Tag Archive for: patient education
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.
HCP Roundtable: Advancing Practice and Enhancing Myeloproliferative Neoplasm Care
In this EPEP program, Dr. Akriti Jain of Cleveland Clinic and Nurse Practitioner Kimberly Smith of Duke Health discuss overcoming practice barriers, navigating emerging challenges, and implementing strategies to close gaps in patient-centered myeloproliferative neoplasm (MPN) care.
Related Resources:
Expert Insights on Overcoming Barriers to Myelofibrosis Care |
HCP Roundtable: Breaking Through Myelofibrosis Practice Barriers |
Explaining Myeloproliferative Neoplasm Disease Progression to Patients |
Transcript:
Dr. Nicole Rochester:
Welcome to this Empowering Providers to Empower Patients or EPEP Program. My name is Dr. Nicole Rochester, Founder and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers.
In this healthcare provider roundtable, we are discussing advancing practice and enhancing myeloproliferative neoplasm care. How can we overcome current challenges to enhance the management and outcomes of myelofibrosis, polycythemia vera, and essential thrombocythemia? What innovative practices are transforming the management of myeloproliferative neoplasms to improve patient outcomes?
Our conversation will look at gaps in the field and solutions to enhance patient-centric MPN care for improved patient outcomes. We’re going to discuss identifying practice barriers to patient-centered care, navigating emerging challenges and opportunities in management and effective strategies for closing gaps in MPN care. It is my privilege to be joined by Ms. Kimberly Smith of Duke Health. Ms. Smith is a nurse practitioner who provides security and compassion that patients and families need when they get a cancer diagnosis. Thank you so much for joining this EPEP program today, Ms. Smith.
Kim Smith:
Thanks for having me. It’s a pleasure to be here.
Dr. Nicole Rochester:
It is also my honor to be joined by Dr. Akriti Jain, a hematologist at Cleveland Clinic. Dr. Jain’s passion lies in understanding the needs of every patient and always prioritizing and advocating for her patients and their families. Thank you so much for joining the EPEP program, Dr. Jain.
Dr. Akriti Jain:
Thank you, Dr. Rochester. Happy to be here.
Dr. Nicole Rochester:
So I’d like to start off by talking about identifying and overcoming barriers to patient-centered care for patients and families facing a myeloproliferative neoplasm. So, Dr. Jain, I’m going to start with you. What are the most common barriers to implementing patient-centered care in the management of myeloproliferative neoplasms?
Dr. Akriti Jain:
Thank you for that question, Dr. Rochester. It’s very pertinent. As you can imagine, there can be a lot of barriers when we are trying to provide patient-centered care, especially in the management of myeloproliferative neoplasms. As you said, there are multiple myeloproliferative neoplasms, and each one of them is complex. And hence the complexity of each diagnosis, how they’re diagnosed, how their risk-stratified and how those patients are symptomatic based on whether their platelets are high or their hemoglobin is high, or they have scarring or fibrosis in their bone marrow.
Then that in itself becomes complex and can become a problem when we’re seeing these patients in the community. That’s why a lot of these patients get referrals to tertiary care centers, and not all patients can have that opportunity to go to tertiary care centers and see providers that are very knowledgeable and know what…exactly how to diagnose these myeloproliferative neoplasms.
Dr. Akriti Jain:
A lot of times it’s very team-based approach. It’s not just the clinician, but also the pathologist. So a lot of times when these patients come to us we have their bone marrow biopsies reviewed because the diagnostic criteria requires certain things in their bone marrow that helps us diagnose these problems. So not just that these MPN are variable, but also individual variability within the MPNs. So not every polycythemia vera patient presents the same way. So that becomes a problem again when providing patient-centered care, because it’s not the one-size-fits-all philosophy. Those are some of the things that I can think of.
Dr. Nicole Rochester:
Ms. Smith, I know that you share Dr. Jain’s passion with regard to really being compassionate with your patients. So I’d love to get your perspective as a nurse practitioner what are the primary barriers that you’ve witnessed to accessing effective patient-centered care?
Kimberly Smith:
I would say what I’ve experienced most is the patients actually understanding their disease process, the education piece, like making sure that educating them about their disease, giving them security that, hey, that you have a myeloproliferative neoplasm, but let’s look at it as we’re running a marathon, not a sprint. You know that we have time, you know that we can get family involved. And I think that’s a big thing with me, just try to bridge that barrier that it’s a team effort. It’s not just you. Even though treatment is individualized, it’s still a team. We are a team, so I want you to be comfortable, but I also want to be comfortable with giving you the information and that you are able to receive it. That’s one of the big barriers that I see is them being able to accept their diagnosis.
