By Lidia Schapira, MD, FASCO, and Daniel Mulrooney, MD, MS
Editor's note: This post is based on a Cancer.Net podcast and references a study published in the Journal of Clinical Oncology (JCO), “Incidence and Predictors of Mental Health Outcomes Among Survivors of Adolescent and Young Adult Cancer: A Population-Based Study Using the IMPACT Cohort.” The transcript has been edited for length and clarity.
LS: In [the study published in JCO], scientists from Canada were interested in looking at the incidence and predictors of mental health outcomes among cancer survivors of adolescent and young adult cancers. So they used a large database, and they looked at what happened to those adults who were diagnosed when they were between 15 and 21 years of age and had survived at least 5 years since their cancer. So they were now adults. What they were interested in were the mental health episodes that were either outpatient mental health problems, mostly anxiety, that were diagnosed in these cancer survivors and also, severe psychiatric episodes such as hospitalizations for schizophrenia and other important psychiatric illnesses. They compared them to adults that were matched but did not have a history of cancer. Surprisingly, perhaps, or not so surprisingly, they found that the survivors of cancer had more mental health problems. There was a 30% higher rate of outpatient mental health visits, mostly for anxiety, and a 20% increased risk of a severe psychiatric episode as compared to these matched controls. So, Dan, I first wanted to get your reaction to this.
DM: It's a really important article concentrating on a group of survivors that we already know are at higher risk for adverse mental health outcomes and psychosocial risks following their cancer therapy. But what's so interesting is they were able to combine large data sets. They were able to compare these survivors to the general population, which is very relevant for health care providers taking care of these patients in the community. In addition, what I thought was particularly interesting is their ability to look at both outpatient visits and those more severe mental health issues that require an emergency room visit or require admission to the hospital. I think this is very informative information about this high-risk group of survivors and hopefully will be instructive if we can interpret this and turn this into services that we can direct to these patients.
LS: I found it interesting also that they said that they only captured the mental health visits in the outpatient setting that were delivered by physicians because of the data. So, in fact, visits with social workers or psychologists did not even make it into these statistics. That suggests to me that there may be even more problems that were not captured by these numbers.
DM: I think you're absolutely correct on that. If anything, these numbers underestimate the issues and the problems that may be out there. It's only those who made an appointment and went to a mental health care provider. They missed social workers. They missed other social networks, ministers, religious organizations that might be providing help as well. And of course, we're talking about a young adult population that may not always reach out for these services. This group did reach out. So we probably have the more severe group represented here, but we're missing a large population underneath this.
LS: If we think about what we can do with this information, how we can think about guidelines, assessments, and support, let's think back to when these young adults and adolescents are first diagnosed. I was also struck by the fact that there was a difference with more mental health problems in those treated in adult cancer centers than those who were treated in pediatric cancer centers. Can you tell me what may account for those differences?
DM: That's a very interesting question and fact that came out of this paper. I suspect there are probably a number of reasons. I think, globally, this paper looks at mental health issues in cancer survivors, which we have to separate from mental health issues in patients going through active cancer therapy. There may be quite a bit of overlap. There may be some similarities. But I suspect, particularly in the AYA population, the issues that they encounter as a survivor are different than those that they struggled with as a patient. They saw this difference, particularly for outpatient visits, based on where they were treated. One thing to point out is the majority of these survivors were actually treated in the adult cancer centers. In Canada, if you're over age 18, you're considered an adult and you're treated at an adult cancer center. So there was a smaller population, I think it was only about 25% to 27%, that were actually treated in pediatric centers. Certainly, the focus and the culture of care is different between pediatrics and adult medicine. I suspect there may be some differences in survivorship support and care. Those in the pediatric community are probably receiving, I suspect, more follow-up, a survivorship program that is probably a little bit more structured, and hopefully a survivorship program that has social work support or psychosocial services provided. Now, I can't say that the adult centers don't have that, but of course, the population is much larger, and the visits and that culture is very different than they receive in pediatrics. So it is possible that some of those early services and supports are just not available to that population.
LS: Let me pick your brain about this a little bit since you are immersed in this world. What does it take in your mind to create the best possible environment for these young adults to thrive after cancer or to have an opportunity to receive all the mental health support that they need in order to move on with their lives?
DM: I think number one is to recognize it as an issue. In particular, we know that this AYA population is considered a high-risk population for mental health issues after cancer. And so, first, we really need to recognize that. This paper draws our attention to that very nicely: that it is an issue, there's a high prevalence of mental health issues after cancer therapy. In our survivorship clinics, we need to address the medical and chronic health concerns after cancer therapy, but we can't forget these psychosocial issues. And how does that affect this individual survivor? They're struggling with lots of issues after cancer: fear of recurrence, fear of a second cancer, maybe body image issues, maybe health conditions that their peers at this age are not encountering. In addition to treating those and doing appropriate surveillance, we should really also be doing mental health surveillance and screening, and identifying appropriate referrals for them to address those issues.
LS: For people like us, who are not trained in mental health, what should we be doing and thinking about as oncologists or even as primary care physicians who see these patients? What can we do?
DM: I thought a great deal about that when reading this study, because even in primary care, there's at least some general screening for mental health or depression. Most primary care providers, at least mine, hands me a little questionnaire that I fill out while I'm in the waiting room. Obviously we need to do that, but perhaps we need to take it a step further in this unique population, to maybe ask the appropriate questions in a survivorship clinic. Hopefully, we have social work support. Not all centers will have that. Obviously, there's going to be access issues. In the United States, there's probably financial issues that maybe didn't occur in Canada. But we really need to advocate for taking those questions a little bit further, digging a little bit deeper, and having a social worker available, maybe to do that screening in person, maybe not do it on paper in a group that we know is high risk.
