Evolving Care Models for Cancer Survivors

Podcast Transcript

Dale Shepard, MD, PhD: Cancer Advances a Cleveland Clinic podcast for medical professionals exploring the latest innovative research and clinical advances in the field of oncology.

Thank you for joining us for another episode of Cancer Advances. I'm your host Dr. Dale Shepard, a Medical Oncologist, Director of International Programs for the Cancer Institute and Co-Director of the Sarcoma Program at Cleveland Clinic. Today I'm happy to be joined by Dr. Abhay Singh, a Staff Physician and Director of the CHIP Clinic at Cleveland Clinic. He was previously a guest on this podcast to discuss identifying risk factors for secondary malignancy in breast cancer survivors and the risk of blood cancers in patients treated with type two diabetes with GLP-1 receptor agonists. He's here today to talk about care models for cancer survivors. Welcome back.

Abhay Singh, MD, MPH: It's great to be back Dr. Shepard. Thank you for having me.

Dale Shepard, MD, PhD: Give us a little reminder what you do here at Cleveland Clinic.

Abhay Singh, MD, MPH: At the Cleveland Clinic, as the Director of the clonal hematopoiesis of indeterminate potential or the CHIP Clinic, and then I am a physician scientist studying secondary malignancy, drug repurposing and then also looking for ways of early detection of second cancers in cancer survivors. A lot of things that we do are catered to the cancer survivors and survivorship in general, and that's where the CHIP Clinic comes in as well. CHIP Clinic sees a lot of patients who are cancer survivors, they've finished their therapy and then now they have a mutation for which they're followed over time.

Dale Shepard, MD, PhD: Let's go ahead and just, the CHIP Clinic is part of this whole survivorship effort that we have here at the Clinic, but maybe we'll go ahead and dive into that part and cover what exactly the CHIP Clinic is and how people get referred and what we're trying to learn from this CHIP Clinic.

Abhay Singh, MD, MPH: It's always evolving, so it started off as a research protocol that was enrolling cancer survivors. Again, we will dive into how we define survivorship, but how we defined at the time of the research protocol was those who have finished their treatments and they finished a chemotherapy, radiation therapy, they were introduced to the CHIP study, which is a simple blood test that looks for myeloid associated mutations in peripheral blood. These are mutations that are leukemia associated mutations, but there is no evidence of leukemia, no blood count abnormalities so these patients get enrolled on this study and they get a yearly blood test, NGS, next-generation sequencing where the mutation is tracked over time. And there are three paths that these mutations can follow. They can stay stable throughout one's lifetime, they can be spontaneous regression or they can progress to a blood cancer. And that's why the whole goal of the CHIP Clinic has been early detection and prompt intervention to prevent blood cancer from happening. Also, these patients are at a higher risk of cardiovascular disease compared to general population, so they get to see our colleagues in the Preventive Cardiology department as well.

That was the initial structure through the research protocol, that's how individuals were identified because they are survivors, they are not technically patients when they have completed, for the diagnosis of CHIP. Since then, there's been a lot of recognition. There's been incoming source of referrals as well, which is the germline clinic where patients get germline testing done and often they'll identify a mosaic variant that they think is a CHIP variant, so they'll find their way to the CHIP Clinic. Then there's a lot of tests that are being used in solid tumor world that test to detect any new actionable mutations that can identify incidental CHIP mutations. Those are other referrals.

And then a lot of referrals come through our benign hematology colleagues as well because they'll see patients with unexplained cytopenia or something as simple as elevated MCV and a bone marrow biopsy will be done and there'll be a mutation that's identified, but not meeting criteria for any hematological malignancy. That's another way of having patients come to the CHIP Cytopenia Clinic. I think throughout the nation, after communication with several other CHIP Clinics at academic centers, we have the most streamlined way of identifying patients early with clonal hematopoiesis of indeterminate potential, and we have one of the largest cohort of CHIP and CCUS, which is clonal cytopenia of undetermined significance patients here at the Cleveland Clinic.

Dale Shepard, MD, PhD: About how long have we been following people now in the CHIP Clinic?

Abhay Singh, MD, MPH: I think our first patient that was enrolled is now into the sixth year of follow-up.

