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Grantee: Lauren Hamel, PhD
Institution: Wayne State University of Medicine/Karmanos Cancer Institute in Detroit
Area of Focus: Cancer Control and Prevention Research
Grant Term: 9/1/2020 to 8/31/2025
“The costs of cancer treatment can lead to financial toxicity for patients. This may mean patients and their families can no longer pay for their living expenses and keep up with recommended care at the same time, or it could be severe or extreme levels of psychological distress, or both. It can have a devastating effect on a patient’s family for years after treatment ends.
"Research has shown that certain groups of people are more at risk for experiencing financial toxicity: African American/Black populations, people with limited incomes, and those younger than age 65. We developed the DISCO app to help decrease that risk for such patients in Detroit. Our goal is to prompt high-quality and timely discussions about costs between oncologists and patients and to improve patient knowledge and self-efficacy surrounding treatment costs. We also want to increase referrals to social workers and financial navigators, who can help cancer patients better predict and manage the costs of their care.”—Lauren Hamel, PhD
The Challenge: Financial toxicity describes the problems a patient can have related to the costs of medical care. It’s also referred to as the economic burden of cancer.
People who don’t have health insurance or who owe a lot for medical care that wasn’t covered by health insurance can end up in debt and even bankrupt. But health insurance doesn’t necessarily shield patients from experiencing financial toxicity, which can also result from indirect costs, like loss of income or costs to travel to treatment. But the problems go beyond the dollars a patient’s family has to spend.
The costs of financial toxicity can also be psychological, affecting mental health and quality of life. Unaffordable care can keep patients from taking prescription medicines or avoid seeing a doctor. It can even increase the chances of dying.
Cancer patients are more likely to have financial toxicity than people without cancer and are almost 3 times more likely to file for bankruptcy. And the risk of the problem doesn’t end when treatment does.
The burden of financial toxicity is a health equity issue. Some people are more likely than others to be affected by the high costs of cancer treatment. These include people with cancer who:
Even though the problem is very common, research shows that doctors and patients rarely talk about the costs of care.
The Research: American Cancer Society (ACS) research grantee, Lauren Hamel, PhD, has developed an app called DISCO, which stands for DIScussions of COst. It’s designed to prompt high-quality and timely discussions about the costs of cancer care between patients and their doctors. She and her team developed it in collaboration with cancer survivors, doctors, social workers, and a software development firm and pilot-tested it in 2 outpatient cancer clinics.
Now she’s recruiting up to 240 to 260 men and women who are receiving systemic therapy for breast, colorectal, lung, ovarian, or prostate cancers at Karmanos Cancer Institute in Detroit to test the app in a randomized clinical trial. All patients will see 1 of 15 participating medical oncologists or nurse practitioners, who will receive a brochure with communication tips to prepare them for treatment cost discussions with patients.
Using 3 study groups, the trial will compare a patient’s belief in their ability to (self-efficacy) manage both medical costs and interactions with their oncologist and how that self-efficacy affects their ability to avoid financial toxicity and stick with recommended treatment. They’ll also compare referrals given by the clinicians for support from social workers and financial navigators and patients’ follow-through on those referrals.
Each group will have a balanced number of people based on sex, age, income, and race.
In all 3 groups, all patients take a survey before the first appointment with their oncologist. Up to 2 of their meetings with their oncologist will be video recorded. After the recorded visits, both patients and clinicians complete a short survey about how the meeting went. Patients also receive surveys at 3, 6, and 12 months after their last video-recorded meeting.
Group 1 will receive the usual care.
Group 2 will receive an iPad with the DISCO app on it before their appointment. The app includes a short video about treatment costs, ways to manage them, and the importance of discussing treatment costs with the oncologist. Then the patient answers questions on the app about their financial concerns. Based on their answers, the app delivers a customized list of up to 18 cost-related questions for the patient to ask the doctor. Patients can take the iPad or a printed list of questions into their appointment. The survey after the appointment will include questions about what the patient thought about the app.
Group 3 will receive an iPad with the DISCO app like Group 2, and they’ll also receive a “booster.” The booster is a follow-up communication with the patient 2 months after the appointment, reminding them about the information presented on the app.
Hamel and her team hypothesize that patients who are most likely to experience financial toxicity—African American/Black people, people with low-income, and people younger than age 65—will gain the most benefits from the DISCO app.
Results of the study are expected in 2025.
Why Does It Matter? A major contributor the burden of financial toxicity is patients’ lack of awareness of potential costs during treatment and after it. They’re often unprepared for what out-of-pocket costs they may incur. Discussions between cancer patients and their cancer providers could improve their knowledge about the costs to anticipate and prompt referrals to helpful financial resources.
Plus, research on interactions between doctors and patients shows that short-, intermediate-, and long-term outcomes are affected by how a patient participates in doctor visits, such as by asking questions, expressing concerns, and making their needs known.
Cost of appointments and treatments
Help with understanding my treatment costs and what my insurance covers
Transportation to and parking at the cancer center
Living far from the cancer center
Working during treatment
Active patients influence the amount of information doctors offer, including decisions about treatment. How active a patient is in his or her cancer care also affects their psychological and physical health.
If the clinical trial shows the DISCO app helps reduce financial toxicity in diverse populations, Hamel’s team will share the app across the Karmanos Cancer Institute’s out-patient clinics across the state of Michigan.