Tag Archive for: CLL Society
Empowering Providers to Enhance CLL Patient Care
Empowering patients is at the core of efforts at Patient Empowerment Network (PEN), and work toward reducing health disparities is part of conversations among healthcare professionals. With this in mind, PEN has taken on a new initiative for chronic lymphocytic leukemia (CLL), the Empowering CLL Providers to Empower Patients (EPEP) initiative. The program multiplies PEN’s reach to healthcare professionals with the aim to improve physician-patient communication; shared decision-making; and the role that CLL patients, survivors, care partners, and healthcare professionals each play in the shared decision-making process.
The EPEP CLL initiative includes the following resources:
- Needs Assessment outlines key factors that enable patient empowerment, attributes of an empowered patient, and advice for healthcare professionals to perform a needs assessment for each patient.
- EPEP Roundtables with CLL experts Dr. Jennifer Brown, Dr. Callie Coombs, Dr. Daniel Ermann, and Dr. Andres Chang as they discuss a range of topics including how to help your CLL patients play an active role in managing their care, healthcare provider recommended strategies for managing disease burden, the importance of advanced practice clinicians on the CLL health care team, and ins and outs of clinical trials and communication about clinical trials.
- EPEP Resources includes the resource guide, infographics, blog, and other resources to improve patient care.
- EPEP Peer Insights with PEN’s Vice President of Programs Aïcha Diallo breaks down the differences between cultural competence versus cultural humility and barriers that HCPs may encounter and ways to overcome cultural humility barriers.
- EPEP Portal utilizes PEN’s robust resource library and that of numerous trusted advocacy partners to create a vetted list of patient education resources. PEN delivers a curated PDF according to your interests and delivers it efficiently to your inbox.
Key Takeaways for CLL Patient Care
PEN had the opportunity to interview CLL experts Dr. Jennifer Brown from Dana-Farber Cancer Institute, Dr. Callie Coombs from the University of California, Irvine, Dr. Daniel Ermann from Huntsman Cancer Institute, and Dr. Andres Chang from Emory University School of Medicine to learn about some of their expertise. They shared their views about essential ways that they work with patients to help empower them and to educate them about CLL mutations and side effect management.
A team-based approach is the ideal model for taking optimal care of CLL patients. Dr. Callie Coombs stressed the key roles that pharmacists, oncology nurses, and nurse practitioners play in CLL patient care. “…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.”
The advances in CLL treatment have expanded tremendously over the past several years leading to refined treatments. Expert Dr. Callie Coombs shared her perspective about how patient care has changed. “…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.”
Switching treatments can be an effective method for resolving side effects in some patients. Dr. Callie Coombs discussed some changes she’s seen in some of her patients. “…I’ve had patients with chronic long-standing toxicities to ibrutinib (Imbruvica) that perhaps went underrecognized where I say, ‘Hey, I’ve notice 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.”
CLL Mutations and Side Effect Management
Although CLL is not defined by any specific mutation, CLL care providers see a large number of different mutations at low percentages. Dr. Jennifer Brown discussed how mutations can come into play with CLL treatment. “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.”
TP53 aberrations are especially vital in relation to chemotherapy. Dr. Callie Coombs explained the impact of these specific mutations. “…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.”
Warning CLL patients ahead of time about common treatment side effects is recommended to help prepare them for treatment. Dr. Jennifer Brown explained some common side effects with her patients. “…headaches often happen early on when you initiate acalabrutinib (Calquence) 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.”
Dose adjustments to CLL treatment may prove to be a highly effective method of side effect management for some patients. Dr. Daniel Ermann shared his perspective about dose adjustments. “…I think dose reduction can make a big difference in the side effect profiles of these medications. I’ve seen reduced bleeding, for example, reduced rates of atrial fibrillation. With BCL-2 inhibitors, I’ve seen reduced rates of neutropenia, for example. And I’ll just say from my experience, I haven’t seen too much compromise in efficacy. So I think I would recommend for providers when you’re thinking about dose reduction, it’s really a balance of toxicity and efficacy. And I think with just how good our treatments are for CLL these days, I try to reduce toxicity. And I think in that way, it does maximize their efficacy.”
Dr. Andres Chang also shared his perspective on dose escalation and dose reduction in CLL patient care. “…whether to dose-escalate or dose-reduce really depends on the treatment we’re talking about. For new therapies like BCL-2 inhibitors such as venetoclax (Venclexta), we do dose escalation at the beginning of therapy to mitigate potential side effects such as tumor lysis syndrome, whereas in most of the other scenarios we will try to do dose reductions in order to mitigate adverse events.”
Even though CLL treatments have shown increases in the number and complexity of treatment options, vital HCP best practices can help further expansion in empowering CLL patients. How do we improve care of patients? And how do we work with dose adjustments and side effect management in patient care? We hope healthcare providers can take advantage of these timely resources of the EPEP initiative to work toward optimal and equitable treatment for all CLL patients.
How Can CLL Patients and Providers Be Empowered for the Best Care?
How Can CLL Patients and Providers Be Empowered for the Best Care? from Patient Empowerment Network on Vimeo.
Experts Dr. Andres Chang from Emory University and Dr. Daniel Ermann from Huntsman Cancer Institute highlight the importance of educating patients about their disease, treatment options, and potential side effects, while emphasizing the value of a collaborative medical team.
