Cancer-Related Financial Hardship Among Cancer Survivors: Research from the HINTS-SEER Survey - Apoorv Dhir & Rishi Sekar
September 25, 2024
Ruchika Talwar interviews Apoorv Dhir and Rishi Sekar about their study on cancer-related financial hardship among cancer survivors. The researchers discuss findings from the HINTS-SEER survey, which reveals that 44% of cancer patients report some level of financial hardship. They highlight the importance of considering both individual and community-level factors in assessing financial burden. The study identifies key risk factors, including Social Vulnerability Index, age, income, cancer stage, and insurance status. The discussion emphasizes the need to look beyond objective financial measures and consider patients' subjective experiences. The researchers stress the importance of urologists recognizing their role in helping patients navigate financial challenges, suggesting increased awareness of available resources and multidisciplinary approaches. They conclude by emphasizing the need for better training and standardization in addressing financial hardship as part of comprehensive cancer care.
Biographies:
Apoorv Dhir, MD, Chief Resident, University of Michigan, Ann Arbor, MI
Rishi Sekar, MD, MS, Urologic Oncology, Fellow, University of Michigan, Ann Arbor, MI
Ruchika Talwar, MD, Assistant Professor of Urology, Urologic Oncologist, and Associate Medical Director in Population Health, Vanderbilt University Medical Center, Nashville, TN
Biographies:
Apoorv Dhir, MD, Chief Resident, University of Michigan, Ann Arbor, MI
Rishi Sekar, MD, MS, Urologic Oncology, Fellow, University of Michigan, Ann Arbor, MI
Ruchika Talwar, MD, Assistant Professor of Urology, Urologic Oncologist, and Associate Medical Director in Population Health, Vanderbilt University Medical Center, Nashville, TN
Read the Full Video Transcript
Ruchika Talwar: Hi, everyone. Welcome back to UroToday's Health Policy Center of Excellence. Today, I'm really excited to be joined by two researchers from the University of Michigan, Dr. Apoorv Dhir, who is a chief resident, and Dr. Rishi Sekar, who is the urologic oncology fellow. They'll be here with us sharing some recent work that they published looking at financial hardship among cancer survivors. Thanks so much to you both for taking the time to chat with us today.
Apoorv Dhir: Thank you for the opportunity to discuss our work with you today. I'll be presenting our article, "Individual-Level and Community-Level Risk Factors of Cancer-Related Financial Hardship Among Cancer Survivors," which was recently published in JAMA Open. Financial hardship is not a new concept in oncology. When I think of the impact of financial hardship on our patients, I think of it in these three buckets. First and obviously, patients experience the direct financial burdens of cancer care. Patients and their families may face the opportunity costs of missed work, are more likely to experience catastrophic health expenditures, and a significant portion may deplete their assets or become financially insolvent just years after their diagnosis.
Second, financial hardship directly impacts delivery of cancer care. Patients with greater financial hardship are more likely to experience delays in care and are more likely to avoid taking their cancer therapies in an attempt to save money.
Lastly, financial hardship of cancer care directly impacts quality of life. Patients with greater financial hardship are more likely to decrease spending on basic goods and leisure, while experiencing worse mental health, physical health, and overall well-being.
To evaluate the determinants of financial hardship, we examined data from the HINTS-SEER survey. HINTS is an established survey administered by the National Cancer Institute that collects data about public knowledge of cancer and health-related information. HINTS-SEER is a survey instrument designed by the NCI to provide a larger sample of cancer survivors with survey data linked to data elements from the SEER Cancer Registry.
There were 1,234 respondents for HINTS-SEER representing approximately 400,000 cancer patients. The HINTS-SEER survey asked many insightful questions regarding cancer diagnosis and treatment, but for this study, we focused on responses to one question: "Has cancer and its treatment hurt your financial situation?" On a survey-weighted analysis, 56% of patients reported "not at all." 22% responded "a little." 15% responded "some," and 6.5% responded "a lot." Ultimately, 44% of patients with cancer reported some level of perceived financial hardship from their cancer diagnosis and treatment.
We then performed a survey-weighted, multivariable ordinal logistic regression to understand what patient-level characteristics in this cohort were significantly associated with self-reported financial hardship. Social Vulnerability Index, which is a community-level measure of social determinants of health, younger age, lower income, advanced SEER cancer stage, and federal health insurance status were associated with higher odds of increasing levels of financial hardship.
