Jan 20, 2023
Dr. Shannon Westin discusses ways to ensure continued employment for cancer patients with her guests, Dr. Cathy Bradley, Dr. Tina Shih, and Dr. Robin Yabroff.
The guest on this podcast episode has no disclosures to declare.
Dr. Shannon Westin: Hello, everyone, and welcome to another episode of JCO After Hours, the podcast for the Journal of Clinical Oncology where we get in-depth on manuscripts that have been recently published in the journal.
Today, we're going to be talking about a Comments and Controversies article titled “Ensuring Employment After Cancer Diagnosis: Are Workable Solutions Obvious?” This was published online November 3, 2020. And I'm thrilled that we're accompanied by all three of the fantastic authors of this manuscript, including Dr. Cathy Bradley, who is professor and Associate Dean for Research at the Colorado School of Public Health and Deputy Director of the University of Colorado Cancer Center. Welcome, Dr. Bradley.
Dr. Cathy Bradley: Thank you.
Dr. Shannon Westin: We're also joined by Dr. Tina Shih, who's professor chief of the Section of Cancer Economics and Policy in the Department of Health Services Research, the Division of Cancer Prevention and Population Sciences, at the University of Texas MD Anderson Cancer Center in Houston. Welcome. And then finally, we have Dr. Robin Yabroff, who's Scientific Vice President of Health Services Research at the American Cancer Society.
Dr. Robin Yabroff: Welcome. Thank you.
Dr. Shannon Westin: We're so excited to have the three of you, and I know this is going to be a lively discussion and such a timely and important topic that I really just don't think enough has been done in this area. So you guys are to be congratulated.
So let's start by level setting. How many survivors are of working age and may consider work continuation during treatment?
Dr. Cathy Bradley: Yeah, we don't have a perfect estimate of that. We know there are just over 18 million survivors, and half, maybe even 60%, are working age and possibly employed during their survivorship time.
Dr. Robin Yabroff: And I'll add to that and say that there are also a lot of informal caregivers who were taking care of patients receiving cancer treatment who are of working age. And so that includes spouses, children, and parents.
Dr. Cathy Bradley: Excellent point.
Dr. Shannon Westin: It does bring up a good point because I think sometimes with this type of research, we're so focused on the survivor themselves. But when we really look at the definition of survivorship, it includes the caregivers and the people that are participating in the care of the actual patient.
Well, why don't you guys talk a little bit about some of the benefits of work continuation to cancer survivors? Like, why should we be even thinking about this?
Dr. Cathy Bradley: Yeah, I think there are a number of reasons. I mean, the two obvious, of course, are income and insurance. Income, in order to continue their daily lives, but also health insurance to continue their treatment and surveillance. And that health insurance is not just for them, but it's also for their dependents and for their entire families and sometimes for their caregivers and others as well. So there's being able to preserve income, and insurance is critical to cancer survivors, as it is to all of us.
And then there are all the other benefits of work, of continued career growth, to continue quality of life, that interaction, social interaction with others, and a sense of self-worth and identity that many of us have wrapped up in our jobs.
Dr. Tina Shih: Yeah, and I think the other issue to think about is income also tied to your retirement savings. So you don't want to stop your earning ability, so that makes continuing working also important. And then also to have a sense of achieving something so that you wouldn't be continuously thinking about only cancer treatment, but there’s other aspects of life.
Dr. Shannon Westin: Yeah, I think what I've seen in my practice is that another benefit of continuing to work is they're not just focused on themselves as the patient. And I think you got at that a little bit with that idea of self-worth, but it's also a distraction, right? Like, not sitting at home thinking about what's going on with my cancer, what's the next step in my treatment. It's kind of just keeping your mind busy with other things. I also wonder if when we talk about chemotherapy brain, if continuing to work and stimulate your mind and things like that could potentially be helpful in that setting as well. Like, we tell patients to do puzzles and things like that, but staying busy at your job and pushing the envelope there sometimes could seem to be beneficial as well.
So I guess I want to back up a little bit and just see what kind of led you all to be interested in this area. What were the kind of inciting experiences that led you to start to explore this work?
Dr. Cathy Bradley: For me, it was just an observation over time and growing up and seeing people around me who had to make incredibly stark choices, whether or not to continue, to be diagnosed with a serious illness but not be able to get care without that health insurance. So it's a very stark choice that they have between being able to continue to work or take time off to care for their illness during this very acute phase. And that just struck me as such an important thing that we needed to shine a light on, that as we make advancements and treatment and early detection—and the thing with early detection is that you’re going to pick up more people who are working age with cancer, and their source of insurance is their jobs. So looking at this stark choice, it just seemed critical to start to study these questions systematically and, as I said, shine a light on this issue.
