COVID-19 and financial toxicity in patients with renal cell carcinoma

Much has been written about how the COVID-19 crisis is placing immense strain on healthcare systems worldwide. As a consequence, there has been a rush to develop guidelines around every element of cancer care, ranging from use of surgery, radiation, systemic therapy to supportive care modalities [1‐4]. Practice changes have been implemented to reduce touchpoints for patients and to preserve hospital resources for COVID-19 patients. However, less research has focused on how the crisis is impacting individuals being treated for cancer, including adverse effects of financial toxicity.

Advances in care for patients with renal cell carcinoma have dramatically changed over the last decade, improving outcomes and increasing overall survival for patients. However, these advances have occurred during a time when insurance plans have also increased cost-sharing, shifting a greater proportion of treatment costs directly to the patient [5].

An estimated 2.7 billion people have been impacted by coronavirus lockdowns and according to the United Nations Conference on Trade and Development, the global economy could lose $2 trillion as a result of the crisis [6].

Advances in cancer care become meaningless if patients cannot afford them or if the patients’ prognoses continue to be determined by where they live or how good their insurance is [7].

We conducted an online survey to ascertain (a) patient anxiety level around COVID-19 and (b) implications on financial burden.

Our study reveals that while patients experience heightened anxiety about increasing financial hardship related to COVID-19, they remain substantially concerned about cancer recurrence and progression. In the overall population, 71% felt they had a heightened risk for COVID-19 infection; however, only 27% of patients contacted their treating physicians to confirm this information. Patients with RCC seem unwilling to compromise planned surveillance for localized disease or planned systemic therapy for metastatic disease.

In our cohort, anxiety related to financial hardship is very high, mainly in patients with a moderate-to-high income and higher educational level.

The median COST score in our cohort of RCC patients is 21.5, which is somewhat lower than previously described cohorts of cancer patients in general, where it was at 23, indicating that pandemic might be increasing financial anxiety [8‐10].

Although oral systemic therapy based on tyrosine-kinase inhibitors has one of the highest co-pays for patients [9], this was the subgroup of respondents that expected the lowest financial hardship with a COST score of 23.9. Patients prior to surgery had the one of the lowest scores at 20.0, which could be a reflection of the fear of future costs versus actual cost. The lower rates of financial concern for patients receiving oral therapy could be due to the fact that these drugs are more commonly used in later-line treatment, reflecting a patient population that has more experience with treatment resulting in lower anxiety levels related to cost. In line with previous findings, younger patients were more likely to be anxious about financial hardship and might need additional counseling and a specific plan to address this anxiety [9].

Interestingly, patients who have been diagnosed with cancer, but have not yet had treatment, expressed higher anxiety about financial toxicity versus patients already on therapy. This was true for both metastatic patients and patients with localized disease. It could be that uncertainty related to future costs is a larger driver of financial toxicity rather than the actual realized cost of treatments for patients. This might indicate a need for increased counseling for patients who are newly diagnosed and could be experiencing anxiety due to the uncertainty related to potential financial costs (Fig. 2).

This concern related to uncertainty of future costs is also evident in the responses related to the COST questionnaire. When asked about confidence in covering the cost of treatment, 41% indicate that they are not at all confident that they have enough money in their savings or retirement. Yet, when asked whether their out-of-pocket expenses were more than they thought they would be, only 12% said “very much”. Only 6% of patients said that they feel satisfied with their current situation, but when asked if they were able to meet their monthly expenses, only 8% indicated that they were not able to do so. When asked if they felt in control of their financial situation, less than 10% indicated that they were. But again, when asked if their cancer or treatment had reduced their satisfaction with their present financial situation, only 16% said very much.

Uncertainty in cancer is one of the most significant forms of distress in cancer patients [11]. It could be that the specter of future costs, fear related to inability to care for their family as their disease progresses, could be more important drivers to consider when measuring financial toxicity.

Research related to patient-reported outcomes, while rapidly advancing in cancer care, is still poorly understood in renal cell carcinoma. Despite demands from patient advocacy organizations, patient values concerning treatment decisions are yet to be defined and poorly described and understood [12]. Repeated assessment and analyses to differentiate trends from principles are needed. Nonetheless, the high rates of anxiety highlight the need to address financial toxicity as a standard part of care for kidney cancer patients.

Comparing these numbers needs to be done with caution as there has not been a COST analysis in RCC so far. As the COST score observed in our patient cohort is comparable to other disease areas, we are confident it reflects on the real situation. As there is uncertainty and the fear of losing jobs and access to medical care is settling in, we believe it reflects the actual changes in the medical situation rather than being caused by a selection bias. Notably, reported cohorts so far had comparable demographics and baseline characteristics, with the majority of respondents being female, having a higher educational level and income [9, 10].

Limitations of our study include the use of data supplied by patients. Using this approach, confirmation of medical data (e.g., histology, stage, treatment regimen) is not feasible. Furthermore, the questionnaire outside the COST data was not validated. There is also likely some selection bias among survey respondents—our population was predominantly female, highly educated and primarily US-based, and a relatively high proportion was treated at academic centers. But compared to previous surveys, in our patient cohort with more than 1500 responses, no differences in characteristics were seen (data submitted for publication). Perhaps most importantly, the data for COVID-19 are evolving extremely rapidly. The distribution of cases is changing, as is the approach to infection prevention, prophylaxis and treatment [1, 3, 13‐16]. As such, it is possible that the perspective of patients and physicians will change as the situation progresses. To supplement this, we plan to continue to survey the RCC community to obtain the patient perspective on management.

Our data highlight severe financial impact of COVID-19 in patients with RCC. Acknowledging financial hardship and uncertainty related to future costs and providing thorough counseling of cancer patients should be part of the conversation during the pandemic. Younger patients, women and those with a lower income seem to be at highest need of financial advising. Treatment and surveillance of RCC patients might have to be adjusted to contemplate financial and medical needs.