Dale Shepard, MD, PhD: I know one thing that certainly is a factor, and we'll talk about survivorship in general here in a minute, is fear of recurrence. The whole psychological aspect of, is my cancer going to come back? And I'm sure you get that in the hematologic malignancies as well, but how does this work with patients? And now you're telling them that, well, you had a malignancy and that well could come back, but then there's this other mutation. How do you work through the psychological aspects of these findings that we think put people at risk, but we're not really quite sure what's going to happen?

Abhay Singh, MD, MPH: Yes, I am reminded of an instance that just happened three, four days ago. We have medical students come rotate in our Clinic and then they rotate with different providers and then they were like, "Dr. Singh your Clinic, we saw the last three patients and we didn't do any intervention. That must be easy." And my response to them was like, "Sometimes it's easier to tell that this is the treatment that's indicated and that's how we're going to proceed." But when you're telling someone that there is a risk of having something down the line, maybe or maybe not, that can be really anxiety provoking and that fear and that anxiety that goes on that I have this mutation that may become a blood cancer in the future is a very difficult feeling to counter. I think my role as a physician and the CHIP doctor at that time becomes to provide them the evidence that we have so far.

And then I think we've come a long way in the CHIP world per se as well because now we have risk stratification models where we can actually put in certain numbers, the blood count parameters, the mutation size, the number of mutations, and come up with a risk scoring system where mostly patients are at the lowest risk of having a blood cancer, like a risk less than 1% over the next 10 years. Some patients find reassurance in that that the risk is really, really low and the others are happy that they know of something and that is being monitored and that they prefer that being monitored. And the goal is that we have early identification, a prompt intervention and halt disease progression even if we cannot prevent it altogether.

Dale Shepard, MD, PhD: Makes sense. Let's take a step back. We talked about survivorship. How do we define survivor?

Abhay Singh, MD, MPH: I think that's an open debate, so I think it's very different at different institutions. I think it has to do a lot with varying philosophies, institutional practices, but I think the definition that I can relate the most with is I think it encompasses health and well-being of an individual from the time of the cancer diagnosis and through the remainder of their lives. It not only just covers the medical aspect post treatment, but also emotional health, psychosocial health, and then overall distress management and other factors as well. I think some of the definitions include survivors from once they've finished their treatment and then to a finite period of time, three years, four years arbitrarily, which to me, I think doesn't capture everything such as long-term effects, all the other things that go into the equation. I think I can relate the most with the definition from the time of cancer diagnosis to the remainder of their lives.

Dale Shepard, MD, PhD: Makes sense. It seems like at least as survivorship program started being developed, it was more likely it was at the end of therapy and like you said, maybe a finite time, five or 10 years. But now that we have such knowledge about late effects and things like that. How are we at Cleveland Clinic adapting our survivorship programs to take into account these late effects that patients might have?

Abhay Singh, MD, MPH: Yes. I think that the survivorship program here, it's a multidisciplinary survivorship program. There are other programs that are built in, cancer rehabilitation program, integrative oncology program, and then cardio-oncology services because a lot of long-term effects can be cardio-toxicity from varying treatments early or later on in the life of a survivor. And then certainly other focused approaches as well, such as special support for prostate cancer survivors. But I think one thing that looks into specifically the short-term and the long-term effects of several of the novel therapies that are coming through, let's say, CAR-T, ADCs, radioligand therapies, is the pharmacovigilance clinic. That is new to the Clinic and it's a multidisciplinary clinic where there's a rheumatology, endocrinology, hematology, cardiology all under one clinic and then making those referrals to those physicians is almost seamless. I think that's where all the short-term toxicities and the long-term toxicity can be very well managed. It's a newer model, so we're still learning about it, but I think that's one thing that Cleveland Clinic is unique from most other places

Dale Shepard, MD, PhD: Right now, that pharmacovigilance clinic seems it oftentimes focuses, like you say, more on the short-term aspects and that multidisciplinary care. Is the goal to have that manage a lot of the later effects and later survivorship issues, or do you think it's better to have that managed with their local oncologist or hematologist? What do you think makes more sense?