Download Resource Guide | Descargar guía de recursos
Related Resources:
The Role of Patient Education in Managing Treatment-Related Side Effects in CLL |
Innovative Strategies for Healthcare Provider Education on Side Effect Management in CLL |
|
Transcript:
Dr. Nicole Rochester:
I’d love to get closing thoughts from each of you. And I’ll start with you, Dr. Chang. What is the most important takeaway that you want to leave with those healthcare providers who are listening and watching this program?
Dr. Andres Chang:
Yeah, I think that the most important takeaways are actually two things, I think. One is really, really important to educate patients about their disease, about their treatment, about the potential side effects, and also to try to anticipate and mitigate those potential side effects so that patients know exactly what they’re expecting.
And then the second thing is really essential to have a great team around you because practicing medicine, particularly oncology, is not a solo practice. We really need a village to take care of our patients. And so having well-trained nurses, having excellent clinical pharmacists, all of them are essential members of the team that will help with patient care.
Dr. Nicole Rochester:
Wonderful, Dr. Chang. Thank you. And, Dr. Ermann, what are some closing thoughts you’d like to leave with our audience today?
Dr. Daniel Ermann:
I would say don’t be afraid. In medicine, there’s often this thought that reducing treatment doses or things like that is a bad thing and you shouldn’t do it. I would say I would empower providers to not be afraid to dose-reduce, especially to mitigate very undesirable toxicities. So I’d say don’t be afraid to dose-reduce. There’s a lot of, at least in some of our medications, good efficacy data showing that dose reductions can have similar, if not the same, efficacy profile while mitigating toxicity. So I would say don’t be afraid to dose reduce, especially if the toxicities are not improving. Don’t be afraid to dose-hold.
And when it comes to empowering our patients more, I’m a big advocate on empowering patients. Particularly diseases like CLL, where two-thirds of patients at diagnosis don’t require treatment, and they’re told that they have cancer, and then all of a sudden they’re told that they don’t need treatment can be very scary. And I think that’s when patients feel like they have their disease understood and that they’re doing the best that they can for their own disease, it makes it better for everyone involved.
So I think empowering both providers and patients is kind of the optimal way to do things. And those are the best patients. When you deal with someone who knows their cancer, knows what’s going on, sometimes I get patients they know as much or more than me and I’m like, wow, this is incredible. Those are the best.
Dr. Nicole Rochester:
That is such a perfect way to end this program. An empowered patient is the best patient.
Share Your Feedback
HCP Roundtable: Fine-Tuning CLL Dose Modification and Side Effect Management Strategies
HCP Roundtable: Fine-Tuning CLL Dose Modification and Side Effect Management Strategies from Patient Empowerment Network on Vimeo.
What is the rationale and evidence behind dose optimization approaches in CLL treatment? What role does patient education play in recognizing and managing CLL treatment-related side effects? Dr. Andres Chang of Emory Healthcare and Dr. Daniel Ermann of Huntsman Cancer Institute discuss optimizing CLL care and the importance of empowering your CLL patients during their treatment journey.
Download Resource Guide | Descargar guía de recursos
Related Resources:
How Can CLL HCPs Gain More Understanding of Mutation Profiles? |
CLL Expert Updates on Diagnostic Tool and Technology Advances |
|
Transcript:
Dr. Nicole Rochester:
Welcome to this Empowering Providers to Empower Patients (EPEP) program. I’m your host, Dr. Nicole Rochester. EPEP is a Patient Empowerment Network program that serves as a secure space for health care providers to learn techniques for improving physician-patient communication and overcome practice barriers. In this CLL roundtable, we are exploring fine-tuning CLL dose modification and side effect management strategies.
As the chronic lymphocytic leukemia treatment landscape evolves, we’re going to talk about the rationale and evidence behind dose optimization approaches in CLL treatment for those who may need therapy. We’ll also discuss strategies for dose modifications to mitigate adverse events while maintaining treatment efficacy, as well as approaches that are transforming CLL side effect management.
It is my honor and privilege to be joined by Dr. Andres Chang, Instructor in the Department of Hematology and Medical Oncology at Emory University School of Medicine. Dr. Chang specializes in treating patients with hematological malignancies including leukemia and lymphoma. Thank you so much for joining us, Dr. Chang.
Dr. Andres Chang:
Thank you so much for having me.
Dr. Nicole Rochester:
It is also my pleasure to be joined by Dr. Daniel Ermann, Assistant Professor in the Division of Hematology and Hematologic Malignancies at the Huntsman Cancer Institute. Dr. Ermann specializes in the treatment of patients with chronic lymphocytic leukemia and other forms of Hodgkin’s and non-Hodgkin’s lymphoma, and he is passionate about working towards a cure. Thank you so much for joining us, Dr. Ermann.
Dr. Daniel Ermann:
Great to be here. Thank you so much for having me.
Dr. Nicole Rochester:
So let’s start the conversation with dose modification, and I’m going to start with you, Dr. Chang. As the treatment landscape evolves for CLL, for some patient populations that need therapy, what is the rationale and evidence behind both dose escalation and dose reduction?
Dr. Andres Chang:
Well, so I think that the question of whether to dose-escalate or dose-reduce really depends on the treatment we’re talking about. For new therapies like BCL-2 inhibitors such as venetoclax (Venclexta), we do dose escalation at the beginning of therapy to mitigate potential side effects such as tumor lysis syndrome, whereas in most of the other scenarios we will try to do dose reductions in order to mitigate adverse events.
In all of these patients and in all of these cases, we do take into account the patient’s comorbidities. In the case of venetoclax, for instance, we think of whether patients have kidney dysfunction, and in the case of BTK inhibitors whether they have concomitant heart disease, hypertension, whether they are on anticoagulation, and also we take into account what other medications they have, in particular whether they have medications that affect their cytochrome P450 system.
