ASCO Education Interventions to Reduce Financial Toxicity in Breast Cancer
Dr. Hope Rugo and Dr. Kamaria Lee discuss the prevalence of financial toxicity in cancer care in the United States and globally, focusing on breast cancer, and highlight key interventions to mitigate financial hardship.
TRANSCRIPT
Dr. Hope Rugo: Hello, and welcome to By the Book, a podcast series from ASCO that features engaging conversations between editors and authors of the ASCO Educational Book. I'm your host, Dr. Hope Rugo. I'm the director of the Women's Cancer Program and division chief of breast medical oncology at the City of Hope Cancer Center, and I'm also the editor-in-chief of the Educational Book.
Rising healthcare costs are causing financial distress for patients and their families across the globe. Patients with cancer report financial toxicity as a major impediment to their quality of life, and its association with worse outcomes is well documented. Today, we'll be discussing how patients with breast cancer are uniquely at risk for financial toxicity. Joining me for this discussion is Dr. Kamaria Lee, a fourth-year radiation oncology resident and health equity researcher at MD Anderson Cancer Center and a co-author of the recently published article titled, "Financial Toxicity in Breast Cancer: Why Does It Matter, Who Is at Risk, and How Do We Intervene?"
Our full disclosures are available in the transcript of this episode.
Dr. Lee, it's great to have you on this podcast.
Dr. Kamaria Lee: Hey, Dr. Rugo. Thank you so much for having me. I'm excited to be here today. I also would like to recognize my co-authors, Dr. Alexandru Eniu, Dr. Christopher Booth, Molly MacDonald, and Dr. Fumiko Chino, who worked on this book chapter with me and did a fantastic presentation on the topic at ASCO this past year.
Dr. Hope Rugo: Thanks very much. We'll now just jump into the questions. We know that rising medical costs contribute to a growing financial burden on patients, which has [GC1] [JG2] been documented to contribute to lower quality-of-life, compromised clinical care, and worse health outcomes. How are patients with breast cancer uniquely at risk for financial toxicity? How does the problem vary within the breast cancer population in terms of age, racial and ethnic groups, and those who have metastatic disease?
Dr. Kamaria Lee: Breast cancer patients are uniquely at risk of financial toxicity for several reasons. Three key reasons are that breast cancer often requires multimodal treatment. So this means patients are receiving surgery, many receive systemic therapies, including hormonal therapies, as well as radiation. And so this requires care coordination and multiple visits that can increase costs.
Secondly, another key reason that patients with breast cancer are uniquely at risk for financial toxicity is that there's often a long survivorship period that includes long-term care for toxicities and continued follow-ups, and patients might also be involved in activities regarding advocacy, but also physical therapy and mental health appointments during their prolonged survivorship, which can also add costs.
And a third key reason that patients with breast cancer are uniquely at risk for financial toxicity is that the patient population is primarily women. And we know that women are more likely to have increased caregiver responsibilities while also potentially working and managing their treatments, and so this is another contributor.
Within the breast cancer population, those who are younger and those who are from marginalized racial/ethnic groups and those with metastatic disease have been shown to be at an increased risk. Those who are younger may be more likely to need childcare during treatment if they have kids, or they're more likely to be employed and not yet retired, which can be disrupted while receiving treatment. And those who are racial/ethnic minorities may have increased financial toxicity due to reasons that exist even after controlling for socioeconomic factors. And some of these reasons have been shown to be increased risk of job or income loss or transportation barriers during treatment. And lastly, for those with metastatic breast cancer, there can be ongoing financial distress due to the long-term care that is needed for treatment, and this can include parking, transportation, and medications while managing their metastatic disease.
Dr. Hope Rugo: I think it is really important to understand these issues as you just outlined. There has been a lot of focus on financial toxicity research in recent years, and that has led to novel approaches in screening for financial hardship. Can you tell us about the new screening tools and interventions and how you can easily apply that to clinical practice, keeping in mind that people aren't at MD Anderson with a bunch of support and information on this but are in clinical practice and seeing many, many patients a day with lots of different cancers?