LS: That was one of the things that I also thought about as I was reading this: screening tools are great when you think that what you're screening for has a relatively low prevalence. But if, in fact, this is so important, maybe an assessment done by a professional who's trained may actually take us a little bit further and help us so that we don't miss people. I know there are many screening efforts, for instance, where the data is captured, but then there is no link to a solution or a referral. It's not that people don't mean well, but there are all sorts of reasons why things fall through the cracks, which is sad. Whereas if there were a relationship and an assessment done by a professional, I feel then our default would be more to ask, to support, and to keep asking. Because one of the things I think the authors also tell us is that you need to keep doing this over the course of many years. Is that your understanding as well?
DM: Absolutely. All of us were trained as oncologists, and we feel like we maybe don't have the skills to address this. But we certainly have the ability to ask and delve a little bit deeper. We know how to take a history, we know how to take care of patients in very critical realms. We certainly are comfortable asking difficult questions. And mental health questions should be really no different from that. An important thing I noticed in this paper is one of the predictors of a mental health issue for the survivors was a preceding mental health issue even before diagnosis or going through therapy. So are we missing them all the way along? Maybe we should be intervening or addressing this when they’re our patients in our cancer center, and then not miss that transition to appropriate survivorship care and appropriate psychosocial care after that.
LS: I couldn't agree with you more. I think between the two of us, we could design the perfect cancer care system where we reach out to these adolescents and young adults. In some cases, I imagine in the younger patients, there's also the parents to consider at the time that they're getting treated, right? And then maybe those relationships as they grow into adulthood also change. There may be a disruption in what we think of as the family unit or the supports available to that young person, so it's very complicated. Do you have any advice, given the work that you do in the survivorship clinic, on how can we even begin to do this? To reach out to everybody and make sure that people feel connected to you, but then also that when you let them go, that they can find the support they need?
DM: What a struggle it is, particularly with these young people who are growing into their own, becoming more independent, wanting to take more responsibility, but then are struggling with so many of these health care issues, whether they're physical or mental. Family support and the family unit has to be considered, particularly with the younger population. And not only the mental health of the survivor, but the mental health of the parents or the family who may have their own issues preceding cancer therapy, or may be struggling with how to take care of their child after cancer, or this fear of recurrence themselves. Often, the parents may have a harder time than the young person does. We have seen both post-traumatic stress disorder but also post-traumatic resilience in some of these patients. They really feel they've come through something and it's made them stronger and it's changed their outlook on life. In our clinic, we make sure that we at least have them see a social worker when they come into the survivorship clinic, and then again, as there may be mid-adolescence and a year or 2 before they're going to graduate or leave our care, so that we're addressing those issues or identifying those issues. That gives us at least a year or 2 to try to find the services locally, wherever they live, for them. The handoff in that transition is very difficult. And I won't lie, I've been concerned about the transition for a long time, as you know. I think it's an area we really need to improve upon. We need more buy-in from the medical community across the board, maybe more research in that area.
It's a real struggle, but we can't just finish their survivorship care and not make sure that they're not connected again locally, because the care continues, and the paper showed that that the risk continued to increase and went up with time from diagnosis. So it's a real struggle; it's just really hard.
LS: You just described the challenge that we all face so beautifully. My final question to you is about your experience with young cancer survivors during this last year, with the COVID-19 pandemic. With the isolation and all of the mental health issues that we've heard about just among young people in general, what have you found? I imagine you're going to tell me that there is enormous variation, but I'd love to have you share a little bit of what you've learned.
DM: It has increased the stress on cancer survivors. The pandemic has made life difficult for everybody. But again, we're talking about a population who has survived cancer, who may have some chronic health effects related to that, and they've called us and they said, "Am I at increased risk? What should I do? Do I need to do something different to protect myself?" And so far, we don't know. The data really aren't mature enough to understand if a survivor of cancer is at a higher risk than somebody in the general community. Certainly, if they're on immunosuppressive medications or if they have chronic health conditions, we suspect they're at higher risk, just as you might see in the community, particularly with an older population.
Access to care is certainly more limited, and it's harder to reach out and get those mental health services. I was thinking a great deal about that when reading this paper because, in some ways, they may be able to get services a little bit more quickly during the pandemic because it's all being done by telehealth, and these encounters are probably not being done in person. On the other hand, the pandemic has disrupted scheduling and access. I worry that there's a large population that was missed even in this study, but a large population now that's being missed and not receiving services because of the pandemic. Hopefully, as this begins to ease, we can start attacking that problem and getting to more and more of those people.
LS: Are there resources for survivors, especially now in the time of the pandemic, someplace they can turn to if they want to learn more about this topic?
DM: There are a number of resources. The Children's Oncology Group has developed what they call Health Links and documents in lay language that can be a resource for survivors who are struggling with physical illness and also mental health illness. There's a Health Link particularly for mental health issues following cancer, and also one for issues related to the COVID pandemic that I hope survivors might find helpful.
Dr. Schapira is associate professor of medicine at Stanford University School of Medicine and director of cancer survivorship at the Stanford Comprehensive Cancer Institute. She is also the Cancer.Net editor in chief. Follow her on Twitter @l_schapira. Disclosure.
Dr. Mulrooney is an associate member in the Division of Cancer Survivorship at St. Jude Children’s Research Hospital. He is also the Cancer.Net associate editor for pediatric cancers. Disclosure.