Abhay Singh, MD, MPH: I think to me, I think a shared care model makes a lot of sense or somewhere where there's an ongoing collaboration with the oncologist, with the PV, pharmacovigilance clinic, and even primary care providers. I think that shared model can go a long way because it can become onerous for one individual to have all the responsibility. Our cancer survivors are growing. We were at 20 million, we were about 3 million a couple of decades ago, and then projection is much higher numbers. People are living longer as well, which is wonderful. But with that we have to be well positioned to manage the long-term toxicities as well. I think PV clinic, pharmacovigilance clinic certainly has a role in short term. Long-term in the setting of if CHIP Clinic is integrated into the pharmacovigilance clinic where they're getting yearly blood draws, so there's some opportunity to identify things early. There's some long-term aspect incorporated into that, but as you said, currently it is positioned in a way that we are dealing more with the short-term toxicities of the treatment.

Dale Shepard, MD, PhD: What's the current climate in terms of coverage for survivorship care?

Abhay Singh, MD, MPH: I think certainly that can be better and it's a desire that still needs to be fulfilled. Oftentimes there can be reimbursement issues that can come through. I think having a sustainable reimbursement model is an unmet need currently.

Dale Shepard, MD, PhD: The thing you see about survivorship models is this personalized patient-centered survivorship. What exactly is that and how does that match up with more of the multidisciplinary? It's all part of the same thing, but what sets that apart? It's something you see as its own thing, but it seems related.

Abhay Singh, MD, MPH: Yes, yes. There's a lot of overlap. There's a lot of overlap. I think when we think about person-centered care, patient-centered care, we're thinking of the patient to be the driver and we are just navigating through with them, it's like their co-developing strategies. And I think that model helps the patient to be involved, stay adherent and leads to more satisfaction because they are driving their care essentially, and you're trying to just guide them and align with them so that you have a way to meet where their needs are and then tailor strategies accordingly, co-developing with them.

I think another thing about person-centered care is that it's looking at their individual cancer, their treatment, which can be so varied now, immunotherapies, different kinds of antibody drug conjugates, targeted therapies. It's looking at different kind of cancer, cancer itself. All cancers are not same, they're so heterogeneous, the risks are different, the genetic makeup is different. When we are looking at person-centered care and a person driving their own care, as a physician we are looking at all these different factors and trying to come up with a plan that is very individualized and the cliche, the very personalized plan.

Dale Shepard, MD, PhD: When we think about that personalized part, there's a lot of disease specific things that you end up seeing. When we think about our programs here at the Cleveland Clinic, are things mostly driven within a disease group or disease program, or is it more on the cancer institute level? Certainly the pharmacovigilance, a lot of different diseases come through, but so for more of that routine survivorship care, is it more driven institutionally or by program group?

Abhay Singh, MD, MPH: It's currently mostly by program group, the bone marrow transplant team have their own survivorship. The different cancer groups have their own survivorship. I think it's desirable to have a standardized survivorship care plan. I think Cleveland Clinic does really well in having those integrated into the EHR, making it a seamless experience. But again, still there's different groups doing the survivorship care. Eventually, the goal would be to have a very overarching and comprehensive survivorship program.

Dale Shepard, MD, PhD: How are we integrating things like virtual visits and remote monitoring and things like that?

Abhay Singh, MD, MPH: Yes, I think that becomes a very important thing in today's day and age, and especially if we are looking to advance care equitably, especially for those who have issues with access to care, with transport issues, childcare, those things can limit patient's participation in survivorship clinics. Having strategies such as remote monitoring, virtual telehealth, those things can help get patients the symptom monitoring that they need and then tailored interventions based on that. I think COVID helped in a beautiful way, for the lack of better phrase.

Dale Shepard, MD, PhD: One good thing that came from it.

Abhay Singh, MD, MPH: Yeah, one good thing that came out of it, that we all are so used to now telehealth, that those things can be integrated. I think sometimes the challenge goes far, because in the underserved areas there may not be access to a mobile phone that has video conferencing capabilities or there may not be internet, there may not be a computer that they can go on to do virtual health. I think from that standpoint, still early, but the ongoing efforts are there'll be virtual hubs, virtual nooks, where patients can go to a nearby hospital or a nearby clinic where they can do these virtual visits. Staying connected with the main survivorship program, but doing so remotely closer to their home in a clinic or a hospital. Those are the things that are desirable at this point.