Dr. Nicole Rochester:
Awesome. Thank you so much, Dr. Chang. Is there anything specific that you think healthcare providers need to know with regard to dose escalation and dose reduction?
Dr. Andres Chang:
So dose escalation in terms of venetoclax initiation is, we already have a pretty well-established protocol that is on the label of the medication, and this is really mainly to mitigate the risk of tumor lysis syndrome. And in terms of dose reduction, I think it really depends again on which therapy we are talking about and also on which particular side effect we’re talking about. And so I really encourage all the providers to really inquire and look into what potential side effects the patient might have so that you can adequately address this, because each side effect can be addressed or should be addressed with a different kind of strategy.
Dr. Nicole Rochester:
Wonderful. Thank you, Dr. Chang. Dr. Ermann, I’m going to come to you. How do CLL healthcare providers better understand dosing, particularly with the emergence of novel CLL therapies?
Dr. Daniel Ermann:
Yeah. Thank you so much for the question. So I think nowadays, most of us in the CLL community, we’re really no longer using chemotherapy. We’re using, like Dr. Chang said, we’re sticking to these novel agents, BCL-2 inhibitors, BTK inhibitors in the frontline setting. All of these medications have been studied to the optimal dose in their respective trials. And for the most part, we start every patient, except for the venetoclax ramp-up, we start all patients at the optimal dose for what we think for them is the maximum tolerated dose in the studies, which is the dose seen in the FDA package inserts and the recommended starting dose.
So I think for most patients, generally we start at what dose that is recommended. And then the only time we really begin to dose-reduce is as Dr. Chang mentioned, if we’re seeing side effects or intolerance. So these are things that I always start looking at very early when I start patients on treatments. I check in with my patients within the first two weeks of them starting a BTK inhibitor. And then during the venetoclax ramp-up with BCL-2 inhibitors, I keep a very close eye on them.
So I think though these novel therapies are extremely effective at treating CLL, they do come with some toxicities. And it’s important to be aware of the toxicities, to keep an eye on the patients when you start them and know what the dose reductions are and how to effectively manage them.
Dr. Nicole Rochester:
Thank you, Dr. Ermann. And I just want to acknowledge and thank both of you for highlighting the importance of partnering with patients, particularly in an Empowering Providers to Empower Patients program. We understand that this is a partnership between the healthcare providers and the patients. And so I appreciate both of you really highlighting the importance of engaging with the patients and then making necessary adjustments.
So, Dr. Chang, can you speak to any unforeseen or outdated practice-related barriers that may actually hinder your work and that of your colleagues as it relates to understanding CLL dosing?
Dr. Andres Chang:
Yeah, even though most of us in the CLL community have already moved to these novel targeted therapies, we do occasionally still see patients are referred to our centers who have undergone frontline chemo-immunotherapy, which for the vast majority of the patients nowadays, there really shouldn’t be an indication for that sort of treatment anymore. And so I think one of the main limitations is that we are using or at least some providers are using frontline chemo-immunotherapy and by doing so, they negate the great benefits that these novel targeted therapies have, particularly again in frontline setting.
Other unforeseen or outdated practices might be related to how patients, how we optimally mitigate the tumor lysis risks. And also occasionally, we might see some referrals from community practice physicians with patients who have CLL, and they have recurrent cytopenias or persistent cytopenias while in therapy, and they attribute it to toxicity of the therapy. Where in reality, if you do a bone marrow biopsy, they might be having a lot in the bone marrow, and that might be the answer for this particular so-called toxicity, but in reality it’s actually disease progression.
Dr. Nicole Rochester:
Thank you, Dr. Chang. So, Dr. Ermann, based on what Dr. Chang just shared and some of these, sounds like maybe knowledge or practice gaps, what are some solutions? How can we begin to bridge these gaps so that patients are receiving the best of the best with regard to therapy?
Dr. Daniel Ermann:
So there’s a little bit of, I would say that there can be a little bit of delay in certain providers changing their practice to the current academic approach. I think that from what I’ve seen, the best way to manage it is when patients are seen in the community by providers, I personally have quite a good relationship with many community providers in the community setting. And I encourage those providers if they get a new patient diagnosed with CLL, to recommend a CLL consultation.
And I would advocate that the patients also look into their disease and see whether or not a CLL consultation with an expert in the field of lymphoma or CLL may be good for them. And in those ways I’ve seen, personally I co-manage many patients across the Western United States. They’re still able to be seen by their local oncologist and also be seen for consideration of clinical trials in the CLL space when indicated for their more rare disease.
So I do think it comes from both providers and patients, but I think empowering your patients, letting them know that there are other doctors who may specialize in a condition that they have is really important. And when patients do that, not only are they happy, their local oncologist is happy. It makes it kind of better for everyone.
Dr. Nicole Rochester:
Absolutely. Thank you, Dr. Ermann. I love that idea of a team-based approach. Thank you so much. Well, let’s move into talking about side effects. And you all have already alluded to the importance of dose modification with regard to side effects and minimizing toxicity. So I’m going to go to you, Dr. Ermann. What techniques do you use in your practice for optimizing treatment efficacy while minimizing toxicity? And feel free, if you’d like, to share a specific example.