Dr. Nicole Rochester:
Wonderful. Thank you so much Ms. Smith. So, Dr. Jain, I’m going to go back to you and staying on this theme of patient-centered care. Can you talk about some of the gaps in research regarding patient-centered care in MPNs, and how can those gaps be addressed?
Dr. Akriti Jain:
Sure. So building off of what Ms. Smith was just saying, education comes, it’s very important also for research. If our patients are educated on the potential options for trials, for retrospective research, for registry research, they are more open to accepting these options for their management, for their treatment. A lot of patients might not know which phase each trial is in, and a lot of patients don’t want to be, “guinea pigs.”
So sometimes it’s important for us to educate patients that some of these trials are Phase III trials and Phase III trials eventually lead to drug approval. So a lot of the drugs we have for myeloproliferative neoplasms were not available a few years ago. So education is very important here. And lack of education within patients and then also within healthcare providers can be a big gap in getting research to the patients where it is needed.
And we’re very thankful to these patients that help us advance research and help us get these drug approvals and enroll in trials. Other important gaps are including patient-reported outcomes. As we all might know within MPNs, we have a really nice MPN symptoms score MPN-SAF, a lot of newer research trials and other research avenues are including SAFs within the trials. And so these are important things that can help us give patients the prioritized and individualized care they need.
Dr. Nicole Rochester:
Thank you so much, Dr. Jain. Ms. Smith, do you have anything to add with regard to gaps in research regarding patient-centered MPN care?
Kimberly Smith:
Yes. I agree with Dr. Jain, but also another thing that I notice, with these gaps is a lot of patients come to us with other comorbidities, and so they might not qualify for trials or they might have another associated heme malignancy that they might not be able to qualify. So it kind of puts a gap in treatment, because then we have to go with what’s already FDA-approved, and that might not be the best option for the patient at that time.
Dr. Nicole Rochester: Thank you for pointing that out. So we’ve been talking about the barriers that patients face, and I want to shift gears a little bit and focus on the healthcare provider. So, Dr. Jain, I’m going to start with you. Can you speak to some of the obstacles or barriers that healthcare providers face when treating MPN patients?
Dr. Akriti Jain:
Sure. So being a healthcare provider and doing this, I can tell you all about the barriers we face. I think going back to that team-based care, sometimes it’s easier said than done. Like I said, we need pathology input. A lot of times we need psychology input. Other times, we need cardiology input. Some of these patients are getting blood clots, vascular medicine, so team-based care and coordination within those various physicians and nurse practitioners and social workers that can sometimes become cumbersome requires lots of phone calls.
And so in a lot of places, we try to put together these teams where you have kind of like a go-to person to call when you have questions or concerns. The other thing we always are all short on is time. So it’s easier to talk about these MPN symptom scores, but when there are 10 questions to ask these patients within those 15 to 30 minute appointments though that’s another barrier sometimes that we face as physicians and as healthcare providers.
The other important, one of the other important parts is management of some of the side effects of these newer therapies. Every patient reacts differently. Every patient has different side effects that they can have. And knowing those and being able to manage them while keeping them on these therapies, which don’t only improve symptoms, but can also sometimes improve survival and improve the natural history of the disease can be difficult to overcome and handle.
Dr. Nicole Rochester:
Thank you, Dr. Jain. And what about you, Ms. Smith? Can you speak to any additional barriers that healthcare providers face?
Kimberly Smith:
Unlike Dr. Jain was saying, but one of the barriers that I see that that we face a lot is advocacy groups are great, they’re wonderful, we need them. But a lot of patients look at those groups, and they lump themselves into that group. And so I try to tell patients you are an individual. You are individual. You need individualized care. It’s wonderful to look at the advocacy groups. It’s wonderful to follow, and you get some good information, but we also have to look at you as who you are and what we are treating and your symptoms, because your symptoms may not be the symptoms that they have.
Dr. Nicole Rochester:
A really good point. And since we’ve talked about these barriers, I’d love to wrap this part of the conversation up by giving solutions. So, Dr. Jain, you mentioned a couple, you talked about having this one number for all of the how healthcare providers to call, if there are questions to kind of help to coordinate care. Are there other solutions that you or Ms. Smith can offer to start to overcome some of these barriers in care?
Dr. Akriti Jain:
Sure, yeah. In addition to the multidisciplinary team that we were discussing and having, those people that we can talk to another barrier that I didn’t talk about is a lot of prior auths and having pharmacy support to get some of these medicines that can be really expensive, right? The financial toxicity that can come with some of the medicines that we manage myeloproliferative neoplasms with is hard. So having pharmacy support is again very important.