Dr. Kamaria Lee: You're exactly right that there is incredible nuance needed in understanding how to best screen for financial hardship in different types of practices. There are multiple financial toxicity tools. The most commonly used tool is the Comprehensive Score for Financial Toxicity, also known as the COST tool. In its full form, it's an 11-item survey. There's also a summary question as well. And these questions look at objective and subjective financial burden, and it uses a five-point Likert scale. For example, one question on the full form is, "I know that I have enough money in savings, retirement, or assets to cover the cost of my treatment," and then patients are able to respond "not at all" to "very much" with a threshold score for financial toxicity risk.
Of course, as you noted, one critique of having an 11-item survey is that there's limited time in patient encounters with their providers. And so recently, Thom et al validated an abbreviated two-question version of the COST tool. This validation was done in an urban comprehensive cancer center, and it was found to have a high predictive value to the full measure. We note which two questions are specifically pulled from the full measure within the book chapter. And this is one way that it can be easier for clinicians who are in a busier setting to still screen for financial toxicity with fewer questions.
I also do recommend that clinicians who know their clinic's workflow the best, work with their team of nurses, financial navigators, and others to best integrate the tool into their workflow. For some, this may mean sending the two-item survey as a portal message so that patients can answer it before consults. Other times, it could mean having it on the tablet that can be done in the clinic waiting room. And so there are different ways that screening can be done, even in a busy setting, and acknowledging that different practices have different amounts of resources and time.
Dr. Hope Rugo: And where would people access that easily? I recognize that that information is in your chapter, or your article that's on PubMed that will be linked to this podcast, but it is nice to just know where people could easily access that online.
Dr. Kamaria Lee: Yes, and so you should be able to Google ‘the COST measure’, and then there is a website that also has the forms as well. So it's also beyond the book chapter, Googling ‘the COST measure’, and then online they would be able to find access to the form.
Dr. Hope Rugo: And how often would you do that screening?
Dr. Kamaria Lee: So, I think it's definitely important that we are as proactive as possible. And so initially, I recommend that the screening happens at the time of diagnosis, and so if it's done through the portal, it can be sent before the initial consult, or again, however, is best in the workflow. So at the time of diagnosis and then at regular intervals, so throughout the treatment process, but then also into the follow-up period as well to best understand if there's still a financial burden even after the treatments have been completed.
Dr. Hope Rugo: I wonder if in the metastatic setting, you could do it at the change of treatment, you know, a month after somebody's changed treatment, because people may not be as aware of the financial constraints when they first get prescribed a drug. It's more when you hear back from how much it's going to cost. And leading into that, I think it's, what do you do with this? So, you know, this cost conversation is really important. You're going to be talking to the patient about the cost considerations when you, for example, see that there are financial issues, you're prescribing treatments. How do we implement impactful structured cost conversations with our breast cancer patients, help identify financial issues, and intervene? How do we intervene? I mean, as physicians often we aren't really all that aware, or providers, of how to address the cost.
Dr. Kamaria Lee: Yes, I agree fully that another key time when to screen for financial toxicity is at that transition between treatments to best understand where they're at based off of what they've received previously for care, and then to anticipate needs when changing regimens, such as like you said in the metastatic setting. As we're collecting this information, you're right, we screen, we get this information, and what do we do? I do agree that there is a lack of knowledge among us clinicians of how do we manage this information. What is insurance? How do we manage insurance and help patients with insurance concerns? How do we help them navigate out-of-pocket costs or even the indirect costs of transportation? Those are a lot of things that are not covered in-depth in traditional medical training. And so it can be overwhelming for a lot of clinicians, not only due to time limitations in clinic, but also just having those conversations within their visit.
And so what I would say, a key thing to note, is that this is another area for multidisciplinary care. So just as we're treating patients in a multidisciplinary way within oncology as we work with our medical oncology, surgical colleagues across the board, it's knowing that this is another area for multidisciplinary care. So the team members include all of the different oncologists, but it also includes team members such as financial counselors and navigators and social workers and even understanding nonprofit partners who we have who have money that can be set aside to help reduce costs for certain different aspects of treatment.
Another thing I will note is that most patients with breast cancer often say they do want to have these conversations still with their clinicians. So they do still see a clinician as someone that can weigh in on the costs of their treatment or can weigh in on this other aspect of their care, even if it's not the actual medication or the radiation. And so patients do desire to hear from their clinicians about this topic, and so I think another way to make it feel less overwhelming for clinicians like ourselves is to know that even small conversations are helpful and then being knowledgeable about within your institution or, like I said, outside of it with nonprofits, being aware of who can I refer this patient to for continued follow-up and for more detailed information and resources.
