Tag Archive for: Shared decision making

HCP Roundtable: Strengthening the Patient-Provider Partnership in Myeloma Care

 Multiple myeloma experts Dr. Sikander Ailawadhi and Dr. Craig Cole explore how to strengthen the provider-patient partnership through actionable communication tools, workflows, and team-based approaches. Drawing from deep clinical experience, they highlight best practices for supporting informed, collaborative decisions, especially around innovative therapies like CAR-T and bispecifics.

See More from EPEP Myeloma

Related Resources:

How Can Myeloma HCPs Initiate Clinical Trial Conversations?

How Can Myeloma HCPs and Nurses Help Manage Patient Concerns?

Do Myeloma Treatment Advancements Create Care Challenges?

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients, EPEP program. I’m Dr. Nicole Rochester. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and overcoming practice barriers. In this myeloma healthcare roundtable, we are tackling the patient-provider partnership in multiple myeloma treatment decision-making.

Some of the topics we’ll explore today include: aligning treatment goals and quality of life preferences among myeloma patients, care partners, and their providers, sharing healthcare provider-to-provider best practices and real world strategies to reduce treatment burden and optimize outcomes, recognizing and addressing differences in treatment priorities between patients, care partners, and clinicians and applying these insights to clinical practice.

It is a privilege to be joined by Dr. Sikander Ailawadhi, Professor of Medicine in the Division of Hematology Oncology at the Mayo Clinic, Florida. Dr. Ailawadhi’s career focus includes the treatment of plasma cell disorders, multiple myeloma, Waldenstrom’s macroglobulinemia, and chronic lymphocytic leukemia. His research focuses on understanding the epidemiology and pathophysiology of these disorders, evaluating the benefit of various therapeutic strategies in different populations. Thank you for joining us today, Dr. Ailawadhi.

Dr. Sikander Ailawadhi:

Thanks for having me.

Dr. Nicole Rochester:

We’re also joined by Dr. Craig Cole, a board-certified hematologist. We are also joined by Dr. Craig Cole, a board-certified hematologist. Dr. Cole leads multiple clinical trials in multiple myeloma and has worked extensively with patient advocacy groups to empower, educate, and bring equitable care to everyone. Thank you so much for joining us today, Dr. Cole.

Dr. Craig Cole:

Thank you for having me. Thank you.

Dr. Nicole Rochester:

We have a lot to discuss as it relates to the patient-provider partnership and myeloma treatment decision-making. So let’s start with aligning treatment goals and quality of life preferences among myeloma patients, care partners, and providers. So I’m going to ask this question of each of you, but I’ll start with you, Dr. Ailawadhi. In the context of an increasingly complex myeloma treatment landscape, how do you approach shared decision-making with your patients?

Dr. Sikander Ailawadhi:

Dr. Rochester, you’re asking such an important question and thanks a lot for starting there. As you rightly point out, the treatment landscape of myeloma is becoming increasingly complex. In fact, if you ask 10, quote unquote, experts on myeloma of how the treatment would be, you’ll probably get 11 to 12 responses around them. So you can imagine that when patients who have just been given this devastating diagnosis along with their caregivers are trying to negotiate that path of decision-making, it can be quite complicated. So the way I approach it in my clinic is, I think before getting to the treatment part, to try to build a bond and a relationship with the patient and their caregivers, make sure that they understand about the disease and the diagnosis very well. 

They need to understand those ins and outs first. What are the markers in myeloma? What is the risk stratification? What is the disease stage? What are the symptoms they are dealing with? Just to make sure that we talk to them on a person-to-person level, trying to bring it down to their level of understanding. And then when we are starting to talk about the treatment options, the way I approach it is I try to lay it down by categories and kind of buckets of treatments with some broad treatment guidelines. Two versus three drugs, three versus four drugs, what are the different categories we are going to choose from and why we are selecting certain options, what is the data to support them?

Once we have come up with some decisions, once we have come up with some plans, I’ll also make sure that they are very aware of the side effects to expect and what to expect with treatment, what to expect in the next one month, in the next six months, over the next five years, et cetera. But then I’ll try my best to write that down in as much detail and simple language as possible in their notes. And I highly encourage patients to record the meeting or have a loved one, a caregiver on the phone if they were not present in person. And if they try making the notes, I’ll tell them, let me make the notes, let me write down on paper, and I’ll share this with you. And then you read my note, but I want your full attention as we are talking.

Then typically after the patient has left and gone home, once we have decided on a treatment, there will be an education visit, during which the nurse will contact the patient, again answer questions, and hopefully within these two or three touch points, we’ve been able to answer questions. It is very difficult, I completely understand, and we don’t have enough time. But that’s also the challenge and that’s also the opportunity for us. And I don’t know what…maybe Dr. Cole can also help guide this even further.

Dr. Nicole Rochester:

Yeah, thank you, Dr. Ailawadhi. Those are great practices. And Dr. Cole, we’d love to hear from you about how you approach shared decision-making. And maybe if you have an example where the patient’s input meaningfully shifted your initial treatment plan.

Dr. Craig Cole:

Yeah, just like Sikander had mentioned, myeloma is complex. For patients, it takes a lot of medical literacy to be able to navigate this disease. If you have melanoma you can go, I always worry about the…I always imagine, what’s my patient going to say when she goes to church? She has melanoma, she can just show them here’s my melanoma. If you have myeloma, then you have to be able to tell another person that you have a cancer of the immune system of a certain cell called a plasma cell that’s inside the bone marrow that I’m checking blood counts.

And it takes a lot in order to get through that. And shared decision-making for myeloma isn’t something that one day that I just walk into a room and say, we’re going to do share decision-making today. It’s a complete journey. And that journey starts with the first visit. So I do exactly what Dr. Ailawadhi said that I actually have the patient information about myeloma. We start with what the disease is. And I actually write down a lot of the information.

Instead of giving them a brochure and saying here you go, read this when you go home. I go over that brochure with the patient. And so we sit, I have my pens, they have their pens. I make sure that when it’s a new visit, when it’s the first couple of visits, that our scheduling people are sure to say, bring your family with you, don’t come alone. Bring somebody with you that can help with all the things that we’re going to talk about during their visit. And sort of too, so I go over every all the details. And I tell them my mom was an elementary school principal.

And I know that it takes three passes, three exposures in order for you to really learn something. So I tell the patients, there’s no pressure. There’s no test at the end, that we’re going to go over this again and again. And the goal set is that eventually you’ll understand this disease as well as I do. And that we’ll be able to talk colleague to colleague, that we’re not going to have this imbalance between the patient and the doctor, but we work together.

And the way to do that is really education. And that education doesn’t take place on one visit. It takes place on every visit, every time. So I had a patient just recently, and she’s 90 years old with myeloma. I put her on Dr. Ailawadhi’s clinical trial. So there you go. And how we got to that is that she came in with…she came from a nursing home. We talked to the nursing home and said a daughter has to come with her, really has to not just…they’re going to send the person with the nursing home. Daughter has to come with her. We sat down and had went through myeloma 101, kind of wrote down everything for her. And I asked her one thing is tell me something about yourself that’s outside of myeloma. Tell me something that hasn’t anything to do with this disease. So I found out she was a nurse, and she was a cardiovascular nurse for years. And so now we talk about that, her history. And I asked her when, on her second visit, about goal setting, and she said that we talked about options.

She said she wanted to not have pain, and she wanted to have more energy. And I said, well, here are the therapies that can get you there. And she was really interested in the clinical trial. She said, “I want to help other people behind me that will have this disease in the future.” That was very motivating for her. When I asked her about the goals of care, that was a very strong motivator for her. And so she decided to go on the clinical trial. I would have offered it anyway, but her motivation was definitely to go on the clinical trial. There have been a few bumps in the road, but she’s very happy with her care right now.

Dr. Nicole Rochester:

That is incredible. I love that both of you really talked about the humanity aspect of your encounters with your patients and the importance that they understand and getting to know them beyond their disease and making sure that they have the proper support during these visits. I really appreciate that. Well, we know that patients come to the table with lots of experiences and expectations, and all of those things can influence their preferences. So, Dr. Ailawadhi, how do you navigate situations where the patient’s goals may not align with the evidence-based recommendations for their disease?

Dr. Sikander Ailawadhi:

An excellent question. I’m so glad that we are having these discussions because we think about these things and we encounter these things, but we don’t end up talking about these situations all the time. So it can be a little challenging because I’ll be very frank. All of us have preferences of what we think is in a way…might be beneficial for the patient. And frankly, doctors, medical professionals, may have this kind of paternalistic view towards medicine. That happens very often.

Similarly, sometimes patients have that similar view that they just want their doctors to take the decision. But at the same time, in this kind of focus on shared decision-making, it is extremely important to understand where the patient is coming from, what are their beliefs, and why are those beliefs there. And frankly, if at some point, see, it’s important to remember our job is to guide the patient, do the best for the patient within our knowledge, our experience, et cetera. But what I say all the time to the patients is, well, we’re presenting these options to you. You’re more than welcome to pick what you want. Let’s discuss. If I don’t feel that may be the best option for you, I’ll put across my case.

But that said, if you take a decision which complies with your beliefs, your knowledge, your understanding, and you’ve decided to go there, we will still fully support you. We will try our best to walk you through that decision in the most appropriate manner. And I’ll give you an example. One of the very important treatments for myeloma today is CAR T-cell therapy. And I’ve recently had, maybe in the past month or so, had a patient who lives maybe an hour, hour-and-a-half away from us, but has good family support, and unfortunately has had disease that is progressing through treatment options relatively rapidly.

So we had a discussion, virtual visit, and I laid out some treatment options, but I strongly suggested CAR T-cell therapy because there’s a possibility that person may get a meaningful response with treatment. And the patient’s first response was, “Nope, not going to do that.” I said, “All right, let’s try to talk about it.” “Nope, not going to do that.” It took maybe a visit or two to get to the point that they were beginning to open up. And they opened up that the side effect profile was just extremely scary for them.

They had read about it. It was extremely scary. It took a third visit, till the third visit for me to try to convey to them enough that, well, all you’re reading is not necessarily all that will happen. Things may happen, but this is the range within which we expect. And our treatment, our management of side effects is much better now, et cetera, et cetera. So I made my case quite vehemently, quite enthusiastically. But despite that, the patient actually sent a message to the nurse because they were not very comfortable saying it again to my face that they really didn’t want to do that. So they sent a message to the nurse that, “Hey, we’re not going to do CAR T.” And they canceled an appointment. So I actually then called the patient and I said, “Well, if you don’t mind, may I speak with you for a few minutes?” They said, “Yeah, sure.” I said, “First of all, if by any reason you’re canceling the appointment was because you thought that you were not going according to my recommendation and that would hurt  me or hurt my ego or make me angry, please, that’s not the case. You don’t want to do CAR T.”

“We will not bring up CAR T, at least in the near foreseeable future. I’m not guaranteeing I won’t bring it up, but I may bring it up in the future, but we can still take care of you. We can do a lot for you. Please, if you’re okay about keeping the appointment and discussing alternative options, let’s discuss alternatives to CAR T. We have many, many things we can do for you.” That made a difference in which the patient then set up the follow-up appointment with his spouse because he wanted her to be there. And we discussed options, and now they’re going to start some other treatment.

In fact, I made a plan that they are going to be getting with their local doctor, so they don’t have to come an hour-and-a-half back and forth. But frankly, bottom line is that the patient’s choices, preferences, beliefs, goals, as Dr. Cole also mentioned, are paramount. And it’s important to be able to convey this to the patient. Our job is to guide. Our job is not to dictate. Sometimes we will come across these situations that the patients are taking a decision which may not be the best based on evidence. But if we really try to think about why the patient is taking that decision, I think that may be the best decision for that individual.

Dr. Nicole Rochester:

That’s such a great example, Dr. Ailawadhi. Thank you for sharing that and even for being vulnerable and sharing with us how things kind of didn’t quite go as well and then you were able to get the patient back on track. Well, speaking of CAR-T therapy, Dr. Cole, I’m going to address this question with you. Do you have any similar stories or have you identified communication strategies that have been effective in improving patient comprehension and engagement around some of these newer treatments like CAR T?

Dr. Craig Cole:

Yeah, you know that myeloma isn’t curable yet, right? So everyone at some point is going to have a relapse. And so right when I say to a patient, you’ll know this stuff as well as I do, once they kind of got settled into their induction therapy, once they got settled in, the one thing that we do is that we talk to the patients about the new therapies. Because after they kind of get settled in, now they’re kind of curious about what else is out there. So even when a patient is on maintenance therapy, there are people on maintenance therapy for years, and their visits can be pretty straightforward. And I use the opportunity during those sort of quiet time visits to talk about new therapies. Now my patients come out, walk in the door, and they say, what’s new in myeloma? And I mentioned the CAR T, and I mentioned under very, very easygoing circumstances I could, I could walk in and say, how do you do? How’s your maintenance?

I could walk out. But I sit down and I talk about these new therapies. So I talk about these are the new bispecifics, or really, you don’t need it now, but this is how they work, there are side effects. Then they come another visit, a couple months later, we talk about bispecifics, talk about how they work, encourage them to go to some of the meetings. I know the patient support meetings, they talk about this, they hear it from other patients. And I kind of lay the groundwork because I can’t go home and talk about the new myeloma therapies with my wife, because she’s heard it for 20 years. She doesn’t want to hear any more about myeloma, bless her heart. And so I talk about it with my patients. So then when the day comes that they actually have relapse and we’re talking about bispecifics, clinical trials, or CAR T, it’s nothing that’s foreign. They’ve heard this over the course of years. And so patient empowerment isn’t, like I mentioned earlier, patient empowerment isn’t you walk in one day and say, hey, it’s time to be empowered.

It’s a journey. It is a practice style that you, just like you practice piano and practice guitar, you practice patient empowerment every visit every day. And you, and I do, I think about that when I go and see a patient, have I engaged this patient so that they understand? Because if they don’t understand what I’m talking about, it’s not on them. That responsibility is solely on my shoulders. So if they say, I don’t understand what an M protein is, then I have failed at doing my job. I need to up my game a bit to make sure they understand that. And so it is really, it’s a journey over time to empower patients and to know about their options, even when we’re not engaging them on that visit.

Dr. Nicole Rochester:

Well, each of you have described just some really amazing ways that you interact with your patients and the personalized care and the conversations and the writing of the notes. And the thing that I’m struck by is that we all know there is very limited time that most physicians have to spend with their patients. So I’m curious, how are you doing this with the limited time? Are there certain strategies that you’ve implemented from a system level? Are there things that you would like to see adopted? And I’ll have you share one, Dr. Ailawadhi, and then I’ll go to you, Dr. Cole.

Dr. Sikander Ailawadhi:

So, you’re so right. In this time-constrained world where we have double-, triple-booked meetings on top of clinic and then grand rounds or tumor boards and this and that, it becomes very difficult. So, I think the first thing is that as an individual or even I would say for my institution, the guidance that we follow is, when I’m in front of a patient, I have to leave everything else at the door when I enter that room. So, in that particular visit, nothing else matters. It is only that patient and everything related to them.

That said, I shared an example earlier where to get to one treatment decision, it took almost four visits. And that’s the reality of the world. So, at least in our system, how we have it set up is that this barrage of messages and in-basket and information, et cetera, that comes, it is screened at a few tiers. So, messages that are related to medications, et cetera, there are clinical assistants who are constantly dealing with that and taking care of that. Clinical questions are typically being handled by our nurse or the pod nurses for the pod.

There are two of them who handle all the questions that come and are clinical and can be handled. At the next tier is that if they have any need for a clinical decision, they will first go to the APPs in the team, the advanced practice providers, which actually I should say one of the things we have implemented is the whole team sits together. So, there is about a five-step radius between me, my nurse, the nurse practitioner, the physician assistant, the scheduler, the research coordinator, everybody sits together for the clinic.

