Perceived financial hardship among patients with advanced cancer

Our work now adds the important element of perceived financial hardship to the advanced cancer-related distress puzzle. We should consider integrating a financial distress assessment into routine cancer care, particularly with patients and families with advanced cancer, to proactively and routinely assess and intervene with available distress mitigating resources. Therefore, understanding the patients most likely to experience financial distress will help personalize supportive therapy.

This study’s results as well as the existing literature describing financial distress support the use of comprehensive screening instruments to capture elements of financial burden beyond out-of-pocket costs.^8,25 This screening is particularly relevant because we are increasingly recognizing that gross annual household income does not always reflect financial hardship or distress. The instrument we used for this analysis, the Psychological Sense of Economic Hardship, provides a broad view of financial toxicity including the specific components of financial strain, the inability to make ends meet, not having enough money for necessities, and economic adjustments experienced by patients with advanced cancer.²⁰ Another measure to evaluate financial toxicity among patients with cancer includes the Comprehensive Score for Financial Toxicity (COST), which is a widely used patient-reported outcome measure. It was developed with input from both patients and oncology experts.²⁵ Use of a financial toxicity assessment tool adds to our understanding of the economic financial burden experienced by patients with cancer, specifically those with advanced cancer.

Tucker-Seeley and Yabroff have identified several areas in which the research agenda for financial toxicity should focus, including: documentation of the socioeconomic context among patients across all areas of the cancer care continuum, further identification and characterization of at risk populations to address health disparities, and the inclusion of cost discussions in the health care context.²⁶ Furthermore, research is needed to identify key areas to target for interventions addressing financial toxicity, such as addressing lack of financial resources to cover the cost of cancer care, focusing on managing or preventing the distress that results from a lack of financial resources, or addressing coping behaviors used by families to manage the financial burden of cancer care.²⁶ Although cost discussions between health care providers and patients have been identified as important in reducing the financial burden of cancer care, the content, timing, and goals of those discussions still need to be better articulated for different patient populations, including patients with advanced cancer.^3,27-28 In addition, resources such as social workers, patient navigators, or financial counselors have been identified as effective in assisting patients with financial planning and accessing community resources to address financial burden and assistance.⁴

Design considerations

This study has limitations that need to be noted. Its cross-sectional design does not allow for the analysis of causal inferences. In addition, certain groups were underrepresented in this study’s sample, including uninsured patients, men, and some minority groups, which may have underestimated the amount of financial burden experienced by patients with advanced cancer. The lack of representativeness of uninsured individuals may be a result of the eligibility of persons with advanced cancer for Medicaid. However, a strength of this study is its ability to increase the representativeness of African American/black patients in the study of advanced cancer and financial hardship. In our study, just over a quarter of the participants (26 of 100; 26%) were black/African American, compared with the US Census Bureau’s national census level of 13.3% and 13.4% in Allegheny County, Pennsylvania .²⁹

The lack of employed participants in this study could be because many were not able to work because of the advanced stage of their disease. The low level of partnered status is a limitation, although one study site was a low-income hospital where one generally tends to see higher levels of unpartnered status. This study did not control for demographic information such as gender or age, thus, the relationships between the primary outcome variables and financial hardship may be overestimated. Moreover, this analysis of financial distress is limited to the context of the United States due to our lack of universal health care and unique payment system. Although we included only patients who were in the palliative phase of cancer treatment, no medical record review was conducted to determine previous cancer history and treatments, which might have provided more insight into other financial loss or cost of cancer treatment. Furthermore, we note that it can be difficult to prognosticate with accuracy and identify that some patients with advanced cancer may have been excluded from the study due to the inclusion criteria of less than 1 year of survival.

Conclusion

Perceived financial hardship is an important assessment of the burden placed on patients due to the cost of disease; and is a good start in assessing indirect costs that patients take on when coping with advanced stages of cancer and can shed light on an aspect of distress experienced by this patient population that is not commonly addressed. Subjective measures of perceived financial hardship complement objective measures that are commonly indicative of economic resources and can further our understanding of the impact of financial distress experienced by patients with cancer. Further study of financial impacts of advanced cancer as well as predictors of financial distress are essential to the early identification of financial hardship and the development of interventions to support those at high risk or experiencing financial distress.