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HCP Roundtable: Exploring CLL Mutations and Best Practices for Side Effect Management
HCP Roundtable: Exploring CLL Mutations and Best Practices for Side Effect Management from Patient Empowerment Network on Vimeo.
As the chronic lymphocytic leukemia (CLL) treatment landscape evolves, how can healthcare professionals deepen their understanding of mutation profiles, including the emergence of novel CLL mutations over time? What innovative approaches are transforming the management of CLL side effects? Additionally, how can barriers in CLL practice be removed to enhance physician-patient communication and promote shared decision-making?
Dr. Jennifer Brown from the Dana-Farber Cancer Institute and Dr. Callie Coombs from the University of California, Irvine, share their expertise and best practices for CLL healthcare providers.
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Transcript:
Dr. Nicole Rochester:
Welcome to this Empowering Providers to Empower Patients or EPEP 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 overcome practice barriers.
In this CLL roundtable, we are tackling exploring CLL mutations and best practices for side effect management. As the chronic lymphocytic leukemia treatment landscape evolves, how do CLL healthcare providers better understand mutation profiles, including the emergence of novel CLL mutations over time? What groundbreaking CLL therapeutic targets are emerging, tailored specifically to molecularly defined patient subgroups? And what innovative approaches are transforming CLL side effect management? These are just some of the things that we’re going to discuss today. We’re going to talk about the complexities of CLL mutations and the clonal evolution and resistance mechanisms in CLL.
We’ll discuss clinical trials and novel targets focused on molecularly defined patient subgroups. And lastly, we’ll talk about strategies for healthcare provider to healthcare provider communication regarding the management of side effects.It’s my privilege to be joined by Dr. Jennifer Brown, Director of the CLL Center of the Division of Hematologic Malignancies at Dana-Farber Cancer Institute, and the Worthington and Margaret Collette Professor of Medicine in the field of Hematologic Oncology at Harvard Medical School. Thank you so much for joining us, Dr. Brown.
Dr. Jennifer Brown:
My pleasure. Thank you for having me.
Dr. Nicole Rochester:
It’s also my privilege to be joined by Dr. Callie Coombs, an Associate Clinical Professor at the University of California, Irvine. Dr. Coombs primary clinical focus is in the care of patients with chronic lymphocytic leukemia and small lymphocytic lymphoma. She has participated in multicenter studies examining the real world implications of novel therapeutic agents on the lives of patients, and has served as an investigator on a number of clinical trials. Thank you so much for joining us, Dr. Coombs.
Dr. Callie Coombs:
Thank you for having me as well.
Dr. Nicole Rochester:
So let’s jump in as we have a lot to discuss as it relates to understanding CLL mutations and best practices for side effect management in CLL. So we’re going to start with the complexities of CLL mutations. And the first question, I’ll start with you, Dr. Brown, how do CLL healthcare providers better understand mutation profiles including the emergence of novel CLL mutations over time?
Dr. Jennifer Brown:
Well, the first thing that’s important to recognize is that CLL is not defined by any particular mutation. The landscape is quite varied and we see a large number of different mutations at low percentages. Well, the second key point to remember is that there are different mutations at baseline and then there can be acquired mutations that include some of what we see at baseline, but also novel resistance mutations that we don’t ever see at base.
So at baseline, the most common mutations, which are somewhere in the 10 to 20 percent range of patients, although less than that if you have very early stage patients, affect the p53 gene, NOTCH1, SF3B1, and ATM. P53 is the most important because that one does influence our thinking about the patients and our choice of therapy in some cases. P53 can be altered in CLL in two different ways. Actually, the most common way is as a deletion, deletion of the short arm of chromosome 17 or 17P deletion. About 75 to 80 percent of patients that have that deletion will have a point mutation usually in the other p53 allele. So they have double knockout of p53.
A small percentage of people with the deletion will not have the mutation. And then a certain number of patients will have just the mutation without the deletion. And one of the things that I’ve been very interested in for a while that we’re still trying to understand better is the implications of these different combinations of the way p53 can be affected in people with CLL, and that it may, in fact, be more adverse to have both alleles knocked out than single, although we don’t have great data for that as yet because most of the data that we have has combined all of it together.
But it’s very important to test for the p53 mutation alone because even if patients have only that one, at present, we consider the treatment implications of it all similarly regardless of how the p53 gene is affected. And then NOTCH1 is a fairly common mutation that always worries us a lot, because it’s associated with Richter’s transformation, which is a very high-risk event, but we don’t know anything to do about that to try and prevent it or to alter our therapy based on it.
So at the moment it’s mostly something that we are aware of that we keep an eye on but not that changes therapy. And SF3B1, ATM, and this long list of other genes that can be mutated in just a few percent of CLL, and mostly what we know about them is some biology that’s been studied, and then the fact that the more of these mutations are mutated in a patient that is associated with a worse prognosis, just a total number.
But that’s not something also that really alters our therapy. And then when patients go through lines of therapy, they can sometimes acquire mutations in these genes. So a patient can acquire a mutation in p53 or in NOTCH after their second or third line of therapy. But the mutations that are hottest right now, or that people are most interested in are some of the mutations that occur as resistance to therapy. So in particular, that means BTK mutations.
Covalent BTK inhibitors have transformed the therapy of CLL, and they bind to the cysteine 481 residue of BTK. So that means, as you might imagine, that if you mutate that cysteine so that the inhibitor can’t bind, that will be associated with resistance. And that, in fact, is what has been found that the cysteine to serine mutation at 481 is the most common resistance mutation in patients on covalent BTK inhibitors.
