A Conversation With Laila Gharzai, M.D.

Laila Gharzai, M.D.

Laila Gharzai, M.D., a radiation oncologist and an assistant professor at the Northwestern University Feinberg School of Medicine, is a leading researcher on the topic of financial toxicity in cancer care. Most recently, she was the lead author of a study published in JCO Oncology Practice about findings from a survey of people with breast cancer about their financial toxicity screening preferences. Managing Editor Peter Wehrwein spoke with Gharzai about that research and financial toxicity in general.

This transcript has been edited for clarity and length.

I believe the term financial toxicity was coined about a decade ago, and it has entered the cancer care vernacular. But I think it gets used in a couple of different ways. Sometimes it’s used to describe a cause and effect in terms of people having difficulty affording care and having a consequence in terms of the course of their cancer. But it is also used to describe just cost burden and having an effect on a patient’s finances. They have difficulty paying rent or making their mortgage payment. So what is financial toxicity?

You’re absolutely right that financial toxicity is just an incredibly confusing subject. I typically think of financial toxicity as being multifactorial, so there are a bunch of different components that go into it.

One is some of the stuff that you’re describing, which is true, direct costs. How much am I paying for this medication? But there are also indirect costs. How much time am I taking off work to be able to go to my radiation treatments?

And there’s a whole psychosocial component that goes into financial toxicity as well. So that’s things like behavior changes that you do to help cope with the fact that you don’t have enough money to pay for your cancer care, things like skipping a dose of your medications or trying to stretch out that last little bit of lotion that you need for some skin irritation as long
as possible.

There’s also true psychological distress — ruminating, being really concerned about, “How am I going to keep this roof over my head? Are my kids going to be homeless if I don’t pay my mortgage this month?”

And to me, it’s all of those components together that really generate this broader term called financial toxicity. So it’s not just the bill that comes into your mailbox. It’s not just, “Oh, I’m stressed.” It’s everything together that creates this whirlpool of despair that makes people so unable to deal with all the stresses of having cancer.

There is some evidence, isn’t there, that the degree of financial toxicity does translate into adverse effects on people’s cancer — that some of this major stress you’re talking about, but also less adherence to medication or maybe delays in care — alter outcomes.

You’re absolutely right. There is, unfortunately, a direct link between financial toxicity and things like overall quality of life, medication adherence, sometimes decision-making about what type of treatment to get. So for example, in breast cancer, there’s up to a third of women who actually prioritize cost over deciding what type of breast surgery they would like, whether it’s breast-conserving surgery or mastectomy. On top of that, there’s a direct link between financial hardship and the risk of bankruptcy, and bankruptcy has also been associated with mortality.

There are all these downstream cancer-related consequences that, you’re absolutely right, really impact cancer outcomes.

Let’s shift to your recently published paper. You ended up with 738 respondents with a confirmed breast cancer diagnosis and you asked them questions about whether they were asked about financial toxicity, did they want to be asked about financial toxicity and, if so, the timing. Could you share maybe two or three of your main findings?

It is a survey study specifically trying to understand this idea of, how do we screen for financial concerns or for financial toxicity? Our group had done some prior work looking at what was out there in terms of financial instruments and what other people are doing for financial screening. With our systematic review, we showed that there’s just wide heterogeneity. There’s no consensus on how often to screen. There’s no consensus on instruments. There’s actually no guidance on what we should be doing.

So we wanted to ask patients what they wanted. How often do they want us to ask them these types of questions? Were they ever asked these types of questions by their care team?

We partnered with a wonderful organization called the Pink Fund, which is a nationwide breast cancer-specific philanthropic organization that aims to offset financial toxicity by providing funding for patients who are actively undergoing breast cancer treatment. They fielded this survey electronically, and, like you said, we had over 700 respondents. We really focused on tangible questions that we can put into practice. How often do you want to be screened for your financial concerns? Do you want to initiate these conversations? Or do you want your providers to initiate these conversations? And when in your treatment course do you want these types of concerns to be brought up — after you’ve already decided what kind of treatment or even before?

We are able to show that patients want financial screening to happen really early in their treatment course — either right when they’re first diagnosed or as soon as they decide what kind of treatment they will be undergoing. They really wanted their providers to be the ones to initiate these conversations so that they could feel comfortable to then respond. And they wanted the conversations extremely often, either once a month or every single appointment when they were coming in and interacting with
their providers.