So, that helps that communication. And if they are not able to get the answer with the APP or if it’s a very specific question which I must answer, it’s a treatment-related guidance or a change in management or an urgent message, then I will be involved in that. So, I think we have this tiered work or a process which tends to work good. There are some tools that are being implemented. I personally don’t use that, but there are AI tools for documentation, for example. When we are with the patient, the notes are almost finalized before even we leave the room. So, those AI tools really help with taking away some of that documentation burden. So, I’ll stop with these two examples, but over to you, Craig.

Dr. Craig Cole:

I need one of those. So, one thing, I loved everything that you said, and we kind of do some of the same things that it’s kind of tiered, that I’m not, when a patient is ruined, I’m not the first person that they’ve seen that day. And some of the questions have already been…they may have or concerns or problems have already been screened by one of our, by like our pod nurses too. So, when I walk in, if they’re having a problem with their central line, that’s being taken care of in the background while I’m with the patient. And so, I think for some of the complex patients that we…some of the patients on maintenance there, but I don’t ask the nurse to really go in and see them. But some of the more complex patients, the pod nurse will go in and kind of screen through to make sure that everything’s okay so I can be prepared, which then streamlines things. The other thing is I make sure that I tell patients to write down your questions.

Come in and write and have your questions set because it will streamline, instead of patients kind of hemming and hawing and saying, gosh, what was I going to ask you? I think the biggest thing which has really helped is I congratulate patients when they bring in their notes. I say, those are fantastic questions. I’m so glad that you wrote them down, which then encourages them to do it again.

And then it really, I have one patient, bless her heart, and she always has, I think she works really hard at making 20 questions because some of the questions like 17, 18, 19 are just, they’re definitely filler questions, but her magic number is 20. So we just hit, hit, hit, hit, hit, hit, hit. And usually, and I say, make sure you incorporate questions about how you’re feeling and what you’re doing now and how you’re doing now and as part of our visit. And it streamlines things quite a bit. And sometimes I ask to make a copy of their questions. So when I make my note, I have at least a template of some of the stuff that we talked about.

But having an organized visit as much as you can with a patient, of course, are going to be things that kind of get you by surprise. The other thing is just like Sikander said, I am a time, very, very time, timed person. And I’m always thinking, gosh I’m running late, but I’m with the patient. I encourage my patients. And I do, when I do talks for patients, I say, slow down your doctor. If your doctor’s running too fast, slow them down. I even tell my patients that if I’m going too fast, slow me down. So all my patients know that I run a little late, sometimes a lot late, but they know the reason I’m running late is I had to spend time with somebody. And they’re very understanding for my tardiness.

Dr. Nicole Rochester:

That is wonderful. Thank you to both of you for such a rich conversation about engaging patients and their partners. So now we’re going to shift to talk to our healthcare provider audience about best practices and real world strategies to reduce treatment burden and optimize outcomes. And I’m going to start with you, Dr. Ailawadhi. As the therapeutic arsenal for myeloma continues to grow, how are you and your team proactively addressing treatment burden, whether related to toxicity, visit frequency, or logistical demands so that your patients are adherent to therapy and also having quality of life?

Dr. Sikander Ailawadhi:

So extremely important question that you raise. Treatments are clearly becoming very complex. The needs on the patients, the needs on the caregivers, the needs from the practice, from us, from our staff, they are just increasing tremendously. Literally, our nurses had to be trained how to handle CRS-related calls, how to handle neurotox-related calls with all these new drugs, et cetera. So it’s required a lot of that training of our staff, our side first, to be able to handle all the anticipated and unanticipated asks from the patients.

That said, I think the goal, and I think this is something that as a myeloma community, all of us have to spend time on is try to, like you rightly pointed out, decrease the treatment burden. I would say decrease the burden on our patients collectively. We have several drugs that have been now approved where we’re still learning how to use them. None of us in the medical community feel that those drugs are optimally dosed or their frequency is optimal, et cetera. So I think in the day-to-day work, what we’re doing is providing tons of education and awareness opportunities for patients and caregivers to try to arm them with as much information as possible prior to starting a treatment, so preparing them.

We have an effort going on which is a little bit tricky and difficult, but almost giving an informed consent-type information to patients and caregivers when they’re even starting standard of care treatment because just preparing them. We don’t do that for standard of care. We give tons of information for trials. We just don’t give that much information for standard of care. We have certain videos that have been prepared, and we share those. We host those on YouTube, for example, and we share those with patients and give them links saying, hey, watch this, see this. It’ll help you understand, et cetera.

We’re also planning some, so I think we’re trying to harmonize our own practice where we’re trying to say, okay, at such and such intervals as a group, we have decided we will do XYZ testing. Based on that, we will discuss with the patients the current data, and if need be, we will space out their treatment so their visit frequency decreases, et cetera. And then at our institution, we also have, at Mayo Clinic, we also have this opportunity for what’s called remote patient monitoring, so all our patients who start on treatments like bispecifics and sometimes even CAR-T patients are kind of connected with our remote patient monitoring infrastructure where they don’t even have to come in that frequently, and, of course, they don’t have to stay in the hospital.

We treat all our bispecifics as outpatient, but by doing those things, we’re trying to reduce their burden for having to deal with the treatment and its impact. We want the patients to feel better. We want them to have improved quality of life, and frankly, we want them to stay home when they don’t really need to be out of the home. We’re trying to gear an infrastructure, we’re really far from being perfect. I think in a myeloma community, all of us are far from being at that optimal state, but slowly, gradually, we’re making progress towards it.

Dr. Nicole Rochester:

Thank you so much, Dr. Ailawadhi. Dr. Cole, kind of staying on this same topic, when we think about patients who are receiving multiple lines of therapy or maybe those who are experiencing functional decline, how do you adjust your strategies over time to engage with those patients?

Dr. Craig Cole:

Yeah, it is, as patients kind of go through their journey and as they go through treatment lines, I am sure not to assume that the treatment goals that we had 10 years ago are the same treatment goals that we have today. And so it is, we have these periodic, when I’m meeting with my patient, meeting with their family we reassess what are the goals of treatment? I had a patient with high-risk disease that had come in to see me a few years ago and their goal was, “I want to be MRD-negative.” And I was like, okay, we have studies, we have therapies that can try to achieve that goal. And then later on, years later, after a couple of relapses, we talked about what was the goal? And their goals had shifted. Their next therapy after they had failed a CAR T could have been more aggressive this, more aggressive that. And I said, “So with everything that’s been happening is, what’s your current goal? What do you want out of the next decision that we make?”

And they said, “Really, I just want to have enough energy to go to my granddaughter’s graduation.” And it wasn’t so much being MRD-negative, but it was very different. And so we de-emphasized a lot of the lab tests the M proteins and started really working on that aspect, which included involving a lot of palliative care during their treatment journey. And I think one important point is that involving the team shouldn’t be a surprise. When the team walks in the room with me, it shouldn’t be, “Oh, my goodness, I must be dying.” It’s that, “Yes, I met the social worker. Yes, I’ve met the palliative care doctor years ago, months ago. Yeah, I know these people.”

And when the goals have changed, enacting the multidisciplinary team isn’t such a surprise. And it makes that a much more comfortable transition and is not a surprise. A lot of patients say when they see palliative care, they’d never met them before. They’re that can be really frightening to meet a new person like that. In that situation, where they’ve met them before, they have rapport already, then it’s not such a bad transition. And then all of us we circle the wagons around what that goal is. And I tell my patients, that may change in a few months, it may in a few years, your goal, but make sure you verbalize that to me and make sure that I always ask that.

Dr. Nicole Rochester:

Thank you so much, Dr. Cole. Well, as we prepare to wrap up, we’re going to talk a little bit about treatment priorities and how they may differ between patients, their care partners, and their clinicians. So, Dr. Ailawadhi, in your experience, what are the most common differences in treatment priorities that you’ve encountered? Maybe you can share one example and how you successfully navigated those challenges in those situations.

Dr. Sikander Ailawadhi:

Sure, absolutely. So there’s actually, I think in myeloma, we’re lucky to have some of this question even supported by research. So there have been a couple of studies now done, one through the IMF even, where they looked at the doctors’ priorities and the patients’ priorities. And there is also some similar work that Dr. Cole and I actually have been able to collaborate on together and present at ASH a few years ago. And it seems that the doctor’s priorities are always very different from the patient’s. The doctors are always focused on this primary objective, secondary objective, PFS, OS, response rate, MRD negativity.

And majority of the times, while the patients do want to live longer, please don’t misunderstand me, but the focus on quality of life, the focus on symptom control, the focus on burden on the patient and their caregiver and the family, et cetera, is paramount and weighing them down all the time. So I think trying to understand, which I think Dr. Cole mentioned very nicely, is trying to understand that patient’s goals. What are they looking for in the treatment? And trying to meet them at that level becomes extremely important.

And if I was to give another example of specifically where things changed, I think Dr. Cole mentioned, for example, a graduation for a patient’s family member or child. I’ve had similar experiences where we came in with treatment options. So I’ll share with you, there is one patient, very dear patient, where it’s been a constant struggle to figure out the treatment options for that person because, to me, she may look like a myeloma patient, but when I try to dig deeper over these past maybe six or seven or eight years, I’ve known her, she is a grandmother who has custody of her grandkids and is taking care of them. She has her own daughter who’s going through some medical and family issues of her own so cannot take care of the grandkids or her kids.

So this patient of mine has custody of all her grandchildren. She lives about 30 to 40 minutes away from where we are. So the distance is a constraint. I’ve tried my best connecting her with their local community hematologist, but somehow that didn’t work out for her. So she insists on coming here. So on the face of it, while our team talks about, oh, it’s so difficult to get her to come or oh, so difficult to check labs. It’s so difficult to do this or that. I’ve been discussing CAR T with that patient for the past almost a year.

We have never been able to do that for the simple reason logistics don’t line up. So finally, we said, okay, why do we even keep talking about CAR T? This is the ideal patient who’s going to go to the bispecific antibody as long as we can get her to do that.  And so we’re tailoring the treatment plan to that patient’s goals because while she wants to live longer, she wants to take care of her grandkids. She wants to be able to stay at home as much as possible, provide some medical care to her own daughter while getting herself treated. So I think understanding these goals and trying to tailor the patient’s treatment with all our knowledge and all our biases and all our preconceived notions and this and that, the bottom line is that the needs of that patient must come first. And whatever the literature, the this, the that, the articles, the trials, that has to all conform to that one patient’s need at that moment.

Dr. Nicole Rochester:

Absolutely. Thank you so much. This has been an amazing conversation. Unfortunately, it is time to wrap up. And I want to give you all the opportunity to share closing thoughts. You’ve shared so many important tips today. So many things that the audience will be able to take away from this conversation. But if you were to summarize it all into one closing thought, I’ll start with you, Dr. Cole. What’s the most important takeaway message that you want to leave other health care professionals who are watching?

Dr. Craig Cole:

No, and thanks for the opportunity. This is a passion of mine. And what I hopefully get across to our fellows and our residents is no matter what the discipline, no matter what the field of oncology, these are really, really important things to incorporate in your practice. And I think the one thing is that patient empowerment and patient education is not a one-time event. It is a style of practice. It’s something that you do every visit, every day, every day that you see a patient.

And the question I always ask myself is, have I empowered this patient? Are they engaged to this disease? And I never blame the patient.  I always take a look inward if I’m not achieving those goals. So my takeaway is, know your patient. Know who your patient really is. Just like Sikander said, she may be a myeloma patient, but she’s someone’s grandmother and primary caregiver. Knowing those details goes a long way, goes a long way in patient care and patient empowerment. That levels the playing field between you and your patient so that your partners in the journey, and it doesn’t have a paternalistic dynamic.

Dr. Nicole Rochester:

Thank you so much, Dr. Cole. What about you, Dr. Ailawadhi? What’s your closing take-home message for the audience?

Dr. Sikander Ailawadhi:

So, Dr. Rochester, again, thanks for this opportunity. I think this has been a great discussion. So I think my thought, quite similar to what Craig mentioned, I think, as you’ve pointed out a couple of times in these questions, that the treatment and management of myeloma is becoming very complex. And when we try to say on top of that, we have to reduce disparity, we have to improve shared decision-making, we have to give the patient time, we have to empower the patient, we have to educate them, the patient should know what questions to ask.

There is so much of this competing thoughts with constraint on time, staff, et cetera. My thought or my suggestion to our colleagues who are listening out there or spending time, and I thank them for spending their time listening to this program, is that it’s probably a good idea to take a step back, think of all the barriers in the ways of that patient, in the ways of a physician, in the ways of that practice, try to list all those barriers and start somewhere, start making some changes in your workflow, in your practice, and how you see the patient, how you talk to the patient.

We are, I would say, blessed, that one, the field is improving, but we also have several better tools, AI tools, communication tools, et cetera. So once you have an inventory of the barriers, start chipping away at them. And slowly, gradually, you will start seeing incremental improvements in how we are empowering the patient, but also empowering the practice, empowering the physicians, the healthcare providers. I think it’s important to help them start somewhere and hopefully incremental changes will make that bigger, meaningful difference.

Dr. Nicole Rochester:

Well, thank you both for just everything that you shared today. I feel like if I were to summarize this conversation, you all really talked about the art of medicine. There’s the science of medicine, and there’s the art of medicine. And so you all have really just articulated the art of medicine and the importance of connecting with patients and meeting them where they are and getting to know them as people outside of their disease. So thank you again for this riveting conversation. And thank you to those of you who are tuning in to this Empowering Providers to Empower Patients program. I’m Dr. Nicole Rochester. Have an amazing day.


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What You Should Understand About Myeloma Clinical Trials

 In this Collaborate Myeloma animated video, nurse Bianca and myeloma patient Suzanne explain the basics of clinical trials, including the phases of clinical trials, discuss common patient concerns, and review the potential benefits of joining a trial. They also share key questions to ask your health care team when considering a myeloma clinical trial, so you can feel informed and empowered when making care decisions.

See More from Collaborate Myeloma

Related Resources:

Collaborate | Being an Empowered Myeloma Patient

Understanding Myeloma | How You Can Collaborate in Your Care

Understanding Myeloma | How You Can Collaborate in Your Care

Advice for Setting Myeloma Treatment Goals and Collaborating on Care Decisions

Advice for Setting Myeloma Treatment Goals and Collaborating on Care Decisions


Transcript:

Bianca: 

Welcome back! I’m Bianca and I’m a nurse specializing in myeloma care. In this video, we’re going to talk about what clinical trials are, why they matter, and how they may fit into your myeloma treatment plan.  

And joining me again today is Suzanne! 

Suzanne:   

Hi everyone! I’m so glad to be back to share my experience. Clinical trials can sound overwhelming, but they’re actually an important part of how myeloma treatments improve.  

And, for people like you and me, they can be an opportunity to access the latest, most advanced therapy. 

Bianca, can you start by explaining what a clinical trial is exactly? 

Bianca:   

Of course. A clinical trial is a study that helps researchers understand how new treatments work, or understand new ways of using existing treatments. Clinical trials also demonstrate the safety and effectiveness of therapies for people with myeloma. 

Suzanne:   

When my doctor first suggested a clinical trial, I was hesitant. But after discussing trials with my team and learning about the process and safety measures in place, I realized that clinical trials are carefully organized, and I would be closely monitored by several team members.  

Bianca: 

That’s a great point, Suzanne. You should also know that participation is always voluntary, and patients can choose to leave a trial at any time.  

And, as you mentioned, trial participants are monitored more closely than individuals who are receiving standard care. This enhanced monitoring is an essential aspect of ensuring the safety and effectiveness of new treatments.  