Dale Shepard, MD, PhD: Another problem I encounter is older patients who can't necessarily navigate the technology. If you had some hub mechanism and they could get assistance with even just logging on.

Abhay Singh, MD, MPH: IT support.

Dale Shepard, MD, PhD: Even if they had the technology, being able to use it. One thing that seems to have taken on a bigger role recently are these early detection tests. How are these blood tests that look for early recurrences of tumors, how have those been integrated into survivorship and monitoring of tumors?

Abhay Singh, MD, MPH: Yes, I think I see them as a promising tool of the future. There's still a lot more that needs to be... They're still in their early phases. We have tests that are improving in sensitivity, specificity in general population for early cancer detection. In the world of survivorship we have not adopted them yet here at the Clinic largely because the lack of sensitivity, specificity. But I do see them having a role in the future in the survivorship clinics once we optimize those tests to have second cancers... It's challenging. Patients finish their cancer treatments, they go into period of survivorship where they are now in the period of healthy living and a normal lifestyle after a long time. But again, there's that risk that happens. It remains a small number of patients, 5% or so they'll have a second cancer, and if there's a tool, a reliable tool, accurate tool that can help us detect that, that will be something that we look forward to. We are not there yet, but I think their MCEDs or the multi-cancer early detection test will have room in the care of survivorship.

Dale Shepard, MD, PhD: Do you find most patients are receptive to survivorship programs? Sometimes they've had a traumatic diagnosis, they've had a long treatment period, and they just want their lives de-medicalized, for lack of a better way to put it.

Abhay Singh, MD, MPH: Yes.

Dale Shepard, MD, PhD: Is there pushback or resistance sometimes with patients to say, look, I want this behind me. I don't want to deal with it anymore, and survivorship as a reminder?

Abhay Singh, MD, MPH: I think yes, for some people they prefer less over medicalization or de-medicalization once they have been through so much. However, our experience with the CHIP research protocol and the survivor CHIP program is that most people who are presented with that study and the long-term follow-up, they want to enroll in the study and they stay on the study. It's also important to be cognizant and mindful of the fact that when you approach the patient, because when they're in a period of distress from the diagnosis, the treatments, the toxicities perhaps reaching at that time, although the survivorship definition may start from the day of cancer diagnosis, but there's so much happening in the acute phase that might not be time to discuss enrollment on studies such as the CHIP protocol or the CHIP study. That's why having survivorship program discussions after the treatments are done is sometimes more reasonable and patients are more receptive to that at the time.

Dale Shepard, MD, PhD: And then the last group to think about is how do we incorporate survivorship issues for caregivers? Because certainly the patient's there, but anytime they see a patient, there's more than one patient really in the room. They have caregivers, and there's been a significant impact on them as well. The people taking care of the cancer patients have needs as well. How do we work on incorporating the caregivers into survivorship?

Abhay Singh, MD, MPH: Yes, I think that's a wonderful, wonderful question. Something that we do not think enough and gets overlooked, but certainly needs a lot of attention. Caregivers go through a lot of burden as well during the care. They're taking time off work, but there's no support for that. There may be child care issues that they have to go through, but there's no support for that. And currently there's no reliable model or policies that would provide protection to them in terms of protected time or getting time away from work. I think certainly that's the one consideration that gets overlooked and needs a lot of attention where we should also consider something at policy level.

Dale Shepard, MD, PhD: Survivorship is certainly a huge thing we need to focus on. More and more people are living longer and some of our therapies that make them live longer certainly have some toxicities and things. It sounds like you're doing great work to put things together and appreciate your insight.

Abhay Singh, MD, MPH: No, thank you, Dr Shepard. Thank you for the kind words. I think we're still learning very early on in these stages, so as our patients live longer we'll understand their needs better and then tailor our activities based on that.

Dale Shepard, MD, PhD: That's great.

Abhay Singh, MD, MPH: Thank you so much, Doctor.

Dale Shepard, MD, PhD: To make a direct online referral to our Cancer Institute, complete our online cancer patient referral form by visiting clevelandclinic.org/cancerpatientreferrals. You will receive confirmation once the appointment is scheduled.

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