Serious illness can bring patients to financial ruin. They may have to quit their jobs to deal with their medical issues, losing both income and health insurance at a time when their out-of-pocket expenses for health care could run thousands of dollars per year.

To cope, patients may be forced to cut back on spending for food and housing and skip medication doses, forgo filling prescriptions, or discontinue treatment altogether. Patients have depleted life savings, incurred debt, and declared bankruptcy as a consequence of their illness.

The economic burden imposed by health problems has been termed “financial toxicity,” a problem that could worsen if health insurance companies shift more costs to patients in the form of higher deductibles and copays. Some physicians believe potential financial toxicity should be included in discussions with patients about treatment plans.

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“Physicians must play a central role as financial advocates for our patients,” said Courtney M.P. Hollowell, MD, chairman of urology at Cook County Health in Chicago, Illinois, the third largest public hospital system in the United States. It serves a particularly vulnerable segment of the population, including racial and ethnic minorities, immigrants, and the underinsured and uninsured.

“They often rely on us to provide them with information about treatment efficacy and side effects when making critical management decisions,” Dr Hollowell added. “We order imaging, prescribe medications, provide referrals, and recommend surgery — almost always without ever addressing how much all of it costs.”

Daniel D. Joyce, MD, a urologic oncology fellow at Mayo Clinic in Rochester, Minnesota, said financial toxicity, like drug toxicity, should be included in physician-patient discussions about treatment options. “Indeed, financial toxicity has been associated with worse quality of life, symptom burden, and even survival, further supporting its inclusion in shared decision-making,” Dr Joyce said.

Worse Therapeutic Adherence

Research shows that cost concerns can lead to lack of adherence to treatment. Findings from a recent survey of adult patients with cancer and cancer survivors found that financial toxicity is associated with decreased use of prescription medications and increased concern about cancer returning or getting worse.1 Survey responses from 609 patients revealed that those who were ever worried about paying large medical bills, compared with those who were not, had significant 4.5-fold increased odds of avoiding buying necessary prescriptions and 2.8-fold increased odds of worrying about cancer returning or getting worse.

Recent research suggests that discussions between physicians and patients about the financial burden of treatment are frequently absent. In a survey of women with early-stage breast cancer and their physicians, 55.4% of those who expressed a desire to speak with their providers about the impact of breast cancer on employment or finances reported no relevant discussion with their oncologists, primary care providers, social workers, or other professionals.2 The survey also revealed that financial toxicity was common, with 21.5% of White, 22.5% of Asian, 45.2% of Black, and 35.8% of Hispanic patients reporting they had to reduce spending on food.

The Burden of Medical Debt

The reality of financial toxicity is reflected in statistics on medical debt. In 2019, 23 million adults in the United States had significant medical debt, defined as more than $250, according to a Kaiser Family Foundation analysis of data from US Survey and Income Program Participation, a statistical survey conducted by the US Census Bureau. Of these adults, 26% owed more than $5000.3

In an analysis of 9.5 million estimated new diagnoses of cancer from 2000 to 2012, researchers found that 42.4% of patients depleted their entire life’s assets at 2 years after a cancer diagnosis and 38.2% were financially insolvent at 4 years.4

A study of claims data from January 2019 to January 2021 for 2,854,481 commercially insured adults revealed an association between burden of chronic disease and adverse financial outcome.5 Overall, 9.6% had medical debt in collections, 8.3% had nonmedical debt in collections, 16.3% had delinquent debt, 19.3% had a low credit score, and 0.6% had a recent bankruptcy. Among patients with debt in collections, the estimated amount increased with the number of chronic conditions, from $784 for patients with no chronic conditions to $1252 for those with 7 to 13 conditions.

Medication costs can be a big part of patients’ economic distress. This is especially the case with newer drugs, as Dr Joyce and colleagues demonstrated in a study of 13,409 commercially insured men with advanced prostate cancer.6 Mean treatment-related out-of-pocket costs for novel hormonal therapies for advanced prostate cancer in the first year of treatment was $4236. By comparison, first-year treatment-related out-of-pocket costs for androgen deprivation therapy and nonandrogen systemic agents — both older conventional treatments — were $165 and $994, respectively.

