Impact of out-of-pocket expenses on cancer care

Reporter: Gita Suneja, MD
The Abramson Cancer Center of the University of Pennsylvania
Last Modified: June 5, 2011

Presenter: Yousof Zafar
Presenter Affiliation: Duke University Medical Center


  • The cost of cancer treatment is high and growing rapidly.
  • Although national media attention and public policy has focused on the cumulative costs of care at the macroeconomic level, the burden on individual patients is great, even among patients with health insurance.
  • Unfortunately, many insured patients are underinsured, or spend a substantial percentage of their income on out-of-pocket expenses (OOPE) such as high deductibles and co-pays for cancer care.
  • Definitions of underinsured include: OOPE > 10% of annual household income, OOPE > 5% of income for low-income families, or deductible > 5% of annual income. From 2003 to 2007, the estimated proportion of underinsured patients rose from 12% to 20%.
  • Although assistance programs are available, patients must meet eligibility requirements, navigate the public assistance system, and remain on long waiting lists. The demand for such services outweighs the supply, particularly in the current economic climate.
  • This study sought to explore how cancer related OOPE impact patient-reported lifestyle, quality, and satisfaction with cancer care.


  • Survey-based study design
  • Patients were recruited from Duke University Medical Center oncology clinics and from the Healthwell Foundation, a national non-profit organization providing financial assistance to the underinsured to manage health care costs.
  • Eligible patients had a diagnosis of breast, lung, or colorectal cancer, and had received treatment for at least one month prior to enrollment.
  • Patients who did not ultimately receive assistance from Healthwell Foundation were still eligible to participate in the study.
  • After enrollment, a baseline survey was administered with questions pertaining to demographics, coping strategies, and perceived quality of care. The coping strategy questions were based on validated models by Schrag, et al published in the JCO 2009. Subsequently, patients prepared a cost diary once a month for four consecutive months.
  • Associations between demographics, coping strategies, and OOPE were examined using descriptive statistics and Pearson coefficient.
  • 978 patient were contacted, 602 patients agreed to participate, and 216 ultimately completed the baseline survey and were eligible for study participation.


  • Patients were enrolled nationwide, with the majority coming from the Healthwell Foundation. 23% of the cohort was recruited at the Duke University Cancer Center.
  • Of the 216 patients enrolled, the mean age was 65 years (range 37-88). The majority of patients were Caucasian (80%), female (88%), and with breast cancer (76%). Half the cohort was married (50%).
  • 66% of patients sampled earned annual income < $40,000, 56% were retired, and 53% had a high school education or less.
  • 99% of the cohort had health insurance, which was Medicare in 66%. 83% had prescription drug coverage.
  • The mean OOPE were $712 per month, which represented 10-20% of household income for most patients. The majority of the expenses were insurance premiums, prescriptions, and lost wages.
  • 39% of the sample described their financial burden as moderate, 30% as significant, and 11% as catastrophic.
  • As financial burdens increased, patients used significantly more coping strategies to manage (p=0.001).
    • Coping strategies included not filling prescriptions (26%), filling only part of a prescription (22%), or taking less than the prescribed amount of medication (20%) to save money.
    • Other coping strategies employed were obtaining samples from physicians (60%), shopping around for the lowest price (51%), asking the physician for a less expensive medication (49%), and purchasing medications from outside the United States (7%).
    • 6-9% of patients missed or spread out appointments to save money, or declined recommended tests.
  • Many patients were forced to alter their lifestyle to manage rising expenses. 64% enrolled in a medication co-pay assistance program, 51% reduced spending on basics like food and clothing, and 43% borrowed money or used credit cards to pay for medical expenses.
    • 70% reduced spending on leisure activities, 48% used all or a portion of their savings to pay medical expenses, and 18% sold possessions or properties.
  • In total, > 90% of patients used a coping strategy to deal with their financial burden. Use of a coping strategy was positively correlated with financial burden (p=0.001).
  • Use of a coping strategy was negatively correlated with satisfaction with quality of care (p=0.001).
  • Patients with greater financial burden reported lower levels of satisfaction with their cancer care (p=0.001).

Authors' Conclusions

  • OOPE incurred by underinsured cancer patients triggered three levels of "financial toxicity": considerable lifestyle changes, compromised cancer care, and decreased satisfaction with care.
  • Further research should focus on patient, health system, and health policy level initiatives to address this problem.


  • This very interesting study highlights the substantial toll the financial burden of cancer has on patients, even those with insurance.
  • Much public assistance programming has focused on uninsured patients, but with the ongoing U.S. economic recession, the proportion of underinsured patients continues to grow.
  • The study has several notable limitations:
    • Due to the survey-based design, the study is limited in sample size and this may have affected the power of the study.
    • Additionally, only 22% of the patients initially contacted actually participated, and this may have introduced substantial selection bias into the study. For example, patients having difficulty coping with the financial burden may have been more likely to respond to the survey request.
    • The large proportion of female patients with breast cancer limits the generalizability to other patient groups.
    • Although the coping strategies solicited by patients here have been validated in other studies, they are exploratory and the magnitude of observed associations is of uncertain clinical significance.
  • This study addresses an important subset of the insured population of U.S. who may not receive high quality care due to financial burden and escalating costs of care. More importantly, the authors have captured patient's attitudes and behaviors, and find that dissatisfaction with health care quality is related to financial burden.
  • The health policy implications of the study presented here are of critical importance, and health care reform must address the substantial and growing proportion of underinsured cancer patients.