Income Among Adolescents and Young Adults Surviving Cancer

Host Dr. Shannon Westin and guest Dr. Giancarlo Di Guiseppe discuss the JCO article "Long-Term Dynamic Financial Impacts Among Adolescents and Young Adults With Cancer: A Longitudinal Matched-Cohort Study"

TRANSCRIPT

The guest on this podcast episode has no disclosures to declare.

Dr. Shannon Westin: Hi everybody and welcome to another episode of JCO After Hours, the podcast where we go in depth on manuscripts that are published in the Journal of Clinical Oncology. I'm your host, Dr. Shannon Westin, social media editor of JCO and gynecologic oncologist extraordinaire.

I'm so very excited to talk to you today. We're going to speak about "Long-Term Dynamic Financial Impacts Among Adolescents and Young Adults With Cancer: A Longitudinal Matched-Cohort Study." And I'm joined today by Dr. Giancarlo Di Giuseppe. He has a PhD in epidemiology that he actually just defended with this very work you're going to hear about today at the Dalla Lana School of Public Health at the University of Toronto. He is now a research fellow at the Hospital for Sick Children. 

Welcome, Dr. Di Giuseppe. It's so exciting to have you.

Dr. Di Giuseppe: Thank you so much for having me.

Dr. Shannon Westin: So we'll get right to it. Let's level set. Can you talk a little bit about the financial impact of cancer on survivors in general? I think this has been a growing area of interest and research, certainly.

Dr. Di Giuseppe: Yeah, and I think that's a very important question, and I'm so happy that this research is now becoming more popular in the research world because it really addresses a critical issue that cancer survivors and their families must face. You know, you're diagnosed with cancer, and now you need to take time off work because you're hospitalized for chemotherapy. You're going back and forth to the hospital, and that all requires time away from your employment, and as a result of that, that has a significant financial strain, both on you and your family. And that's during therapy.

Now, in survivorship, in the years after you've survived your cancer, you still need to deal with all the late effects associated with your treatment and your disease, and that can be psychological, physical, and that impacts your workability as well. So, it's not just exclusive to individuals undergoing treatment but also in survivorship afterwards. It really gets the financial strait that you face as a cancer survivor because you're time away from work and your lost productivity.

Dr. Shannon Westin: Yeah, that makes sense. Then I think it would be great to talk a little bit specifically about the patient population that you studied in this particular manuscript. Can you talk a little bit about the adolescent young adult cohort, you know, why you singled out this particular group of people?

Dr. Di Giuseppe: Absolutely. Adolescents and young adults, or AYAs, which I'll now refer to them as - I'm one of them - we're at a unique crossroads of our life and in our developmental stage of life. We are finishing our post-secondary education. We're entering the workforce. We're forming romantic relationships, and we're really achieving financial autonomy. It's because of this unique developmental stage in life where we've become quite susceptible to health shocks such as cancer. Really, does a cancer and the associated negative financial impacts affect our long term trajectory?

So, I'm just finishing my PhD. If I was diagnosed with cancer, I would require a year or two away from my studies. I may or may not finish my education that could then impact my employment and then my financial outcomes later on in life. So it's really this unique population who are going through so many transitions and changes in their lives. How does that cancer really impact that life course trajectory? I think it's unique from an adult who might have, you know, large savings where they can bear the brunt of their cancer financial impacts, whereas AYAs may not have that same financial stability, provide a safety net for the financial impact resulting from their disease.

Dr. Shannon Westin: You broke my heart a little bit. I realized I'm no longer in that group, so I guess it's time to move on. Okay.

So, let's talk a little bit about the overall design of the study. Can you just kind of walk us through how you set everything up?

Dr. Di Giuseppe: Yeah, absolutely. So it's a matched cohort study at the population level here in Canada. We have large national administrative databases, and we have this really unique set of data at the national level through Statistics Canada that we can link our cancer registry to tax records. It really provides this unique opportunity to longitudinally follow individuals from their disease forward in time.

