Recognizing Implicit Bias and Respecting Patients’ Choices Infographic

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Recognizing Implicit Bias and Respecting Patients’ Choices_EPEP CLL

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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.

Peer Insights | The Power of Patient-Centered Care

What’s important to know about patient-centered care? PEN’s Aïcha Diallo discusses key aspects and benefits of patient-centered care, the impact of patients engaging in shared decision-making, and treatment adherence in relation to cultural factors. 

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Related Resources:

Peer Insights | Appreciating Patient Diversity and Respecting Cultural Differences

Peer Insights | Appreciating Patient Diversity and Respecting Cultural Differences

Peer Insights | Cultural Humility Case Studies and Practical Applications

Peer Insights | Cultural Humility Case Studies and Practical Applications

Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

Transcript:

Dr. Nicole Rochester:

Every one of us wants to receive care that addresses our individual needs. It seems like a given, but unfortunately, this is not the same story for everyone. I’m fortunate to be joined today by Patient Empowerment Network’s Vice President of Programs, Aicha Diallo, to discuss this important topic. Aïcha, what are the key aspects of patient-centered care? And why is this an important area for providers to focus on?

Aïcha Diallo:

The key aspects of patient-centered care include respecting your patients’ preferences, hearing them out, and really understanding where they’re coming from and what they want. Coordination and integration of care is also very, very important. Providing patients the information and the education that you can provide to them. And if those resources are not available, it’s important to seek the resources and be able to connect them with even additional external resources that they may benefit from.

It’s also providing them the access to care that they need. It’s physical comfort. It’s providing emotional support. It’s that continuity and transition and that involvement of family and friends. It’s making them a part of the patient, a part of them being present, about them making the decision to either engage in a specific treatment option or coming up with the best treatment option for them. And why this is important for healthcare professionals to be aware of is because it allows them to meet their patients and their families exactly where they are and be able to provide them with the equitable care and the services that they need.

Dr. Nicole Rochester:

Thank you so much, Aïcha. Can you speak to the importance of involving patients in decision-making processes at the outset of care?

Aïcha Diallo:

Absolutely. Involving your patient in general and shared decision-making is key. I would say it’s important to be able to speak to your patients and speak with your patients as opposed to speaking at them. It’s about respecting where they’re coming from and what their needs and their wants are. It’s about opening up the door for them to share what their goals are, so they could be involved in their care. It’s about giving them that platform, the autonomy to make their own decisions and to be at the driver’s seat of their care.

Dr. Nicole Rochester:

Thank you. And lastly, Aïcha, we know that cultural factors can sometimes impact treatment adherence. So given PEN’s strong presence in the cancer community, I’d love for you to talk about treatment adherence and its connection to various cultural needs and differences.

Aïcha Diallo:

Adherence is really important. Without shared decision-making I feel that it’s very difficult to obtain as a healthcare professional adherence from your patients. One thing that is important for healthcare professionals to understand is that adherence is an active choice that is made by the patient to follow a daily regimen, whether that is taking their medications or exercising every day or even honoring their doctors’ appointments. And while this may have been a conversation with their patient or even prescribed by the healthcare teams, one thing to keep in mind is that the patient is taking the responsibility for their own well-being and is making those actions, not because they were told, but because they fully understand what needs to be done in order for them to achieve their goals.

And without great communication and without the ability to engage your patients in their care, some patients may feel or may be compliant while they’re not necessarily adherent. So that may create a confusion, but what you really need is both. Some of your patients may not feel entirely comfortable asking you questions that could even benefit them because maybe culturally speaking, they don’t want to question their healthcare professional, they don’t want to question their authority. So they will do as they’re told, but it’s important for patients to be adherent and compliant. It’s important to give them that platform to make them feel comfortable and present in their care, so they could be entirely engaged and empowered.

Dr. Nicole Rochester: 

Absolutely. Thank you so much, Aicha. Another wonderful discussion and thank you for your expertise.

Aïcha Diallo:

Absolutely. Thank you very much.


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Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

What is implicit bias, and how can patients’ choices be respected? PEN’s Aícha Diallo discusses implicit bias and unconscious bias, how to engage with patients to practice cultural humility, and tips for involving patients and families in shared decision-making. 