Suzanne:  

Good point, Bianca. It’s also important to have a good understanding of the trial process. Can you explain the phases of clinical trials? 

Bianca: 

Sure! Clinical trials are organized by phases: 

  • Phase 1 tests the safety of the treatment, finding the appropriate dose that produces the fewest side effects. 
  • Phase 2 further assesses the safety of the therapy. The treatment is tested on more humans with a specific disease. 
  • Phase 3 compares the efficacy of a new therapy to the standard-of-care treatment. 

Suzanne 

Thanks for that explanation, Bianca. When my doctor mentioned a clinical trial, we talked about how it could help me and why it was a good choice for me at that point in my care. The trial I joined gave me early access to a therapy that wasn’t widely available yet. 

Bianca: 

That’s one of the key benefits—clinical trials may provide access to cutting-edge treatments. They should not be considered a last resort option – clinical trials can, and should, be considered at any stage of care. 

Suzanne 

That’s right. And, it’s important to ask questions before you begin any therapy.  

Here are some questions to ask your doctor when considering a trial:   

  • Why is this treatment a good option for me?
  • What is the phase of this trial?
  • How often will I need to come in for appointments?
  • How is the therapy administered?
  • What are the potential side effects?
  • Will participation require travel or extra tests?
  • And, what is the cost?   

Bianca: 

That’s great advice, Suzanne. Your care team can help walk you through the process. And some trials even provide support with transportation, lodging, or other logistics – never hesitate to ask. 

If you’re interested in potentially joining a clinical trial, you can start by:   

  • First, asking your healthcare team if there are trials available for your specific type of myeloma.   
  • Then, review the pros and cons with your doctor and care partner.   
  • Be sure to ask about logistics. This includes time commitment, any travel, and cost.  
  • And finally, ensure that you AND your care partner feel comfortable with the decision before moving forward. 

Suzanne: 

Thanks, Bianca – really good advice! Being part of a clinical trial made me feel like I was contributing to the myeloma community. But it’s a personal decision. The most important thing is to make a choice that’s right for you. 

To learn more about myeloma and clinical trial participation, visit powerfulpatients.org/myeloma. Thank you for joining us! 

Helping Patients Navigate SCLC Treatment: Tools, Transparency, and Supportive Care

Dr. Jacob Sands and Nurse Practitioner Stephanie McDonald both of Dana Farber Cancer Institute discuss the complexities of treatment decision-making for small cell lung cancer, exploring how providers can help patients navigate overwhelming options.The panel discusses practical tools for educating patients about side effects, the crucial role of palliative care, and why early support can dramatically improve both quality of life and outcomes. 

English Guide|Spanish Guide

See More from EPEP SCLC

Related Resources:

Enhancing Collaborative Decision-Making in Small Cell Lung Cancer Care
Enhancing Collaborative Decision-Making in Small Cell Lung Cancer Care
Empowering Patients with Small Cell Lung Cancer: A Team Approach to Tough Conversations
Empowering Patients with Small Cell Lung Cancer: A Team Approach to Tough Conversations
Small Cell Lung Cancer Care: Striking a Balance With Urgency and Shared Decision-Making
Small Cell Lung Cancer Care: Striking a Balance With Urgency and Shared Decision-Making

Transcript:

Dr. Nicole Rochester:

So, Ms. McDonald, I want to go to you, because Dr. Sands just described some very exciting treatments with very promising results. And I can only imagine that this information, while great, is also overwhelming to patients when they’re presented with all of these options? So are there specific decision aids or tools that you use when you’re talking with patients and families to help them understand the risks and the benefits of the different treatment options as they’re making decisions?

Stephanie McDonald:

So, yes, there are a lot of different treatment options. And with that, you know, we need to be aware of the potential toxicity associated with the treatment that patients are getting, which don’t come without risks. Right. Most patients do pretty well on immunotherapy, but there definitely are toxicities, you know, as far as, like, colitis or pneumonitis and rashes. There are things that are going to be education points that need to be made with patients to know what to look out for depending on what treatment they’re getting.

So I think it is incredibly important not only to provide education sheets to patients to reinforce these discussions, but like I spoke to earlier, I have a separate visit with the patients to be able to spend at least an hour the first time they are given a treatment plan, to be able to feed through all of the potential side effects. And I don’t want to overwhelm patients because you could be a bad, you know, commercial going over every single side effect. But we do need to be realistic with patients about what to be on the lookout for, what might come up, when to call if something does occur.

So I think the most important thing is breaking it down for patients to really easy-to-understand information and you can really gauge. I prefer to see patients in-person or at least have a virtual encounter with them over like a telephone encounter, because you can really gauge how a person might be responding to what you’re teaching them.If someone’s a deer in headlights and they’re overwhelmed by the information that you’re sharing, you need to be able to stop, take a few steps back, and break it down to easy-to-understand information for not only them but for their family members.

I think it’s really important that we also care for the family member as well. IWhen you walk into the room, you’re not just taking care of the patient, you’re taking care of every single person that is in their life. Like they have supportive families who are coming to these appointments who are equally as overwhelmed, or maybe there’s a shift in their role. And now that maybe somebody was a primary caretaker, very active and matriarch, or a patriarch in the household, and now there’s a shift in a whole role and dynamic for how these patients are going forward along their journey.

So we need to be able to spend time to unpack all of that to really understand how we can best support these patients. So besides just education tools, which I think just help reinforce the information that we go over with them as far as breaking down what are the side effects of treatment, how often will you be coming into clinic? People want to know simple things like what do you dress comfortably to come into clinic? What does the infusion room look like? It’s things that maybe as providers we don’t take a moment, because it’s second nature up to us to know kind of the…what the logistics are to somebody’s day in an infusion center.

But this is brand new information for most patients, and that can be incredibly crippling and overwhelming. So on top of providing concrete information as far as what side effects to expect, I also want to be doing a real time evaluation about what their supports are, what their needs are, are they losing weight, are they coming in and need help right off the bat with a dietitian? Are we assessing for their nutritional needs? Are we assessing their psychological needs? Because we know that anxiety, depression, fear of the unknown are very common emotions as a part of a cancer diagnosis and especially one as significant as small cell lung cancer.

So we really want to be talking to patients about the resources that we can encourage them to tap into or think about and talk with their family if they think they would benefit from these. I think one referral that I think often goes later in offering to patients is referrals to palliative care. And I think I just want to make a quick point, and Dr. Sands can talk to it as well, is the importance of implementing palliative care along a patient’s journey early. And there is data to support that when you implement palliative care services early, patients are living actually longer.

Jennifer Temple put out a study probably several years ago, Jacob, you could probably quote me on the date of that. But it’s shown that patients are living longer with improved quality when resources such as palliative care are implemented earlier. And I think it’s very difficult for patients when they hear the word palliative care. They already have this notion in their head that they don’t understand actually what it is. I think a lot of patients think that it’s hospice. They think I’m dying, you, you’re sending me to hospice. There are no more treatment options.

But I implement palliative care as an understanding of supportive oncology. How can we support you to improve your quality of life from the get-go of when you come in and start your journey? And, I make these referrals early. I do it in a non-threatening way and just lay it out as an additional support to help improve their quality of life and really balance the treatment that we’re giving them with again improving their quality of life over the long term. So I do think that referrals to palliative care should be considered and implemented early in a patient’s course in treatment.

Dr. Nicole Rochester:

Dr. Sands?

Dr. Jacob Sands:

Yeah, I agree. Supportive oncology is such an important component, and they often can play a role in helping with controlling symptoms like pain. I mean, of course, I want to know about pain. Of course, we can manage pain as well and I’m happy to add that into office visits. I also find though that for patients sometimes having visits where they’re talking more about those symptoms and others where they’re talking more about the cancer, actually for some patients works better for them. I am happy to help manage pain and do other kinds of medications around symptom management. So, you know, that can also happen within our clinic as well.

But like I said, I think for some patients, it works better for them having these two different teams that they’re interacting with and kind of sharing their story a bit more. It also allows them to really share that story in the way that they want to talk about it. And sometimes those are two different ways that they want to talk about it. You know, also related to the whole shared decision-making and discussion of toxicity profile versus benefits and stuff, I think I’ve often heard patients come in, you know, I see a lot of second opinions and such.

And so they’ll come in and say, well, this doctor told me all of these horrible things that are going to happen with the treatment. And so why would I even want to do that? And, you know, this is…I never actually know what was said to somebody, right? Because people are telling me what they heard, and I’ve heard patients come back or, you know, they get admitted to the hospital and what they tell the inpatient team about my discussion with them. I’m like, oh, I would never say something like what you just said.

So again, patients are experiencing all of this in an emotional way, and I think we have to be attentive to that. So the way that I’ll often talk about this is not just a matter of it’s not. I want to highlight what it’s not first. It is not saying, oh, all of these terrible things could happen. Because that way, if it does, I told you that was a possibility. Okay, that’s not necessarily the transparency we’re going for. The transparency we’re going for is kind of the overall context. Like, hey, this is the overall risk. Yes, here are some things, but here’s the likelihood of those things.

And so what I’ll often do for patients is I’ll often use the analogy. I often talk in analogies. I think that makes it more accessible. For this one, I’ll commonly say, if I were to ask you what could happen on my drive home, then you’re probably going to say, oh, you might hit some traffic, but you’ll be fine. And if I say, well, what are all the things that could happen? Now, that becomes this long, scary list. Now I often say off the bat, like, a drive home is nothing like having cancer.

I’m not saying that these are comparable, but just talking about it in a way in this analogy, so we can give more context so when I talk about, oh, the risk of immunotherapy, okay, you can end up with type 1 diabetes. You can have inflammation and problems with your heart. Okay, these sound like really severe, scary things. The likelihood of this kind of a thing happening is like on the scale of a bad car accident. Yes, it can happen, but this shouldn’t drive your decision-making. That’s very different than just listing out all the different things that can happen.

And I really encourage other providers to talk with their patients in some kind of a way that provides that. We’ll say, okay, here’s the long list of all the things that can happen. More realistically, what I expect is this. 

Dr. Nicole Rochester:

Yeah. Thank you for highlighting that. Thank you for highlighting that balanced approach. I love the analogy with the ride home. I think that’s great advice for providers. 


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Small Cell Lung Cancer Care: Striking a Balance With Urgency and Shared Decision-Making

How can experts strike a balance between urgency and shared decision-making? Dr. Jacob Sands and Nurse Practitioner Stephanie McDonald of Dana-Farber share how they navigate the urgency of starting treatment while prioritizing shared decision-making in small cell lung cancer care. They explore the importance of open communication, normalizing patient overwhelm, and building trust through collaborative care. 

English Guide|Spanish Guide

See More from EPEP SCLC

Related Resources:

Enhancing Collaborative Decision-Making in Small Cell Lung Cancer Care
Enhancing Collaborative Decision-Making in Small Cell Lung Cancer Care
Turning the Tide: Clinical Insights Into a New Era of Small Cell Lung Cancer Treatment
Turning the Tide: Clinical Insights Into a New Era of Small Cell Lung Cancer Treatment

Helping Patients Navigate SCLC Treatment: Tools, Transparency, and Supportive Care

Transcript:

Dr. Nicole Rochester:

Staying where you just left with this degree of urgency, how do you balance the urgency of starting treatment with this shared decision-making? And are there any tools or any tactics that you can share with the audience?

Stephanie McDonald: 

So first of all, I think being honest and having transparency with our patients, I always really try to aim to provide really clear, open communication about their diagnosis and or summarizing their treatment options that were reviewed with them. I think, you know, I’m sensitive, but I want to be really honest in explaining kind of the nature of their illness and really that urgency to start treatment. But like I said, I also want to give space to be able to ask questions and express concerns.

I’m also open about the, you know, the advances in treatment associated with small cell lung cancer with, you know, improved response rates and a variety of clinical trial options. I know Dr. Sands could probably speak to that even more. But I really do think it’s important that we have these discussions with their patients, because it really is a different field now than it was even 5, 10 years ago when patients are diagnosed with small cell lung cancer. And so I think it’s really important to have a conversation with these patients about balancing treatment with their goals of care and really understanding what their goals are, what they find as kind of important to them, what’s important to their family.

But to be able to just speak with patients, it’s not always like a tool but just having a listening ear and letting patients ask questions and being with them to be able to answer all their questions that they have.I feel like that builds a very trusting relationship from the get-go, which I think is crucial, especially with this diagnosis, when things can change pretty rapidly.

Dr. Nicole Rochester::

Thank you so much. Yes, Dr. Sands.

Dr. Jacob Sands:

Oh, I mean, to that point, the two visits can be very, very helpful, where when I’m talking with patients, I will often call out. I mean, frequently I can tell, like, hey, someone. They lost the whole information we’re discussing. Like, they went into their own head. It’s natural. The situation often just feels surreal with people. They were fine, and now all of a sudden, they’re in an oncologist’s office talking about having small cell lung cancer. It’s disorienting. And I’ll often acknowledge that for people, I’ll say to them, hey, I usually find that people just feel the room spinning around them in the middle of a discussion like this. And if you feel that way, it’s totally natural. And I’ll often say that when I can see that someone has lost me, or it doesn’t seem like they’re tracking everything I’m saying. And usually people say, yeah, I don’t know what you said, but I think in doing that one, my goal is to essentially relieve any pressure. Like, hey, if you’re not catching everything I’m saying, it’s okay. We’re going to come back to it, because you’re at the center of all of this.

And I’ll call that out. Sometimes when discussing treatment options as well, I’ll call out common misconceptions. Oh, people usually come in here thinking that if they get chemotherapy, that means they’re going to be laid up in bed vomiting without hair. And almost always people go, doesn’t it? And thankfully, nausea is not nearly the problem. It used to be the first-line regimen for small cell lung cancer. People do lose their hair. And I try to really be very up-front about the things I expect, but also being very up-front about the things I don’t expect. Yes, they can happen, but I don’t expect that.

People often come in thinking the worst of everything, that a lung cancer diagnosis means that at any moment they can just drop dead, and any treatment is just going to cause a whole bunch of toxicity. And thankfully, that’s not actually the equation. And if that were the equation, then being an oncologist would essentially be torturing people, and that’s a horrible job, and we wouldn’t do that. But the goal in all of this from the beginning, most people want to be very clear their goal is prolonged quality of life. And so I will frame the discussion around that goal and make sure that we’re on the same page about the reason that we’re doing any of this, the reason we’re discussing it, and also making it very clear that they have a choice in all of this.

Dr. Jacob Sands:

But I think some of that is also framing it in a way that feels right where it can be hard sometimes to make a decision. And I’ll say it’s normal to not be sure what to do sometimes, because there is not an option here that’s appealing. There is no option that’s like, oh, that sounds great. We’re choosing between two things we don’t want. So let’s kind of anchor around what is going to drive those decisions. Usually for the first treatment, that’s not such a dilemma. I mean, this is an aggressive cancer that the first treatment often works great, and it has the real potential of working for a very long time. This is wonderful. Our first-line treatment really is very effective.

And it’s exciting that we do also now have other often effective treatments that we can discuss. And so I know we’ll kind of get to that a little further down the line. But essentially what I’m highlighting is anchoring around what the patient is emotionally experiencing, because we all know it’s tough. Like, we work in an intellectual space, but we all live our lives in an emotional space. And so that’s where there can really be a big disconnect.

If we’re just talking, like, computer. But people are living their lives emotionally. You flip the script, and all of a sudden the healthcare practitioner is the one that’s disoriented. If it’s like our own lives, that someone else is interacting with us. So we have to be attentive to that and kind of, what are the beliefs coming in? Okay, what is the reality of those? And how much of a factor and how much do we really expect in all of this as a way of balancing this out? Now, that being said, even with all that effort, the room spins around people.