Having that specialty pharmacy that can help us navigate how to get these medicines to patients quickly and get them in an affordable manner, I think another important part that we always come back to is education. Education of those pharmacists, of patients, of other healthcare providers helping them stay on top of what new drug approvals come through, what Phase III trials are available in the community, what the side effects of these medicines are so that they are empowered to be able to help their patients out in the community and also in tertiary care centers.
Dr. Nicole Rochester:
Wonderful. Thank you both. Well, we’re going to move on. And in this section I want to talk about some of the challenges and opportunities. So I’m going to start with you on this one. Ms. Smith, can you speak to some of the emerging challenges and opportunities in the management of myeloproliferative neoplasms?
Kimberly Smith:
Well, a lot of the world of MPNs is starting to explode, especially with myelofibrosis. We are getting all these different treatments, these trials running, things hopefully that we will have that could that could change the disease process in these patients. And one of the biggest challenges is, is that where do the patients fit at in this aspect of it? Are we going to be able to actually get patients approved for some of these things or will we have to go with the oldie, but goodie with a lot of these? We still use hydroxyurea (Hydrea) a lot in these MPNs. And so, but we have a lot of other drugs now that we can use.
But because we know that it’s tried and true, and it’s harder to get patients on some of these other drugs, we go with the oldie but goodie. So I think that’s a challenge that we…that we’ll have. And the other thing is too these drugs are expensive. So even if we can get the drug form at our institution or in the community, if we can get them for them, will they be able to afford them? And one thing I can say that I’ve noticed is a lot of the drug companies that we’ve dealt with here that they are really good about helping, is there anything that we can do to kind of help push the process to get patients assistance for these therapies? And so I think that’s one of the biggest challenges that we’ll have with treating them, just this explosion of new therapies coming.
Dr. Nicole Rochester:
And you kind of alluded to it when you spoke about hydroxyurea. So I’m going to pose this question to you, Dr. Jain, are there any unforeseen or outdated practice-related barriers or therapeutic inertia that may hinder your work in that of your colleagues?
Dr. Akriti Jain:
Yes, definitely. I echo Ms. Smith’s sentiments. I think a lot of times, things that we have already used for years and having familiarity with those treatments sometimes can lead to resistance to accepting new guidelines and treatments. And that can come from, again, not knowing the side effects that these treatments can pose, right? Not having long-term data that these drugs haven’t been, some of them are new, they haven’t been around for years, so we don’t know what they can cause in the future. And that can happen both from the healthcare provider standpoint and also from the patient standpoint. And it can be challenging. And what can help us overcome that is education.
Even though the drugs might not be approved, for example, the newest approval that came around last year was momelotinib (Ojjaara), which is a newer drug for myelofibrosis, can help treat anemia as well. After it was approved, we had patients ask us for that drug for months before we could actually prescribe it. Yes, because FDA approval and then actually being able to prescribe the drug take…it takes some time for these drugs to show up on formularies for pharmacies to start carrying them. And then going back to, even if the drug was approved last year, it doesn’t mean it’s a new drug. It’s being tested and it is being tested in trials for years now. So those are some of the things that I can think of.
Dr. Nicole Rochester:
Thank you both. So I want to talk about the Landmark study. This, as you all know, was a large scale analysis and survey of patients with myeloproliferative neoplasms as well as the healthcare providers who treat these rare chronic blood cancers. Ms. Smith, how do you feel that healthcare professionals can use the insights from the MPN Landmark study as an opportunity to improve how they communicate and interact with their patients?
Dr. Akriti Jain:
Sure, I think the most important thing that we can learn is understanding the patient perspectives and needs. It provides an in-depth analysis of what the patients get anxious about or what the patient’s symptoms are about. So if, for example, if the patients are anxious about side effects of treatment, we can be proactive in empowering our patients with that knowledge that these are the things that we need to look out for.
These are the things that you would call us for. And again, it gets us back to understanding the common challenges that our MPN patients face and then how we can help them with those challenges, those symptom management. If treatment adherence is a problem, how can we help them have a pill diary? Or if a burden is a problem, how can we help them reduce some of the medicines that they’re taking? I think it provided a really good understanding of what patients feel, how their perspectives are, and what things we can use to improve their management and provide more patient-centered care.
Dr. Nicole Rochester:
And what about you, Ms. Smith? What are your main takeaways from the Landmark study and how can healthcare providers use those results to improve the way they interact with patients?
Kimberly Smith:
My main takeaway was where the patients, where it showed on the study, where the patients were saying it was hard for them to get up out of the bed. So I’ve dealt with that with many patients. Fatigue is a true issue. And, I’ve had patients tell me they’ve golfed nine holes. I had no idea what that meant. But then they say I come in and I can only golf five holes.
