sociodemographic characteristics (including having less education, lacking private health insurance coverage) and some treatment factors were significantly associated with increased hardship."
3 What should practicing oncologists and cancer care providers know about these data and your work?
"Financial hardship among adult survivors of childhood cancer is common-almost 30 percent [of those in this study] reported that they were currently paying off medical bills even though they were an average of 32 years from cancer diagnosis, suggesting that new and existing chronic health conditions stemming from cancer therapy led to persistent financial hardship. Additionally, 30 percent of survivors reported having been sent to debt collection, and between one-quarter and one-third of survivors were worried about their ability to pay for necessities such as shelter, nutritious food, and utilities.
"Given the high prevalence of financial hardship observed in this study, we believe that surveillance of adult survivors of childhood cancer for hardship is critically important. The development of cancer-specific screening tools and referral guidelines are in their infancy, focused on on-treatment patients rather than long-term survivors.
"Since most adult survivors of childhood cancer are no longer engaged with the cancer care system, it is imperative that primary care practitioners, social workers, and other providers are aware of these risks-whether through sharing of survivor care plans or other mechanisms."