And in the case of ibrutinib (Imbruvica), it makes the inhibitor into a much weaker and non-covalent inhibitor. In the case of acalabrutinib (Calquence) and zanubrutinib (Brukinsa), it probably abrogates all activity. And so that’s a mutation that we will sometimes look for in patients with clinical progression on those drugs. There’s also a mutation in BCL2 that can occur in patients in venetoclax (Venclexta).
So another example of an on target resistance mutation. The role of that one is a little bit less clear, and testing for it is not as widely available, but we’re still working on that. Resistance to venetoclax is probably more complicated than resistance to BTK inhibitors, although there’s also a subset of patients who will get BTK inhibitors who have novel mechanisms of resistance not related to BTK that we don’t really know anything about as yet.
And then finally, the non-covalent BTK inhibitors are becoming available, pirtobrutinib (Jaypirca) was approved for CLL in the United States in December for patients who’ve had covalent BTK inhibitors and venetoclax. And we’re starting to see different mutations in BTK at different sites, even though pirtobrutinib has activity against the 481 mutation. So there’s going to be a lot of activity in this area in the next few years probably.
Dr. Nicole Rochester:
Thank you so much, Dr. Brown, that was a very comprehensive overview of the mutations. Dr. Coombs, do you have anything that you want to add to what Dr. Brown said perhaps specifically around mutations associated with the progression of CLL?
Dr. Callie Coombs:
Sure. So, that’s a hard act to follow. She really took us through a whirlwind of everything mutation-related. I think what I would like to focus on in my answer is, well, what should we be testing for on a day-to-day basis in our CLL practices and what are some common misconceptions? So specific to TP53, I would say this is the most important test as far as all of the genetic tests that influences what we do day to day in the care of patients with CLL.
I test for this for my newly diagnosed patients who I think may be interested in enrolling in a clinical trial, first of all, so the standard of care in CLL is watch and wait, however, patients with higher risk disease may be eligible for trials looking at early intervention specifically the SWOG EVOLVE trial looking at early treatment. And so that’s one of the risk markers that can get a patient into the higher risk category of CLL where they could be eligible for a trial.
A common misconception I see is that 17p is the same thing as a TP53 mutation, it’s definitely not. So these are two different tests that have to be sent. 17p can be picked up on karyotype testing and on FISH testing where it looks for 17p deletion. However, mutations are a different test. And so I usually send a next gen sequencing assay that includes other genes.
However, you can test purely just for mutations in the TP53 gene, but again, that’s a sequencing test, so I’d like to convey that, somewhat a misunderstanding, but it’s such an important gene in CLL because when patients have TP53 aberrations, whether that’s 17p or a TP53 mutation or both, given that they can occur in isolation or together, these patients should never get chemotherapy, because they have extremely terrible responses to chemo, and that should not be part of the therapies offered to these patients.
The other interesting, I’d say controversy at least in 2024, is what is the role for mutation testing in the clinic in the setting of acquired resistance to inhibitors? So I think it’s very clearly important in the research setting where I think learning about the C481 mutation among others in the setting of covalent BTK inhibitors has shown us a lot about mechanism of resistance. But in the clinic, I don’t necessarily think that’s something that needs to be universally applied, given that it most of the time doesn’t affect what we would do clinically.
And so one example is a patient comes in progressing on ibrutinib, maybe about two-thirds of them may have a mutation in the C481S. However, if they’re clinically progressing, they need to switch therapy. And so I think an argument could be made in practice whether or not sending these mutation tests is beneficial, but research, clearly important, and I think it’s going to give us key insights into our therapeutic sequencing strategies going forward. So I’m certainly a proponent of doing the testing in a well-monitored setting, but I don’t think it’s ready for prime time to be applied completely broadly to our patients.
Dr. Nicole Rochester:
Thank you, Dr. Coombs, and I appreciate you adding that additional practical tips and information specifically for our healthcare providers. And you kind of moved into the next topic, which was really around new diagnostic tools and technologies that are available to detect and monitor mutations. So I’m going to go back to you, Dr. Brown, to see if you have any additional information that you’d like to share about new diagnostic tools, technologies with regard to these mutations and any other tips perhaps for our healthcare provider audience.
Dr. Jennifer Brown:
Well, really the only issue is what Dr. Coombs mentioned that it’s very important to get a next generation sequencing test to evaluate the p53 mutation, that it really is not well-evaluated by any other test, and is often missed because it’s thought that checking for the deletion is sufficient. So I would just reemphasize that point that she made very clearly. Other than that, we don’t really need any additional tools to monitor for mutations.
In the research setting we’re trying to do more and more sensitive assays to try and see when the earliest time that these mutations may emerge is and is there a way we could prevent that or, and just to better understand some of the biology, but it’s not really anything that’s needed in clinical practice. And we’re also not using the mutations to monitor residual disease. It turns out that the best way to do that is probably looking at the B-cell receptor itself, which is again, something that we’re studying in the research setting, but is not really something that needs to be done in clinical practices yet.
Dr. Nicole Rochester:
Wonderful. Thank you, Dr. Brown. We definitely want to leverage you all’s expertise in this area. And so my next question has to do with practices. And you’ve really kind of addressed this to some extent already. Are there any unforeseen or perhaps outdated practice-related barriers that may either hinder your work or that of your colleagues specifically related to better understanding CLL mutations?
Dr. Callie Coombs:
Yeah, I mean, I think in addition to what I mentioned about 17p and TP53, one type of mutation we haven’t talked about is assessing for the mutation status of IGHV. So that’s actually something else that I’ve seen frequently missed as far as the routine testing of a CLL patient. But I do think it’s very important to send. Is it as important as when we were in the chemoimmunotherapy era where it would be hugely predictive for who had a long remission and who wouldn’t? Maybe not as important, but I do think if someone’s unmutated that still can really help inform certain aspects of their journey. One is the time that between diagnosis and when he or she’ll need their first treatment.