I still had no idea what that meant. However, it was significant for them. And so, what I take from that study is we have to not only just ask patients, what are your symptoms? We have to actually question and dig to actually find out because what we may be looking at just off of the symptom score page, they may have something else that’s hindering their ADLs or hindering their, what they’ve done all the time in their life. And it’s changed now.
And so, I think the main thing we have to do is actually ask, educate, have them to write down symptoms, anything that happens new that happens to them, let’s write it down. Let’s go over it. Let’s talk about it. And then if it’s fatigue, we have ways we can help mitigate some of that. We collaborate with palliative care to help with symptom management. If it’s allergy symptoms, we collaborate with allergy. So there’s ways we can help you with your symptoms, but if we don’t know, we don’t know. So I think the education, I think talking to patients, like actually talking to them on their level is what that Landmark study kind of presented to all of us, healthcare providers, that what we may be looking at as symptoms may not be symptoms for the patient.
Dr. Nicole Rochester:
Absolutely. And that kind of circles back to, I think what you were talking about earlier, Dr. Jain, with regard to patient-reported outcomes. So I will say I was thrilled to see this study, and I wish that this is something that was done in all disease states. So thank you both for commenting on that. So in our final topic, we’re going to talk about strategies for closing the gaps in myeloproliferative neoplasm care. So I’m going to go to you first, Dr. Jain, can you describe the most effective strategies, including your own best practices that can address gaps in care for patients facing a myeloproliferative neoplasm?
Dr. Akriti Jain:
Yes. So again, coming back to empowering our patient and leading to that shared medical decision-making. So different patients present differently, not using that one-size-fits-all philosophy, depending on what their symptoms are, what their diagnosis is tailoring their treatment. If cytopenias or anemia is a problem, helping them battle that. And different hemoglobins can be different for different patients. So not discounting their symptoms, saying that your hemoglobin is 11, your hemoglobin’s fine, you don’t need any treatment for this right now, maybe they’re used to functioning at a 14.
So shared medical decision-making is very important, because if patients feel like they’re heard, if patients feel like they’re a part of the decision that their healthcare provider made in helping them decide what is best for them, I think that is really important. And it would lead to patients actually adhering to treatment, following up with their healthcare provider, and also better physician-patient relationship, which I think is very important in some of these chronic diseases, where these relationships last for years, right? This is one of the chronic diseases, like a lot of times we’re telling our patients, this is like high blood pressure or diabetes, we have to learn to live with it.
And so they have to be friends with their healthcare provider, otherwise they’re not going to come see you again. So I think empowering the patient, making them a part of this decision of how we’re going to treat them, how we’re going to monitor them, how often should we be doing their labs, is it feasible for them, I think are really important ways to close those gaps and help our patients.
Dr. Nicole Rochester:
Thank you so much, Dr. Jain. What about you, Ms. Smith, what thoughts do you have in terms of strategies to address the gaps in care for MPN patients?
Kimberly Smith:
I agree with Dr. Jain, but also bridging the gap between community and tertiary centers. A lot of times, we treat patients in these big centers, and then we send them out to local places to whether they need transfusions or, or to continue care because the distance for them to make it here is just too far. So I think, bridging, collaborating with the outside community hospitals and community centers, and also even the nursing staff, the nursing staff coordinating, just coordinating the care so these patients will know that they are receiving effective care, whether they are at this tertiary center or they’re at their community center, because we all are working as a team to make sure they have everything they need.
And also including the family. Families are important. That was a big thing to me. Like, I want to make sure families knew that they were a part of this team also, because a lot of times it’s the family who is having to deal with the symptom management. They’re the ones who want their family member to go somewhere with them, and they’re just too fatigued to get out, and they don’t understand it, because we’re telling them that this is a chronic disease. They should be able to do some things, but they just can’t. So I think we have to make sure we’re bridging the gap with the families also.
Dr. Nicole Rochester:
So for you, Dr. Jain, are there specific strategies or maybe one strategy that you have implemented yourself, maybe where you work, that has helped to bridge that gap between tertiary care and the community setting, as an example?
Dr. Akriti Jain:
Yeah, that’s a very good point brought up by Ms. Smith. So what I do, because a lot of the patients I see in my clinical practice are second opinions. A lot of these patients I see one time, and maybe I’ll never see them again, or maybe I’ll see them in two years from now when things have changed, and they have more questions, or their provider has more questions. So what I do is I make sure the patient has my contact number so that they can always reach out if things change.