Dr. Hope Rugo: Are those the successful interventions? It's really referring to financial navigators? How do people identify? You know, in an academic center, we often will sort of punt this to social workers or our nurse navigators. What about in the community? What's a successful intervention example of mitigating financial toxicity?
Dr. Kamaria Lee: I agree completely that the context at which people are practicing is important to note. So as you alluded to, in some bigger systems, we do have financial navigators and this has been seen to be successful in providing applications and assisting with applications for things such as pharmaceutical assistance, insurance applications, discount opportunities.
Another successful intervention are financial toxicity tumor boards, which I acknowledge might not be able to exist everywhere. But where this is possible, multidisciplinary tumor boards that include both doctors and nurses and social workers and any other members of the care team have been able to effectively decrease patients' personal spending on care costs and decrease co-pays through having a dedicated time to discuss concerns as they arise or even proactively.
Otherwise, I think in the community, there are other interventions in regards to understanding different aspects of government programs that might be available for patients that are not, you know, limited to an institution, but that are more nationally available, and then again, also having the nonprofit, you know, partnerships to see other resources that patients can have access to.
And then I would also say that the indirect costs are a significant burden for many patients. So by that, I mean even parking costs, transportation, childcare. And so even though those aren't interventions necessarily with someone who is a financial navigator, I would recommend that even if it's a community practice, they discuss ways that they can help offset those indirect costs with patients with parking or if there are ways to help offset transportation costs or at least educate patients on other centers that may be closer to them or they can still receive wonderful care, and then also making sure that patients are able to even have appointments scheduled in ways that are easier for them financially.
So even if someone's receiving care out in the community where there's not a financial navigator, as clinicians or our scheduling teams, sometimes there are options to make sure if a patient wants, visits are more so on one day than throughout the week or many hours apart that can really cause loss of income due to missed work. And so there are also kind of more nuanced interventions that can happen even without a financial navigation system in place.
Dr. Hope Rugo: I think that those are really good points and it is interesting when you think about financial toxicity. I mean, we worry a lot when patients can't take the drugs because they can't afford them, but there are obviously many other non-treatment, direct treatment-related issues that come up like the parking, childcare, tolls, you know, having a working car, all those kinds of things, and the unexpected things like school is out or something like that that really play a big role where they don't have alternatives.
And I think that if we think about just drug costs, I think those are a big issue in the global setting. And your article did address financial toxicity in the global setting. International financial toxicity rates range from 25% of patients with breast cancer in high-income countries to nearly 80% in low- and middle-income countries or LMICs. You had cited a recent meta-analysis of the global burnout from cancer, and that article found that over half of patients faced catastrophic health expenditures. And of course, I travel internationally and have a lot of colleagues who are working in oncology in many countries, and it is really often kind of shocking from our perspective to see what people can get coverage for and how much they have to pay out-of-pocket and how much that changes, that causes a lot of disparity in access to healthcare options, even those that improve survival. Can you comment on the global impact of this problem?
Dr. Kamaria Lee: I am glad that you brought this up for discussion as well. Financial toxicity is something that is a significant global issue. As you mentioned, as high as 80% of patients with breast cancer in low- and middle-income countries have had significant financial toxicity. And it's particularly notable that even when looking at breast cancer compared to other malignancies around the world, the burden appears to be worse. This has been seen even in countries with free universal healthcare. One example is Sri Lanka, where they saw high financial toxicity for their patients with breast cancer, even with this free universal healthcare. But there were also those travel costs and just additional out-of-hospital tests that were not covered. Also, literature in low- and middle-income countries shows that patients might also be borrowing money from their social networks, so from their family and their friends, to help cover their treatment costs, and in some cases, people are making daily food compromises to help offset the cost of their care. So there is a really large burden of financial toxicity generally for cancer globally, but also specifically in breast cancer, it warrants specific discussion.