The main overall design is the matched cohort study. At the time of diagnosis of a cancer case, they're matched to someone from the population on certain characteristics. I follow these individuals from the index date of their cancer case forward in time. The crux of the study itself is a quasi-experimental two-group pre-post study design where I have information before the cancer diagnosis, I have information from their income after their cancer diagnosis, and it's really quantifying how much does that total income change from before the cancer to the after-cancer period.

Dr. Shannon Westin: I'm always intrigued about hearing more about financial toxicity in general, certainly very multi-dimensional. Can you speak a little bit about the different ways that you can assess this and measure this and kind of what you chose?

Dr. Di Giuseppe: Yeah, so financial toxicity really has two main spheres of measurement. There's a direct and the indirect measurements of financial toxicity. So your direct financial toxicities could be related to actually paying for medical treatment and any sort of financial burden as a direct consequence of your disease. Fortunately here in Canada, we have a universal health care system, so patients don't have to pay directly for most of their treatment.

There's also indirect financial toxicities, which are not a direct result of the disease. So in this study here, one of the, or the indirect financial toxicity that I measured was the financial impact to income. That's not the only indirect financial toxicity. There could be out-of-pocket expenses for drugs that may not be covered in the universal health care system here. It could be lost productivity at work. There's really this direct and indirect financial toxicities that together result in a significant financial burden and hardships for cancer patients and survivors.

Dr. Shannon Westin: Okay, so you guys did a lot of matching. It was extensive. Can you speak a little bit about the factors you used to match your patients and your controls and kind of why you chose them?

Dr. Di Giuseppe: Yeah, absolutely. The matching I think is a really critical aspect of the study, and it really establishes this baseline period of individuals who are cancer-free, who look as similar as possible to the individuals who would eventually develop cancer. So I matched on birth year, sex, marital status, whether or not they had children, if they were born here in Canada or not, as well as a geographic measurement of census division. So it's really in the city or in a rural town. Then I also matched on a 5% buffer of their total income in the year prior to the cancer diagnosis. All this matching was really done in the year before they were diagnosed, and it's to establish this comparator cohort of individuals from the general population who looked as similar as possible to the individuals, or the AYAs, who would develop cancer. It's again to establish this baseline period of a control cohort who looks as similar as possible.

So any differences that we might see after the cancer can be attributed to the effects of the AYA who would develop cancer. It's quite powerful, I think, from a study design perspective because it establishes causal inference methods through the study design and through the matching itself. Fortunately, I was able to match on an extensive list of covariates given the large population-based data that I used, particularly the tax records. Tax records contain a whole wealth of information, your marital status, your sex, your income, where you live. So it really provided this rich opportunity to match as closely as possible the AYAs who would develop cancer to someone from the population who wouldn't.

Dr. Shannon Westin: Yeah, and I mean I think that's the only way to do this type of research and really make it generalizable and actually, you know, know that you can trust the results that you've got. So I just want to again congratulate you because I think this was just- when I read the design, I was so impressed.

So now that we know the design and we understand everything, let's talk a little bit about the characteristics of the actual patient population that you studied.

Dr. Di Giuseppe: Yeah, for sure. So average age of diagnosis was in their early 30s, so around 32 years old. The breakdown of the population was mostly females, so I think two-thirds of the cohort were actually females who were diagnosed with cancer. Really, a lot of the cancers were thyroid and the breast cancers. These cancers are more common in women than they are in men. So it's really reflective of the different distribution of cancer in AYAs compared to other populations like in children or in older adults.

Dr. Shannon Westin: All right, bottom line. What did your primary analysis demonstrate and how was the income different based on the types of cancer that people might have been diagnosed with?