I make sure they have that MyChart set up so that they can always message me if they need me. The next step that I always take is I call their primary oncologist. I make sure they have my cell phone number so that they can call me if things change, if they have any questions. And the third thing I always tell my patients is you can use me however you want to use me.
So, I, a lot of times, would set up virtual visits in three months or in six months. That way, even if they live hours away from us, they can see us the tertiary care center through the comfort of their home. They can get labs locally and see us. They can kind of alternate between their primary oncologist and a tertiary care center, or maybe see us once a year. It’s dependent on how much they feel makes them comfortable seeing us along with their primary oncologist who’s doing most of the heavy lifting, providing the care close to their homes.
Dr. Nicole Rochester:
And to circle back to the family part, I’m going to go back to you, Ms. Smith. Is there a strategy that you can share that you and your team implement to really engage with the family members of MPN patients?
Kimberly Smith:
Yes. So we provide educational materials to the patients. We always ask them to bring a family member with them. If they can’t bring a family member with them, I’m willing to call a family member if they need information after the visit. I always give them the contact numbers that the family member can contact me also. MyChart is a big thing. Make sure they have MyChart because the family reaches out via MyChart also.
Another thing that I do is that I try to make sure that the family also has like the educational material too, because sometimes you can give it to the patient, but they don’t share it. So if a family member comes, if I pass out information to the patient, I pass it out to the family member also. I also provide them with websites that they can use, that they can utilize. Like the Cleveland Clinic is one of them that I have them use a lot, but, but websites that they can use where they can actually look up information on these different MPNs that they may have. So I think the educational piece is the biggest thing that I do with my patients.
Dr. Nicole Rochester:
Excellent. Thank you both for that. We talked a little bit about the perception that patients have when we talked about the Landmark study a little earlier in this program. And Dr. Jain, I’m going to come to you. How did the gaps in perception or perhaps the disconnects between the patient perception and the physician or healthcare provider perception of the disease burden, how do those gaps impact overall management and treatment outcomes for MPN patients?
Dr. Akriti Jain:
Sure, Dr. Rochester. So the disconnect between the physician and patient can become really important and where that occurs is because a lot of times our low symptom burden, low-risk disease patients are being observed. And the physician might think that I don’t think this patient warrants treatment, but the perception that the patient has of their symptoms might actually be very different. And I think what comes really handy here again is that MPN symptoms score, when you ask patients to rate the symptoms from 0 to 10, but 10 being the worst, you can actually see where they lie on the spectrum.
And I do these symptoms scores on every visit, because especially if I’m starting them on treatment, it really helps to know in an objective manner that what was the number that our patient rated fatigue on at their last appointment and what that number is now. And it’s not just fatigue, but all those 10 points and then symptom score, how are their night sweats, how is their itching, are they still having problems concentrating, have they lost weight?
So all these questions with a number attached to them, and it’s very surprising. You’ll see patients put in a zero for all these numbers and suddenly after three months, those numbers change. And so that really helps to know where the patient lies and so that we can close the gap between what the patient is perceiving about their symptoms versus what their provider is.
Dr. Nicole Rochester:
Ms. Smith, what would you like to add?
Kimberly Smith:
Yeah, I agree with that. I agree with that because using that symptom score, one of the questions is early satiety and losing weight. And that’s a big thing for these patients because they can end up with spleen enlargement. And so one of the main things that I kind of hone in on is, I want you to chart your symptoms. I don’t care what it is, Chart your symptoms. Even if it seems small to you, chart it. Because once you start them on drug, these things can change. And I just speak from one, just remembering one patient that I had who had an enlarged spleen and her main thing was, I want to eat. I just want to eat a burger and a full burger. And I haven’t been able to do that.
And we started her on treatment. And within three months, her main thing was, Kim, I was able to eat a burger and I ate the whole thing. So even though we probably can’t see on scans that it’s smaller, she could tell something was different. And that just made her happy to be able to do that. And so I tell them to chart everything. It doesn’t matter what it is, how mediocre you may think it is or minuscule you may think it is. It’s important because if things change over time, we need to be able to manage it.
Dr. Nicole Rochester:
Absolutely. Thank you. Well, this has been awesome. I have learned a lot as always. It is time to wrap up our roundtable. And I’d like to get closing thoughts from each of you. So, Dr. Jain, what is the most important takeaway message you want to leave with the healthcare professionals who will be listening to this program?