Dr. Daniel Ermann:
Yeah. Great question. So in CLL, there are a lot of unique toxicities with our CLL-directed therapies. I’ll take, for example, BTK inhibitors. So BTK inhibitors have certain off-target effects. The way these medications work is they turn off BTK, and that’s like flipping a switch that decreases the growth of the CLL cells and eventually causes them to die. However, some of the unique toxicities we see are things like atrial fibrillation, bleeding, bruising, infections, to name a few.
So, for example, you would like to start a patient optimally on the maximum dose, which is the kind of recommended starting dose. However, let’s say a patient gets a side effect such as bleeding or atrial fibrillation, I usually will follow the package insert pretty closely. In most cases, the recommended management is to hold the drug until a side effect resolves and then resume at the same dose. In my practice, I found that with many of our novel therapies, there are some cases where you can continue the same dose, but oftentimes you’ll need to dose-reduce.
And I will say from my personal experience, I think dose reduction can make a big difference in the side effect profiles of these medications. I’ve seen reduced bleeding, for example, reduced rates of atrial fibrillation. With BCL-2 inhibitors, I’ve seen reduced rates of neutropenia, for example. And I’ll just say from my experience, I haven’t seen too much compromise in efficacy. So I think I would recommend for providers when you’re thinking about dose reduction, it’s really a balance of toxicity and efficacy. And I think with just how good our treatments are for CLL these days, I try to reduce toxicity. And I think in that way, it does maximize their efficacy.
Dr. Nicole Rochester:
Thank you, Dr. Ermann. What about you, Dr. Chang? How do you approach dose adjustments for CLL patients, particularly those who may be experiencing severe side effects? And what factors influence your decision-making process?
Dr. Andres Chang:
Yeah, so first of all, I agree with Dr. Ermann that I think trying to mitigate side effects and oftentimes following the package insert is really, really helpful. One of the things that I want to add, though, is I do spend quite a bit of time before starting any medication, educating patients and trying to teach them about what potential side effects, what to look for. And importantly, if there are mechanisms to mitigate or prevent those side effects, I will spend quite a bit of time talking about that. And these can be things such as taking caffeine to prevent an acalabrutinib-induced (Calquence) headaches, for example, maintaining adequate fluid intake and hydration to minimize the risk of tumor lysis, and so forth.
I find that by spending that time with patients ahead of starting therapy, that oftentimes it allows patients to identify the side effect and also start addressing it even before needing to come back to the clinic. My team, in addition to myself, also spends quite a bit of time, and we perform phone calls, follow-up phone calls, and things like that, that are conducted by my pharmacist or by my nurse. And together, I find that oftentimes just by talking through these potential issues, patients will feel a lot better.
Now, depending on how severe an adverse event is, or a side effect is, I tend to potentially dose-reduce somewhat quicker. Or if there’s an alternative, like in the case of BTK inhibitors, I will be a little bit more prone to switching from one BTK inhibitor to another, because there is data suggesting that if you don’t tolerate one BTK inhibitor, you can tolerate a second one.
And that’s particularly true if we are seeing some of these side effects that arise in the long term, particularly with ibrutinib (Imbruvica), and switching them to acalabrutinib or zanubrutinib (Brukinsa), oftentimes resolve those kinds of side effects. And I’ve seen that particularly true in cases where I see hypertension induced by ibrutinib (Imbruvica). I have a couple of patients where they are four or five years into ibrutinib therapy, came in with uncontrolled hypertension, I switched them to another BTK inhibitor, and the hypertension gets better controlled.
Dr. Nicole Rochester:
Thank you, Dr. Chang. I just really appreciate again how both of you are continuing to highlight the importance of a multidisciplinary team. So the importance of involving the patients, educating the patients, both ahead of time and as you’re beginning treatment. And also, you mentioned bringing in the pharmacists and bringing in your nurses and all of the other members of the support team. So I really, I really appreciate that. And speaking of patient education, Dr. Ermann, I’d love for you to share if you can have any ideas around the role that patient education plays in recognizing and managing treatment-related side effects.
Dr. Daniel Ermann:
Yeah, absolutely. So I’m a big advocate on educating patients, and I completely agree with what Dr. Chang mentioned. I think prevention is the key. I think the more work you can do up front to improve the outcomes down the road, the better. So in my experience, what I do for my patients in the clinic when it comes to education is I actually, I do quite a bit of, quite a few things. So I not only do I myself personally educate the patient on the drug, I also have my pharmacist meet with the patient either in person or over the phone depending on where things are at. I also print out handouts, because occasionally we hear a lot of things and as patients, sometimes it can be overwhelming, even as doctors, it can be overwhelming hearing a lot of things at once.
So I like to print things out for my patients, whether it be from UpToDate pages, whether it be from things like the websites that have drug information like Chemocare, etcetera etcetera. And I also utilize kind of these free sheets that you can find throughout…from many different organizations such as, like Lymphoma Research Foundation or others that have drug information, safety information.
And then I also recommend them easy ways to contact us, whether it be through like a messaging app or calling our office with questions. I think that educating your patients on what to expect with these drugs is really important. Fortunately in CLL, a lot of our medications, though there are some unique toxicities, are overwhelmingly much better tolerated than many other therapies for other cancers. So that is one good thing. So you want to give them enough information, but you don’t want to scare them to thinking that they’re going to have the worst of every situation, but I think it’s very important, especially up front, and then most patients will see how different drugs affect them.