But two, also the expected length of remission should this patient embark upon a time-limited regimen such as venetoclax and obinutuzumab (Gazyva). But the separate question is, again, coming down to the practical aspect of how IGVH is tested. So another misunderstanding that I’ve seen is FISH tests look for the IGH locus. And so I’ve seen on recurrent occasions if that’s deleted, they say, “Oh, that’s a mutation.” Well that’s definitely not the same thing, and so it’s just to realize the IGHV test is a very specific test.
Some large facilities do it as an in-house test, I myself have been sending mine out to the Mayo Clinic, there’s other vendors where you can do it, but what they do is they specifically sequence IGHV and then compare the patient sequence to a consensus germline sequence to determine the percent of mutation, and it’s actually a good thing to be mutated with this gene, these are the patients that often have a longer time until they need their first treatment, if they need treatment at all, and then they generally have better responses to therapy. Though with BTK inhibitors, that difference is often becoming quite slim given that they work in both groups of patients.
Dr. Nicole Rochester:
Wonderful. Thank you so much, Dr. Coombs. So now we’re going to shift to talking about clinical trials and novel targets focused on molecularly defined patient subgroups. So, Dr. Brown, can you talk about any emerging CLL trials targeting specific molecular subgroups, and also how can CLL experts stay updated on these advancements in clinical trials?
Dr. Jennifer Brown:
So, as you heard from Dr. Coombs, there’s increasing interest in looking at high-risk patients in particular, and I think looking specifically at patients with p53 aberration in dedicated clinical trials, it’s become increasingly clear that the behavior of the disease when it’s higher risk based on p53 mutation, NOTCH mutation, IGHV status is quite different, particularly with time limited therapy compared to lower risk disease.
And so having dedicated trials that evaluate outcomes specifically in certain of these subgroups is increasingly important. We do have more trials than we used to focusing specifically on p53 aberration. My personal belief is that we would be well served to have trials separately in the IGHV groups that Dr. Coombs mentioned, although that has not gained as much traction.
And then what we are seeing is now that there are resistance mutations, it actually has turned out that some of the drugs that we use in that setting, venetoclax and pirtobrutinib, seem to have pretty similar activity in patients with and without the mutations. But as drugs are being studied in this context, there’s been an increasing tendency to study them in specific subgroups.
So patients who have the mutation and had clinical progression on a covalent inhibitor, patients who don’t have the mutation and had clinical progression, patients who may have come off their covalent inhibitor for adverse events who may not actually be resistant, what is their response to the next line of therapy? And so all of that is just helping us understand in a more nuanced way what the best benefit for patients will be as we look at these different subgroups of patients.
Dr. Nicole Rochester:
Thank you, Dr. Brown. Appreciate that. Dr. Coombs, do you have anything to add?
Dr. Callie Coombs:
Yeah, so I echo all of Dr. Brown’s comments, and I think I’m the person that is bringing all the practical aspects of CLL care because it’s, she’s so thorough. I just always like to contribute a few little pearls. So, pirtobrutinib has been an exciting drug, to see it become available for our double refractory patients. So the current FDA indication is for patients failed by not only a covalent BTKi but also venetoclax. But it’s the first BTK inhibitor that we can effectively use in the setting of a prior BTK inhibitor.
And that’s because of this unique aspect where instead of forming a covalent bond at the C481 residue, it binds reversibly, and we can still see activity. But the practical aspect is that that’s not an effective strategy when you have a patient progressing on, say, ibrutinib, you can’t switch them to acalabrutinib (Calquence) or zanubrutinib (Brukinsa) because of their shared mechanism of resistance. They’re all covalent inhibitors. They all share the same mechanism of resistance.
And so that’s one thing I’d like to bring up. However, there’s a very different and very common clinical situation that I encounter really a lot in my clinic, which is intolerance. And so that’s where it would be a very effective strategy to switch a patient from one covalent drug to another. And so literally in the past couple weeks of clinic, I’ve had patients with chronic long-standing toxicities to ibrutinib that perhaps went underrecognized where I say, “Hey, you’ve had…noticed your blood pressure has gone up a lot. Let’s switch you over to acalabrutinib,” or other patients, “Oh, you’ve had issues with atrial fibrillation…let’s try switching you to zanubrutinib.” Because the rates are a lot lower and a lot of patients can have improvement or just complete resolution of the prior side effect.
And so I hope that that emphasizes this is something that we think about every day, and switching is appropriate in the setting of intolerance. It’s not appropriate when you’re staying in the covalent class to switch in the setting of progression. But pirtobrutinib being a non-covalent inhibitor is certainly very effective after a covalent. And I think once we see readout of some of the ongoing Phase III trials, we may be able to use it in that setting under an approved FDA label, though that is to be seen in the future.
Dr. Nicole Rochester:
Awesome. Thank you. Thank you to both of you. And that leads us very nicely into our next topic. And so we’ve been talking about improving CLL treatment efficacy, we’ve talked about mutations, we’ve talked about really providing better outcomes for our patients by using therapies that are very specifically designed for the molecular characteristics of their disease. But along with all those therapies, of course, come potential side effects. And so, Dr. Coombs, I’m going to start with you and then we’ll go to Dr. Brown. Are there any strategies that you can share with our healthcare provider audience around innovative approaches or protocols that have been implemented to mitigate and manage the CLL side effects from the treatment?
Dr. Callie Coombs:
Well, I think it comes down to your internal resources, but I would say taking care of CLL patients is clearly a team effort. And so it’s not just me, but also a team of additional practitioners that I work with. So I’d like to emphasize how important pharmacists are because I’ve definitely seen some side effects that come about because a patient is now on a medication that interacts with whatever their CLL therapy is, which drives up the levels of the drug and then brings out certain toxicities so they can help us identify these.