Dr. Di Giuseppe: Yeah, the bottom line is actually quite a disturbing message, I would say, and it's really that cancer causes this long, prolonged financial hardship in survivors. That's, I think, a very important result from the study, and I think it has far-reaching implications. This study demonstrates that these individuals who were diagnosed with this disease that is unforeseen also pay a financial price, and that sustains for many years after their diagnosis. That's overall on average. Once I dove deeper, actually looking at the different cancer types, the message actually gets even more disturbing, I would say, particularly in some disease subgroups. So the central nervous system cancer survivors really have a large reduction in their income, which sustains over 25%, 10 years after their diagnosis, and they never really recover financially from their disease. There are some groups of cancer survivors who really pay a large financial price for their disease.

Dr. Shannon Westin: I don't know if you're able to tease this out. This is just me thinking off the top of my head. Do you think it's the long-lasting side effects?

Dr. Di Giuseppe: I think you hit the nail on the head there, absolutely. I think what we're seeing here is a direct result of the late effects that cancer survivors experience. CNS cancer survivors, whether that is a surgical resection, radiation to the head for their tumor, the late effects really impact these individuals in the post-cancer survivorship period. So I think what we're really seeing are these late effects here.

Dr. Shannon Westin: The other thing I was kind of struck by is the differential and income loss over time. Can you speak a little bit about that in your work?

Dr. Di Giuseppe: Yeah, absolutely. There really is this period of financial vulnerability in the first couple years of diagnosis. So that's year zero, one, two, and three, these first couple years when these individuals are diagnosed with cancer, they are significantly impacted by their disease financially. Some of these reductions in their income is 15%, 20% in the year of diagnosis and the year afterwards. It's unsurprising because this is when these individuals typically are undergoing their treatment. They're not working. They may have even lost their job or quit their job. So it's really reflective in the results in that first few years of their diagnoses where these financial impacts are the largest. I think it provides an opportunity where certain interventions might alleviate some of these large reductions in their income.

Dr. Shannon Westin: Well, I really was disturbed by your work, and I hate to kind of say it that way because it's such important work. So I'm really- congratulations on everything that you're able to achieve and especially your PhD. But I think shining a light on these types of things is always pretty rough when you really look at the nitty-gritty details. So any thoughts about where we go from here, how do we support these people?

Dr. Di Giuseppe: I think we can support them at multiple different levels. So at the individual level, I think within the clinic setting, financial screening for financial toxicity, financial literacy, I think all these things can be incorporated into cancer care continuum to kind of educate AYAs with cancer about the financial implications of their disease, both in the short and the long term. So I think educating these cancer patients is important.

I think at the employer level, really working at the institutional level to incorporate workplace accommodations that might facilitate the return to work process for cancer survivors after their treatment or during, I think would also make the financial burden slightly less if cancer survivors are able to return to work or not have to quit their job because of their disease. And then return to work easier, I think might alleviate some of the employment consequences that these individuals face, which then lead to their adverse financial effects.

Then I think also at the policy level, at the governmental level, whether that's incorporating any sort of fiscal stimulus for cancer survivors, whether they're under treatment or in survivorship, any sort of tax breaks that they might be available to them to kind of alleviate some of that financial stress. The reality of it is being diagnosed with cancer and having your income reduced by even 5% - cost of living is expensive, especially now - so I can't even imagine what cancer survivors who are in this economy are facing with rising inflation and cost of living going up. So I think really having tax breaks as well as financial aid for these cancer survivors could really support them both in their cancer journey while they're undergoing treatment as well as some of the sustained effects that they experience afterwards.

It's particularly important, as we touched on earlier, for CNS cancer survivors, right? These individuals have this sustained effect that never really returns back to normal, and I think having  sort of disability pension or kind of financial aid for these individuals to support them, I think is important.

Dr. Shannon Westin: We see this all the time in gynecologic cancers, these young women that support their families, young children, and then lose their ability to do so due to their diagnosis and the treatment they have to receive. So I can't say this enough how important this work was and how honored I am to get to speak with you today. I learned a ton.

And thank you to all of you listeners. We're just so excited to have you. This has been long term dynamic financial impacts among adolescents and young adults with cancer: a longitudinal matched cohort study. Thanks again for listening to JCO After Hours, and please do check out our other offerings wherever you get your podcasts. Have an awesome day.

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