In the meta-analysis that you mentioned, they identified key risk factors of financial toxicity globally that included people who had a larger family size, a lower income, a lack of insurance, longer disease duration, so again, the accumulation of visits and costs and co-pay over time, and those who had multiple treatments. And so in the global setting, there is this significant burden, but then I will also note that there is a lack of literature in low-income countries on financial toxicity. So where we suspect that there is a higher burden and where we need to better understand how it's distributed and what interventions can be applied, especially culturally specific interventions for each country and community, there's less research on this topic. So there is definitely an increased need for research in financial toxicity, particularly in the global setting.
Dr. Hope Rugo: Yes, and I think that goes on to how we hope that financial toxicity researchers will have approaches to large-scale multi-institutional interventions to improve financial toxicity. I think this is an enormous challenge, but one of the SWOG organizations has done some great work in this area, and a randomized trial addressing cancer-related financial hardship through the delivery of a proactive financial navigation intervention is one area that SWOG has focused on, which I think is really interesting. Of course, that's going to be US-based, which is how we might find our best paths starting. Do you think that's a good path forward, maybe that being able to provide something like that across institutions that are independent of being a cancer only academic center, or more general academic center, or a community practice? You know, is finding ways to help patients with breast cancer and their families understand and better manage financial aspects of cancer care on a national basis the next approach?
Dr. Kamaria Lee: Yes, I agree that that is a good approach, and I think the proactive component is also key. We know that patients that are coming to us with any cancer, but including breast cancer, some of them have already experienced a financial burden or have recently had a job loss before even coming to us and having the added distress of our direct costs and our indirect costs. So I think being proactive when they come to us in regards to the additional burden that their cancer treatments may cause is key to try to get ahead of things as much as we can, knowing that even before they've seen us, there might be many financial concerns that they've been navigating.
I think at the national level, that allows us to try to understand things at what might be a higher level of evidence and make sure that we're able to address this for a diverse cohort of patients. I know that sometimes the enrollment can be challenging at the national level when looking at financial toxicity, as then we're involving many different types of financial navigation partners and programs, and so that can maybe make it more complex to understand the best approaches, but I think that it can be done and can really bring our understanding of important financial toxicity interventions to the next level. And then the benefit to families with the proactive component is just allowing them to feel more informed, which can help decrease anticipation, anxiety related to anticipation, and allow them to help plan things moving forward for themselves and for the whole family.
Dr. Hope Rugo: Those are really good points and I wonder, I was just thinking as you were talking, that having some kind of a process where you could attach to the electronic health record, you could click on the financial toxicity survey questions that somebody filled out, and then there would be a drop-down menu for interventions or connecting you to people within your clinic or even more broadly that would be potential approaches to manage that toxicity issue so that it doesn't impact care, you know, that people aren't going to decide not to take their medication or not to come in or not to get their labs because of the cost or the transportation or the home care issues that often are a big problem, even parking, as you pointed out, at the cancer center. And actually, we had a philanthropic donor when I was at UCSF who donated a large sum of money for patient assistance, and it was interesting to then have these sequential meetings with all the stakeholders to try and decide how you would use that money. You need a big program, you need to have a way of assessing the things you can intervene with, which is really tough.
In that general vein, you know, what are the governmental, institutional, and provider-level actions that are required to help clinicians do our best to do no financial harm, given the fact that we're prescribing really expensive drugs that require a lot of visits when caring for our patients with breast cancer in the curative and in the metastatic setting?
Dr. Kamaria Lee: At the governmental level, there are patient assistant programs that do exist, and I think that those can continue and can become more robust. But I also think one element of those is oftentimes the programs that we have at the government level or even institutional levels might have a lot of paperwork or be harder for people with lower literacy levels to complete. And so I think the government can really try to make sure that the paperwork that is given, within reason, with all the information they need, but that the paperwork can be minimized and that there can be clear instructions, as well as increased health insurance options and, you know, medical debt forgiveness as more broad just overall interventions that are needed.
I think additionally, institutions that have clinical trials can help ensure that enrollment can be at geographically diverse locations. Some trials do reimburse for travel costs, of course, but sometimes then patients need the reimbursement sooner than it comes. And so I think there's also those considerations of more so upfront funds for patients involved in clinical trials if they're going to have to travel far to be enrolled in that type of care or trying to, again, make clinical trials more available at diverse locations.