Dr. Robin Yabroff: For me, I had the experience of my mother being diagnosed with cancer when I was in graduate school, and I was fortunate that I was working and I had a supportive employer. But everyone in my family, including my father and my sisters, were able to take leaves of absence with paid sick leave that allowed us to step up and care for my mother. But I realized that we were coming from such a place of privilege in having paid sick leave. As Cathy said, for many people who don't have the opportunity to continue working, it's a really stark decision. And then I'll also be a little bit of a fangirl; I saw Cathy give a talk a while ago, and I was so fascinated with her research related to this topic, so I approached her afterwards and asked if we could work together.
Dr. Cathy Bradley: You are too kind.
Dr. Robin Yabroff: I won't say how long ago it was, but it was a long time ago.
Dr. Tina Shih: I think, for me, I was trained as a labor economist in my Ph.D. program, and after that, I keep on wanting to connect cancer studies with labor market studies, but there's really not good data on that. So I'm also an admirer of Cathy’s work, like she’s able to build that connection. And, of course, it's been a lot of fun working with these two really accomplished researchers.
Dr. Cathy Bradley: It’s been the best collaboration for the three of us to work together.
Dr. Robin Yabroff: Absolutely.
Dr. Shannon Westin: I love these cross-institution collaborations, and not even just institution, obviously, the ACS—well, I guess it's big enough to be an institution. But it really is inspiring to me because I think a lot of times we tend to collaborate within our own institution or within our own group even. So you all really have created a model of success here.
So, getting back to work continuation, what are some of the gaps of knowledge that we have in this area, and why do they exist?
Dr. Cathy Bradley: I think Tina said it best. There’s just no good data sources out there. We’re not like Scandinavian countries that can link our health system with our employment data and link it all up and understand what’s going on, that this area, generally—I mean, from my studies—require primary data collection. And other studies. There are some surveys that are out there. Robin’s done a great job publishing in this area using secondary data. We just don’t have a single data source that ties it all together. So that is the biggest challenge in studying this area and leading to our gaps. We don’t know which treatments lead to fewer or more side-effects. Work effects are not studied in clinical trials; they’re not recorded in medical records. There’s so much that we just don’t know, that we can’t say, and that providers can’t have a conversation with their patients about how a particular treatment course will affect their ability to work.
Dr. Tina Shih: I think, to add to that, like for people who also are in the working age population, there’s no equivalent data to see in Medicare. So a lot of time, you have to kind of guess what’s happening with the cancer stage. A lot of time, you can only know what cancer patients have, but that kind of limits your ability to dig deeper into: Are they getting the right chemotherapy, or are they getting the right treatments? Because you don’t really know at this stage.
Dr. Robin Yabroff: I’ll just reiterate what both Cathy and Tina already stated, which is really the lack of comprehensive data, not only about cancer and the clinical details of treatment and diagnosis but also about the type of jobs that people have. So, many times, we know whether or not they had a job, but not how long they‘ve had it, how many hours they work a week. And so a lot of our data from national surveys are really pretty limited for exploring any of the longitudinal effects of the cancer diagnosis on work, which we think are really important, not only for patients but also for their informal caregivers and family members.
Dr. Shannon Westin: So I think I might know the answer to this based on what you all are saying, but how do we overcome these gaps to be able to increase research in this area?
Dr. Cathy Bradley: I think creating that data infrastructure and collecting the information is what's critical. And we know that providers and patients don't—not all of them have discussions about employment when they go in to make treatment decisions, that that's often not part of that shared decision-making about going forward, the employment component, and the patient is kind of left trying to figure it out. And I just think there are more opportunities to create that data infrastructure to stimulate that discussion and to have follow-up.
Dr. Tina Shih: And I want to add to that to say that a lot of time, the information we want to collect about employment, patients, they have the information. I think they would be willing to provide that information. I think the information is not as sensitive as, “Hey, what is your income level?” or things like that. I think we should be able to collect that information with really high-quality data just by asking patients.
Dr. Robin Yabroff: And I want to reiterate the importance of having longitudinal information about employment over time. Some people may take a brief or extended leave of absence from work while receiving cancer treatment, but what happens when they return? And what does that mean for career development and mobility and how they return to a fulfilling work life for both the patients and the family members? So, as Cathy said, many providers don't discuss employment and job tasks and things like that with patients.
