People with cancer want financial toxicity discussions ‘very early and very often’
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Individuals with cancer expressed a preference for early and frequent provider-initiated discussions about financial toxicity, according to study findings.
Researchers sent anonymous surveys to 5,774 people who subscribed by email to the Pink Fund, a nonprofit charity that offers financial assistance to people undergoing treatment for breast cancer.
The survey inquired about patient’s preferences regarding financial toxicity screening.
The analysis included responses from 738 people (median age, 50 years; 93% women), 93% of whom had a breast cancer diagnosis. About half (54%) were undergoing treatment at the time of the survey.
A majority of respondents indicated they had not been asked about financial burden by their care team (58%) and had not received help with these issues from their care team (68%).
Most respondents indicated they would prefer providers to initiate conversations about financial needs (83%). They also expressed a desire for financial discussions to occur early, with 45% preferring the topic be addressed at diagnosis and 37% preferring a discussion upon treatment selection but before treatment starts.
Survey respondents also stated they wanted to be asked often about financial stressors, with 42% preferring to be asked at each appointment and 36% wishing to be asked once a month.
“These findings might not be what most doctors would expect. They aren’t what I expected,” Laila A. Gharzai, MD, assistant professor of radiation oncology at Northwestern University’s Feinberg School of Medicine, told Healio. “I often see patients when they are first diagnosed with cancer. These appointments involve taking in so much information at once — it’s overwhelming. The fact that these patients also want to discuss financial concerns at this point was surprising.”
Healio spoke with Gharzai about the implications of the findings and the steps members of the oncology care team can take to help address patients’ concerns about financial toxicity.
Healio: What is your sense of the impact financial toxicity has on people with cancer?
Gharzai: Over the past 10 years, we’ve begun to understand how deeply financial toxicity affects patients’ lives and cancer care. We used to think of financial toxicity only in terms of direct costs. Now we’re appreciating indirect costs, like the money a patient loses when they miss work or when they have no one to watch their kids. We’re also starting to understand that financial toxicity can affect the way a patient adheres to their medication. For example, if they have a bottle of very expensive medication, patients might take the medication only once a day instead of twice a day, as prescribed, to make it last longer. This might make treatment less effective. We’re learning that these indirect costs also add up.
Healio: Why did you want to conduct this study?
Gharzai: We recently published a systematic review evaluating instruments that we could use to measure financial toxicity for patients. Our review basically showed there is no consensus. We don’t know what measures we should be using, or how often we should be asking these questions. After we did that study, I said, “I’m curious what patients think.” We wanted to find out, and we wanted to learn how we could potentially use this information to guide our next steps.
Healio: How did you conduct the study?
Gharzai: This study was a partnership with the Pink Fund, an organization that focuses on mitigating financial toxicity for patients with breast cancer who are actively undergoing treatment. We designed the survey to be done electronically. The Pink Fund fielded it and sent it to their email subscribers. We were focusing mainly on people who had undergone cancer treatment.
Healio: What did you find?
Gharzai: People overwhelmingly wanted their providers to initiate the conversation about financial toxicity screening. They want their care team to reach out and ask them if they needed help. They want these discussions very early and very often. They want this to happen before starting treatment, and they want these questions to be asked either at every single appointment or once a month. That is quite different than what we’ve been doing, which is normally just a one-time [assessment] after the patient has already started treatment.
Healio: What did your survey show in terms of patient preferences for discussions about financial stressors?
Gharzai: We gave them a list of providers in different roles, and we asked who they would prefer to talk to. Would they prefer a doctor, a nurse, a social worker? Overwhelmingly, the respondents said they would prefer some sort of patient navigator or social worker to help with these conversations. However, in a free text response we included in the survey, we had many patients say they would want to talk to anybody who could help them.
Healio: What are your next steps in research?
Gharzai: The next step is to figure out how to measure financial toxicity, and how we can identify patients who are having a lot of stress or hardship. Another area I am particularly interested in is looking at what I call “lower-touch” ways of helping patients with financial concerns. For example, many of our patients don’t understand what a deductible is or how their insurance works. Maybe we can help them make more efficient decisions by providing them with patient educational materials at the beginning of treatment. Patient health literacy is important and can help alleviate some of these financial concerns early on.
References:
- Gharzai LA, et al. JCO Oncol Pract. 2024;doi:10.1200/OP.24.00415.
- Gharzai LA, et al. JCO Oncol Pract. 2021;doi:10.1200/OP.21.00182.
- Northwestern Medicine. Cancer. And then paying for cancer treatment (press release). Available at: https://news.northwestern.edu/stories/2024/september/cancer-patients-want-financial-screening-early-in-care-study-finds.Published Sept. 17, 2024. Accessed Oct. 21, 2024.
- Pink Fund. Available at: https://pinkfund.org. Accessed Oct. 22, 2024.
For more information:
Laila A. Gharzai, MD, can be reached at laila.gharzai@northwestern.edu.
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