Here, we've plotted the relationship of the probability of financial hardship with increasing social vulnerability, adjusting for all individual-level factors. On this adjusted analysis, you can see that increasing SVI was associated with a lower probability of reporting "not at all," and increasing probability of reporting some amount of financial hardship. Again, this is adjusting for all other variables, such as income, education, and insurance status, indicating that, independent of a patient's individual risk factors, their community-level vulnerability impacts their experience with financial hardship.
Altogether, our analysis shows that self-reported financial hardship is common in patients with cancer, with 44% of patients reporting it to some degree. At the patient level, financial hardship is associated with the Social Vulnerability Index, age, income, cancer stage, and insurance status, all of which supports the growing body of literature in this space. Importantly, our study demonstrates that community-level factors impact patient-reported hardship even when adjusting for individual-level factors. This highlights the significance of community-level factors in one's lived experience.
Moving forward, we think it is important to increase our understanding of how these community-level factors specifically relate to financial hardship, and ultimately, we think that the association of community-level vulnerability and patient experience financial hardship may allow us to better identify populations at risk to develop targeted interventions to mitigate financial hardship for cancer patients.
Ruchika Talwar: Thank you. The number that you describe is pretty staggering. We've seen reports of financial hardship in cancer patients, but to my knowledge, you report up to 50% of cancer survivors describing some sort of cancer-related financial hardship. What do you think is driving that significant number, and why do you think that's different from what we've seen in prior studies?
Rishi Sekar: So I'll start it, Apoorv. So I think one important thing to acknowledge with this survey study is that this is a patient-reported outcome. So a lot of prior studies have looked at more objective measures, like medical debt, more financial measures, rather than a subjective self-reported measure. So I think that has a lot to do with it. We did that pretty intentionally. So we really wanted to look at a more subjective measure of financial hardship, because I think one thing to take away from this is this is really complicated.
A lot of things go into how an individual experiences their cancer care. It's not really just about the dollar signs. The context matters. So a lot of my work, and I know we've talked about it before, Dr. Talwar, it really relates to a patient's lived experience, social determinants of health, and how all that collectively affects cancer care. So that was the angle we looked at, but again, I think emphasizing that this is a reported measure, we're not looking at objective dollar signs or anything like that, and I think that probably explains the bigger difference we're seeing.
Ruchika Talwar: Yeah, I think that's right, and I think it's important to emphasize something that you just captured in your statement there. If we look at dollar signs, if we look at medical debt, if we look at even there's been reports of looking at credit scores as they relate to financial burden of medical-related cost, that does not quite capture time off from work, caregiver burden, other sacrifices. So I think you do bring up a really good point here with this study. Now, what is your message to the urologic community in general? How can we take this information and better incorporate it into the way that we potentially counsel cancer patients?
Apoorv Dhir: Yeah. I think that's a great question, and I think in a similar vein, I think one of the main takeaways from this work is that financial hardship and a patient's experience goes beyond maybe some of the more objective measures that we have. So I think when we see patients in our clinic and diagnose them with cancer or are treating them with cancer, to remember that there are a lot of hidden costs to cancer treatment that we don't perceive, maybe, initially or don't see on paper, and I think that's an important, even just general perspective, for us to have when we're speaking with patients about their potential treatment options.
Rishi Sekar: And I think one is acknowledging our role in a patient's healthcare. We're not just urologists and oncologists. We, in a way, play quarterback in our patient's care. So we should be aware of some of the resources that are available to mitigate financial toxicity, financial hardship, using patient navigators. A lot of our hospitals have resources to help patients navigate the insurance landscape. Also, connecting them with local resources to help with transportation and food and stuff like that.
So we need to embrace that role. It makes it a little more complicated, obviously, but that's the reality of our healthcare system, and our patients need help navigating that, and I think the more we are aware of these influences outside of our hospital clinics, the more we can help our patients.
Ruchika Talwar: That's exactly right, and the thing I'll point out is that a lot of people feel they don't have the time, potentially, or the training to have these difficult conversations. So what would you say to those physicians out there who may have concerns that they haven't appropriately received any sort of education on how to broach these somewhat difficult topics?
Rishi Sekar: I think that's a big problem. I think that's exactly right, but again, I think one thing is just knowing what resources are available. There are a lot of academic centers, even private centers that have really great multidisciplinary teams surrounding bladder cancer, prostate cancer, etc., and a lot of those do involve teams like social workers and psychologists and stuff, and we can really rely and partner with some of those other specialists to deliver care.