Dr. Nicole Rochester:
Thank you, Dr. Ermann. I love that you’re offering multiple different ways, because like you said, some people may be auditory learners. Many of the patients, when they’re hearing this information for the first time, as you alluded to, they’re going to be overwhelmed. They’re not going to remember. So I love the idea of also leaving them with something in writing that they can refer to later. What about you, Dr. Chang? You’ve been doing this for a while now. Are there any specific strategies or something that works really well for you, a particular tactic as it relates to educating your patients about side effects?
Dr. Andres Chang:
Yeah, I couldn’t agree more with Dr. Ermann. I spend quite a bit of time, again, speaking directly to my patients, having my team speak to my patients, and I follow many of the similar strategies that Dr. Ermann has already mentioned. In particular, places like Leukemia & Lymphoma Society, Leukemia Lymphoma Research Foundation, the CLL Society, all those societies have a wealth of information about the different treatments and approaches that we normally use for CLL. And I find it very useful that as part of our discharge paperwork from clinic, we do include links to those societies so that they can find additional information.
And aside from that, I think once you have a good rapport with a patient and your team has a good rapport with a patient, as long as there’s good communication either through the patient portal, through phone calls, through return visits, I find that once patients are very well-educated, then they are actually very comfortable starting therapy and pretty much know exactly what to expect at each step in the therapy. Whether it is a dose escalation week for venetoclax, for example, or what happens when we have to hold a medication for a procedure, when to restart, and those sorts of things.
Dr. Nicole Rochester:
Wonderful. Thank you both. Well, we’ve talked about the importance of educating patients. We’re going to circle back to our healthcare providers. And, Dr. Chang, I’m going to stay with you for a moment. Can you share any successful strategies for healthcare provider to healthcare provider education, any innovative approaches with regard to side effect management in CLL?
Dr. Andres Chang:
Yeah, I think that as important as educating patients, educating other healthcare providers is as critical. And as such, I think one of the missions that we have at academic institutions is that we should also offer some educational aspect to our consultant physicians across the community or nurse practitioners or nursing staff.
And so one of the things that I commonly do is that my notes tend to have a couple of paragraphs that explain my rationale behind the recommendations with sources, primary sources of information if they want to look up any particular data where I’m basing my decision on. And that happens both in terms of picking this treatment versus this other treatment, what is the efficacy data, but also for side effect and adverse events data.
I also, as part of the Winship Cancer Institute, we have a big outreach program to our community. And I’m sure Dr. Ermann has [this] too over at Utah, where we have outreach programs and reach out to other community oncologists, trying to give them information about the newest and latest therapies. We do symposia. And we also have an app where community oncologists can actually look us up directly and give us a call or something that, in case they run into problems.
And then we are happy to talk to them and help guide the management of their particular patients. I find that this kind of verbal communication and live direct provider-to-provider contact has been very useful. And I think that the community oncologists have really appreciated that.
Dr. Nicole Rochester:
I’m sure that they do. That is amazing. That’s awesome. What about you, Dr. Ermann? Do you have anything to add in terms of what you all are doing at your institution to communicate with other healthcare providers?
Dr. Daniel Ermann:
I just have to say Dr. Chang and I were on the same page. I completely agree with everything he said. I think that he is…it’s we’re super imposable at this point. I do the exact same things as he does, which is great, I think. I think that that’s fantastic. A couple other things I would just say as well is that I agree 100 percent. Communication is the biggest thing. Communication is not only one of the most important things, but it also can be a big barrier. So I think fostering communication between, a lot of what I do is deal with local oncologists as the academics. So I may only see patients a couple times a year, whereas the local oncologist may see them a couple times a month.
And so having an open line of communication, whether it be cell phone, like occasionally I’ll be texting local providers, calling them, having their phone number is very helpful, emailing back and forth. And then after I see patients, similar to Dr. Chang, I document well in my notes. And I also have my team send the note to them through fax or other means. So things like that, I think are very valuable and important and I think are game-changers when it comes to excellent patient care, because the communication barrier can sometimes be one of the biggest ones.
Dr. Nicole Rochester:
Absolutely. Thank you for that. Before we wrap up, we know that social media is often leveraged in healthcare among providers. And I think you mentioned, Dr. Chang, an app. So are there any other digital tools or are there ways that either of you leverage social media in order to manage side effects, either with education to providers or to patients? And, Dr. Ermann, I’ll start with you on this one.
Dr. Daniel Ermann:
Sure. So social media is a tricky one, because not everyone uses it. Also in CLL in particular, our median patient age is around 70 years of age, and not too many of my 70-year-old patients are on, but they can be. So I think as a provider, there are a couple of things. I’ll be honest, Twitter is actually, can be a great resource. If you follow certain providers in the field, you’ll get some updated information before anyone else, including especially during our annual ASH meeting, there’s an ASH app. And if you could attend the meeting, you’ll see that most updated data. And you can see that on Twitter and/or X as well. Other than that, we also have a Huntsman app similar to Emory. But I think that that’s about as far as social media goes for me. What about you, Dr. Chang?
Dr. Andres Chang:
I agree with Dr. Ermann that places like X and LinkedIn, if you follow the right people, you can get very useful information. And I think that that’s particularly true for people within the academic community and healthcare providers. But for patients per se, I think that this could be a little bit more tricky. And so I try to steer them away from that, in fact, and I try to kind of keep them within the main resources.
And if they have any questions or they have…or they’re confused about something, I always tell them, feel free to send me a message, and we’re happy to discuss whatever you read. And so I find that patients really appreciate the openness of discussing data because sometimes the data might be not very accurate. And by having that trust, they find it comfortable talking about things that might not be as conventional as we might think so.