Dr. Akriti Jain:
Yeah, thank you, Dr. Rochester. I thoroughly enjoyed our conversation as well. I think the most important part of all of this is empower your patients. Tell them what they are suffering from. Tell them this is a chronic disease. Tell them you’re there for them. Use the resources we have the MPN symptom score. Use the medications we have if the patients meet those criteria, if they’re having symptoms. Sometimes it’s important to get down to the patient’s level and get to the point where they or get down to the patient’s level and feel what they’re feeling, rate their fatigue, and give them the help they need.
Dr. Nicole Rochester:
Thank you, Dr. Jain. And Ms. Smith, what is the most important takeaway message that you would like to leave with our healthcare professional audience?
Kimberly Smith:
Thank you. I truly appreciated this and I loved it. This was awesome. But I just want to leave that, listen to your patients. They know their bodies. They know themselves. Listen to their family. They’ve dealt with them all their lives. They know when something is different. So just listen to them. Listen to them. Be receptive. And that way we can work as a team to make sure our patients get the best care that they need.
Dr. Nicole Rochester:
Well, thank you both. Just to echo what Dr. Jain and Ms. Smith have said, the most important takeaways are really involving our patients and their families, empowering our patients and families, educating our patients and families, and also valuing this multidisciplinary, interdisciplinary team. So thank you both so much again for being here and being part of this important conversation. And thanks to all of you for tuning in to this Empowering Providers to Empower Patients, Patient Empowerment Network program. Again, I’m Dr. Nicole Rochester. Thank you for watching.
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Dr. Abdulraheem Yacoub: Why Is It Important for You to Empower Patients?
Why is it important to empower patients? Expert Dr. Abdulraheem Yacoub from the University of Kansas Medical Center discusses his approaches to patient empowerment and the positive impacts that empowered patients benefit from.
See More from Empowering Providers to Empower Patients (EPEP)
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Dr. Jennifer Brown: Why Is It Important for You to Empower Patients? |
Transcript:
Dr. Abdulraheem Yacoub:
Your ability to provide the best care for your patients really takes a team, takes a village. It involves the physician, the nurses, and the pharmacists but visually also patient and caregiver involvement. The more my patients are informed, the more their caregivers are involved. The more resources come up for these patients, the more their decisions are being made with the more depth and considerations and usually leads to more productive and effective healthcare provision for these patients. I believe that patients being educated in about their disease about what they’re up against to be given a realistic prognosis and expectation is of great value.
I think arranging for patients to attend patient symposiums to reach out for educational material to be encouraged to seek out second opinions or to enroll in self-advocacy groups is of great importance and of greatest value for these patients. Patients with MPNs will live with their diseases for the rest of their lives, and that might include through the careers of multiple oncologists. So as patients live with their disease long, they need to master the knowledge base for MPN and for the understanding of their disease as they carry the journey with their MPNs for their natural lives and until a journey to cure or control their disease. I certainly believe in that, and I believe it’s the mission for all doctors to promote patient empowerment and patient education and involvement in their care.
The Role of Patient Education in Managing Treatment-Related Side Effects in CLL
The Role of Patient Education in Managing Treatment-Related Side Effects in CLL from Patient Empowerment Network on Vimeo.
How can CLL treatment side effects be impacted by patient education? Experts Dr. Andres Chang from Emory University and Dr. Daniel Ermann from Huntsman Cancer Institute discuss methods they utilize with patient education and educational resources that they provide to patients.
Download Resource Guide | Descargar guía de recursos
Related Resources:
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How Can CLL Patients and Providers Be Empowered for the Best Care? |
Transcript:
Dr. Nicole Rochester:
And speaking of patient education, Dr. Ermann, I’d love for you to share if you 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.
Dr. Andres Chang:
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.
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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
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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.
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Dr. Rafael Santana-Davila: Why Is It Important for You to Empower Patients?
Dr. Rafael Santana-Davila: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.
What are some ways for cancer patients to be empowered by experts? Dr. Rafael Santana-Davila with the University of Washington School of Medicine shares his perspective and benefits of patient empowerment.
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Transcript:
Dr. Rafael Santana-Davila:
An empowered patient is a patient that does better, because they know what’s going on. They have a better understanding of the disease. They’re better engaged. So how do you empower your patients? It’s a very difficult question to answer, because I don’t think that there’s a recipe to do this. And every patient is different. But what I try to do is to educate patients and know that these are hard conversations that a lot of it is going to be over their head. So you have to do a lot of re-education. And when I say over their heads, I’m not meaning that they are not smart enough to get it, it’s just they’re going through a lot. So you have to be simple with them. You have to meet them where they are and just do a lot of re-education and talking about the things that you think you’ve talked about, but many times they were thinking about something else, and they didn’t get it.
Dr. Gabriela Hobbs: Why Is It Important for You to Empower MPN Patients?