If, perhaps I missed it or didn’t ask the patient about a supplement, et cetera. Next is nurse practitioners and oncology nurses. And so number one is it’s a team-based approach, and I think it’s certainly very important to have protocols internally. But also to just realize what the common toxicities are and how can we mitigate these.
One of the most common reasons that I’ve seen for patients stopping a drug prematurely actually is venetoclax. It very commonly causes neutropenia. And I’ve seen the drug given up on very early without any growth factor support, and so I think if you become educated and experienced with using drugs, you can realize there’s very clear strategies in improving patients with neutropenia, by supporting them with growth factor and getting them through whatever their defined plan course of venetoclax may be.
And then BTK inhibitors have a whole smattering of side effects as well where perhaps working with cardio oncologists can help in addition to other strategies depending on exactly what side effect the patient may encounter. So in summary, definitely a team-based effort and growing experience with the common side effects helps I think all comers with strategies to help prevent or mitigate such side effects.
Dr. Nicole Rochester:
Thank you so much, Dr. Coombs. Dr. Brown, do you have some additional best practices you’d like to share with regard to the management of treatment side effects?
Dr. Jennifer Brown:
Well, I agree completely with Dr. Coombs. I would just add that I think it helps a lot when you warn the patients ahead of time about things that may happen but that often go away or that you can manage. So, for example, headaches often happen early on when you initiate acalabrutinib but they go away typically very quickly. And so if patients know that, then they’re much less worried, and then you can talk to them about the strategies, because caffeine or acetaminophen (Tylenol) will often help with that. If you warn them that they may have some joint aches or pains, that can also help, since those are often transient.
With venetoclax, warning them about some nausea or diarrhea, and then we often manage that by subsequently moving the drug to the evening after they’re done with their ramp up, or initiating an antiemetic, things like this. And then oftentimes many patients who have that in the beginning, it doesn’t persist throughout the whole time that they’re on the drug. Sometimes the diarrhea may, but many times it doesn’t. So getting the patients through that early phase with the close management. Which again, it helps, have your team help with that, the nurse practitioners, et cetera, and then hopefully things settle out and everyone’s happy.
Dr. Nicole Rochester:
Wonderful. I just want to emphasize two things. One that each of you said. One is this idea of a team-based approach, which is important in the treatment of all diseases, but of course very important in the treatment of the cancer. And also this idea of educating our patients so that they know ahead of time what to expect and really involving them as part of the team. So I really appreciate those, both of those points.
Well, it’s time to wrap up our roundtable. I have really enjoyed this conversation and I’d like to get closing thoughts from each of you. So I’ll start with you, Dr. Coombs. What is the most important takeaway message you’d like to leave with healthcare professionals who may be listening as they watch this program and understand better about CLL mutations, clinical trials, and managing side effects?
Dr. Callie Coombs:
So what is the most important thing, there’s so many, I would just say CLL is a chronic disease that affects our primarily elderly patients, and so it’s a marathon, not a sprint. However, with all of the advances that we’ve had in excellent drug therapies, despite these resistance mutations, patients can attain many, many, many years of high quality of life. But it’s incumbent upon us as their providers to help ensure that quality of life through effective management of side effects that may be encountered over the course of their time on therapy for the patients that do need therapy.
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Peer Insights: Practicing Cultural Humility to Empower Your Patients
Peer Insights: Practicing Cultural Humility to Empower Your Patients from Patient Empowerment Network on Vimeo.
How can healthcare providers practice cultural humility to empower their patients? PEN’s Vice President of Programs Aïcha Diallo discusses barriers healthcare providers may encounter and advice for overcoming or minimizing these barriers to cultural humility.
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Transcript:
Dr. Nicole Rochester:
Cultural humility has practical implications for improving healthcare outcomes such as improved communication, empowerment, and trust between providers and their patients, and also enhance patient-centered care. But we know that there are barriers that may exist to putting these things into action. Aicha, what are some common challenges that healthcare providers face when trying to practice cultural humility?
Aïcha Diallo:
Some of the things that I’ve been seeing is really not being able to carve out enough time to listen to their patients’ unique traits, unique characteristics, needs, wants, concerns, or even goals. We always encourage our patients and care partners to put all of this on the table and to share this with their healthcare teams. But something that we always hear is that there wasn’t enough time allocated to even go there.
So that is a challenge for someone who wants to practice cultural humility but doesn’t have enough time to be able to do that. I would also add to that, that it’s giving, and I sort of mentioned this earlier, sort of giving enough room for their patients to feel comfortable to engage in shared decision making, for them to feel that they are co-decision makers and it’s the time for them to express what’s going on. And to even add more.
Another challenge is working in an environment that does not always promote cultural humility. So the healthcare professional might feel alone and feel that they’re practicing this on their own, and there are no other colleagues or no one else with them throughout this. One of the other things I would like to also add as a challenge is not being able to work as a group to identify some of the patient’s barriers that they’re facing and even providing helpful resources that could be meaningful to them.
Dr. Nicole Rochester:
Thank you. You’ve talked about a lot of these barriers that are really outside of the control of the provider. And so that brings me to my next question, which is really about the systems in which we provide care. What is the role of healthcare institutions supporting ongoing learning and environments that actually promote cultural humility so that providers can truly empower their patients?
Aïcha Diallo:
It’s really ensuring that patients and their families can access effective and equitable care regardless of who they are, where they’re from, what they look like, where they live. I think here at Patient Empowerment Network, we have several cultural humility resources for healthcare professionals, which include infographics that are embedded in the EPEP program and other resources that incredibly useful and important to them to access at their fingertips and be able to feel empowered themselves so they can continue to empower their patients.