And so for them to then have a separate visit with Stephanie where she’s going to go through things in a different way, and then that ends up being another way. Like, okay, they got all that. They’ve maybe processed some of that. It’s impossible to process everything but some of that. And now they’re meeting fresh again and going to go through things in a different way then I think people retain quite a bit more. It’s also really important because Ms. McDonald and them are going to interact a lot as well. We’re a care team and so I often say to them, hey, I really want you to meet her, because she’s an important part of the team too. And that way she knows you. You know her because we work together.

Dr. Nicole Rochester:

I  really appreciate how both of you really focused on humanizing the patient and normalizing the overwhelm and the confusion and all of the emotions that go along with a new cancer diagnosis.


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Empowering Patients with Small Cell Lung Cancer: A Team Approach to Tough Conversations

Dr. Jacob Sands and Nurse Practitioner Stephanie McDonald of Dana-Farber discuss the communication challenges of treating small cell lung cancer, often diagnosed at advanced stages. Moderated by Dr. Nicole Rochester, the conversation highlights the importance of patient education, reducing stigma, emotional support, and team-based care to empower patients and improve outcomes.

English Guide|Spanish Guide

See More from EPEP SCLC

Related Resources:

Small Cell Lung Cancer Care: Striking a Balance With Urgency and Shared Decision-Making
Small Cell Lung Cancer Care: Striking a Balance With Urgency and Shared Decision-Making
Turning the Tide: Clinical Insights Into a New Era of Small Cell Lung Cancer Treatment
Turning the Tide: Clinical Insights Into a New Era of Small Cell Lung Cancer Treatment

Helping Patients Navigate SCLC Treatment: Tools, Transparency, and Supportive Care

Transcript:

Dr. Nicole Rochester:

There is a lot to unpack given small cell lung cancer is often diagnosed at advanced stages, often requiring rapid decision-making due to its aggressive nature and limiting the time for in-depth discussions. Can you speak to some of the unique obstacles you faced in your own practice around patient-provider communication and shared decision-making?

Dr. Jacob Sands:

Well, I think this is something that’s applicable across all tumor types. Although then I’ll get to the fact that I think to some of the things that I think are more common when in the small cell lung cancer space. First of all, we now live in an era where information is out there, and patients will go looking for information. They’ll come in with an array of things and varying levels of confidence in what they’ve read about online as well. And I do not discourage that.

I think I’m different than some other providers and I say, great, you want to read about things, read about them. If there’s something that’s really compelling to you, bring it in and let’s talk about it. Now, if there are things where you’re like, gosh, that doesn’t sound right, but I’m going to ask about it, then ask about it. Let’s make sure we go over everything that you want to discuss. And I really make an effort to address every question that patients have. Now a lot of times, there are things we can’t know the answer to, But I don’t discourage them asking. And I also will say to them, I am going to try as best as I can to really directly address any question that you have.

And sometimes there’s not a solid kind of short answer. And so we’ll talk about how it’s hard to predict that. But I encourage people to ask questions. I want to make sure that patients know everything that they want to know, and I want to make sure that they’re engaged in their own care and that they feel empowered around everything within their care. Sometimes I think it can be easier for patients to feel lost within the system or kind of feel like they don’t have enough. But if people feel pressured in time or limited in what they can ask, then they just don’t know as much of what’s going on.

So I encourage it. I directly answer everything that I can. Now within small cell lung cancer specifically, with this being such a high smoking prevalence cancer where we know that cigaretteor any kind of smoking essentiallyincreases the risk within this population, within the lung cancer space, especially where there is this direct correlation that is widely known, I think that stigma can get in the way for a lot of people. And I’ll say off the bat that I know of patients who tell people publicly that they have breast cancer instead of lung cancer so that they don’t get the questions about, oh, did you smoke? Of course, we know that there’s a large population of individuals with lung cancer who never smoked.

And it’s often very surprising for people to hear that, that anyone with lungs can get lung cancer, as we often say, but small cell lung cancer is far more common in a population of patients with a heavy smoking history. That’s not 100 percent.I know patients who never smoked, they got small cell but overwhelmingly. And so a lot of the communication in small cell lung cancer, I try to gauge from the start how much is this kind of impacting their mental space around it and how do I do the best that I can to like, remove that guilt. And hey, we’re starting from here. Let’s take this going forward.

Now, for some people, it is a big space. For others, you know, that’s just not in their mindset, or it’s just hard to tell. So I try to gauge that oftentimes there can be kind of family conflict around this or someone still smokes. And I really try to remove guilt of still smoking as well. Because if people with decades of smoking history feel guilt, they’re actually more inclined to keep smoking, because that’s how that then helps them handle those feelings, those like, negative feelings. And so I think that is tied into this discussion in the small cell space that it’s not in all tumor types.

Dr. Nicole Rochester:

Thank you so much for sharing that. Dr. Sands. You said three of my favorite E words, which are educate, engage, and empower. I really appreciate you sharing your approach. I’m going to go to you, Ms. McDonald. What’s your perspective as a nurse practitioner, and what are the primary obstacles that you face regarding shared decision-making and communication in small cell lung cancer care?

Stephanie McDonald:

I often think that small cell lung cancer is diagnosed in advanced stages, and treatment decisions sometimes need to be made pretty quickly. So from the time that a patient has their initial consult with their medical oncologist, they may be starting their first-line therapy within a week, sometimes a couple of days. So I think it limits the opportunity for a really thorough or in-depth conversation with patients and families that you do. They do happen in the initial consult, but I think these patients really need, you know, follow-up visits and frequent check-ins to be able to fully digest the information that they’ve been receiving.

I think there are also kind of obstacles in patients’ emotional response to their diagnosis. I mean, given the aggressive nature of small cell lung cancer, I think many patients and their family members tend to be overwhelmed by the news, and this can really impede their ability to engage in decision-making fully. I think that patients’ ability to proces and understand details in this scenario may be limited, and often the first visits tend to be pretty overwhelming. And I think that patients don’t always remember what was discussed in great detail with their provider.

So I think it’s a great opportunity for advanced practice providers to be able to implement or provide a different setting, separate from their initial consult with their medical oncologist in a slowed down setting, separate from going over all that initial information to really reflect on what was reviewed with the patient, go over what their care plan is and answer any questions that them and their…both the patient and their family have. I think that is super important.

Dr. Nicole Rochester:

I appreciate you sharing that. I can only imagine how emotional this must be for families and like you said, they’re going to need that time to process. So this team-based approach sounds phenomenal. 


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HCP Roundtable: Optimizing Shared Decision-Making and Communication in Small Cell Lung Cancer Care

How can healthcare providers cultivate meaningful communication and support shared decision-making in small cell lung cancer (SCLC) care? Dr. Jacob Sands, Associate Chair of Thoracic Oncology at Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School, joins Nurse Practitioner Stephanie McDonald of Dana-Farber to discuss practical strategies for strengthening patient-provider relationships, fostering collaboration, and advancing patient-centered care to improve outcomes for those living with SCLC. 

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Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients EPEP program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc, and the host for today’s program. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers.

Today, we are discussing optimizing shared decision-making and communication in small cell lung cancer care. We’re going to discuss how healthcare providers can foster shared decision-making and improve physician patient communication in the management of small cell lung cancer, as well as strategies that healthcare providers can implement to enhance patient-centric care and drive better outcomes in SCLC treatment. 

It is my privilege to be joined today by Dr. Jacob Sands of Dana-Farber Institute. Dr. Sands is the Associate Chair of Thoracic Oncology at Dana-Farber Cancer Institute and an Assistant professor of medicine at Harvard Medical School. Dr. Sands conducts clinical trials with novel treatment options with a particular focus on small cell lung cancer and antibody drug conjugates. Thank you so much for joining today’s EPEP program. Dr. Sands.

Dr. Jacob Sands:

Thank you so much for having me happy to be here.

Dr. Nicole Rochester:

It is also my pleasure to be joined by Ms. Stephanie McDonald, a nurse practitioner in the thoracic oncology program at Dana-Farber Cancer Institute in Boston, Massachusetts. Ms. McDonald’s clinical interests include targeted therapy for lung cancer, immune checkpoint inhibitor toxicity management and streamlining chemotherapy, education for patients and families, providing an individualized plan for support, guidance, and education to prepare patients and families for their cancer journey. Thank you so much for joining me today, Ms. McDonald.

Stephanie McDonald:

Thank you so much for having me. It’s a pleasure to be here.

Dr. Nicole Rochester:

So let’s start our discussion today by looking at the obstacles that surround provider-patient communication and shared decision-making in small cell lung cancer care. Let’s start with some facts that might help frame our discussion. And I’m going to start with you, Dr. Sands. There is a lot to unpack given small cell lung cancer is often diagnosed at advanced stages, often requiring rapid decision-making due to its aggressive nature and limiting the time for in-depth discussions. Can you speak to some of the unique obstacles you faced in your own practice around patient-provider communication and shared decision-making?

Dr. Jacob Sands:

Well, I think this is something that’s applicable across all tumor types. Although then I’ll get to the fact that I think to some of the things that I think are more common when in the small cell lung cancer space. First of all, we now live in an era where information is out there, and patients will go looking for information. They’ll come in with an array of things and varying levels of confidence in what they’ve read about online as well. And I do not discourage that. I think I’m different than some other providers and I say, great, you want to read about things, read about them. If there’s something that’s really compelling to you, bring it in and let’s talk about it.

Now, if there are things where you’re like, gosh, that doesn’t sound right, but I’m going to ask about it, then ask about it. Let’s make sure we go over everything that you want to discuss. And I really make an effort to address every question that patients have. Now a lot of times, there are things we can’t know the answer to, But I don’t discourage them asking. And I also will say to them, I am going to try as best as I can to really directly address any question that you have.

And sometimes there’s not a solid kind of short answer. And so we’ll talk about how it’s hard to predict that. But I encourage people to ask questions. I want to make sure that patients know everything that they want to know, and I want to make sure that they’re engaged in their own care and that they feel empowered around everything within their care. Sometimes I think it can be easier for patients to feel lost within the system or kind of feel like they don’t have enough. But if people feel pressured in time or limited in what they can ask, then they just don’t know as much of what’s going on. So I encourage it. I directly answer everything that I can.

Now within small cell lung cancer specifically, with this being such a high smoking prevalence cancer where we know that cigaretteor any kind of smoking essentiallyincreases the risk within this population, within the lung cancer space, especially where there is this direct correlation that is widely known, I think that stigma can get in the way for a lot of people. And I’ll say off the bat that I know of patients who tell people publicly that they have breast cancer instead of lung cancer so that they don’t get the questions about, oh, did you smoke? Of course, we know that there’s a large population of individuals with lung cancer who never smoked.

And it’s often very surprising for people to hear that, that anyone with lungs can get lung cancer, as we often say, but small cell lung cancer is far more common in a population of patients with a heavy smoking history. That’s not 100 percent. I know patients who never smoked, they got small cell but overwhelmingly. And so a lot of the communication in small cell lung cancer, I try to gauge from the start how much is this kind of impacting their mental space around it and how do I do the best that I can to like, remove that guilt.

And hey, we’re starting from here. Let’s take this going forward. Now, for some people, it is a big space. For others, you know, that’s just not in their mindset, or it’s just hard to tell. So I try to gauge that oftentimes there can be kind of family conflict around this or someone still smokes. And I really try to remove guilt of still smoking as well. Because if people with decades of smoking history feel guilt, they’re actually more inclined to keep smoking, because that’s how that then helps them handle those feelings, those like, negative feelings. And so I think that is tied into this discussion in the small cell space that it’s not in all tumor types.

Dr. Nicole Rochester:

Thank you so much for sharing that. Dr. Sands. You said three of my favorite E words, which are educate, engage, and empower. I really appreciate you sharing your approach. I’m going to go to you, Ms. McDonald. What’s your perspective as a nurse practitioner, and what are the primary obstacles that you face regarding shared decision-making and communication in small cell lung cancer care?

Stephanie McDonald:

I often think that small cell lung cancer is diagnosed in advanced stages, and treatment decisions sometimes need to be made pretty quickly. So from the time that a patient has their initial consult with their medical oncologist, they may be starting their first-line therapy within a week, sometimes a couple of days. So I think it limits the opportunity for a really thorough or in-depth conversation with patients and families that you do. They do happen in the initial consult, but I think these patients really need, you know, follow-up visits and frequent check-ins to be able to fully digest the information that they’ve been receiving.

I think there are also kind of obstacles in patients’ emotional response to their diagnosis. I mean, given the aggressive nature of small cell lung cancer, I think many patients and their family members tend to be overwhelmed by the news, and this can really impede their ability to engage in decision-making fully. I think that patients’ ability to process and understand details in this scenario may be limited, and often the first visits tend to be pretty overwhelming. And I think that patients don’t always remember what was discussed in great detail with their provider.

So I think it’s a great opportunity for advanced practice providers to be able to implement or provide a different setting, separate from their initial consult with their medical oncologist in a slowed down setting, separate from going over all that initial information to really reflect on what was reviewed with the patient, go over what their care plan is and answer any questions that them and their…both the patient and their family have. I think that is super important.

Dr. Nicole Rochester:

I appreciate you sharing that. I can only imagine how emotional this must be for families and like you said, they’re going to need that time to process. So this team-based approach sounds phenomenal. Staying where you just left with this degree of urgency, how do you balance the urgency of starting treatment with this shared decision-making? And are there any tools or any tactics that you can share with the audience?

Stephanie McDonald:

So first of all, I think being honest and having transparency with our patients, I always really try to aim to provide really clear, open communication about their diagnosis and or summarizing their treatment options that were reviewed with them. I think, you know, I’m sensitive, but I want to be really honest in explaining kind of the nature of their illness and really that urgency to start treatment. But like I said, I also want to give space to be able to ask questions and express concerns.

I’m also open about the, you know, the advances in treatment associated with small cell lung cancer with, you know, improved response rates and a variety of clinical trial options. I know Dr. Sands could probably speak to that even more. But I really do think it’s important that we have these discussions with their patients, because it really is a different field now than it was even 5, 10 years ago when patients are diagnosed with small cell lung cancer. And so I think it’s really important to have a conversation with these patients about balancing treatment with their goals of care and really understanding what their goals are, what they find as kind of important to them, and what’s important to their family.

But to be able to just speak with patients, it’s not always like a tool but just having a listening ear and letting patients ask questions and being with them to be able to answer all their questions that they have. I feel like that builds a very trusting relationship from the get-go, which I think is crucial, especially with this diagnosis, when things can change pretty rapidly.

Dr. Nicole Rochester:

Thank you so much. Yes, Dr. Sands.

Dr. Jacob Sands:

Oh, I mean, to that point, the two visits can be very, very helpful, where when I’m talking with patients, I will often call out. I mean, frequently I can tell, like, hey, someone. They lost the whole information we’re discussing. Like, they went into their own head. It’s natural. The situation often just feels surreal with people. They were fine, and now all of a sudden, they’re in an oncologist’s office talking about having small cell lung cancer. It’s disorienting.

And I’ll often acknowledge that for people, I’ll say to them, hey, I usually find that people just feel the room spinning around them in the middle of a discussion like this. And if you feel that way, it’s totally natural. And I’ll often say that when I can see that someone has lost me, or it doesn’t seem like they’re tracking everything I’m saying. And usually people say, yeah, I don’t know what you said, but I think in doing that one, my goal is to essentially relieve any pressure. Like, hey, if you’re not catching everything I’m saying, it’s okay. We’re going to come back to it, because you’re at the center of all of this.