And I think another advantage—and I don't remember if we mentioned this, but another advantage of these discussions is tailoring treatment so that patients will be most likely to complete the recommended treatment. Because you can imagine a situation where someone who is being treated for cancer cannot get time away from work and doesn't complete their treatment, or they can't get time from work because they don't have paid sick leave and they need the income and they can't complete their treatment.
Dr. Tina Shih: I want to add to that point being one of the studies we look at young women. We looked at the age of kids, and then we noticed that among those with lumpectomy, about 1 in 5, 20% of women, actually did not have radiation therapy follow-up after lumpectomy, so that's a big problem. And so that also reflects—you need to tailor your treatment based on your patient's needs.
Dr. Robin Yabroff: Yeah, I remember that study, Tina. I thought it was really clever, where you were looking at newly diagnosed patients with breast cancer who received breast-conserving surgery but did not complete the radiation treatment. And so thinking about childcare is really important too.
Dr. Cathy Bradley: Transportation, all of those things that play into treatment completion, especially for people who are employed and trying to balance their jobs with their treatment. And I think the scenario Robin laid out of someone taking leave and then coming back, but you also have the other scenario where people just try to gut it out and do everything at once and then later become the same. So this longitudinal data and understanding what's going on and the impact of whether or not they complete, as Tina has shown earlier and women in my studies have reported, they will miss treatment before they miss work if it jeopardizes their health insurance, especially if they have children. Going back to Tina's point, if they have kids and those kids are dependent on them, they are not going to risk health insurance and their family's wellbeing.
Dr. Shannon Westin: We see this quite a bit with patients with cervical cancer. Obviously, it's a problem across all cancer types, but there especially seems to be quite a bit of burden amongst survivors of cervical cancer. And they're required to have daily treatment for six weeks. And we know best outcomes occur when that timeline is kept very tight. And when we have multiple missed radiation treatments and the timeline extends out, say, past ten weeks, then you see worse outcomes. And so we definitely are living this every day in the clinic.
How can workplaces support survivors? Because I feel like a lot of what we're talking about is that fear of losing their job, that need to keep insurance. So what are some strategies or some suggestions, I guess, we should make to workplaces to help support their survivors?
Dr. Cathy Bradley: Of course, having benefits like paid sick leave and those things are critical. And being flexible, offering accommodations, flexible work schedules of when they come in and when they leave or if they're able to do their work in off hours or remotely, those things are all helpful. We've moved into more of a remote environment since COVID; those things can be very beneficial. But for somebody who does a job where that's not an option, I think there are other kinds of accommodations that employers can make. And being respectful and understanding of a patient who is going through this and valuing them as an employee, maybe not necessarily as a survivor, but as an employee who's dealing with something, that's pretty critical. And I'll let Robin speak for the caregiver component.
Dr. Robin Yabroff: As usual, you read my mind. That's exactly what I was going to say. The importance of offering paid sick leave and health insurance coverage for the patient and also for the informal caregivers and also those accommodations, because frequently informal caregivers are responsible for getting patients to and from treatment, which, when you think about daily radiation, for example, making sure that that caregiver has time away from work is also important.
Dr. Tina Shih: And I think the other issue is to be emotionally supportive for your workers so that they know they don't have to be afraid of losing their job after completing cancer treatments. Or if they have to take more sick leave than they have, they might be able to borrow some sick leave. Having cancer patients in small businesses is stressful for business owners. But I think that's just something that they need to think carefully about, not make cancer patients feel like you are increasing my company's premiums because you have cancer.
Dr. Cathy Bradley: Building off of what Tina just said, taking the long view. It's not a short-term thing, where let's take the long view. This is a valued employee who is going to continue to contribute to the company, to our organization, long term. Take the long view here, not make it so hard on them in the short term.
Dr. Shannon Westin: I love real strategies, and I think certainly those are things that people can do on the local level. We certainly need to discuss policy as well. It's hugely lacking.
What are the next steps, do you think, we could do from a policy standpoint to improve the lives of our survivors?