We have added recently over a 100 languages to our website to make sure that our resources are available to anyone. And one of the last things that I would add as well is we continue to encourage healthcare professionals to share our PEN’s resources because by doing that, not only that the healthcare professional empowers themselves comes ready with information and comes humble with a step back and say, please share more.
But they’re also able to provide those resources and programs to their patients so they can access them so they could also feel empowered. So I would add, please continue to share our PEN’s resources. Make sure you include a lot of the tools and the tips that are useful for your patients regardless of what language they speak or where they live or again, where they’re from. So providing our digital literacy skill programs are also really important, our Digital Sherpa and Digitally Empowered, with your patients and families as it will provide them with some additional insight and a way for them to feel that they do have presence and they sit at the table to engage better with their healthcare teams.
Dr. Nicole Rochester:
Thank you so much. This has been such an enlightening discussion and lots and lots of resources that PEN provides. And thank you for all that you all are doing in this space. Aicha Diallo, vice President of Programs at Patient Empowerment Network, thank you so much for your wisdom and your insight.
Aïcha Diallo:
My absolute pleasure. Thank you so much for having me.
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Collaborate | Understanding Your Role in Your CLL Care
Collaborate | Understanding Your Role in Your CLL Care from Patient Empowerment Network on Vimeo.
How can chronic lymphocytic leukemia (CLL) patients actively engage in their care? This animated video shares tips and advice for being proactive, including participating in decisions and educating oneself about CLL.
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Transcript:
Dr. Johnson:
Hi! I’m Dr. Johnson, and I’m physician who specializes in blood cancers. And this is Joseph, who is living with chronic lymphocytic leukemia—CLL for short.
And in this series of videos, Joseph and I will discuss steps to help you learn about your diagnosis, understand your treatment options, and collaborate with your healthcare team on CLL care decisions.
Joseph:
And although it may sound simple, collaborating with your team isn’t always second nature.
When I was diagnosed with CLL, I was confused—not only about the disease itself but about MY role in making decisions about my care. I didn’t feel comfortable sharing my opinion or asking questions when I needed more details.
Dr. Johnson sensed my hesitancy and explained to me that educating myself about my CLL would allow me to feel more confident when participating in care decisions.
Dr. Johnson:
Right, Joseph. The first step to feeling comfortable talking with your doctor is to learn about your disease.
You can start with advocacy group websites that have educational resources, such as the Patient Empowerment Network. PEN covers all things CLL—from the basics for newly diagnosed patients to information about cutting-edge therapies.
Joseph:
That’s right! At the advice of Dr. Johnson, I downloaded their office visit planners to help me organize my thoughts and to take notes during my appointments.
Dr. Johnson:
And The Leukemia & Lymphoma Society is another credible place to start. The LLS provides both educational information AND support resources.
Joseph:
You can also ask your doctor for recommendations—or use your patient portal. The portal often contains patient education links and resources.
Dr. Johnson:
But keep in mind that the information you find online is never a substitute for medical advice. Be wary of sites that are opinion-based or focus on one patient’s individual experience.
You should always talk to your doctor about what you’ve learned to get your questions answered.
Joseph:
So true, Dr. Johnson. And once I felt I had a good understanding of CLL, I started to take proactive steps and to participate in my care. Here’s my advice to others:
- First, be sure to write down your questions and goals prior to your appointments. It’s often hard to remember things on the spot.
- Next, bring a loved one along to participate in your appointments and to take notes. It’s a good idea to discuss your takeaways after the visit, too. This will help you retain the information you heard.
- Also, try to get past your fears of “bothering your doctor”—be honest about how you are feeling. It’s especially important to mention any symptoms or side effects because this can have a direct impact on your care. Remember, your doctor can’t troubleshoot an issue unless you tell them what’s going on.
- And if you are taking these steps and still don’t feel like you are being heard—you should consider getting a second opinion or even changing doctors.
Dr. Johnson:
That’s great advice, Joseph—you should always feel like you are at the center of your care. We hope this video inspires you to collaborate in your care.
And, don’t forget to download the resource guide that goes with this video—it provides an overview of the information we covered.
Joseph:
You can also visit powerfulpatients.org/CLL to view more videos with Dr. Johnson and me. Thanks for joining us!
Dr. Michael Kelley: Why Is It Important for You to Empower Patients?
Dr. Michael Kelley: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.
Why is it important to empower patients? Expert Dr. Michael Kelley from Duke University School of Medicine discusses key concepts and communication methods that he utilizes with his patients to collaborate with them in their cancer care.
See More from Empowering Providers to Empower Patients (EPEP)
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Transcript:
Dr. Michael Kelley:
The key concepts that I try to work on in order to empower my patients is, one is to let them know that we’re a team, that I work for them, and that the information that I have, I want to make sure that they have. And any information that they have, like what symptoms they’re experiencing, or any tests that were done that I didn’t order, that all that information gets put together and we discuss that together as a team and make a plan to go forward so that there is access to all the information and there’s complete transparency and open lines of communication.
So that to me is the core of empowerment, is that, there is a conjoined team-like effort which is being exerted to the benefit of the patient and what the patient’s goals are. And the characteristics of that relationship are, as I said, are communication and information and mutual respect for each other so that when you work together you’re going to get a much better result than if you’re working separately.
Dr. Andrew Hantel: Why Is It Important for You to Empower Patients?
Dr. Andrew Hantel: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.
How does Dr. Andrew Hantel empower his patients in their treatment decisions? Dr. Hantel from Dana-Farber Cancer Institute and Harvard Medical School explains how he engages patients by understanding their personal values and the importance of making medical decisions in the context of their lives and communities.