And I’ll call that out. Sometimes when discussing treatment options as well, I’ll call out common misconceptions. Oh, people usually come in here thinking that if they get chemotherapy, that means they’re going to be laid up in bed vomiting without hair. And almost always people go, doesn’t it? And thankfully, nausea is not nearly the problem. It used to be the first-line regimen for small cell lung cancer. People do lose their hair. And I try to really be very up-front about the things I expect, but also being very up-front about the things I don’t expect. Yes, they can happen, but I don’t expect that.

People often come in thinking the worst of everything, that a lung cancer diagnosis means that at any moment they can just drop dead, and any treatment is just going to cause a whole bunch of toxicity. And thankfully, that’s not actually the equation. And if that were the equation, then being an oncologist would essentially be torturing people, and that’s a horrible job, and we wouldn’t do that. But the goal in all of this from the beginning, most people want to be very clear their goal is prolonged quality of life. And so I will frame the discussion around that goal and make sure that we’re on the same page about the reason that we’re doing any of this, the reason we’re discussing it, and also making it very clear that they have a choice in all of this.

But I think some of that is also framing it in a way that feels right where it can be hard sometimes to make a decision. And I’ll say it’s normal to not be sure what to do sometimes, because there is not an option here that’s appealing. There is no option that’s like, oh, that sounds great. We’re choosing between two things we don’t want. So let’s kind of anchor around what is going to drive those decisions. Usually for the first treatment, that’s not such a dilemma.

I mean, this is an aggressive cancer that the first treatment often works great, and it has the real potential of working for a very long time. This is wonderful. Our first-line treatment really is very effective. And it’s exciting that we do also now have other often effective treatments that we can discuss. And so I know we’ll kind of get to that a little further down the line. But essentially what I’m highlighting is anchoring around what the patient is emotionally experiencing, because we all know it’s tough. Like, we work in an intellectual space, but we all live our lives in an emotional space. And so that’s where there can really be a big disconnect.

If we’re just talking, like, computer. But people are living their lives emotionally. You flip the script, and all of a sudden the healthcare practitioner is the one that’s disoriented. If it’s like our own lives, that someone else is interacting with us. So we have to be attentive to that and kind of, what are the beliefs coming in? Okay, what is the reality of those? And how much of a factor and how much do we really expect in all of this as a way of balancing this out?

Now, that being said, even with all that effort, the room spins around people. And so for them to then have a separate visit with Stephanie where she’s going to go through things in a different way, and then that ends up being another way. Like, okay, they got all that. They’ve maybe processed some of that. It’s impossible to process everything but some of that. And now they’re meeting fresh again and going to go through things in a different way then I think people retain quite a bit more. It’s also really important because Ms. McDonald and them are going to interact a lot as well. We’re a care team and so I often say to them, hey, I really want you to meet her, because she’s an important part of the team too. And that way she knows you. You know her because we work together.

Dr. Nicole Rochester:

I really appreciate how both of you really focused on humanizing the patient and normalizing the overwhelm and the confusion and all of the emotions that go along with a new cancer diagnosis. Well, we’re going to shift to practical tools and resources to empower patients and enhance long term outcomes in small cell lung cancer. As you both have discussed, there are some challenges with survival outcomes, particularly for extensive stage small cell lung cancer. Dr. Sands, I’m going to start with you. What are the most significant advances in the current treatment landscape for small cell lung cancer? Five years. And how are they impacting patient outcomes?

Dr. Jacob Sands:

Well, thankfully, you know, there’s a lot to talk about in this space, especially if we’re including current clinical trials, because there are a lot of drugs in development that have shown really exciting results. But aside from that, I’m going to stretch a little more than five years, because it’s so meaningful. Is the immunotherapy drugs that are now part of our first-line treatment. These are drugs that, unfortunately, probably work well for maybe 20 percent of individuals. But amongst those in whom these work, they can work amazingly well. We have patients that are more than five years out from their initial diagnosis with widespread small cell lung cancer that have never gotten another treatment. They got chemotherapy and immunotherapy and that’s it.

They’ve not yet had another treatment. Their disease is controlled. Now this is an, unfortunately, smaller subset of patients that this is working like this for. But I mean, I’m stretching to say that we might actually be curing some people of their incurable disease with the incorporation of these immunotherapy drugs. So first-line setting chemo plus immunotherapy has been the standard of care. Now more recently we’ve seen the ADRIATIC trial. This was a trial in limited stage after chemo-radiation that now uses durvalumab (Imfinzi), one of those immunotherapy drugs after chemo-immuno it actually had a pretty impressive impact on survival on the time to the disease occurring as well as overall survival of patients made a really quite a big difference.

So that’s now the standard of care after chemo radiation for limited stage to then get immunotherapy for two years. But five years ago, also saw lurbinectedin (Zepzelca). This is another chemo agent, got a publication from that study that led to approval. This was 105 patient cohort within a basket trial. So single arm. That led to FDA approval of a new drug for small cell lung cancer. Lurbinectedin is a once every three week drug. It’s pretty well-tolerated. I think as far as chemotherapy drugs work, it does not have a lot of the toxicities that people worry about.

There are some things to monitor, but generally it is a manageable side effect profile as a new drug. More recently, we have tarlatamab (Imdelltra). This has made big headlines and it was a trial that enrolled in the third line and beyond. But the data was so good it got approved in the second line. So, you know, I often quote that about half of patients that get the drug benefit from the drug. It’s 40 percent that have a response–response meaning that it shrank by more than 30 percent. And amongst those individuals, 43 percent of patients were still on the treatment at the time of the last data kit.

And that’s beyond a year of ongoing treatment and some quite a bit more. So we don’t yet know the ceiling as far as how long this drug can work for. When it’s working. I mentioned about half of patients benefiting, but the response rate being 40 percent. That’s because even with stable disease, meaning that it could have shrank by less than 30 percent or grown by less than 20 percent. But in that range we see disease control and some portion of that out beyond six months, which I think is meaningful in the third-line and beyond setting.

Now, of course, what patients want and what we want for them is for something to work for years, not just for months now, you know. But if something works for six months even, and then you have something else that works and then something else that works and something else, then you can string that out to a much longer timeframe. But it’s exciting to see potentially years of benefit from another immunotherapy drug. Now, with that being said, there’s a lot going on in clinical trials that’s quite exciting too. And I’d say one of the benefits at Dana-Farber as well as some of the other bigger academic centers is that we have multiple trials for small cell lung cancer.

One right now is CAR T. So this is essentially collecting the immune cells from patients. We send those off and process them so that they are trained essentially to recognize small cell lung cancer cells. And then we infuse those back into patients. So patients get their own cells back, but now are essentially trained to find small cell lung cancer cells and kill them. So the treatment is essentially training someone’s own immune system to do the work. And it’s exciting. We’ve enrolled patients on that now and to see that technology now coming into the space on top of multiple drugs, which we call targeted chemotherapy.

These are essentially chemo that is bound to an antibody, so that goes and finds a certain receptor on the surface of cells where it then pulls that compound into the cell. And so the chemotherapy is delivered into the cancer cells instead of just going everywhere. And that’s another whole class of technology that’s happening in clinical trials. Now, that’s a bit of scratching the surface as far as clinical trials. There are multiple other things that I could go into, but trials options, I think, are a really important consideration in the small cell space.

I’d say, at this point, especially if you combine what I just said about the past five years now with what’s going on in available clinical trials, there is more happening in the small cell space of novel, effective treatment options than the history of everything up to this point. And so it’s really exciting to see that as an option for patients and to see people do well for such extended periods of time.

Dr. Nicole Rochester:

Wow, that is extremely exciting. When you talked about curing an incurable disease, that’s when you really got my attention. So, Ms. McDonald, I want to go to you, because Dr. Sands just described some very exciting treatments with very promising results. And I can only imagine that this information, while great, is also overwhelming to patients when they’re presented with all of these options? So are there specific decision aids or tools that you use when you’re talking with patients and families to help them understand the risks and the benefits of the different treatment options as they’re making decisions?

Stephanie McDonald:

So, yes, there are a lot of different treatment options. And with that, you know, we need to be aware of the potential toxicity associated with the treatment that patients are getting, which don’t come without risks. Right. Most patients do pretty well on immunotherapy, but there definitely are toxicities, you know, as far as, like, colitis or pneumonitis and rashes. There are things that are going to be education points that need to be made with patients to know what to look out for depending on what treatment they’re getting.

So I think it is incredibly important not only to provide education sheets to patients to reinforce these discussions, but like I spoke to earlier, I have a separate visit with the patients to be able to spend at least an hour the first time they are given a treatment plan, to be able to feed through all of the potential side effects. And I don’t want to overwhelm patients because you could be a bad, you know, commercial going over every single side effect. But we do need to be realistic with patients about what to be on the lookout for, what might come up, when to call if something does occur.

So I think the most important thing is breaking it down for patients to really easy-to-understand information and you can really gauge. I prefer to see patients in-person or at least have a virtual encounter with them over like a telephone encounter, because you can really gauge how a person might be responding to what you’re teaching them.If someone’s a deer in headlights and they’re overwhelmed by the information that you’re sharing, you need to be able to stop, take a few steps back, and break it down to easy-to-understand information for not only them but for their family members.

I think it’s really important that we also care for the family member as well. IWhen you walk into the room, you’re not just taking care of the patient, you’re taking care of every single person that is in their life. Like they have supportive families who are coming to these appointments who are equally as overwhelmed, or maybe there’s a shift in their role. And now that maybe somebody was a primary caretaker, very active and matriarch, or a patriarch in the household, and now there’s a shift in a whole role and dynamic for how these patients are going forward along their journey.

So we need to be able to spend time to unpack all of that to really understand how we can best support these patients. So besides just education tools, which I think just help reinforce the information that we go over with them as far as breaking down what are the side effects of treatment, how often will you be coming into clinic? People want to know simple things like what do you dress comfortably to come into clinic? What does the infusion room look like? It’s things that maybe as providers we don’t take a moment, because it’s second nature up to us to know kind of the…what the logistics are to somebody’s day in an infusion center.

But this is brand new information for most patients, and that can be incredibly crippling and overwhelming. So on top of providing concrete information as far as what side effects to expect, I also want to be doing a real time evaluation about what their supports are, what their needs are, are they losing weight, are they coming in and need help right off the bat with a dietitian? Are we assessing for their nutritional needs? Are we assessing their psychological needs? Because we know that anxiety, depression, fear of the unknown are very common emotions as a part of a cancer diagnosis and especially one as significant as small cell lung cancer.

So we really want to be talking to patients about the resources that we can encourage them to tap into or think about and talk with their family if they think they would benefit from these. I think one referral that I think often goes later in offering to patients is referrals to palliative care. And I think I just want to make a quick point, and Dr. Sands can talk to it as well, is the importance of implementing palliative care along a patient’s journey early.

And there is data to support that when you implement palliative care services early, patients are living actually longer. Jennifer Temple put out a study probably several years ago, Jacob, you could probably quote me on the date of that. But it’s shown that patients are living longer with improved quality when resources such as palliative care are implemented earlier. And I think it’s very difficult for patients when they hear the word palliative care. They already have this notion in their head that they don’t understand actually what it is. I think a lot of patients think that it’s hospice. They think I’m dying, you, you’re sending me to hospice. There are no more treatment options.

But I implement palliative care as an understanding of supportive oncology. How can we support you to improve your quality of life from the get-go of when you come in and start your journey? And, I make these referrals early. I do it in a non-threatening way and just lay it out as an additional support to help improve their quality of life and really balance the treatment that we’re giving them with again improving their quality of life over the long term. So I do think that referrals to palliative care should be considered and implemented early in a patient’s course in treatment.

Dr. Nicole Rochester:

Dr. Sands?

Dr. Jacob Sands:

Yeah, I agree. Supportive oncology is such an important component, and they often can play a role in helping with controlling symptoms like pain. I mean, of course, I want to know about pain. Of course, we can manage pain as well and I’m happy to add that into office visits. I also find though that for patients sometimes having visits where they’re talking more about those symptoms and others where they’re talking more about the cancer, actually for some patients works better for them. I am happy to help manage pain and do other kinds of medications around symptom management.

So, you know, that can also happen within our clinic as well. But like I said, I think for some patients, it works better for them having these two different teams that they’re interacting with and kind of sharing their story a bit more. It also allows them to really share that story in the way that they want to talk about it. And sometimes those are two different ways that they want to talk about it. You know, also related to the whole shared decision-making and discussion of toxicity profile versus benefits and stuff, I think I’ve often heard patients come in, you know, I see a lot of second opinions and such.

And so they’ll come in and say, well, this doctor told me all of these horrible things that are going to happen with the treatment. And so why would I even want to do that? And, you know, this is…I never actually know what was said to somebody, right? Because people are telling me what they heard, and I’ve heard patients come back or, you know, they get admitted to the hospital and what they tell the inpatient team about my discussion with them. I’m like, oh, I would never say something like what you just said.

So again, patients are experiencing all of this in an emotional way, and I think we have to be attentive to that. So the way that I’ll often talk about this is not just a matter of it’s not. I want to highlight what it’s not first. It is not saying, oh, all of these terrible things could happen. Because that way, if it does, I told you that was a possibility. Okay, that’s not necessarily the transparency we’re going for. The transparency we’re going for is kind of the overall context. Like, hey, this is the overall risk. Yes, here are some things, but here’s the likelihood of those things.

And so what I’ll often do for patients is I’ll often use the analogy. I often talk in analogies. I think that makes it more accessible. For this one, I’ll commonly say, if I were to ask you what could happen on my drive home, then you’re probably going to say, oh, you might hit some traffic, but you’ll be fine. And if I say, well, what are all the things that could happen? Now, that becomes this long, scary list.

Now I often say off the bat, like, a drive home is nothing like having cancer. I’m not saying that these are comparable, but just talking about it in a way in this analogy, so we can give more context so when I talk about, oh, the risk of immunotherapy, okay, you can end up with type 1 diabetes. You can have inflammation and problems with your heart. Okay, these sound like really severe, scary things. The likelihood of this kind of a thing happening is like on the scale of a bad car accident. Yes, it can happen, but this shouldn’t drive your decision-making. That’s very different than just listing out all the different things that can happen.

And I really encourage other providers to talk with their patients in some kind of a way that provides that. We’ll say, okay, here’s the long list of all the things that can happen. More realistically, what I expect is this.

Dr. Nicole Rochester:

Yeah. Thank you for highlighting that. Thank you for highlighting that balanced approach. I love the analogy with the ride home. I think that’s great advice for providers. Both of you have spoken as we wrap up. You’ve talked about collaborative decision-making. You have clearly highlighted how you all collaborate at Dana-Farber Cancer Institute and the importance of having these multiple visits. What about other members of the care team? How do you utilize social workers or patient navigators or other members in fostering collaborative decision-making in small cell lung cancer care?

Dr. Jacob Sands:

Well, they’re instrumental. I mean, this really is a shared team approach. Ms. McDonald and I are at the core of that. But then around us, the social worker, really important. You know, rides can often be a real barrier to getting care. And so having a social worker involved in that, that’s one aspect that’s kind of a more obvious one. Even the emotional support as well, and logistics, drug availability and programs for assisted pay, all of these types of things.

We have whole teams that help with that. Nurse navigator is another core member, though. We meet weekly with an administrative support and administrative assistant and with a nurse navigator to go over any patients that are complex and say, okay, this is what’s going on. How can we assist them better? What’s coming up? The administrative assistant knowing, oh, this person’s going to get a scan next week, but then is coming in the next day, we need those results available. Sometimes the outside hospital hasn’t even read the scan yet. They don’t have a radiology report. But we’ll review it with our radiologist as well. Because we have that scan available now. We’ll often do scans the same day.

Patients will come in, they’ll get a scan and then they come right to clinic. And we will review the scan with our radiologist. But of course, radiology, thoracic surgery, radiation, oncology, you know, the whole multidisciplinary team is a part of that. But there are also all of these other supportive members of that team and these weekly meetings, Ms. McDonald really was at the heart of that process and saying, hey, you’ve had these complicated patients. Let’s pull together a team meeting.

