San Francisco, CA—Delivering the keynote address at the 2020 Genitourinary Cancers Symposium, David F. Penson, MD, MPH, MMHC, Hamilton and Howd Chair in Urologic Oncology, Vanderbilt University Medical Center, Nashville, TN, highlighted the need to move toward patient-centered decisions beyond survival, focusing on patient-centered outcomes by integrating quality of life (QOL) and financial toxicity into the shared, treatment-related, decision-making process.
How financial toxicity, or financial burden, plays a role in QOL can be explained by a model (Bian et al. BMJ Open. 2018;8:e018756) that places QOL in the middle of the physical, psychological, and social experience of health.
“Financial burden has a tremendous influence on patients’ QOL, and the reason is it affects everything else,” said Dr Penson. “It affects their social life, because they need family support and, often, they need caregivers. They feel isolated. It has a psychological effect. It can cause depression. It causes people to feel dependent on others. It can cause a loss of optimism. And it actually affects the physical experience as well, because patients are not as able to get the medications they need to deal with side effects and often don’t seek care.”
In addition to out-of-pocket (OOP) expenses, missed work, and lost income, the distress that results from the cost of cancer creates financial toxicity, he said. Coping mechanisms may also come into play, as patients change their lives to deal with financial toxicity.
Start a Discussion with Your Patient
“I want you to start to develop a desire to start a discussion with your patients around the costs of treatment, and a willingness to understand their nonclinical financial situation,” Dr Penson told attendees. He asked that they “think twice” before ordering costly interventions that may have little impact on the clinical course.
He cited a perspective (Ubel et al. N Engl J Med. 2013;369:1484-1486) based on data from the National Center for Health Statistics showing that 16% to 36% of patients report problems paying their medical bills, 6% to 23% say they have medical bills they are unable to pay, and 30% to 47% have some financial burden from medical care. The problem is real, Dr Penson said, whether the patient has medical insurance or not, because that data showed that 12% to 24% of the Medicare population reports a financial burden from medical care.
Financial toxicity for those with cancer is even more overwhelming, because of the cost of cancer care. Cancer survivors are more likely than others to delay care or to forego care altogether because of cost. Their ability to see specialists and to afford follow-up care are also more limited.
“I think the problem is going to get worse over the next 10 years, not simply because of all the wonderful new drugs that are coming out, which work very well but cost a lot of money, but because of changes to the healthcare market and the Affordable Care Act,” he said. More people are choosing high-deductible plans that put more financial responsibility on the patient.
Cancer Care Is Costly
Patients with cancer spend a median of 10% to 11% of their annual income on cancer care, in addition to costs associated with other health issues. Among patients without health insurance, this percentage increases to nearly 25% of their annual income.
Dr Penson gave an example of a Medicare patient who receives sunitinib (Sutent) treatment at a cost of $13,000 annually (in 2020 costs), and a median duration of use of 1 year. After paying a deductible and coinsurance and entering then exiting the Medicare Part D donut hole, the total cost of the patient responsibility for this agent is $8900.
Patients use various life-altering strategies to afford their medications, from modifying medication use to reducing expenditures on basic needs to borrowing money. Studies reveal that among patients with cancer, “about 1 in 10 will spread out clinic or chemotherapy appointments,” said Dr Penson. “They won’t get a test. Sometimes they’ll change doctors because of it. They won’t have a procedure, or they’ll just abandon their programs’ appointments altogether.”
Poor Outcomes Linked to Financial Toxicity
The 25% of patients with cancer who report financial toxicity have poor medication adherence, fewer doctor’s visits, more delays in care, fewer medical tests performed, and more trouble with transportation than patients who do not report financial toxicity.
Patients with cancer who report financial burden also have significantly lower scores on the physical and mental components of the 12-Item Short Form Health Survey and are significantly more likely to report psychological distress.
Patients with financial burden are also more likely to worry about cancer recurrence and its effect on their responsibilities.
According to a recent study (Gillain et al. Am J Med. 2018;131:1187-1199), 42.4% of patients with cancer deplete their net worth within 2 years of a cancer diagnosis, Dr Penson said. Many patients use home equity loans to pay for care; 5 years after a diagnosis of prostate cancer, 38% of patients reported filing for bankruptcy. Among those patients, 70% had increased risk for death, even when adjusting for metastatic disease.
In a survey of 138 patients with bladder cancer (Casilla-Lennon et al. J Urol. 2018;199:1166-1173), approximately 25% of the patients reported that they had to pay more for medical care than they could afford. Patients who reported financial toxicity were more likely to report worse health-related QOL and had lower scores on the total, physical, and functional well-being scales.
Subsidizing the cost of therapy for low-income patients may be a solution to initiating targeted therapy in patients with metastatic renal-cell carcinoma. Identifying 1721 patients with metastatic renal-cell cancer using the 2011 to 2013 Medicare database, one study (Li et al. Cancer. 2017;7:75-86) showed that patients without a low-income subsidy paid more than $2800 annually in OOP costs versus $6.60 among low-income patients with the subsidy.
Patients Want to Discuss Cost
Patients report a desire to have discussions with their physicians about the cost of their cancer care. In a study of patients with prostate cancer (Jung et al. Urol. 2012;80:1252-1257), 61% said that they wanted their doctor to discuss OOP cost when they recommend treatment. Approximately 25% of patients felt burdened by OOP costs, and 20% were forced to reduce other spending.
The OOP indirect costs worsened disease-specific outcomes, such as urinary, sexual, and bowel functions among patients with prostate cancer in another study (Jaydevappa et al. Prostate. 2010;70:1255-1264), which may indicate that patients could not afford treatment for these side effects, he said.
“Financial toxicity should be considered an adverse event of therapy, similar to other side effects of treatment,” Dr Penson said. “This patient-centered end point can have a profound effect on our patients’ QOL and daily existence.”