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Dr. Krina Patel: Why Is It Important for You to Empower Patients? |
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Transcript:
Dr. Andrew Hantel:
I empower my patients by having conversations where I’m asking them a lot about who they are and who they are in the context of their loved ones and their community. Because I think that when I’m talking to people about treatment for their disease and any medical decision that we’re making, it has to be in the context of what’s important to them and not necessarily what the risks and benefits are in the medical ease sense, but what are the risks and benefits in terms of who that patient is and wants to continue to be.
And that can mean that people don’t want to spend time in the hospital, want to you know kind of live and continue to live healthy until a certain milestone and really want to push to do anything to make it to that. It can be that they, you know, really want to focus on spending time at home with their loved ones and not having to come back and forth to the hospital.
And I think a lot of the way that we talk to patients is to kind of fall back on data of risks and benefits and side effects, but not necessarily connected to who that person is or wants to be. And so I think it’s important that we continue to kind of center these decisions around the person and who they are kind of in their community and amongst their loved ones, so we can make choices that continue to be beneficial for kind of who they are as a person.
Dr. Krina Patel: Why Is It Important for You to Empower Patients?
Dr. Krina Patel: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.
Why is it important to empower patients in their care? Expert Dr. Krina Patel from The University of Texas MD Anderson Cancer Center discusses her approaches and how she engages with her patients through treatment, care, and survivorship.
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Dr. Samuel Cykert: Why Is It Important for You to Empower Patients? |
Dr. Eugene Manley: Why Is It Important for You to Empower Patients? |
Transcript:
Dr. Krina Patel:
So I think in myeloma, where our patients for the most part are not cured, they’re incurable and for the most part are on therapy lifelong. I think it’s really important that they have a community to go to, including their caregivers. There’s a lot of caregiver burnout that happens, patients, when they’re doing well or well, but when they relapse, it can be pretty dramatic and kind of take away everything again. And every time a patient’s relapsing, sometimes it feels hopeless.
And I think with all the therapies we have out there, this embarrassment of riches as we myeloma doctors like to say, we have to be able to get them through to have access to these drugs at the right time, make sure we decrease toxicity. But it’s a lot of information.
And I think for our patients, no matter how much time we spend with them, it’s just, it’s overwhelming. And I think it is for a lot of my colleagues who don’t just do myeloma all the time. I mean, it’s overwhelming for me half the time when I’m trying to see my patients and figuring out which is the next therapy. And so I really, at the first visit, talk to my patients about patient advocacy groups that are out there. And I even give them websites to go to.
At MD Anderson we’re trying to make videos for our patients so that while they’re waiting in the waiting rooms, they’ll have access to those, specifically, for CAR-T therapy and bispecifics. I think those are such great novel therapies, but they’re also high maintenance as I like to call them that there’s a lot of supportive care that’s needed for infection prophylaxis to make sure they don’t get secondary cancers, right?
All these complications that can happen, neurotoxicity, etcetera. And thankfully, for the most part, our patients do really well and they can get through it. But for those patients who end up with that, it’s really important they have this information, so they know when to contact us. And I think for my colleagues as well, we’re trying really hard to make sure we have better communication, for my patients that are in the community coming in for CAR T or for bispecific therapy, then going back to their doctors, their community doctors for the rest of their care.
So we have letters, that we come up with that we give to the patient as well as send to their doctor. We have phone numbers they can call that even if they’re back home, and they need to get ahold of someone that, they have a lifeline to say, I don’t know what to do. This is happening. And I think, it’s really important again for the patients and their caregivers to really understand, this is a lifelong journey, right?
This is not something that you’re just going to get a few cycles of treatment and then you go to survivorship clinic. And then hopefully we never have to treat again. And that this myeloma as of right now is still a continuous therapy and it could be, long periods of time between therapies. Or you might go on maintenance, for a long period of time before you need your next line of therapy, but this is a lifelong therapy that we’re going to have to do with, with everybody involved.
And I think, again, I can’t see every patient out there and most myeloma specialists can’t, but we’re happy to be a part of the team. And so really, when we can have access to things that the community might not, or be able to help in terms of, what combination is the best for this patient, and what dose reductions should we do for this specific patient?
Those are the things we would love to help our community doctors with to make sure outcomes for all our patients, those who are near us, but those who are also physically not close to us that we can still be able to help to make sure that they have the best efficacy, but also the best quality of life with this disease.
Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients?
Dr. Charlotte Gamble: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.
Why is it important to empower patients? Expert Dr. Charlotte Gamble from MedStar Health discusses the benefits of patient empowerment and methods she uses to help build trust and to empower her patients.
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Charise Gleason: Why Is It Important for You to Empower Patients? |
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Transcript:
Dr. Charlotte Gamble:
Yeah, this is such a good question and like actually, goes to the reason why I chose to have a career in medicine and like why I’m doing this. I think that it’s really important to understand that patients are their own individuals and not the tumor, they’re the cancer that they have, that they have whole lives and are whole people before they walk into our clinic doors. And to understand that there is a whole life that they have had and will continue to have alongside a cancer diagnosis.
And so one of the things that I think is so important is when I talk to patients to really understand the condition of their lives, to understand how long it took them to get to my office, to understand who is with them or who is not with them in the room to understand what their fears are, what experiences have they had with the healthcare system prior to meeting me.
How do I regain trust or earn trust, in the context of a healthcare system and a, you know, political system that is, pretty fraught. And I think being able to listen, is one of the greatest skills that I’ve been taught and have really tried to work on. And listening in and of itself I think helps to empower patients because they find their voice because either the doctor listening to them and asking them to tell me what’s happening.