That has been a gift. That’s been wonderful, because then weekly we go through this and then everything is organized, and it really reduces the number of other emails or things that could potentially slip through the cracks in the process.Now, on top of that, if you go to tarlatamab, which is an inpatient dosing, which we just don’t have that in small cell lung cancer up to this point as something that requires inpatient monitoring. And as McDonald has really been part of that core of then connecting across to the inpatient team as well, and to all the nurses to then make sure we’re all on the same page.

A colleague of ours, Dr. Rotow, who’s our clinical director, of course, was quite instrumental in the implementation of these things as well. Just to say it goes out beyond our team, specifically in the small cell space. But it’s really important to be connected in all of these ways that really helps provide patients with all the resources that are available to them as well.

Dr. Nicole Rochester:

Truly a team-based approach for sure. Well, it’s time to wrap up our roundtable. I have really enjoyed this conversation. I have learned a lot. And as we close, I wanted to get closing thoughts from each of you. So I’ll start with you, Ms. McDonald. What is the most important takeaway message that you want to leave other healthcare professionals who may be listening, watching regarding how we can optimize shared decision-making and communication in small cell lung cancer care?

Stephanie McDonald:

I really just think the key to optimizing shared-decision making is empathy. I think we need to take the time to really truly understand what our patients’ needs are, what their values are, and their preferences so we can be able to help align the treatment plans and the care that we give with what their goals are. And we really want to make sure that patients and their families are feeling supported and they are playing an active role in this decision-making process because at the core of it, they are what I call the captain of the ship. 

Dr. Nicole Rochester:

Thank you so much, Ms. McDonald. And what about you, Dr. Sands? What’s your final takeaway message for the audience?

Dr. Jacob Sands:

Well, I go that and thinking about when you’re talking about side effect profiles and counseling patients is what the experience is for them and coming at it as if you’re talking to your own parents. But, you know, I can go more in depth in that, but maybe more so focus on everyone who’s listening. I mean, it is hard being a healthcare provider. There is more information coming out faster and faster, and this is wonderful for patients.

There’s also a whole new era of patients really being at the center of their care. And I hear older docs talk about how, oh, this is so much slower. You’re not taking care of as many patients in the hospital as I did. Like, okay, but back in the day, it was a whole different experience. And so I think current physicians and nurse practitioners and healthcare providers are under an immense amount of pressure that is increasing day by day, year by year, in a way that isn’t fully appreciated within the system. And so just to acknowledge for everyone who’s listening, who feels like you’ve been in a crunch, I know you have. And I think part of this is then how to navigate that.

How do you go into someone’s room and emotionally actually engage and be there with them in a tough space sometimes, you know, being challenged for stuff that you shouldn’t be challenged for? It’s just people are going through an emotional experience, and they sometimes even lash out. And then how do you engage with that? And then right after that, walk into someone else’s room and start fresh and don’t carry that? And a lot of this is personal practice too. It’s like, how do we kind of shed everything at the end of an experience and not carry that forward without building a wall that keeps us from being able to engage in that space? And I will tell you, I don’t have a great answer. There is not a magical answer to that.

And so if you are feeling challenges of that, I think that is totally valid, too, as we all work to. I think this is… It is personally a lot of work to work in this space, and we always talk about the patients and what to do and what you should do and all this stuff. But how do we care for ourselves in that process and learn to let go of these things and start afresh with each person? I guess the best I can offer is validation that I know that that’s a challenging thing. And I see that, and I appreciate that, too.

Dr. Nicole Rochester:

Well, thank you both so much. There’s so much that was shared today, and I think the overarching message regarding shared decision-making and patient care in this space that I heard from both of you is empathy and meeting patients and families where they are. And I love the aspect of humanization of both the patient and of the doctor and the provider. So I really want to thank you both for being here today and thank you for tuning into this Empowering Providers to Empower Patients Patient Empowerment Network program. I’m your host, Dr. Nicole Rochester. Thank you so much for watching.


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HCP Roundtable: Overcoming Practice Barriers to Enhance Small Cell Lung Cancer Care

How can healthcare providers overcome practice barriers to enhance care for patients facing small cell lung cancer (SCLC)? Dr. Nagashree Seetharamu from Northwell Health and Nurse Practitioner Beth Sandy from Penn Medicine explore actionable clinical approaches and strategies to address the unique challenges in SCLC care.

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See More from EPEP SCLC

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Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients Program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers. How can healthcare providers overcome practice barriers to enhance care for patients facing small cell lung cancer? What strategies can be implemented to ensure that patients with extensive stage small cell lung cancer have access to participate in clinical trials and to receive cutting-edge therapies?

It is my privilege to be joined by Dr. Nagashree Seetharamu of Northwell Health. Dr. Seetharamu is an Associate Professor of Medicine at the Donald and Barbara Zucker School of Medicine at Hofstra Northwell Health, and has established a reputation at the national level through her active involvement and leadership within influential oncology organizations that steer the direction of clinical cancer care and research across the United States and globally. Thank you so much for joining this EPEP program, Dr. Seetharamu.

Dr. Nagashree Seetharamu:

Thank you.

Dr. Nicole Rochester:

It is also my honor to be joined by Ms. Beth Sandy, a thoracic oncology nurse practitioner at the University of Pennsylvania Abramson Cancer Center. In addition to regularly presenting at several national and international nursing and thoracic oncology meetings, Ms. Sandy has published in a number of peer-reviewed medical and nursing journals. Thank you so much for joining this EPEP program, Ms. Sandy.

Beth Sandy:

Thank you for having me.

Dr. Nicole Rochester:

I’d like to start our discussion by talking about current practice barriers in small cell lung cancer care. So I’m going to start with you, Dr. Seetharamu. What are the barriers to implementing patient-centered care in the management of small cell lung cancer, and what are we learning from the existing evidence?

Dr. Nagashree Seetharamu:

Yeah, thank you. It’s a great question. I would start by saying that I think the first thing is really limited treatment advances compared to other types of cancers and clinical trial access. So compared to other types of cancers, including non-small cell lung cancer, we have very, you know, fewer options. Patients, despite all the advances, the outcomes are still suboptimal. Many of our patients present with very advanced disease and have multiple other comorbid conditions. So it makes it difficult to deliver optimal care or to enroll patients in clinical trials. In addition, we do know that palliative care improves outcomes in non-small cell lung cancer. We do not have this data as much in small cell, and there is a stigma around it. People do not avail palliative care options, which are perhaps most appropriate for patients with small cell lung cancer.

Lastly, I think there’s also streamlining the processes. We do have the low dose CT scan, lung cancer screening, fewer patients avail it. With increased availability, increased acceptance and increased uptake, probably we can see more small cell lung cancer cases in early stages that will ensure cure.

Also, there are many of our patients with small cell lung cancer have lapses in supportive, you know, social support, and that’s something that we are working with. There’s also quite a bit of disparity when we talk about small cell lung cancer, and that’s been extensively published. So delays from screening to diagnosis to treatment.

Dr. Nicole Rochester:

Thank you so much, Dr. Seetharamu. So given those barriers that you just outlined for us, how can healthcare providers overcome those practice barriers to actually enhance care for patients facing small cell lung cancer?

Dr. Nagashree Seetharamu:

So I think there…I have a few ideas, a few suggestions. I think first and foremost, is to make sure that the screening program is well-adapted. We still see less than 10 percent of patients being screened, so that is something important. Hand in hand with that is tobacco cessation. So decreasing the incidence, early detection is number one and number two for sure. In addition to that, once patients are diagnosed and are presenting, you know, improving the, or having streamlined processes for diagnosis from the patients enter care to the time they start treatment, reducing the time to treatment is extremely important.

We are really kind of sitting on a time machine, you’re really trying to get things done in a very quick order. So streamlining the processes, whether the patient is in the hospital or presents as an outpatient. Lastly, making sure that clinical trials, if they’re available, making sure that patients are screened for it, making clinical trials available to patients, making criteria broader so that patients can be enrolled. And then ensuring that everyone within a particular health system or network is aware of recent advances, and patients get optimal care wherever they are located throughout the country.

Dr. Nicole Rochester:

Thank you very much. I’m going to turn to you, Ms. Sandy. As a nurse practitioner in this space, what is your perspective regarding the primary barriers to accessing effective patient-centered care for small cell lung cancer? And then similarly, what are some strategies that you believe can be implemented to overcome these barriers?

Beth Sandy:

Thanks, Dr. Rochester. I think Dr. Seetharamu covered a lot of the barriers really, it’s getting patients to treatment quickly. As we know, this disease is very aggressive. So, this is not a disease where a patient might say, “Well, I have a two week trip to Europe planned. I’d like to go there and then start treatment.” Actually, in non-small cell lung cancer maybe, but in small cell lung cancer, it’s so important to get them started very quickly on treatment because of the aggressive nature of the disease. And it is a very chemo-sensitive disease, so they may feel better very quickly.

One thing that we do in our practice is if we see that a patient is coming in who’s newly diagnosed with small cell lung cancer, whether it be extensive or limited stage, many times our nurse navigator is looking at this in advance and we’re pre-starting the chemotherapy before they even get there. Because many of these regimens are a three-day regimen, so we want to make sure that our next three days are available for infusion that we get this patient started right away.  So sort of looking ahead can be really helpful, especially if the patient’s coming on a Thursday or Friday, we’re not open generally on the weekends to give chemo, so we’ll make sure that we get them scheduled that following week. Again, getting these patients to treatment very quickly can help them feel better quickly.

Dr. Nicole Rochester:

Wonderful, thank you both. So I’m going to go back to you, Dr. Seetharamu. What are the gaps in current research regarding patient-centered care in small cell lung cancer, and how can these gaps be addressed?

Dr. Nagashree Seetharamu:

Yeah, I think I alluded to this a little earlier, but the…mean, this is kind of a pitch for funding agencies. I think the funding, first of all, it starts there. I think the funding that is available for other types of cancers perhaps is not so much for small cell. Despite decades of extensive research, we are still kind of stuck in the same regimen that we used to use decades ago, with a few modifications. So, first of all, novel treatment ideas, novel treatment regimens definitely can be hugely beneficial for these patients.

Secondly, it is also making sure that patients are actually able to get enrolled in the studies. A lot of these studies are overly exclusionary for reasons that it shouldn’t be. And, for example, if a patient receives a treatment as inpatient, like Ms. Sandy said, a lot of our patients get treated in the hospital, and they get excluded from the first-line regimens many times. So that’s something that can be accommodated. Clinical trials should be tailored around real world experience, not just based on what might be beneficial in preclinical models or some early experience. That’s the second thing.

Thirdly, I think small cell lung cancer, while we use the same term, I think it’s a heterogeneous disease. Using biomarkers to kind of stratify patients or subgroup patients, and then tailor regimens specific to, for example, when a transformed small cell lung cancer, when non-small cell lung cancer transforms to small cell, it’s still small cell lung cancer. From a histological perspective, it looks very similar, biologically it’s a very different disease. So I think it is important to kind of stratify or differentiate those subgroups and then create clinical trials that are more specific, you know, patient-centric like you mentioned. And I think lastly, mostly it’s important to make sure that the disparities are addressed. The socioeconomic disparities, racial barriers are addressed while we are talking about small cell lung cancer research. I think it should be an integral part of every clinical trial.

Dr. Nicole Rochester:

Absolutely. Thank you for highlighting that, Dr. Seetharamu. So, Sandy, we’ve been talking about the barriers that patients face with regard to treatment. Can you speak to some of the obstacles or barriers that are faced by healthcare providers with regard to treatment for small cell lung cancer?

Beth Sandy:

Yeah. Well, there are a couple ways to look at it. First, if you just look at a clinical trial perspective, sometimes it’s hard for us to enroll patients with small cell lung cancer for several reasons. You know, when we enroll in a clinical trial, a lot of times we need to wait for a slot to open. Well, we don’t have time to wait for a slot when they have small cell lung cancer. Again, it’s a very aggressive disease that’s rapidly moving. So we run into this barrier all the time here because they’ll say, “Well, I have a slot that opened up in three or four weeks or four weeks.” I don’t want to wait that long to treat my patient. So I think when we design these trials, we have to think about those kinds of things.

Another point of putting patients on clinical trials is a lot of trial ineligibility criteria is for patients with brain metastases, but in small cell lung cancer, we know that like up to 75 percent of them are going to develop brain mets over the lifetime of their disease. So it’s not really a real world trial if we exclude patients with brain metastases. So we need to design our trials in a good way.

There are a lot of other barriers that we end up facing. Some of the treatments for small cell lung cancer, especially a very new treatment that’s a BiTE therapy, a bispecific T-cell engager, is very hard to administer. It requires an overnight admission for the first two treatments, it has taken us actually a pretty long time to operationalize how we were trying to give this, so it’s not easy. And we finally have figured out how to give this, but this is a drug that holds a lot of promise for our patients, but it is hard for us to administer, and it’s hard for patients as well, because then they have to say, “Oh, I have to block off an entire day for this.”

So, some of these treatments are not easy. Most treatments for small cell lung cancer are not fancy targeted therapies that can minimize toxicity. These are chemotherapies that can cause nausea, fatigue, lowering of blood counts, the majority of the treatments. So if our patients aren’t healthy, robust, and able to deliver, or we can deliver the treatment, but they’re not able to handle the treatment, that’s also worrisome and can cause a barrier for us. So they’re not easy treatments. We need to really do our best to help support the patient and help figure out from an operationalization, there I made up a word, [laughter] but standpoint on how we can administer these safely, but in a quick, efficient way to these patients.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. So both of you have really done a great job elaborating the many barriers. The barriers that patients face, the barriers that healthcare providers face. Are there any tactical strategies or things that either of you or your institutions have done to actually address some of these barriers, some of the challenges that you all have mentioned?

Beth Sandy:

I mean, for us, our nurse navigator is huge. She is a dedicated lung cancer nurse navigator. She’s looking at these patients in advance, when they’re new patients and really trying to say, okay, if they have small cell, we need to get them in quickly. You know, if our new patient wait is two weeks, she’ll say, “Well, this one needs to be prioritized. We need to see them within a week.” She’ll say, “We need to make sure that we have the ability to treat them within a week. We want to really get on top of that quickly.” So that’s been, I think for us, one of the biggest helps with small cell lung cancer.

Dr. Nicole Rochester:

Wonderful. You have anything to add, Dr. Seetharamu?

Dr. Nagashree Seetharamu:

Yeah, I mean, it’s… similarly I think our navigator program is extremely helpful. In addition to that, I think, I know with the bispecific that was mentioned, you know, the tarlatamab-dlle (Imdelltra), we have a process in place, where it’s very streamlined, patients get admitted. The whole protocol is in place for admission and then subsequent treatment as outpatient.  With larger centers where there are multiple, larger institutions with multiple centers that might be a little smaller and not able to monitor patients while they’re receiving this treatment, we have adapted this approach where the first two treatments are given at the main hub, and that’s also been adapted by a few other institutions in the neighborhood where they refer the patients to us just for those first two infusions and when patients are settled and ready to continue the treatment, they’re able to continue it in a more community-based setting.

So that’s something I think that can be done in those regions where patients are referred to places where you can call hubs where these treatments can be initiated and then continued in their regional places so not to inconvenience the patients.

I think for this particular cohort of patients, social work involvement is extremely helpful, in addition to addressing the support systems, transportation assistance, financial support systems, and then involving palliative care early on has been something that has been extremely helpful. This is a multidisciplinary disease, despite that the majority of the patients are on systemic treatment, it is a multidisciplinary disease. We have multiple, we touch minor patients, touch multiple departments. And again, the role of nurse navigator is extremely helpful, because they can help make sure the patients are not inundated by these appointments.