Dr. Gabriela Hobbs: Why Is It Important for You to Empower MPN Patients? from Patient Empowerment Network on Vimeo.
What are some ways that can myeloproliferative neoplasm (MPN) care providers can help empower their patients? MPN expert Dr. Gabriela Hobbs from Dana-Farber/Harvard Cancer Center shares her perspective of how she educates her patients. Dr. Hobbs explains her methods of empowering all her patients in their care – whether they’re newly diagnosed, needing long-term MPN care, or going on to seek care from other clinicians.
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Dr. Ana Maria Lopez Why Is It Important for You to Empower Patients |
Transcript:
Gabriela Hobbs, MD:
I think that empowering patients is really important in developing an excellent longitudinal relationship with an MPN patient. And the way that I like to empower my patients is through education. And that starts with the first meeting with the patient when they’re recently diagnosed, or maybe they’re seeking you out for another opinion because maybe something is going not well with their disease.
And so that first visit, I really like to spend a lot of time educating about what MPNs are, the different types, the things that we worry about, the possibility of disease progression, and then spending a lot of time talking about the different treatment options that exist. As well as spending a lot of time talking about how patients can maximize their quality of life with both pharmacologic interventions as well as lifestyle modification. And so education really is at the center of empowerment for patients.
And I think that that gives them a lot of control over their disease and prepares them for additional visits with me or with other clinicians if they’re seeking other care from other clinicians as well, especially those patients that maybe travel from far away. And so education during that visit is important, but also talking to patients about how to prepare for additional visits. So I talk to patients a lot about taking track of their symptoms, keeping track of how they’re feeling, how they feel with the medication, with perhaps a change in medication, how they feel like their symptoms are changing over time. Talking to them about the MPN symptom assessment form, and making sure that they can utilize that form to keep track of how they feel.
And then also asking questions…If they don’t ask questions during the encounter, make sure that they write down those questions in a notebook so that when they do go to see their clinician at the next appointment, they can make the most of that encounter by knowing that they’re going into that encounter, prepared with questions and able to summarize the way that they’ve been feeling over the last couple of weeks or months since their last appointment. So education is really always at the center of empowerment.
How Can Myeloma Patients Advocate for the Best Care?
How Can Myeloma Patients Advocate for the Best Care? from Patient Empowerment Network on Vimeo.
Dr. Peter Forsberg shares advice for myeloma patients on why it’s important to speak up about symptoms and side effects, how to become a better partner in their care, and the role of a second opinion.
Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.
See More From The Pro-Active Myeloma Patient Toolkit
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Myeloma Treatment Decisions: What’s Right for You Resource Guide |
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Transcript:
Katherine:
What is some key advice that you give patients when they’re considering their treatment options?
Dr. Forsberg:
Well, I think one important one is to always feel comfortable communicating with your provider. I think that there no by the book questions, list of questions, that’re the right questions to ask. I think the more important thing is trying to establish a good working relationship with your treatment team. Myeloma is much more of a marathon than it is a sprint. So, getting comfortable with your team, getting comfortable with a relationship and a partnership that can be often many years in duration, are really critical steps.
So, I think laying that foundation, feeling comfortable asking questions, trying to understand why. Understand how and what are tools to monitor what the myeloma will be and what indicates success or a need for something else. Those would all be critical pieces that I would encourage patients to feel empowered to be part of.
Katherine:
Patients can sometimes feel like they’re bothering their healthcare team with the comments and the questions. So, why is it important for patients to speak up when it comes to their symptoms and side effects?
Dr. Forsberg:
Well, I think feeling comfortable being vocal about what’s going on is one of the key issues to navigating myeloma successfully. Being aware of issues, even if they may seem minor or insignificant, they may be an indicator for something that is emerging in terms of a treatment related side effect that we wanna be aware of. There are treatment side effects that we are willing to work through. But it can be very broad in terms of the spectrum of how we maneuver through different side effects.
And additionally, we always want to be aware of any issues that may be going on that could be a sign for what’s happening with the myeloma. So, trying to be vocal. Not only to understand what’s going on, what our treatments are, how successful are we at any given point in time, where things stand. But also, to make sure that you are putting things on your provider’s radar are key. So, lots of folks want to be good and compliant patients and we certainly appreciate that hope. But being assertive in terms of issues that may be coming up or questions that you may have, can really make for a much more successful long-term relationship in terms of how we manage the myeloma.
Katherine:
Well, do you have suggestions on how a patient could feel more confident in speaking up and becoming a partner in their care?
Dr. Forsberg:
Well, certainly using tools like, if you found your way to this material, I think is a great first step.