And so the mere act of me listening, this is something that doctors need to do, that helps I think, patients find their voice. I think what I had mentioned previously also was making sure that they have people in their lives that are aware of what’s happening in terms of their cancer diagnosis and treatment plan that can be a support to patients.
I think getting these diagnoses can be traumatizing and recognizing the trauma that having a cancer diagnosis, can have, and the ripple effect that it has on not only the patients, but those that surround them is really important to recognize the gravity of that. And that while I might be seeing 20, 25 patients with cancer in my clinic or operating on three to four patients in a day, these are, really seminal moments in a person’s life. And recognizing the gravity and the responsibility that I have as their provider to not only listen to them, but make sure that they are surrounded by love and compassion, by people in their lives. And making sure that they feel that they have the language to share their diagnosis with their loved ones and to bring their loved ones on for the ride, is really important. So, I don’t know. I listen. I try to make sure that they’ve got folks that are there and present. And, I think that that’s really kind of how I try to center patients in this whole cancer care process.
Dr. Sikander Ailawadhi: Why Is It Important for You to Empower Patients?
Dr. Sikander Ailawadhi: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.
How can healthcare providers empower patients? Expert Dr. Sikander Ailawadhi from the Mayo Clinic explains the mindset and approach he takes to patient empowerment and questions that he asks patients to put them in better control of their care.
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Charise Gleason: Why Is It Important for You to Empower Patients? |
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Transcript:
Dr. Sikander Ailawadhi:
Patient empowerment is an extremely important aspect of how we deliver healthcare and how our patients consume healthcare. Let’s take a step back and think about it this way. A patient was diagnosed with cancer. This is not what they were expecting. This is not what their families, their loved ones, anybody was expecting. It throws a wrench in their life plans, and suddenly they have lost control, not over their health, in a lot of cases, even over their lives, over their families, their jobs, everything. What can we do to empower our patients and make them feel in control?
A statement that is very frequently used by a lot of people, frankly, is, well, the patients need to be their own advocates. Yeah, but I really strongly feel if a patient does not even know what to ask, how are they going to ask the right question? How do they know what is the right question to even put up to the clinician? So in my opinion, the biggest thing, in fact, in some ways, even the least thing I can do to empower my patients is to educate them, is to make them aware about the disease, about the treatment, both the benefits and the side effects, about long-term outcomes.
I do offer to my patients, for example, “Are you interested in knowing about prognosis?” Some patients don’t want to hear about it, but some were afraid to ask. If they know what they have to expect, they are able to plan better. They are able to get in control better. So for me, the number one way of empowering the patient is spending time with them, educating them, making them aware about their disease, about their treatment, and about the long-term expectations of living their life after the cancer diagnosis.
Dr. Sara Taveras Alam: Why Is It Important for You to Empower Patients?
Dr. Sara Taveras Alam: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.
How do care providers empower patients, and why is it important? Acute myeloid leukemia expert Dr. Sara Taveras Alam from UT Health Houston shares various methods she employs to empower patients in their care, cancer journeys, and ultimate decisions about the way they want to live with cancer.
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Charise Gleason: Why Is It Important for You to Empower Patients? |
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Transcript:
Dr. Sara Taveras Alam:
I empower my patients by explaining their disease at an elementary grade level, educating them on what to expect with treatments and keeping open lines of communication with them. I encourage my patients to share their journey with those who are close to them and to accept help. An extra set of ears may be helpful to recall conversations with physicians, and writing down questions in between visits can make sure that questions don’t go unanswered. I provide my patients with educational resources on their disease and do my best to explain the nuances of their treatment and what life with AML looks like.
I empower them to be their best advocate and ensure they know that they are the decision makers in this process, and we are here to guide and support them. Ultimately, it is their life, and they get to choose what is important to them. We should accommodate as best as we can. And sometimes that may be allowing them to postpone their next chemo cycle for a few days for a meaningful life event.
When things are rough, I empower patients by acknowledging their hardship and keeping alive the hope of cure unless that is no longer feasible. In the circumstances when controlling the disease is no longer feasible, I make every effort to accompany the patient in their concession of end of life care where there are no doubts about stones unturned, there is quality time with their loved ones, and there is peace of a life well-lived.
Dr. Emily Hinchcliff: Why Is It Important for You to Empower Patients?
Dr. Emily Hinchcliff: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.
How can patients be empowered? Gynecological oncologist Dr. Emily Hinchcliff from Northwestern Medicine shares the approaches she uses in her practice to help empower patients in their journey through care.
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Charise Gleason: Why Is It Important for You to Empower Patients? |
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Transcript:
Dr. Emily Hinchcliff:
So I empower my patients through education. I think that we as physicians, as providers, serve a really key role for patients in terms of serving as medical translators, in terms of helping our patients to ensure they understand the diagnoses that are facing them and their treatment options kind of for what the next steps in their care are.
So as a GYN oncologist, I really kind of weave that through my entire practice and every step of the way, I have the great privilege of caring for my patients from their diagnosis throughout their cancer journey. And so every step of the way, ensuring that they are educated about their disease and educated about their options, I think really allows us to build a powerful partnership and gives them the kind of ownership over their own cancer care.
Charise Gleason: Why Is It Important for You to Empower Patients?
Charise Gleason: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.
How can patients and families be empowered? Advanced practice professional Charise Gleason from Winship Cancer Institute discusses her perspective and communication methods that have shown benefits for her myeloma patients.
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Dr. Craig Cole: Why Is It Important for You to Empower Patients? |
Transcript:
Charise Gleason:
I think it’s important to empower our patients, and we do that from day one. Patient comes to us, we’re starting to develop that relationship. And the discussions that we have early on can be very different from later, but we have to continually reinforce, ask questions, give patients the opportunity to ask us questions. I know when I talk to a patient about a clinical trial, and I’m documenting, I put that back in, patient or family member or care partner was given the opportunity to ask questions.