Dr. Nicole Rochester:

Thank you both. Thank you very much for sharing that. So we’re going to shift a little bit and talk about strategies and innovations that may offer enhanced care for patients and families facing small cell lung cancer. We know that survival outcomes in small cell lung cancer remain challenging as both of you have pointed out, particularly for those with extensive stage small cell lung cancer despite incremental improvements in treatment strategies. For your colleagues that are watching this program, what are some strategies and innovations that may offer improved survival outcomes? Now I’ll start with you, Dr. Seetharamu.

Dr. Nagashree Seetharamu:

I think having your group in place, identifying the providers that are dedicated to this disease. Making sure there are processes in place from early diagnosis through the treatments and seeing multiple providers is in place. Making sure that every treatment, there’s a pathway attached to it, there’s a protocol attached to it so that we are not scrambling last minute. Like Ms. Sandy said, it’s the same issue. It’s a three-day regimen. The first line, we want to make sure that, you know, the treatment starts. We are open on Saturdays too.

So, you know, it has to be Monday through Thursdays. You know, simple things as that may become very challenging. In patients with the brain metastases, making sure that they see the providers also in a very timely fashion. Sometimes the urgency may not be realized by other providers, because they’re not used to just seeing small cell lung cancer patients. Just making sure that that is communicated with teams. Yeah. I mean, just streamlining the processes as much as possible. Empowering the patients to understand their disease and making sure that they ask the right questions and be, you know, willful, you know, like complete participants, partners in the care, are some of the strategies that I can think of.

Dr. Nicole Rochester:

Thank you, Dr. Seetharamu. And certainly with this being in Empowering Providers to Empower Patients, we love that you included that, having the patients as partners. Do you have anything you’d like to add, Dr. Sandy…do you have anything you’d like to add, Ms. Sandy?

Beth Sandy:

You know, I think looking ahead for clinical trials, new drugs, it’s been really hard in small cell. We don’t have nearly the advances that we’ve seen in non-small cell lung cancer as far as any targeted therapies. Dr. Seetharamu talked about this earlier is that maybe we could figure out some of these different subgroups by looking at their pathology and seeing if some of them may respond differently to certain agents. I’m hopeful about some new drugs that are coming down in the pipeline.

There is an anti-TIGIT agent combined with immunotherapy that looks hopeful, that could produce some good outcomes. Combining immunotherapy drugs, combining them with chemotherapy, you know, potentially down the line we’ll see some of these drugs that will get approvals in small cell lung cancer and improve some of our progression-free survivals and hopefully overall survivals. So just continuing to enroll patients on studies. Have studies designed to fit this patient population, which we’ve significantly lacked in the past 30 years in small cell lung cancer.

Dr. Nicole Rochester:

Thank you. Thank you, Ms. Sandy. And you brought up the clinical trials, and so on that same topic, Dr. Seetharamu, do you have anything to add with regard to really improving access to clinical trials for patients with small cell lung cancer.

Dr. Nagashree Seetharamu:

Yeah. I think bringing clinical trials to the communities is perhaps the biggest way to do it. You know, patients with small cell, many can travel, but there are many that cannot.  So it’s important to understand that making it easier for patients to know what trials are available. Right now the options that we have, the websites that we have, it’s hard even for a provider to kind of navigate through it. Making it easier. Advocacy groups, you know, ensuring that patients are tied to advocacy groups, because they get a lot of information from these groups. It’s important. And I encourage patients to join these groups, because it empowers them and kind of unifies their voice.

There are clinical trials that are looking at doing labs at home or in their local centers, so they don’t have to travel all the way to the main center to get the labs done. That can be a huge help for patients. And again, making sure that clinical trials, when they’re designed, they are adaptable to real world, you know. And Ms. Sandy brought this up before, we don’t want trials that only address the cream of the…you know, like just a small proportion of patients. It should be really viable for the larger community. Yeah. I mean, these are some…I am sure there are many other things that can be done, but I think this would be a good start.

Dr. Nicole Rochester:

As we move to our final topic, I’m going to go to you, Ms. Sandy. We’re going to talk about outdated clinical approaches. How can interdisciplinary care teams and integrated care models be optimized to better address the specific needs and gaps in the management of patients? And what are some successful examples of these models in practice?

Beth Sandy:

So when I think of outdated clinical approaches, I think of things like older chemotherapy regimens or ways that we used to manage toxicity that have changed. So, for example, when I started doing this 20 to 25 years ago, we had two drugs, and that was it. There was nothing else really, and you could throw some other chemotherapies, but, you know, really now we have approved agents that have improved survival, so we need to make sure we’re using the right thing. And then I think the other flip side of that is our ability to manage toxicity. Again, we have much better ways to manage things like nausea, things like neutropenia, even fatigue.  We have better ways of predicting and managing these things now than what we used to have.  So we need to make sure that our supportive care is also maximized so that the patients can stay on treatment, because small cell lung cancer is one of the diseases where treatment is really important, that they’re getting as much of the chemotherapy as possible and on time.

Whereas in non-small cell lung cancer, I may be a little bit more, you know, okay with them taking a trip or being delayed or things. But because this is such a chemo-sensitive disease, it’s really important for us, if they want to be aggressive, to make sure that we are maximizing our toxicity management. Otherwise, they’re not going to be able to get these treatments.  And that’s gonna definitely worsen their outcomes. I think also is discussing goals of care with patients. And I think there’s been a big push in the past 10 years with the early palliative care integration into our lung cancer practices. This is another thing that’s really important here, that we are having real conversations with our patients about the goals of their care. With extensive stage small cell lung cancer, our average survivals are a year or two even with treatment.

So, you know, I don’t need to say to a patient on the first visit, like, you know, this is the exact numbers, because I don’t want patients to perseverate over, you know, exact numbers. But I also think it’s important to say, you know, this is something that we can’t cure, and we’re going to try to manage it as long as possible, but it’s an aggressive disease.  So, you know, what are your…what’s important to you? What are the goals that you would like to see? And that would give an open-ended question for patients to say, well, I’d like to be alive in 10 years for this. And when they say something like that, that might be an opportunity to say, well, I hope that that can happen, but I’m really worried with what we know about this disease, that that might not be, you know, realistic. So what do you think in the short term your goals are?

And that may be an open-ended question too, where they might say, you know, I don’t want to be sick or in the hospital. That’s really important that I’m at home, or that I can do this or that. So this is a disease where we’ve been really well-trained just in the past five to 10 years about how to have these discussions with patients that I would say 20 years ago when I started, we weren’t, I don’t think personally I was as good at having these conversations, and I don’t think we were as well-trained in the profession at this. And we found that this has been extremely helpful for a good patient-provider relationship as well as patient-centered care when they’re making decisions along with us.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. And certainly as we talk about how to empower our patients, that shared decision-making that you talked about and incorporating goals of care is incredibly important. Dr. Seetharamu, do you have anything to add with regard to shared clinical decision-making or any other advances or things that address outdated treatment?

Dr. Nagashree Seetharamu:

Yeah, I can’t emphasize how important it is to have the goals of care discussion, but I think, you know, even though the treatment regimen has not changed for first-line much, there have been some nuances to it, right?  We are routinely including immunotherapy in first line. We now have some supportive care. Trilaciclib (Cosela) is something that we use for patients to help support and prevent admissions. These are things that may not be done, and there are some insurance barriers. Trust me, we are on the phone a lot of times that we shouldn’t be, you know, trying to get something approved despite clear benefit and FDA approvals. So, yeah, that’s a barrier that I should have spoken about, probably number one.

But that aside, I think, you know, that’s one thing that we see that is done a little differently in the community. I spoke about tarlatamab-dlle (Imdelltra). You know, many people just jump to different treatments because they just feel like it’s not…they’re not able to offer these newer treatments because of inpatient monitoring, what have you. So they may just start from a Platinum-etoposide to giving them, again, the same regimen or jumping to, you know, topotecan (Hycamtin), which we know that, you know, can…there can be better regimens than that. There are some newer agents that people may not…I’ve seen that in underutilization of some of the newer. We don’t have a lot of approvals in this space, but even the ones that have been approved, there’s relative underutilization of it. So I think education of providers in the community setting is helpful.

Dr. Nicole Rochester:

Thank you so much. Well, it’s time to wrap up our roundtable. I have learned a lot. I’ve really enjoyed this conversation with the two of you. And so now it’s time for closing thoughts. So I’ll go to you, Ms. Sandy, what would you like to be your takeaway message? What’s one of the most important things for our audience?

Beth Sandy:

I think one of the most important things is don’t write off your patients with small cell lung cancer. You know, it’s an aggressive disease. It can be hard to manage. They have a lot of comorbid conditions, but some of these treatments can work well, especially the newer agents. And so, you know, really working with your patient to keep them on therapy, but while at the same time understanding what their goals of care are and continuing that discussion throughout your patient-provider journey, and continuing to understand what their support systems are, what is important to them, and then that will help you and the patient make these treatment decisions along the way.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. And what about you, Dr. Seetharamu, what are your closing thoughts?

Dr. Nagashree Seetharamu:

Yeah, I agree with Ms. Sandy on everything that she said. I think emphasizing the importance of multifaceted approach to overcome practice barriers, from reducing stigma and improving access to diverse patient populations, improving clinical trial inclusivity, and closing healthcare disparities perhaps are top strategies. And then, you know, for future, it’s just a call to action, you know, for improving funding for clinical trials and to also, you know, try to see if there are programs that can mitigate disparities that we see.

And then we spoke about stratifying patients, you know, making it a more personalized care, just as we do for non-small cell lung cancer these days with all the novel information that we have so far, and making sure that every patient, no matter where they are, who they are, receive optimal care that they should.

Dr. Nicole Rochester:

Well, thank you both again, Dr. Seetharamu, Ms. Sandy, thank you for this incredibly informative conversation. And thank you again for tuning in to this Empowering Providers to Empower Patients, Patient Empowerment Network program. I’m Dr. Nicole Rochester. Thanks for watching.


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Aïcha Diallo: Why Is It Important for You to Empower Patients?

 Why is it important to empower patients? Aïcha Diallo, MPH, CHES discusses her approach to patient empowerment, the benefits of engaging patients, and the importance of including care partners in informative conversations.

 

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Transcript:

Aïcha Diallo:

I empower patients by first defining empowerment and shared decision-making to them and their care partners. And I do this because when patients first hear the word cancer, nothing else makes sense, and they start feeling overwhelmed and even lost. So it’s very important to provide them information that is digestible and easy to comprehend, and making sure that they understand what it means to be empowered and having a seat at the table to effectively communicate with their healthcare teams so they get the equitable care they need.

It is essential for them to know that they are at the center of their care. They are the most important voice, they’re the leader and the CEO of their own care and their healthcare team. So for them to know that and to cherish that is very, very important. And I also want patients to know that the healthcare professionals are the experts at what they do, but they, the patients, are the experts at what they need, what they want, and who they are as unique individuals. So it’s important for them to remember that.

For me, empowering patients is also encouraging them to value this important role, and opening the door to engaging in shared decision-making by feeling comfortable to speak up about their care and being equipped to ask their healthcare professionals the right questions, share their goals and their concerns, because those matter as well. And being empowered is also involving their care partners in their decision-making process. You’ll hear me talk about care partners a lot alongside patients, because we want to celebrate them and emphasize that they are an important part of their loved one’s care, and often make the decisions with them or for them. So we always want to include them in the informative conversations to help make the best treatment decisions for patients living with cancer. 

Why Should Endometrial Cancer Patients Engage in Their Care?

What role do patients play in their endometrial cancer care and treatment decisions? Gynecological cancer expert Dr. Nita Karnik Lee explains the shared decision-making process and discusses the benefits of engaging in conversations with your healthcare team. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

 

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Transcript:

Katherine Banwell:  

Would you define shared decision-making, Dr. Lee? Tell us why it’s so important for patients to engage in their care.  

Dr. Nita Karnik Lee:  

Shared decision-making is sort of the idea model, right? It’s this idea that we want to, as physicians, know what values my patient has, and I want to be able to impart information that I think will be helpful for them to make a decision. Sometimes the decisions are do I want to do surgery or not? Sometimes the decision are do I want to do chemo or continue chemotherapy? Those are very different decisions, and shared decision-making is a way of saying we’re going to have some kind of communication back and forth where I’m like, hey, this is what I think is happening. These are the choices that you have.  

And you telling me, okay, these are the things that I’m worried about. These are the things that align with what I want to do. I think it’s really important, though, to not have physicians put it out as, oh, well, I just let the patient decide, right, because just like when my car breaks down or my lights don’t work at my house and I get an electrician to come and see, I have no idea what they’re talking about.  

I have no concept. I really rely on them to say, well, I don’t know what kind of wire for you to use in my house. I have no idea. So, we really want to be careful that shared decision-making doesn’t turn into a menu of choices that we, the physicians, are actually giving up their role in advising if that makes sense. A lot of shared decision-making is in that relationship of trust and saying I really get this. I get what you’re telling me.  

I have patients, for example, who are on chemotherapy for a recurring disease, either uterine or ovarian cancer, and a lot of times you’re making these decisions of, okay, quality of life, like, what are events that are coming up? Sometimes they don’t always align with what I think is best, but if somebody tells me, you know what, I’m going to do these three cycles, but my son’s wedding is coming up. And I really need a month off beforehand, that aligns for me because I think that’s important, but maybe it’s not the standard.  

And so, kind of really knowing your patient, from my perspective, and also, as patients, not being afraid to say these are my values, and this is what’s really important to me. People will hear it, and they’ll feel better equipped to be able to help you guide those decisions with the caveat that sometimes I’ll say, look, you know what, I’m pretty worried about you. Yes, let’s give you a month off before, but let’s scan right after the wedding and see what’s going on.  

And then we can decide what we’re going to do after that. Or holiday times are oftentimes where I really give people sometimes a break. If they’ve been on chronic chemotherapy, sometimes this is a time where I’d say I’m really worried. I don’t think we can give you a break. People will tell me I know you’re worried about me, but this is really important. And we work together on it. I think it’s knowing the medical background, and then making sure you know what your patient wants, from that perspective.  

Katherine Banwell:  

And having an open line of communication. 

Dr. Nita Karnik Lee:  

Yes. 

Katherine Banwell:  

That’s what you’re saying. 

Dr. Nita Karnik Lee:  

Exactly. I think you hit it on the nail. Having an open line of communication, and not feeling that you need to hold back from that. I think it’s much easier for our whole team. I work really closely with our nurses and PAs, and sometimes one of the nurses will be like, you know what, she really wants to talk to you about this. Sometimes it’ll be maybe not even talking to your doctor first, but talking to the person on your team you feel closest to, to say I’ve been really thinking about this. I know Dr. Lee wants to do this, but this doesn’t align with my kid’s graduation, or my grandkid’s something, and those things are really important to get that open.

Tools for Improving Access to Quality Endometrial Cancer Care

What proactive steps can endometrial patients take to access the best care? Gynecological cancer expert Dr. Nita Karnik Lee walks through self-advocacy steps that may encourage improved patient outcomes. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

 

Related Programs:

What Are Common Endometrial Cancer Health Disparities?

What Are Common Endometrial Cancer Health Disparities?

Why Should Endometrial Cancer Patients Engage in Their Care?

Why Should Endometrial Cancer Patients Engage in Their Care?

Advances in Endometrial Cancer Treatment and Research

Advances in Endometrial Cancer Screening and Detection


Transcript:

Katherine Banwell:  

How is the medical community dealing with these disparities? How are they handling them? 