But I think you ask a really great question. I mean, how do we train urologists to really tackle this? Again, I would say we should just play more of a team sport rather than try to take it on ourselves, but that's a challenge. It's not standardized. It's different every hospital you walk into.
Ruchika Talwar: Yeah, and I will say the first step is having conversations like these and shedding light on the topic, and then when we disseminate this sort of information, we're able to point our patients in the direction of the resources that you've mentioned, as well as it's important to note patient advocacy groups that have publicly available websites, even if your specific institution may not have a multidisciplinary group to turn to. So there's a lot out there, but I think this work that you all are doing is certainly paving the way in the right direction, and we really appreciate you taking the time to chat with us today.
Rishi Sekar: Yeah, thanks so much for giving us this platform.
Apoorv Dhir: Yeah, thank you so much.
Ruchika Talwar: And to our audience, thank you so much for joining. We'll see you next time.
Ruchika Talwar: Hi, everyone. Welcome back to UroToday's Health Policy Center of Excellence. Today, I'm really excited to be joined by two researchers from the University of Michigan, Dr. Apoorv Dhir, who is a chief resident, and Dr. Rishi Sekar, who is the urologic oncology fellow. They'll be here with us sharing some recent work that they published looking at financial hardship among cancer survivors. Thanks so much to you both for taking the time to chat with us today.
Apoorv Dhir: Thank you for the opportunity to discuss our work with you today. I'll be presenting our article, "Individual-Level and Community-Level Risk Factors of Cancer-Related Financial Hardship Among Cancer Survivors," which was recently published in JAMA Open. Financial hardship is not a new concept in oncology. When I think of the impact of financial hardship on our patients, I think of it in these three buckets. First and obviously, patients experience the direct financial burdens of cancer care. Patients and their families may face the opportunity costs of missed work, are more likely to experience catastrophic health expenditures, and a significant portion may deplete their assets or become financially insolvent just years after their diagnosis.
Second, financial hardship directly impacts delivery of cancer care. Patients with greater financial hardship are more likely to experience delays in care and are more likely to avoid taking their cancer therapies in an attempt to save money.
Lastly, financial hardship of cancer care directly impacts quality of life. Patients with greater financial hardship are more likely to decrease spending on basic goods and leisure, while experiencing worse mental health, physical health, and overall well-being.
To evaluate the determinants of financial hardship, we examined data from the HINTS-SEER survey. HINTS is an established survey administered by the National Cancer Institute that collects data about public knowledge of cancer and health-related information. HINTS-SEER is a survey instrument designed by the NCI to provide a larger sample of cancer survivors with survey data linked to data elements from the SEER Cancer Registry.
There were 1,234 respondents for HINTS-SEER representing approximately 400,000 cancer patients. The HINTS-SEER survey asked many insightful questions regarding cancer diagnosis and treatment, but for this study, we focused on responses to one question: "Has cancer and its treatment hurt your financial situation?" On a survey-weighted analysis, 56% of patients reported "not at all." 22% responded "a little." 15% responded "some," and 6.5% responded "a lot." Ultimately, 44% of patients with cancer reported some level of perceived financial hardship from their cancer diagnosis and treatment.
We then performed a survey-weighted, multivariable ordinal logistic regression to understand what patient-level characteristics in this cohort were significantly associated with self-reported financial hardship. Social Vulnerability Index, which is a community-level measure of social determinants of health, younger age, lower income, advanced SEER cancer stage, and federal health insurance status were associated with higher odds of increasing levels of financial hardship.
Here, we've plotted the relationship of the probability of financial hardship with increasing social vulnerability, adjusting for all individual-level factors. On this adjusted analysis, you can see that increasing SVI was associated with a lower probability of reporting "not at all," and increasing probability of reporting some amount of financial hardship. Again, this is adjusting for all other variables, such as income, education, and insurance status, indicating that, independent of a patient's individual risk factors, their community-level vulnerability impacts their experience with financial hardship.
Altogether, our analysis shows that self-reported financial hardship is common in patients with cancer, with 44% of patients reporting it to some degree. At the patient level, financial hardship is associated with the Social Vulnerability Index, age, income, cancer stage, and insurance status, all of which supports the growing body of literature in this space. Importantly, our study demonstrates that community-level factors impact patient-reported hardship even when adjusting for individual-level factors. This highlights the significance of community-level factors in one's lived experience.