Dr. Nicole Rochester:
Wonderful. Fully understood. There are certainly some risks associated with getting information from social media. So I appreciate you all providing that balance. Well, it’s time to wrap up our roundtable. And, as always, this has been an incredibly enlightening conversation. So as we close, I’d love to get closing thoughts from each of you. And I’ll start with you, Dr. Chang. What is the most important takeaway that you want to leave with those healthcare providers who are listening and watching this program?
Dr. Andres Chang:
Yeah, I think that the most important takeaways are actually two things, I think. One is really, really important to educate patients about their disease, about their treatment, about the potential side effects, and also to try to anticipate and mitigate those potential side effects so that patients know exactly what they’re expecting.
And then the second thing is really essential to have a great team around you because practicing medicine, particularly oncology, is not a solo practice. We really need a village to take care of our patients. And so having well-trained nurses, having excellent clinical pharmacists, all of them are essential members of the team that will help with patient care.
Dr. Nicole Rochester:
Wonderful, Dr. Chang. Thank you. And, Dr. Ermann, what are some closing thoughts you’d like to leave with our audience today?
Dr. Daniel Ermann:
I would say is that I would say don’t be afraid. In medicine, there’s often this thought that reducing treatment doses or things like that is a bad thing and you shouldn’t do it. I would say I would empower providers to not be afraid to dose-reduce, especially to mitigate very undesirable toxicities. So I’d say don’t be afraid to dose-reduce. There’s a lot of, at least in some of our medications, good efficacy data showing that dose reductions can have similar, if not the same, efficacy profile while mitigating toxicity. So I would say don’t be afraid to dose reduce, especially if the toxicities are not improving. Don’t be afraid to dose-hold.
And when it comes to empowering our patients more, I’m a big advocate on empowering patients. Particularly diseases like CLL, where two-thirds of patients at diagnosis don’t require treatment, and they’re told that they have cancer, and then all of a sudden they’re told that they don’t need treatment can be very scary. And I think that’s when patients feel like they have their disease understood and that they’re doing the best that they can for their own disease, it makes it better for everyone involved.
So I think empowering both providers and patients is kind of the optimal way to do things. And those are the best patients. When you deal with someone who knows their cancer, knows what’s going on, sometimes I get patients they know as much or more than me and I’m like, wow, this is incredible. Those are the best.
Dr. Nicole Rochester:
That is such a perfect way to end this program. An empowered patient is the best patient. Thank you so much, Dr. Chang. Thank you so much, Dr. Ermann, for this amazing discussion about managing side effects and managing dose modifications and educating patients and educating providers with regard to CLL. Thank you again for tuning in to this Empowering Providers to Empower Patients, Patient Empowerment Network Program. I’m Dr. Nicole Rochester. Have an amazing day.
Share Your Feedback
Dr. Daniel Ermann: Why Is It Important for You to Empower Patients?
Dr. Daniel Ermann: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.
What are some methods to empower patients? CLL expert Dr. Daniel Ermann from Huntsman Cancer Institute discusses information that he explains to patients, resources for patients, and how patient empowerment changes their role in their care.
See More from Empowering Providers to Empower Patients (EPEP)
Related Resources:
|
Dr. Jennifer Brown: Why Is It Important for You to Empower Patients? |
Dr. Andres Chang: Why Is It Important for You to Empower Patients? |
Transcript:
Dr. Daniel Ermann:
I think empowering patients is, especially with CLL, the most important thing you can do. And I like to do it starting at our very first meeting. So what I do is when I first discuss about their disease, about having CLL, I talk about the very basics. So I like to start with the very basics. What is CLL? What is this disease? How does it work? And over time, I get more and more complex in this discussion with them. And I like to provide them with as much information as possible. So information on how does the disease manage, it’s incurable, what does that mean? Where do we go from whether or not to treat or not treat? If you’re not treating, what other things can you do to optimize their health and well-being?
And I find that starting from the very basics and describing everything in detail, going through all the scenarios with patients and giving them the most up-to-date information on not only the disease, but actually the management strategies is very empowering. They seem to like to take some ownership of their disease. And I give them different resources that they can do that with. And whether that be online resources, the CLL Society, for example, whether it be patient advocacy groups, there are some CLL-specific advocacy groups where our patients will meet outside of a healthcare setting and they’ll meet just CLL patients alone and discuss what’s going on in the field, what’s new in CLL.
And actually they’ll sometimes invite physicians to be guest speakers. And I’m very big in empowering patients to do that and to feel like they have some control over these very scary diseases. I think it’s important because this is an incurable cancer. It’s going to be something that they live with for the rest of their life. And feeling like they have some sort of control and understanding of the disease, is very powerful. I think that having this knowledge base, feeling like they have some information on their disease and be able to take it into their own hands improves their quality of life and improves their kind of knowledge about what to do about the future. And there’s not much more powerful than that.
Dr. Catherine Coombs: Why Is It Important for You to Empower Patients?
Dr. Catherine Coombs: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.
What are some ways to empower patients? CLL expert Dr. Catherine Coombs with University of California Irvine discusses resources she recommends to patients, what she explains about CLL treatment, and lifestyle advice for patients.
See More from Empowering Providers to Empower Patients (EPEP)
Related Resources:
|
Dr. Jennifer Brown: Why Is It Important for You to Empower Patients? |
Dr. Andres Chang: Why Is It Important for You to Empower Patients? |
Transcript:
Dr. Catherine Coombs:
I empower my patients by providing them information, but also, emphasizing that, for as much as they would like, they can take an active role in their disease. And not everyone wants to do that, but I think for those that do, there are really excellent resources for education. I often refer my patients to the CLL Society, The Leukemia & Lymphoma Society, for more information, for support groups.