Dr. Cathy Bradley: I think there are a number of things that we can do: I mean, having health insurance outside of the employer-based mechanism as an alternative, having paid sick leave for someone who is ill as well as those who care for them, having a policy of accommodation. Currently, the ADA, or Americans with Disabilities Act, while it covers cancer survivors, it does not cover their caregivers. So there are things that we can do to extend. And then there are policies that are in place that are just cumbersome. You see this, I'm sure, in your own practice. For a person to qualify for disability benefits, it takes a year. Being able to do that quicker, expedite it. That's a huge deal. That's a protection we have in place that is just extremely cumbersome to use, such that by the time a year goes away, the patient could have passed away but yet still need those benefits for the family and income prior to that happening.
Dr. Robin Yabroff: I'll also add that we talked about occupational health and rehabilitation in our Comments and Controversies piece and the importance of making sure that health insurance coverage extends to occupational health and rehabilitation to ensure that patients can successfully return to work.
Dr. Tina Shih: I think, on the provider side, there might be things that providers can do to kind of somehow accommodate working population’s schedule. I know this kind of adds to providers' burden; they might have to open evening clinic or weekends. But I think, for working population, they really cannot afford to be not at the office for the type of job. I think this kind of arrangement would be very helpful.
Dr. Robin Yabroff: Yeah. And I think for providers to be asking patients about their employment. Like, what type of job do you have? What types of job tasks do you need to do on a daily basis. Do you have health insurance coverage through your work, or is it through someone else in your family, or do you not have health insurance coverage at all? And then, importantly, do you have paid sick leave, and what types of accommodations will your employer offer you? And I know Cathy's done some really interesting work thinking about how patients can talk with their employers about work and what their options are.
Dr. Cathy Bradley: Yeah. Opening the discussion would be a huge step forward to figure out what kind of referrals they need, what kind of letters need to be written for employers. How can they expedite the process to get patients what they need rather than have it be an afterthought?
Dr. Tina Shih: And I think if this is too much for providers to take on, then I think mitigators can also share some of the workload or research nurse. I think those are information you can collect on patient intake.
Dr. Shannon Westin: Great. So I guess the final question I have for you is what are your next steps? Where does this go next?
Dr. Cathy Bradley: I think we have a number of things that are ongoing. I'm involved in a study now with the team here at the University of Colorado, the Total Worker Health Team, and they're looking at the impact of interventions with providers, the oncology care team, for things that they can do to be more supportive of the patient who is undergoing treatment. So it's a really unique perspective of how they apply Total Worker Health concepts to the oncology care team. And that study is just getting underway and hopefully will provide guidance for the oncology care team of how to interact with the patient in order to provide the support they need. I think it's somewhat of a black box, everyone being well-intentioned but not having the data to support them.
So that's one study that I'm involved in currently, and then the three of us are always looking at policies and implications and what's the downstream effect. Tina did some great work on looking at the impact on the financial hardships and long-term impact on people who are diagnosed with cancer, how it extends well into retirement. And I think understanding those impacts and being able to communicate it is an important role that we play as a team.
Dr. Robin Yabroff: I'll also add that we have other things underway, sort of thinking about the impact of disruptions in employment for any period of time or for any reason and what that means in terms of development of financial hardship. And thinking about outside of the cancer diagnosis, how the cancer diagnosis affects employment and then affects development of financial hardship later. I think it’s a really important area, especially as there is more attention to medical financial hardship broadly. Many researchers I know are actively interested in the topic.
And then I'll also add, so we're talking about research, but I'm increasingly interested, and hopefully can work with Tina and Kathy on this, in benefits managers and how those decisions are made for employers. Many employers take up a set package of benefits to offer for their employees without carefully considering what it means for patients with cancer and their caregivers—so thinking a little bit more about the decision-making process that employers have and thinking about the benefits they offer their workers.
Dr. Tina Shih: So as a data geek, I think I'm still trying to figure out a way to collect the claims data with short-term disability and then to see can I figure out who took short-term disability and came back and what happened to those people? And it's been a difficult task because not many data collect those information. That goes back to the data infrastructure issues, that we really need to have better data to understand working-age cancer patients.
Dr. Shannon Westin: Well, thank you all so much. This has been incredibly fascinating. I learned so much. I just want to thank all three of you, Dr. Bradley, Dr. Yabroff, and Dr. Shih, for your exciting work, and I hope that we can continue to make strides in this area.
And just thank you to all of our listeners. Again, this has been a JCO After Hours on “Ensuring Employment After Cancer Diagnosis: Are Workable Solutions Obvious?” published online November 3, 2022.
Please do check out our other podcast offerings on the JCO website, and we will see you next time.
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.