Moving forward, we think it is important to increase our understanding of how these community-level factors specifically relate to financial hardship, and ultimately, we think that the association of community-level vulnerability and patient experience financial hardship may allow us to better identify populations at risk to develop targeted interventions to mitigate financial hardship for cancer patients.
Ruchika Talwar: Thank you. The number that you describe is pretty staggering. We've seen reports of financial hardship in cancer patients, but to my knowledge, you report up to 50% of cancer survivors describing some sort of cancer-related financial hardship. What do you think is driving that significant number, and why do you think that's different from what we've seen in prior studies?
Rishi Sekar: So I'll start it, Apoorv. So I think one important thing to acknowledge with this survey study is that this is a patient-reported outcome. So a lot of prior studies have looked at more objective measures, like medical debt, more financial measures, rather than a subjective self-reported measure. So I think that has a lot to do with it. We did that pretty intentionally. So we really wanted to look at a more subjective measure of financial hardship, because I think one thing to take away from this is this is really complicated.
A lot of things go into how an individual experiences their cancer care. It's not really just about the dollar signs. The context matters. So a lot of my work, and I know we've talked about it before, Dr. Talwar, it really relates to a patient's lived experience, social determinants of health, and how all that collectively affects cancer care. So that was the angle we looked at, but again, I think emphasizing that this is a reported measure, we're not looking at objective dollar signs or anything like that, and I think that probably explains the bigger difference we're seeing.
Ruchika Talwar: Yeah, I think that's right, and I think it's important to emphasize something that you just captured in your statement there. If we look at dollar signs, if we look at medical debt, if we look at even there's been reports of looking at credit scores as they relate to financial burden of medical-related cost, that does not quite capture time off from work, caregiver burden, other sacrifices. So I think you do bring up a really good point here with this study. Now, what is your message to the urologic community in general? How can we take this information and better incorporate it into the way that we potentially counsel cancer patients?
Apoorv Dhir: Yeah. I think that's a great question, and I think in a similar vein, I think one of the main takeaways from this work is that financial hardship and a patient's experience goes beyond maybe some of the more objective measures that we have. So I think when we see patients in our clinic and diagnose them with cancer or are treating them with cancer, to remember that there are a lot of hidden costs to cancer treatment that we don't perceive, maybe, initially or don't see on paper, and I think that's an important, even just general perspective, for us to have when we're speaking with patients about their potential treatment options.
Rishi Sekar: And I think one is acknowledging our role in a patient's healthcare. We're not just urologists and oncologists. We, in a way, play quarterback in our patient's care. So we should be aware of some of the resources that are available to mitigate financial toxicity, financial hardship, using patient navigators. A lot of our hospitals have resources to help patients navigate the insurance landscape. Also, connecting them with local resources to help with transportation and food and stuff like that.
So we need to embrace that role. It makes it a little more complicated, obviously, but that's the reality of our healthcare system, and our patients need help navigating that, and I think the more we are aware of these influences outside of our hospital clinics, the more we can help our patients.
Ruchika Talwar: That's exactly right, and the thing I'll point out is that a lot of people feel they don't have the time, potentially, or the training to have these difficult conversations. So what would you say to those physicians out there who may have concerns that they haven't appropriately received any sort of education on how to broach these somewhat difficult topics?
Rishi Sekar: I think that's a big problem. I think that's exactly right, but again, I think one thing is just knowing what resources are available. There are a lot of academic centers, even private centers that have really great multidisciplinary teams surrounding bladder cancer, prostate cancer, etc., and a lot of those do involve teams like social workers and psychologists and stuff, and we can really rely and partner with some of those other specialists to deliver care.
But I think you ask a really great question. I mean, how do we train urologists to really tackle this? Again, I would say we should just play more of a team sport rather than try to take it on ourselves, but that's a challenge. It's not standardized. It's different every hospital you walk into.
Ruchika Talwar: Yeah, and I will say the first step is having conversations like these and shedding light on the topic, and then when we disseminate this sort of information, we're able to point our patients in the direction of the resources that you've mentioned, as well as it's important to note patient advocacy groups that have publicly available websites, even if your specific institution may not have a multidisciplinary group to turn to. So there's a lot out there, but I think this work that you all are doing is certainly paving the way in the right direction, and we really appreciate you taking the time to chat with us today.
Rishi Sekar: Yeah, thanks so much for giving us this platform.
Apoorv Dhir: Yeah, thank you so much.
Ruchika Talwar: And to our audience, thank you so much for joining. We'll see you next time.