Becoming a little bit more versed in the myeloma, in the language of the myeloma, what these tests that we use are. What their results might be. Using a number of great patient specific organizations are great first steps. So, being proactive about learning, to some degree about the myeloma. And then feeling comfortable asking that first questions. Once you begin the process of unlocking the myeloma and demystifying what it is and what these tests mean and where we stand, then that can really build on itself and allow folks to feel more in control of their myeloma and their myeloma journey.
Katherine:
And if a patient isn’t feeling confident with their treatment plan or their care, do you recommend that they seek a second opinion or consult a specialist?
Dr. Forsberg:
Well, I never think it’s a bad idea to think about a second opinion or seeing a myeloma specialist. Even if you feel very comfortable with your treatment plan. Myeloma’s a unique disease and our approaches for it may be somewhat different, person to person.
And your needs as a myeloma patient my change and they may change somewhat abruptly. So, having seen someone who specializes in myeloma as part of your care team, and usually it is a care team. And there’s different models we sometimes work with in terms of both local or primary oncologists, as well as more specialized academic oncologists. We’re used to working through all sorts of models to provide the best possible care for patients. So, I never think it’s a bad idea to ask about that. Because having that more robust team is usually mostly benefit without adding a lot of headache.
Advocating for Key AML Testing: Advice From an Expert
Advocating for Key AML Testing: Advice From an Expert from Patient Empowerment Network on Vimeo.
Dr. Hetty Carraway, an AML specialist at Cleveland Clinic, shares advice on advocating for yourself when diagnosed with AML, underscoring the importance of asking questions, and including your caregiver as part of the conversation.
Dr. Hetty Carraway is Director of the Leukemia Program at Cleveland Clinic. Dr. Carraway cares for patients with acute leukemia and bone marrow failure states. Learn more about Dr. Carraway, here.
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Transcript:
Katherine:
What advice do you have for patients when it comes to asking for appropriate testing and speaking up in their own care?
Dr. Carraway:
This is so important. I think patients are leery to stir the pot or be difficult. I think coming from a place of inquiry, teach me about this, that, or the other thing, help me understand this, that, or the other thing – I would like you to show me why this decision or talk with me about why this decision versus another decision might be better for me compared to somebody else.
I can’t underscore the importance of advocating for yourself and asking questions about why am I getting this drug? What are the side effects to this drug? What is my prognosis? What is different about my case versus somebody else’s situation? How do I best prepare myself in getting ready for the therapy that I’m about to go through?
Those are all important questions that patients should ask. They should certainly have people, if possible in their family be advocates for them. I welcome that, and I think that that’s a really important part of going through this type of therapy for any patient. Your physician should welcome having your involvement in that. Don’t be shy about that. It’s your health, and any investment in that the most important people in that is inclusive of you and your caregivers. They should be a welcome part of the team.
Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key
Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key from Patient Empowerment Network on Vimeo.
Charise Gleason, a nurse practitioner, provides insight as to why identifying chromosomal abnormalities is essential when it comes to targeted therapy as a treatment choice for myeloma.
Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.
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Key Considerations When Choosing Myeloma Treatment: What’s Available? |
Transcript:
Charise:
So, testing for chromosome abnormalities or changes are important when it comes to targeted therapy.
And we used to think of this more in that relapse setting. But we also look at it upfront now, because it tells us more about the path of myeloma. And there are reasons to check throughout at relapse, again, to see if something’s changed. So, with targeted therapy, we can use the translocation (11;14), for instance.
Many patients have a translocation t(11;14). It’s not a high-risk feature. But we know on clinical trial we have a drug that we’re using called venetoclax that those patients can be very sensitive to.
And so, we’re looking at this not just in translocations but in sequencing for other abnormalities or gene mutations that can help guide us with these newer therapies. And you see that across all cancer types at this point. So, you can get very specific with a patient’s type of myeloma – that this drug is going to work better because you have this mutation.
So, we look at it upfront. It guides us for risk stratification: standard risk versus high risk. And then we look at it in that relapse setting. Do we have a drug or a clinical trial that this patient will respond better to because of those abnormalities?
When we’re risk stratifying, we know standard risk, medium risk, and high risk. Those are those translocations, those gene mutations, that we know about.
But newer testing, like sequencing, gives us a lot more mutations that we don’t even know what to do with them all yet.
We don’t necessarily have drugs for all of them, but it does help guide us down the road. So, right now some common are the translocations, but also deletion 17p, which we’ve known about for a while. But maybe you see a BRAF mutation, which you typically associate with other types of cancers, but we see that in myeloma as well.
So, it helps us look at is there a drug that our myeloma patient might benefit from because they have a BRAF mutation, for instance.