Our clinics go very quickly, and you have to make the time for your patients. So you have that relationship, and they know that they can bring issues to you. Sometimes we don’t get it right either, and you’ve got to own that and move on to that next step. So you continue that relationship. Patients are going through losing control with having a cancer, and like myeloma and many times patients never even heard of multiple myeloma until they come into our world.
So it is an ongoing open communication, and we don’t make decisions for them. We give them options and upfront or early relapse, you may have far more options than you do in that relapsed/refractory setting. But you’ve got to know what’s important to your patient and what their goals are. And, are they still working? Our patients vary in age. But you want to think about where your patient is, what’s important to them, and you don’t know that unless you ask the questions and have that communication. Our patients are very savvy. We go to meetings. The first thing they want to know is what did you learn? Even when they’re doing well on their current treatment, they want to know what’s next. What’s out there for me if this stops working?
When we’re in that biochemical relapse phase where we don’t have to change treatment, we’re already having those conversations about what are those options next for you? And so I think that having that team approach, that open communication is really important for our patients and empowers them to make good decisions. As an advanced practice provider, it’s important for me to explain my role, right?
Patients will come to a practice, and sometimes they’re surprised that I don’t see the physician every time I come. So I think it’s instead of ignoring that and not telling patients, I think it’s important that we describe our roles in that care as well. That, yes, I also specialize in multiple myeloma. I collaborate with your physician. We talk about you, even if you’re not seeing your physician. And so I think that patient and family understanding the rest of the team and what we bring to the table for them is essential as well.
Dr. Jun Gong: Why Is It Important for You to Empower Patients?
Dr. Jun Gong: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.
Why is it important to empower patients? Expert Dr. Jun Gong from Cedar-Sinai Medical Center shares his perspective on how empowering patients impacts them and specific ways he improves his gastric patient care.
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Dr. Isaac Powell: Why Is It Important for You to Empower Patients? |
Transcript:
Dr. Jun Gong:
So empowering patients is very important because we can only do so much from our side in terms of we have treatments to offer, we have prescriptions to provide, we have diagnostics we can do to work up certain maladies and illnesses. However, I think what we don’t grasp is how much happens at home. The majority of the time is the patient at home with their caregiver, with their family members? And here, I think it’s a very important pillar of treatment where not only is one pillar just from the oncologist side and from the doctor’s and all the healthcare providers’ side, the other pillar is what happens at home.
And this is where I think empowering patients is very important. This is where empowering them to control what foods they eat, what foods have been known to be risk factors for stomach cancer or any kind of cancer.
What foods to focus on, to building nutrition, to be able to tolerate chemotherapy or cancer treatment, to be able to boost your immune system. These are important aspects that are controlled really at the patient level and the family level. The other way to empower patients is activity. We often say it that, mother knows best. If you don’t use it, you’re going to lose it. And so debilitation is a big problem in our cancer patients as well.
So ways to promote activity, whether it’s just a walk, a daily walk outside the neighborhood, or even to more strenuous types of cardiac exercises. And here we actually have newer resources available in our physical rehab colleagues. Our cancer nutritionists are excellent resources as well. And these are just aspects of empowering patients on what they can do at home. Because I often find patients and family members ask, what else could we be doing beyond what we are prescribing in the clinic and what we’re doing in the hospital or the medical care setting?
The other aspect is to empower patients to know that it is appropriate, always appropriate to seek more than another opinion on your treatment plan. And we have a really, really close relationship from both the academic to the community level where we’re more than happy to review clinical trials, provide second opinions. Here is a very important part that we recognize that we are not here to, let’s just say, have patients stay with us for treatment. We envision a relationship where if a trial is not available, our recommendations should be to deliver these recommendations to the community provider so that they can provide day-to-day care because their care is just as excellent and they have just the same access to standard of care. We are here for a mutual relationship and partnership. It is not a one-way street, and it’s not definitely a black hole where if you refer patients to a larger academic center, are you worried that you won’t hear from the patient or from the provider? We always make it a close goal to have timely feedback to our referring partners. And this is just some of the few ways that I believe it’s important to empower your patients.
Dr. Beth Faiman: Why Is It Important for You to Empower Patients?
Dr. Beth Faiman: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.
How can patients be empowered, and why is it an important part of their care? Dr. Beth Faiman from Taussig Cancer Institute shares three key elements that comprise her view of patient empowerment.
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Dr. Isaac Powell: Why Is It Important for You to Empower Patients? |
Transcript:
Dr. Faiman:
I think as an advanced practice provider, I consider about three key elements of patient empowerment to include information, access, and engagement. So those three things really resonate with me through shared decision-making. So first of all, the patients need to possess the knowledge that they need to make informed decisions about their health? What is their health status remission? What are their future therapeutic options? Are there clinical trials available? And what’s the best treatment for them?
And I share this information with the caregiver and the patient as well. Access is also an important role, and important thing for a patient, access to medications. Sometimes there’s co-pay assistance that we need to gain as nurses, advanced practice providers, and physicians to get patients what they need whether it’s a pill or a shot. And then finally, I did mention that shared decision-making process. And that’s where the patients are really engaged.
So I like to mutually share information between the patient caregiver and the clinical team, so we’re sharing information back and forth. We can identify what their goals of care are, and we can make decisions about their health that lessen the risk of decisional regret. Again, make them feel comfortable about the decisions they’re making. And so by these little strategies, I really thinking empowering the patients to take hold of their own health is a way that we can all mutually feel successful in their care.