This is very different than what we’ve been doing. If you look at all the published literature, most of our screening is done at one single time point or maybe twice. It’s not something that we do longitudinally, and it’s also not something that we integrate very early on.

These patient voices can really tell us how we should start changing and what we should start doing differently to be able to incorporate patient voices better.

One finding that stood out for me is that a high percentage — 92% — wanted the financial toxicity screening and conversation to be held not with a doctor, not with a nurse, but with a social worker or a patient navigator, somebody like that. Why do you think that might be, and, of course, it does raise the question of how many oncology practices have
such a person.

Much of the literature shows that providers — physicians in particular — are actually poorly equipped to have these types of difficult conversations with our patients. We don’t necessarily know what resources to point them to. They’ll ask us a question about how much something is going to cost, or what their out-of-pocket costs might be, and many of us just kind of throw up our hands and say, “Not sure. We’ll have to call someone else.”

A lot of research studies in financial toxicity look at improving these types of provider-facing conversations or training physicians to be able to do a better job at fielding
patient questions.

This idea of bringing up financial concerns really early on when someone is first diagnosed replicates a finding from the study we did that involved interviewing breast cancer patients. Patients wanting to have these conversations really early was the most surprising finding for me, because as a clinician, as a radiation oncologist, I’m talking to them about the literature, I’m talking to them about the data. I’m asking them to make decisions. I’m going through all the [adverse] effects of treatment. Most patients are just not able to take in all of that, and then you’re asking us to add on a whole separate layer of the conversation. As a provider, it is something that I really struggle with in terms of, how do we do this in a way that doesn’t overwhelm patients? So, utilizing some of our ancillary providers, like our social workers or patient navigators, who are able to connect with patients at a different time point or in a separate sort of conversation after they’ve had some difficult conversations with their providers, potentially allows patients a little bit more in time to process, a little bit more time to separate this idea of treatment versus implications.

This can be an embarrassing topic for people. People do not like to talk about their financial situation. Maybe they also kind of prefer to have the conversation with somebody who’s not a doctor or a nurse?

There is some literature that shows that this is a potentially embarrassing topic. This is something that we’re not comfortable sharing. Think about just our salaries. How comfortable are you telling the person who works next to you exactly how much you make or what your bonus was? In our culture, in America in particular, we don’t share those types of things. So suddenly, having to say, “Oh my gosh, I don’t think that I can pay this surprise $500 bill” is something that can bring about a lot of shame and be very, very difficult for people to discuss.

One inference one might get from your study is that most people are not screened for financial toxicity. In your study, 58% of the respondents said they hadn’t been asked about financial stressors. Yet financial toxicity has been a topic of discussion for the better part of a decade. So we have all this conversation, and people doing studies, but in terms of what people actually experience, conversations about financial toxicity are not happening. So what should be done? How do you get this actually happening in everyday American health care?

When you screen cancer centers themselves, it seems like about three-quarters of centers will say, yes, we screen patients. But here we have this national sample that is significantly lower than that, and it’s a little bit confusing as to whether we’re seeing a difference between hospital A saying, yes, it screens, maybe not every single patient, but it has some system in place versus the individual patient [saying] whether or not they actually get screened.

There’s also a potential that some of what hospitals or cancer centers consider screening, patients aren’t realizing is actually some sort of screening. For example, there’s a CMS question about medication adherence, and a patient may not realize that that’s actually a financial toxicity
screening question.

I think one of our first steps as a community is going to be figuring out what is the right question to ask. How can we find something that’s really short, really sweet, that can be incorporated into all the screening questions you get when you go see a doctor for the first time? Our group is doing some work on a very specific question.

Then we need to take that question and look at how answers change over time. Are things changing? When are things changing? We hear from our patients in this study that it needs to be early on, and we also know from other work that when there’s a big change in treatment, like you’re switching chemotherapy, or something new is happening, or your cancer comes back, those are touchpoints.

I think as a community, we need to look at identifying how exactly we want to screen, picking the questions and then figuring out how often we actually want to be doing this as a screening question versus having a person going in and touching base with patients.

There are also questions about what our threshold should be once we actually get that question. Should anyone who has any concern at all about financial toxicity be seen by a person? But what if that’s 1,000 people at a cancer center that has one patient navigator? How do we start to identify the threshold where we start taking some action?

I think there’s a lot of work in the intervention and in the screening space that really needs to be done to move us forward as a field.