I would also say that it's important that those who design clinical trials use what is known as the “Common Sense Oncology” approach of making sure that they're designed in minimizing the use of outcomes that might have a smaller clinical benefit but may have a high financial toxicity. And that also goes to what providers can do, of understanding what's most important to a particular patient in front of them, what outcomes and what benefit, or you know, how many additional months of progression-free survival or things like that might be important to a particular patient and then also educating them and discussing what the associated financial burden is just so that they have the full picture as they make an informed decision.
Dr. Hope Rugo: As much as we know. I mean, I think that that's one of the big challenges is that as we prescribe these expensive drugs and often require multiple visits, even, you know, really outside of the clinical trial setting, trying to balance the benefit versus the financial toxicity can be a huge challenge. And that's a big area, I think, that we still need help with, you know. As we have more drugs approved in the early-stage setting and treatments that could be expensive, oral medications, for example, in our Medicare population where the share of cost may be substantial upfront, you know, with an upfront cost, how do we balance the benefits versus the risk? And I think you make an important point that discussing this individually with patients after we found out what the cost is. I think warning patients about the potential for large out-of-pocket cost and asking them to contact us when they know is one way around this. You know, patients feeling like they're sort of out there with a prescription, a recommendation from their doctor, they're scared of their cancer, and they have this huge share of cost that we didn't know about. That's one challenge, and I don't know if there's any suggestions you have about how one should approach that communication with the patient.
Dr. Kamaria Lee: Yes, I think part of it is truly looking at each patient as an individual and asking how much they want to know, right? So we all know that patients, some who want more information, some want less, and so I think one way to approach that is asking them about how much information do they want to know, what is most helpful to them. And then also, knowing that if you're in a well-resourced setting that does have the social workers and financial navigators, also making sure it's integrated in the multidisciplinary setting and so that they know who they can go to for what, but also know that as a clinician, you're always happy for them to bring up their concerns and that if it's something that you're not aware of, that you will connect them to the correct multidisciplinary team members who can accurately provide that additional information.
Dr. Hope Rugo: Do you have any other additional comments that you'd like to mention that we haven't covered? I think the idea of a financial toxicity screen with two questions that could be implemented at change of therapy or just periodically throughout the course of treatment would be a really great thing, but I think we do need as much information on potential interventions as possible because that's really what challenges people. It's like finding out information that you can't handle. Your article provides a lot of strategies there, which I think are great and can be discussed on a practice and institutional level and applied.
Dr. Kamaria Lee: Yeah, I would just like to thank you for the opportunity to discuss such an important topic within oncology and specifically for our patients with breast cancer. I agree that it can feel overwhelming, both for clinicians and patients, to navigate this topic that many of us are not as familiar with, but I would just say that the area of financial toxicity is continuing to evolve as we gather more information on most successful interventions and that our patients can often inform us on, you know, what interventions are most needed as we see them. And so you can have your thinking about it as you see individual patients of, "This person mentioned this could be more useful to them." And so I think also learning from our patients in this space that can seem overwhelming and that maybe we weren't all trained on in medical school to best understand how to approach it and how to give our patients the best care, not just medically, but also financially.
Dr. Hope Rugo: Thank you, Dr. Lee, for sharing your insights with us today. Our listeners will find a link, as I mentioned earlier, to the Ed Book article we discussed today in the transcript of this episode. I think it's very useful, a useful resource, and not just for providers, but for clinic staff overall. I think this can be of great value and help open the discussion as well.
Dr. Kamaria Lee: Thank you so much, Dr. Rugo.
Dr. Hope Rugo: And thanks to our listeners for joining us today. Please join us again next month on By the Book for more insightful views on topics you'll be hearing at Education Sessions from ASCO meetings and our deep dives into new approaches that are shaping modern oncology. Thank you.
Disclaimer:
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
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Disclosures:
Dr. Hope Rugo:
Honoraria: Mylan/Viatris, Chugai Pharma
Consulting/Advisory Role: Napo Pharmaceuticals, Sanofi, Bristol Myer
Research Funding (Inst.): OBI Pharma, Pfizer, Novartis, Lilly, Merck, Daiichi Sankyo, AstraZeneca, Gilead Sciences, Hoffman La-Roche AG/Genentech, In., Stemline Therapeutics, Ambryx
Dr. Kamaria Lee: No relationships to disclose