Dr. Nita Karnik Lee:  

You know, I think a lot of it is, again, sort of educating. You have to think about you want patient education. You want provider education. Sometimes I have patients who come to me and say, you know what, I reported these symptoms to my doctor, and they said it was nothing, or they told me it was a UTI. So, we often think about, when we’re making an intervention, we want to make sure that providers who are seeing patients first-line are also hearing about this as in their differential diagnosis, and that patients have enough knowledge that they feel really comfortable advocating for themselves. Many of our patients who are cancer survivors will tell us. 

Or when they speak on their own in different ways or say listen to your body, make sure you’re advocating for yourself, and if somebody doesn’t listen, find another doctor. I hate to say it, but you just have to know that those are things that happen. I think structurally, as providers, we have to be really aware of our own biases that we bring to patients and their families and our own health system.  

How are we set up to help people more? I think a lot of it is quick access to care. And so, I think that’s where we try to make some differences in terms of both policy and policy within a health system, and then larger policy that’s kind of maybe more not just one hospital, but statewide or nationwide.  

Katherine Banwell:  

You mentioned advocating for oneself and how important that is. If a patient feels like they’re not receiving good care or they’re being treated unfairly, what steps should they take to access better overall care? 

Dr. Nita Karnik Lee:  

Well, I mean, a little bit of it’s complicated, because so many of us are kind of limited by our insurance. We don’t always have the ability to do all the things. It can be scary, and it can be intimidating. I think one of the things that could be very helpful is to prepare yourself with a list of questions, to be like these are the questions. These are the things that I’m not feeling are being heard, and potentially even getting a second opinion. You can say this in a way that you can sort of feel like your doctor doesn’t need to feel bad. 

I even think second opinions, for me, I’m all for them. More information is better. That’s a way of positing it and saying, look, I know we’ve gone through these symptoms. These are my concerns. I don’t think they’re being addressed, and I would really like to get another opinion. Physicians are often like, yes, get another opinion. And so, those are ways that I think people can find the right fit for the physician that they want. 

What Are Common Endometrial Cancer Health Disparities?

How can a patient’s individual circumstances impact the quality of their endometrial cancer care? Gynecological cancer expert Dr. Nita Karnik Lee reviews common health disparities and their impact on patient outcomes. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

 

Related Programs:

Tools for Improving Access to Quality Endometrial Cancer Care

Tools for Improving Access to Quality Endometrial Cancer Care

Why Should Endometrial Cancer Patients Engage in Their Care?

Why Should Endometrial Cancer Patients Engage in Their Care?

Current Endometrial Cancer Treatment Approaches

Current Endometrial Cancer Treatment Approaches


Transcript:

Katherine Banwell:  

Dr. Lee, disparities in healthcare can impact a patient’s experiences and their outcomes. What are common health disparities that gynecological cancer patients can face? 

Dr. Nita Karnik Lee:  

Yeah, this is really – I always think about the cancer care continuum. This is the model that I think of. I think of what is risk reduction and prevention? What is early diagnosis and getting to the right person to take care of your cancer? Did you get the right treatment? And then did you get the right follow-up? 

Disparities can happen along those ways, and some of it can be related to access to care. Access, oftentimes, people just think it’s insurance, but it’s not. It is insurance. That’s a big part of it. We know that our states that don’t have as much insurance support for our patients who are poorer actually do worse. There’s worse survival. 

But I think it’s also does the person feel comfortable with the healthcare system? Are they connected with their doctor? Is it a language issue? Is it a bias issue that they’ve felt that they haven’t been comfortable in their health system before? All of those things can create these roadblocks along that whole cancer care continuum. Access really means more than just like it has to be acceptable. It has to be available. 

It has to be something that the person can feel comfortable with when they make a decision about treatment. That’s where we see things like people say, oh, that person declined surgery. I’m like, but did they really decline? Why did they decline? Did anyone get into what they were worried about, what their experience had been? So, we can’t just blame the patient and say, oh, they just didn’t want treatment. It’s really a complex area. The biggest disparity we see is in uterine cancer. 

So, Black women are much more likely to die of uterine cancer at any stage, especially older Black women. Some of this is access, but some of this is that there are actually differences in biology, and it’s kind of tricky because nobody thinks there is. Race is really a construct, right? It’s not really a biological difference, but there are differences in the types of more aggressive cancers that Black women get, and there are a lot of different reasons that people have started to look at that, both genetically, but also environmental influences, stress influences. 

So, the biggest disparity is probably in the uterine cancer, but unfortunately, we still see disparities by race in ovarian and cervical cancer. We also see disparities by income and insurance type. And so, I think those are kinds of things that are just the larger picture. 

How Does Biomarker Testing Impact Ovarian Cancer Screening and Detection?

What role does biomarker testing play in ovarian cancer detection? Dr. Nita Karnik Lee reviews genetic mutations related to ovarian cancer and discusses key steps women with a family history of the disease should consider. 

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

See More from DETECT Ovarian Cancer

Related Resources:

How Is Ovarian Cancer Detected?

How Is Ovarian Cancer Detected?

What Are the Symptoms of Ovarian Cancer?

What Are the Symptoms of Ovarian Cancer?

Patient Empowerment | Advice From an Ovarian Cancer Expert

Patient Empowerment | Advice From an Ovarian Cancer Expert


Transcript:

Katherine Banwell:  

What is the role of genetic and biomarker testing as screening tools? 

Dr. Nita Karnik Lee:  

Genetic testing is very important. When we get, for example, and I’ll kind of back up a little bit to say if somebody gets diagnosed with ovarian cancer, that is actually everyone who has a diagnosis of ovarian, fallopian tube, or peritoneal, because those are all sort of the same cancer, should get genetic testing to see if there’s a hereditary predisposition in their genetics that are passed on.  

That’s called germline testing. And those patients, and 20 percent of them, may actually have a hereditary condition that could be passed on. Then that’s where you can see how important it is. If I have somebody, and her children now know that the person has the BRCA gene, for example, then it’s really important for her children, men and women, to get screened, because then they may be able to do preventive measures, such as preventive surgery, preventive medications, or more frequent screening, to be able to prevent cancer from happening. 

Katherine Banwell:  

Okay. What genetic mutations are associated with ovarian cancer? 

Dr. Nita Karnik Lee:  

The ones that are most common that you hear about are something called BRCA, or B-R-C-A, 1 and 2. Those make up the majority of those mutations. There are some other less common ones such as Lynch syndrome, which is more associated with colon and endometrial cancer but can have about 10 percent to 12 percent of patients related to ovarian cancer as well.   

Nowadays, when we do genetic testing, we do a panel, so there are like 35 genes that are tested. There are a whole lot of different genes that can have an association with ovarian cancer, but the BRCA genes are the ones that most people hear about.   

Katherine Banwell:  

Should women with a family history of ovarian cancer take extra precautions? 

Dr. Nita Karnik Lee:  

That’s a very good question. So, if you have a family history, it’s probably important to talk to your doctor and to maybe even see somebody in cancer genetics who can draw out a family tree for you to see how high is this risk? If people have an ovarian cancer patient, one – or a breast cancer patient – some of it also matters what was the age that that patient got diagnosed. Some genetic mutation syndromes, actually the patient gets diagnosed much younger than average.  

The average age for ovarian cancer is about 60. Some patients will get it. For some genetic mutations, it’s still about that range. So, I think it’s important because even if you don’t have a genetic mutation, having a family member with ovarian cancer slightly increases your risk. 

Knowing those symptoms, knowing that your history will help your doctor dictate how quickly are they thinking about something else is really important, ultrasound, but we know that ultrasound is not perfect. 

How Is Ovarian Cancer Detected?

Dr. Nita Karnik Lee discusses how ovarian cancer is diagnosed, shares challenges in screening tests and procedures, and reviews ongoing research in the field. Dr. Lee also shares key questions to ask one’s healthcare team about ovarian cancer detection.

Dr. Nita Karnik Lee is a Gynecologic Oncologist at The University of Chicago Medicine. Learn more about Dr. Lee.

See More from DETECT Ovarian Cancer

Related Resources:

How Does Biomarker Testing Impact Ovarian Cancer Screening and Detection?

How Does Biomarker Testing Impact Ovarian Cancer Screening and Detection?

What Are the Symptoms of Ovarian Cancer?

What Are the Symptoms of Ovarian Cancer?

Patient Empowerment | Advice From an Ovarian Cancer Expert

Patient Empowerment | Advice From an Ovarian Cancer Expert


Transcript:

Katherine Banwell:  

Dr. Lee, what are the screening tests and procedures to detect ovarian cancer? 

Dr. Nita Karnik Lee:  

So, one of the important things to realize is that we do not actually have a screening test for ovarian cancer. That’s really important for the general public who maybe is at average risk. Patients who have a strong family history or a genetic, hereditary condition, sometimes we do use ultrasound and CA125, but that’s not considered a screening test for average-risk patients. We’re very limited in that sense for ovarian cancer. There’s a lot of research that’s being done about this.  

Katherine Banwell:  

Have there been advances in screening or screening technology that patients should know about? 

Dr. Nita Karnik Lee:  

I think the issue with screening and ovarian cancer is because we have not had any, and there have been really large studies that have been done both in the U.S. and in Europe, trying to see does ultrasound work every six months. Does CA125 and ultrasound work?

There’s some combination of blood tests that have started to become a little bit more researched in terms of going further along, but there’s really nothing that’s the perfect answer. One of the really important things that we talk about is knowing family history to see if there’s something that can be done to help patients who have a family history.  

And then also being really aware of subtle symptoms of ovarian cancer that can trigger you going to your doctor and then really pushing and advocating for yourself and your family member to get a workup done, which can often include an exam, an ultrasound, and maybe even something like a CAT scan or CT scan if any of the symptoms are a little more worrisome.  

Katherine Banwell:  

What questions should patients ask their doctor about detection? 

Dr. Nita Karnik Lee:  

I think that when we’re thinking about detection, or if somebody has these symptoms coming up, definitely asking, like, hey, you know what? I’m seeing you as an internist, but I haven’t had a pelvic exam. So, making sure you’re seeing a gynecologist or an internist or family medicine doctor who can do a vaginal and a rectal exam is one important step. Perhaps getting an ultrasound or perhaps getting a CAT scan if the symptoms are more significant.  

Unfortunately, we still see a lot of women who have these sort of vague symptoms, maybe they’re GI-related, and they get a workup for like six months on an EGD, or a colonoscopy, or they tried Pepcid. And all of those things are good, and they’re not unreasonable to do, but I think something else that can be done in addition would be a pelvic ultrasound, as an example.

I would say that if somebody doesn’t have any of those symptoms, but they have a family history, that’s why we’re in a little bit more of a bind as to know what the right thing to do is. We know that for patients who have a known BRCA mutation and are not ready for risk reduction surgery, we often will use ultrasound, but we know that ultrasound is not perfect. 

Expert Perspective | The Value of Empowering Endometrial Cancer Patients and Care Partners

 

How can patients feel empowered after an endometrial cancer diagnosis? Dr. Hinchcliff emphasizes seeing a GYN oncologist, asking questions, and bringing a care partner to appointments for support and understanding key decisions.

Dr. Emily Hinchcliff is a Gynecologic Oncologist at Northwestern Medicine. Learn more about Dr. Hinchcliff.

 

Related Programs:

What Questions Should Patients Ask About Endometrial Cancer Testing?

What Questions Should Patients Ask About Endometrial Cancer Testing?

Questions to Ask About Endometrial Cancer Clinical Trials

Questions to Ask About Endometrial Cancer Clinical Trials

Endometrial Cancer | What Is Personalized Medicine?

Endometrial Cancer | What Is Personalized Medicine?


Transcript:

Katherine Banwell:  

As a provider, Dr. Hinchcliff, how do you empower care partners and patients who have been diagnosed with endometrial cancer? 

Dr. Emily Hinchcliff:  

So, I think that one of the most important things about a diagnosis of cancer is to develop the relationship with your physician. I think that it is truly a partnership, and it is an incredibly important thing as you think about the next steps in your treatment. For someone who’s diagnosed with endometrial cancer – or, honestly, cancer in general – making sure that you’re seeing a cancer specialist in obstetrics and gynecology – it can actually be sometimes a little bit difficult. 

You might have gotten your diagnosis with a general OB/GYN, but it’s very important to see a GYN oncologist – a cancer-specific doctor – because we’ve actually shown that patients who see GYN oncologists are more likely to get guideline-appropriate care – so, care within what we think of as the right standard – and then they tend to do better with their cancer. So, that’s kind of the first step, is finding that doctor and developing the relationship with them.  

The second thing that I would say is that you should ask questions. Bringing people to your appointments to have an extra set of ears is always helpful. Taking notes and trying to keep track yourself of what was talked about in your appointment, I always encourage my patients to do, but really, asking questions. So, making sure that you know what those molecular tests are that your doctor is sending, making sure you know, once they’re sent, what your results were and how that might change what your treatment will be. 

Now, you don’t need to go and get a degree in biology or go to medical school. I think that that’s a lot to ask someone going through a cancer journey, but it is really important that you understand where those key decision points might be made because that allows you to feel not only like your own advocate, but that you have some ownership of those decisions and you understand why the decisions are being made in the way that they’re being made. 

Questions to Ask About Endometrial Cancer Clinical Trials

 

What questions should patients ask about endometrial cancer clinical trials? Dr. Hinchcliff outlines key inquiries regarding trial structure and eligibility and encourages patients to explore online resources and support groups for additional information.

Dr. Emily Hinchcliff is a Gynecologic Oncologist at Northwestern Medicine. Learn more about Dr. Hinchcliff.

 

Related Programs:

Current Endometrial Cancer Treatment Approaches
Advances in Endometrial Cancer Treatment and Research
Where Do Clinical Trials Fit Into an Endometrial Cancer Plan?

Where Do Clinical Trials Fit Into an Endometrial Cancer Plan?


Transcript:

Katherine Banwell:  

What questions should endometrial cancer patients ask their doctor about a potential trial? 

Dr. Emily Hinchcliff:  

I think the two important things to ask are what is the structure, what am I actually going to get, or what could I get, depending on how many of those arms exist on the trial. 

Katherine Banwell:  

Would the doctor know that specific information, though? 

Dr. Emily Hinchcliff:  

It’s a good question, actually. So, generally speaking, most of us as physicians, in order to offer a trial to you, we have an overarching structure of that clinical trial. There may be some nuances about what the exact enrollment is in terms of the majority of the patients get this treatment, whereas a small minority get this treatment, or because of this patient’s specific mutation profile, they must be enrolled on this subset of the trial. 

So, there are some nuances there that, generally speaking, if I as the physician don’t know, I will contact what’s called my clinical trial coordinator or my research nurse, and they can come spell out some of those nuances, but if your doctor’s recommending a trial to you, they generally know what is the overarching goal, and what is the overarching treatment being tested. 

Katherine Banwell:  

Okay. How can patients learn more about clinical trials? 

Dr. Emily Hinchcliff:  

So, there are a lot of resources online. To some extent, it can be really overwhelming for patients to try and tease out am I a candidate, would I be eligible for a trial, or this trial, is this trial available at my institution. So, what I would say – first and foremost, ask your physician. I think that your physician is your advocate in this and your partner in your cancer care, and I think that certainly I and all of us as physicians feel really strongly that we can help you weigh those different options as you see them and as we learn about them.  

So, I think that that’s where I would start. I think there are a lot of online resources. The FDA and the government have a cancer trials website that you can go to and search for your specific cancer type. 

Many institutions – my own included – will have their own institutional trials website, where, on my institution, you can look up and see what trials do we have open on my institution, because obviously, the government will speak nationally, but your particular treating physician might not have the availability to give you that particular trial. And then, I also will say I think patient support groups are an incredible opportunity to understand what others have been going through and what treatments have been offered, and that can be a really helpful resource as well to get hooked into as a patient is trying to tease all this out.