Cancer Patients Want More Information From Doctors About Cost

worried couple sort through paperwork at desk

A study led by researchers from University of Michigan has found that many cancer patients would like more help from their health care providers in addressing costs of treatment. The study involved more than 3,000 people who answered a survey, including 2,502 women with early-stage breast cancer, 370 surgeons, 306 medical oncologists, and 169 radiation oncologists. The study was published online July 23, 2018 in Cancer, a peer-reviewed journal published by the American Cancer Society.

Cancer takes a financial toll on many patients, even if they have health insurance, due to out-of-pocket costs and copays for treatment and other medications, and sometimes due to loss of work hours or gaps in employment. Previous studies have shown people with cancer have an increased rate of bankruptcy filings. Financial problems are linked to higher overall distress, lower health-related quality of life, and lower satisfaction with cancer care.

To find participants for the current study, researchers searched the Surveillance, Epidemiology, and End Results (SEER) database provided by the National Cancer Institute (NCI). Questionnaires for the participants’ health care providers asked how often they discuss the financial burden of treatment with their patients, their level of awareness of the out-of-pocket costs of tests and treatments they recommend, and how important they think it is to try to save their patients money. Questionnaires for patients asked about financial and employment status changes since being diagnosed, how much cost-related help they received from their health care team, and whether they continue to have unmet financial needs. Researchers also evaluated whether age, race, and ethnicity played a factor.

Results showed providers and patients have different perceptions about how often these financial discussions are taking place.

Among the findings: providers

  • 50.9% of medical oncologists, 43.2% of radiation oncologists, and 15.6% of surgeons said that someone in their practice often or always discusses finances with patients.
  • 40% of medical oncologists, 34.3% of radiation oncologists, and 27.3% of surgeons said they were very aware or quite aware of the out-of-pocket costs of the tests and treatments they recommend.
  • 57% of medical oncologists, 55.8% of radiation oncologists, and 35.3% of surgeons said it was quite important or extremely important to save their patients money.

Among the findings: patients

  • 58.9% of black patients, 33.5% of Latina patients, 28.8% of Asian patients, and 27.1% of white patients reported having debt from treatment costs.
  • Overall, 14% of patients reported lost income that totaled 10% or more of their household income.
  • Overall, 17% of patients reported spending 10% or more of their household income on out-of-pocket medical expenses.
  • 45.2% of black patients, 35.8% of Latina patients, 22.5% of Asian patients, and 21.5% of white patients reported cutting back on food spending to pay for cancer treatment. Some patients also reported having their utilities cut off, or even losing their homes.
  • 49.7% of Latina patients, 48.9% of black patients, 35.2% of Asian patients, and 31.9% of white patients were at least somewhat worried about finances as a result of cancer or its treatment. Of those being worried, 72.8% said they did not get at least some help from their health care providers.
  • 31.1% of black patients, 30.3% of Latina patients, 25.4% of Asian patients, and 15.2% of white patients said they at least somewhat wanted to talk to their health care providers about the impact of breast cancer on their employment or finances. Of those, 55.4% reported they had not had a cost-related discussion with a health care provider.

Starting the conversation

The study authors note that financial problems associated with cancer treatment continue to be common and emphasize the need for meaningful cost-related discussions between patients and providers. They suggest several approaches to address the problem, including training for health care providers about having effective conversations with patients about cancer costs in ways that are sensitive to cultural differences and needs. They also suggest using advanced interactive technology tools to evaluate patients’ financial concerns and alert providers to their needs.

The American Cancer Society recommends patients learn as much as possible about their cancer and cancer treatment before it starts, including any medical expenses and how their diagnosis may affect work and income If this seems like too much to handle, patients can ask a friend or family member to help them track costs, and to go along to medical appointments and help with these discussions.

Some ways to bring up the subject of cost as cancer treatment is being planned include:

  • I’m worried about how much cancer treatment is going to cost me. Can we talk about it?
  • Will my health insurance pay for this treatment? How much will I have to pay myself?
  • I know this will be expensive. Where can I get an idea of the total cost of the treatment we’ve talked about?

Read more from the American Cancer Society about finding and paying for treatment, or call us at 1-800-227-2345.

The American Cancer Society medical and editorial content team

Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Unmet Need for Clinician Engagement Regarding Financial Toxicity After Diagnosis of Breast Cancer. Published July 23, 2018 in Cancer. First author Reshma Jagsi, MD, DPhil, University of Michigan, Ann Arbor, MI.


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