Even If Insured, People with Advanced Cancer Often Face Financial Problems
, by NCI Staff
Many people being treated for advanced cancer experience serious financial problems related to the cost of their care, even if they have health insurance, according to a new study.
The study enrolled 380 patients with advanced colorectal cancer, of whom all but 7 had health insurance. One year after joining the study, nearly three-quarters of the patients were facing financial problems.
“Financial hardship caused by cancer care is far more common than we had previously thought, and having health insurance does not seem to protect patients from financial hardship,” said study leader Veena Shankaran, M.D., of the Fred Hutchinson Cancer Research Center.
Some patients experience financial hardship soon after being diagnosed with advanced cancer, she continued. Approximately 25% of the patients in the study reported financial problems in the 3 months after their diagnosis.
“We need to address the issue of financial hardship as we would any other complication of cancer therapy,” Dr. Shankaran added. The new findings, she noted, could help researchers better understand the magnitude of the problem.
The SWOG Cancer Research Network conducted the study using a nationally representative sample of patients. Their findings appeared in the Journal of the National Cancer Institute on January 4.
The results suggest that “having health insurance may no longer be sufficient to protect patients and families from financial hardship and its adverse” effects on health, wrote Robin Yabroff, Ph.D., of the American Cancer Society, and her colleagues in an accompanying editorial.
The findings also underscore the need to develop strategies for protecting people with cancer from financial hardship, also known as financial toxicity, said Dr. Shankaran.
Rising out-of-pocket medical costs for patients with advanced cancer
In the United States, cancer is among the most expensive medical conditions to treat. Patients may receive multiple treatments, such as surgery, chemotherapy, radiation therapy, targeted therapy, and immunotherapy.
Patients with cancer and their families also have substantial nonmedical costs, such as transportation to treatment centers. And people undergoing treatment for cancer may miss work and lose income.
As a result, some patients and their families may have to decide between paying for their cancer care and covering the costs of basic household needs, such as food, housing, and utilities, noted Dr. Yabroff and her colleagues in the editorial.
There is growing evidence of financial problems among people with cancer. The current study is among the first to focus on patients who are undergoing active treatment for advanced cancer and to be conducted prospectively—that is, by collecting financial information from patients over time beginning soon after their diagnosis.
The researchers focused on advanced colorectal cancer in part because the chronic and intensive nature of treatment for the disease may have led to increased financial burdens among patients.
“This study complements other research on cancer-related financial hardship,” said Janet de Moor, Ph.D., of NCI’s Healthcare Delivery Research Program in the Division of Cancer Control and Population Sciences, who was not involved in the research.
The strengths of the study, she added, included its prospective design, the geographic diversity of the study participants, and the focus on recently diagnosed patients.
Financial hardship can happen soon after cancer treatment begins
To assemble a nationally representative group of participants, the study enrolled patients who were receiving care for metastatic colorectal cancer through the NCI Community Oncology Research Program (NCORP). This program brings cancer clinical trials and cancer care delivery studies, such as this one, to people in community hospitals and centers, where most people with cancer in the United States are treated.
Participants were enrolled between June 2016 and January 2019. They filled out questionnaires about their finances and quality of life within 4 months of their diagnosis and then every 3 months for a year.
Of the 380 patients in the study, 368 completed all the questionnaires. The median age was 60. Most patients (63%) were younger than 65 years old and were married or had a partner (58%), and 57% had a household income of $50 ,000 or less per year.
Overall, about 71% of participants reported experiencing financial hardship within 12 months of beginning treatment. The researchers defined “major financial hardship” as having at least one of the following: accumulating debt of any amount, borrowing money from family and/or friends, selling or refinancing a home, or a 20% or more decline in personal income.
|New debt||At least 20% income decline||New loans||Refinanced home||Sold home|
The researchers had expected to find that certain characteristics might put people at greater risk of financial hardship than others. But the data did not support that idea.
“We suspected that younger, unmarried, and patients in historically underserved populations might have a greater chance of experiencing financial hardship, but we did not see that association in this study per se,” said Dr. Shankaran.
Participants with annual household incomes of less than $100,000 and those with total assets of less than $100,000 were more likely to experience hardship, compared with participants with higher income and assets, the researchers found.
Previous studies have estimated that approximately 25% to 50% of cancer survivors face financial hardship, though the definition of financial hardship may have varied across studies.
Prior studies may have underestimated “the incidence and prevalence of financial hardship by not including patients with advanced disease and those on chronic therapy,” Dr. Shankaran and her colleagues wrote.
In the current study, patients who experienced major financial hardship in the first 3 months of the study were more likely to report lower overall quality-of-life scores on their 6-month questionnaires.
This finding adds to growing evidence about the harmful effects of financial hardship, including changes to quality of life, noted the authors of the editorial. Previous studies have found that patients experiencing financial distress have reported lower quality-of-life scores as well as more symptoms and more pain than patients who were not facing financial challenges.
Larger studies that follow patients over time are needed to understand how financial distress affects the quality of life in patients with advanced cancer, noted the authors of a recent study on this topic.
Connecting patients who have financial problems with support services
Financial issues have often been looked at largely as a long-term problem. But the new research highlights just how soon after a diagnosis of cancer the financial problems can begin. And the cumulative incidence of financial problems increases over time, the researchers found.
Screening for financial hardship should start when a person is diagnosed with cancer, noted Dr. de Moor. And screening should be repeated periodically to identify those who experience financial hardship during treatment and survivorship care, she continued.
“Health care providers need to proactively communicate with patients about the cost of cancer treatment, other expenses associated with undergoing treatment, and potential disruptions to their employment,” Dr. de Moor said. The goal is to take steps to minimize financial hardship among patients and their families, she added.
Many oncologists and practices, including many practices participating in NCORP, use a lack of health insurance at a single visit to screen patients who may be at risk of financial difficulties, the authors of the editorial noted. But this approach would have missed nearly all the patients in the current study who went on to experience financial hardship.
Resources may be available for some people at risk of financial hardship, noted Dr. Shankaran, including assistance from foundations, pharmaceutical companies, and organizations that match patients with support services.
“Clinics need to connect patients at risk for financial hardship with support services to ensure that patients get the care they need,” she said.
Motivated patients shared personal financial information
The current study focused on patients with metastatic colorectal cancer, but financial hardship is likely to be an issue for patients with other advanced cancers as well, the researchers noted.
“If you look at financial hardship in patients with lung cancer or breast cancer—diseases where people go on treatments and stay on them—you would probably see a similar story,” said Dr. Shankaran.
Patients with metastatic colorectal cancer who survive beyond the 12-month study period could experience “further financial deterioration,” the study authors cautioned. Future studies, they noted, should focus on financial issues at the end of a patient’s life, when the aggressive use of treatments may lead to further financial deterioration.
As a next step in the research, Dr. Shankaran and her SWOG colleagues recently launched a clinical trial to evaluate whether financial counseling can help ease financial hardship for patients with cancer.
An overarching goal of the current study was to test the feasibility of collecting financial information from patients for research.
Some of the investigators and staff at the participating NCORP sites initially had doubts that people would be willing to share personal financial information with investigators. As it turned out, the study enrolled patients more quickly than expected.
“The willingness of patients to share their information and experiences indicates that they felt the research was important and worth their time—even when they were undergoing cancer treatment,” said Dr. Shankaran.
“They were motivated to participate in the research,” she continued, “and that bodes well for future studies of financial hardship."