A common question I get from patients is, “Well, what can I do?” And I always emphasize to them how incredibly treatable CLL is in the event it needs treatment, but that it doesn’t always need treatment and therefore it’s just important to focus on their general health. And so I think eating a healthy diet and exercising are components that can really improve a patient’s quality of life, whether it’s unique to the CLL or just general life, I think, we don’t know, but it’s certainly not bad, and so I always emphasize that this is a treatable malignancy, they can always get more information if that’s something they desire, and that to focus on their overall health is of key importance as well.
Educational Resources for CLL Patients
Educational Resources for CLL Patients from Patient Empowerment Network on Vimeo.
How can chronic lymphocytic leukemia (CLL) patients learn more about their disease? Dr. Seema Bhat recommends resources and online communities for CLL patients looking for more information.
Seema Bhat, MD is a hematologist at The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Bhat.
Related Resources:
|
|
|
Transcript:
Katherine:
Many CLL community members are interested in learning more about their disease. So, for newly diagnosed patients, what are a few educational resources you recommend to help them learn more about their condition?
Dr. Bhat:
There are a number of well-established support groups or educational resources for our patients. These include the CLL Society, The Leukemia & Lymphoma Society, Lymphoma Research Foundation, and then we have Patient Empowerment Network, and we have Patient Power. All these resources provide support groups, organize webinars, and have educational material for our patients.
Katherine:
What about patients who have been living with CLL for many years, or are quite knowledgeable about their disease? Are there more advanced resources for patients to stay up to date on the latest research and treatment?
Dr. Bhat:
So, for patients who want to search for additional resources, especially looking for clinical trials, going on this website called clinicaltrials.gov, they can first search for CLL-related clinical trials. Also, NCCN, or “National Comprehensive Cancer Network,” has patient resources for each disease, and then they can find information on CLL there, also. I would also like to say that Google is a good resource, as long as you know where it is taking you.
Katherine:
Exactly. You may not be able to rely on everything you find.
Dr. Bhat:
Right.
Addressing Racial Disparities in CLL Care
Addressing Racial Disparities in CLL Care from Patient Empowerment Network on Vimeo.
How are CLL racial disparities being addressed? Dr. Adam Kittai explains abstracts presented at the American Society of Clinical Oncology (ASCO) 2022 conference that examined CLL disparities and shares resources for patients who feel they’re struggling to receive equitable care.
Dr. Adam Kittai is a hematologist and an assistant professor at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Kittai, here.
See More from CLL Clinical Trials 201
Related Resources:
|
|
|
Transcript:
Katherine:
We touched on research at the top of the program, but are there other areas of research that you’re excited about and that patients should know about?
Dr. Kittai:
Yeah, so one of the things that I think is being really talked about in cancer care – and medical care in general – is if disparities exist between minority patients and white patients. And I think this is a really, really important topic.
So, the American Society of Clinical Oncology, which had the conference recently, really made this a mainstay point of the conference this year and there were a lot of abstracts that were defining whether disparities exist and hopefully, by defining whether disparities exist, we’re able to target those disparities in order to make outcomes equal for all of our patients.
So, in the CLL world, one of the things that I alluded to is a lot of our therapies can be really expensive. So, these new therapies are really expensive, they really widen the disparity gap for patients who are minorities, as well as patients who come from socioeconomic status.
Katherine:
Absolutely.
Dr. Kittai:
And so, there were two abstracts. One was an oral presentation that looked at the National Cancer Database in ASCO that showed that Black patients do have worse overall survival than white patients. And then, I actually did my own study looking at the SEER database, which also showed the same exact thing. Even when controlling for socioeconomic status.
So, I think addressing these disparities, making sure that there’s equity amongst our patients, that everyone has access to these drugs and can afford them, especially when they make our patients live longer and are safer than chemoimmunotherapy in CLL is very, very important.
Katherine:
Dr. Kittai, if a patient feels like they’re not getting equitable care, are there resources available for them?
Dr. Kittai:
Yeah, so one of the things that I love about the CLL society, is that they have a section called Access an Expert, I believe. So, look on the website, I’m not sure it’s actually called Access an Expert, but it’s a way for all patients to get a second opinion from one of the CLL experts listed on the website. And so, if somebody is feeling like they’re not getting access to the most beneficial treatment, for whatever reason, seeking a second opinion and using the CLL Society’s website to find that second opinion, I think would be a great way for someone who feels that way to get access to the care that they deserve.
I believe there are other ways to do this through the Lymphoma Research Foundation, as well as LLS. But I know for sure on the CLL Society, there is a link that you can click that you can get access to a second opinion.
How Can CLL Patients Find Clinical Trials?
How Can CLL Patients Find Clinical Trials? from Patient Empowerment Network on Vimeo.
Finding a CLL clinical trial can feel overwhelming for some patients, so where can they start? CLL expert Dr. Adam Kittai shares advice, credible resources, and provides key questions to ask about trial participation.
Dr. Adam Kittai is a hematologist and an assistant professor at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Kittai, here.
See More from CLL Clinical Trials 201
Related Resources:
|
|
|
|
Transcript:
Katherine:
Now that we know what trials are and how they work, how can people find out what trials are available to them?