Dr Joyce and colleagues concluded that their study findings “support inclusion of a discussion regarding treatment costs as a component of shared decision making and should guide future efforts to identify and ameliorate financial toxicity in this patient population.”

A Focus on Cancer

Although many types of medical problems can result in financial toxicity, much of the attention given to it comes from the cancer care community. In fact, the term financial toxicity was introduced by oncologists S. Yousuf Zafar, MD, and Amy P Abernethy, MD, PhD, at Duke Cancer Institute in Durham, North Carolina, in 2013.7

“Out-of-pocket expenses related to treatment are akin to physical toxicity, in that costs can diminish quality of life and impede delivery of the highest quality care,” they wrote.

And it was a team led by medical oncologist Jonas A. De Souza, MD, of The University of Chicago Medicine, that developed and validated the Comprehensive Score for Financial Toxicity (COST) questionnaire to assess financial toxicity in patients with cancer.8,9

COST is an 11-item scale that assesses various domains of financial toxicity and distress as it relates to cancer diagnosis and treatment. It asks patients to respond to such statements as: “My out-of-pocket medical expenses are more than I thought they would be” and “I worry about the financial problems I will have in the future as a result of my illness or treatment.” Possible answers include: “Not at all,” “A little bit,” “Somewhat,” “Quite a bit,” and “Very much.”

Talking About Financial Toxicity

Physicians may be reluctant to bring up the financial aspects of medical care with patients due to a lack of knowledge, according to Dr Hollowell.

“One of the main reasons physicians avoid conversations about the cost of care is because providers just don’t know how,” Dr Hollowell said. “Physicians in training are traditionally insulated from information about the cost of the tests and treatments they order for patients. As a result, most physicians are ill-equipped to make the most cost-effective choices for patients and lack the understanding of how these decisions affect patients’ medical bills. Additionally, lack of cost transparency, on the part of the hospital and insurance provider, can make it difficult to access accurate comparative cost information that can be meaningfully shared with the patient.”

Dr Joyce echoed that view. “Part of the difficulty is the lack of data assessing financial toxicity in patients with urologic issues,” he said. “It is challenging to provide patients accurate expectations of financial toxicity when we have limited data to inform those discussions.”

Although many patients and providers are uncertain about how to bring up finances in treatment discussions, research has shown that the majority of patients report a desire to talk to their physicians about the impact of medical costs on their lives.10

To address this reluctance and practice gap, Dr Hollowell said, the Cook County Health Cancer Center has designed an educational toolkit to assist providers with cost conversations adapted from the COST questionnaire. The answers patients provide can serve as a cost conversation guide to identify those who may warrant further discussion about the cost of care.

Shared decision-making, Dr Hollowell said, should focus on the treatment benefits of value-based care. Physicians should discourage the use of interventions that have little benefit but high costs and reduce unnecessary duplication of studies such as laboratory assessments and imaging.

“Otherwise, our patients experiencing financial toxicity are forced to make real-life, cost cutting-decisions like electing not to fill prescriptions or non-adherence to costly medications, skipping medical visits, [and] cutting back on food, clothing, and housing costs. Non-compliance can easily be mistaken for patients experiencing financial toxicity,” Dr Hollowell said.

Dr Hollowell noted that all patients seen at Cook County Health Cancer Center are routinely screened for financial toxicity. Providers are encouraged to integrate financial impact into shared decision-making discussions.

“To optimize patient-centered care, I encourage providers to begin financial toxicity screening and cost conversations during the initial patient visit,” he said.

In his practice, Dr Joyce tries to incorporate treatment costs into his discussions with patients.

“First, I try to get a sense of the baseline financial strain a patient is under,” Dr Joyce said. “In my experience, this can often be straightforward to ascertain, as patients are generally open about what they can and can’t afford. Second, I seek out data that helps me better understand the out-of-pocket costs associated with the treatments I prescribe. This helps me have a general idea of whether ‘treatment A’ is, on average, significantly more expensive for patients than ‘treatment B.’ Finally, I try to resist the urge to brush off cost concerns as ‘not my problem’ and identify resources that my patients can access to help them navigate these issues. In many cases, financial assistance programs exist that help obviate the need for management tailoring due to financial toxicity concerns.”

This article originally appeared on Renal and Urology News