Dr. Kittai:
Yeah. So, I’ll come back to this, but once again, talk to your physician. They’ll know what clinical trials are available at whatever site you are seeing them in. If there’s a local academic sector, the academic sector typically has clinical trials available there as well. So, it’s always good to get a second opinion in that regard.
But one of the open access places that you can find all clinical trials is clinicaltrials.gov. This has all active running clinical trials listed out and anyone can access it. There are other societies out there that often post about clinical trials. So, there’s the CLL Society. It’s a website that you can check out that has a lot of information on there about active clinical trials in CLL. There’s also The Leukemia & Lymphoma Society, the Lymphoma Research Foundation, they all have websites available that have a lot of clinical trials listed and how to access them.
Katherine:
Are there key questions that you think patients should ask their health care team about participating in a trial?
Dr. Kittai:
Yeah, for sure. I think one of the key questions to ask is, is the control arm appropriate. So, what do I mean by that? Sometimes people who design a clinical trial will design a trial where the control arm is an easy control arm to beat, meaning that it’s a treatment that we wouldn’t necessarily put you on as standard of care.
And so, I think this is a real question and an honest question that you should ask your physician prior to enrolling on a trial is, is the control arm something you would give me as standard of care. And if the answer is no, you should really consider not going on that trial or talking about why you would want to go on that trial if the control arm is not something they would put you put you on as standard of care.
Katherine:
Right.
Dr. Kittai:
That’s, I think, a key question to ask. And again, asking what phase it is and understanding where we are in the development.
Why You Need a CLL Specialist
vWhy You Need a CLL Specialist from Patient Empowerment Network on Vimeo.
Why should you seek care with a CLL specialist? Dr. Brian Hill outlines the benefits of seeing a CLL expert and advice for approaching a second opinion. Need help speaking up? Download the Office Visit Planner and bring it to your next appointment here.
Dr. Brian Hill is the Director of the Lymphoid Malignancies Program at Cleveland Clinic. More about this expert.
See More From The Pro-Active CLL Patient Toolkit
Related Resources
|
|
|
Transcript:
Dr. Brian Hill:
Patients should consider seeing a CLL specialist because oncology is a very complicated field. There are many different types of cancers that oncologists treat. And particularly in smaller hospitals, maybe with general oncologists who see lung cancer, colon cancer, breast cancer and CLL as well as many other types of – patients with many other types of problems. It’s very difficult to stay 100% up to date on all those fields. All of oncology is very rapidly evolving.
And the progress that’s being made in all the diseases I mentioned is very fast paced. And so, things change. And there’s new data emerging all the time. And CLL specialists or lymphoma specialists are able to stay more up to date on these topics. And usually that can result in maybe better options for patients.
So, we often get second opinions or third opinions for patients with CLL.
And one of things patients are understandably concerned about sometimes is the impact this will have on their primary oncologist. Maybe they are from a smaller town or have a smaller hospital. They have an oncologist, hematologist, gynecologist who they like, and they trust, and they don’t want to hurt their feelings or damage the relationship because they may need their primary or local hematologist, oncologist to help them if they are sick or something goes wrong.
So, I think that most oncologists recognize that – again, the field is very complicated. And it’s common for people to seek opinions from referral centers. So, I would say the best thing is to be up front about it. And explain to their primary that it’s not that they don’t like them or don’t trust them.
But it’s important – it’s their health. And they really want to make sure they have another set of eyes. And I even sometimes encourage my own patients that if they have questions about what I’m talking to them, to welcome another opinion. And if there’s good communication about it, I don’t think that you should be concerned about the sort of hurt feelings aspect of it.
How Can The CLL Society Help You?
How Can The CLL Society Help You? from Patient Empowerment Network on Vimeo.
Dr. Brian Koffman, co-founder of The CLL Society, explains its mission and goals. Dr. Koffman reviews programs and services that assist chronic lymphocytic leukemia (CLL) patients and their loved ones.
Dr. Brian Koffman is the cofounder, chief medical officer, and executive vice president of The CLL Society.
See More From The Pro-Active CLL Patient Toolkit
Related Resources
|
|
|
Transcript:
Dr. Koffman:
Hi, I’m Dr. Brian Koffman. I’m a retired family doctor, and I’m the cofounder, chief medical officer, and executive vice president of the CLL Society. And, what, you ask, is the CLL Society? Well, the CLL Society is a 501(c)3 not-profit that focuses on the unmet needs of the CLL community in terms of supporting, educating, advocating on behalf of, and researching what needs to be done in the CLL community.
The CLL Society is very proud of the programs that we offer. So, among the programs that we offer, the backbone is a website that covers everything from the very basic kind of information – frequently asked questions – to really the latest research that’s coming out.
Also, on the website, CLLSociety.org, we have a whole toolbox, and in that toolbox, there are lists of acronyms. There are links to other CLL resources. There are links to CLL experts around the country. There are spreadsheets to help you with your lab sheet – lab results so you can follow them and mark the trans-Excel spreadsheet. We also do trial educational forums across the country with places like MD Anderson, Dana-Farber, or the National Institutes of Health.
And, we have 30-plus support groups in Canada and the USA that meet generally on a monthly basis, so there’s a peer-to-peer interaction, and we provide education to all of those. And, one of the programs that I’m most proud of is for patients who don’t have access to an expert. We provide free virtual consultations with CLL experts from the top institutions through a Zoom-type platform that’s HIPAA-compliant so patients can ask their questions to a remote expert, that expert reviews their medical records, and then to their local hematologist so they get the benefit of a consult that they wouldn’t otherwise.