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Related Resources:

Peer Insights | Appreciating Patient Diversity and Respecting Cultural Differences

Peer Insights | Appreciating Patient Diversity and Respecting Cultural Differences

Peer Insights | Cultural Humility Case Studies and Practical Applications

Peer Insights | Cultural Humility Case Studies and Practical Applications

Peer Insights | The Power of Patient-Centered Care

Peer Insights | The Power of Patient-Centered Care

Transcript:

Dr. Nicole Rochester:

As healthcare providers, we know that it’s incredibly important to recognize and to respect patients’ choices. For many of us, that is a given, but I also think it’s important to be thoughtful as we explore this question. So I have the privilege today of connecting with the Patient Empowerment Network’s Vice President of Programs, Aïcha Diallo, a leading voice on this topic. It’s such a pleasure to connect with you today, Aïcha.

Aïcha Diallo:

Thank you so much for having me.

Dr. Nicole Rochester:

So, Aïcha, can you define what is bias? And can you also discuss the different types of bias?

Aïcha Diallo:

Absolutely. Implicit bias is also known as unconscious bias. It is a cognitive process that is intentionally activated when a person automatically classifies another person as a member of a group and applies stereotypical characteristics of the group. This could be positive or negative, but the issue with implicit bias is that it could be common and persistent, and it can be activated very quickly and unknowingly by situational cues.

That could be the color of someone’s skin or an accent that they’re hearing, and it can also impact a person’s perception of a situation and a memory, and even their behavior without that person’s intent and awareness. So the different types of biases that you will find in the healthcare system are race and ethnicity bias, age bias, sexual identity, gender, education, even appearance and ableism. Social-economic status and geographic location are also huge biases that tend to be seen.

The impact that bias does have on healthcare delivery is that it can lead to lower quality care among patients, specifically from underrepresented communities, and it can also result in, unfortunately, incorrect diagnosis, mistakes, delays in treatment, and even further mistrust and distrust from the patient community. So it’s really important for healthcare professionals to be aware of any implicit bias that they may have and really work hard to remove them. And they also have to pay very close attention to any blind spots that can be often present, that can obstruct their views. And the other thing I would also add is that they need to really have the willingness to suspend the “what they know” about a person based on generalizations about their culture and really be open to what their experience as their personal culture.

Dr. Nicole Rochester:

Thank you, Aïcha. And so, you mentioned the types of biases, and you mentioned the impact that they have on healthcare delivery and the type of care that our patients receive. You also said that it’s unconscious. And so I would love for you to share how can providers actually recognize this implicit bias? Are there some practical ways that they can actually recognize their biases?

Aïcha Diallo:

Absolutely. I think it’s very important to reflect on one’s own identity. It’s important to keep in mind that your patient should be treated equitably, with respect, with dignity, empathy, regardless of what they look like, who they are, what language they speak or where they live. I would also and continue to encourage to practice cultural humility, which is really taking a step back, listening to your patients, being present, allowing them to share what their thoughts, questions, concerns are, and to really avoid making any assumptions. And I would also add that it’s important to participate in courses to educate yourself on health disparities and cultural identities. Also check in with your colleagues and make sure that you are on the same page with the way that you are interacting with patients.

Dr. Nicole Rochester:

And finally, can you explain the importance of respecting patients’ choices even when they differ from our own and how this extends to including our care partners in the process?

Aïcha Diallo:

I think it’s very important to understand as a healthcare professional that you are the expert at what you do, but your patients and their families are experts at who they are, what they feel, what they want and need. So making sure to always engage in shared decision-making and including them in the process as well as their care partners in all the conversations and remembering that their care partners are an essential part of their loved one’s care and often make the decisions with or even for them.

So listening to both your patients and their care partner or whoever is in the room with them, that also extends to any additional loved ones that they bring with them. Ask them about their goals and their concerns. Make sure that you make eye contact with them. It makes them feel included as well in the process and direct your questions to both parties. I think applying these strategies are very important in this process.

Dr. Nicole Rochester:

That was wonderful. Thank you so much, Aicha. So if I could summarize what you’ve said, you’ve told us about bias and that implicit bias is unconscious, and so we’re typically not aware of it. You’ve shared some strategies for us to mitigate our biases, and you’ve talked about the importance of including our patients and their family members and support people in the decision-making. So thank you so much for sharing your expertise with us today.

Aïcha Diallo:

Absolutely.


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Peer Insights | Cultural Humility Case Studies and Practical Applications

What are some cultural humility examples? PEN’s Aicha Diallo discusses the concept of cultural humility and provides real-world scenarios of healthcare provider reactions to perceptions about patients versus exercising cultural humility.

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Related Resources:

Peer Insights | Appreciating Patient Diversity and Respecting Cultural Differences

Peer Insights | Appreciating Patient Diversity and Respecting Cultural Differences

Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

Peer Insights | The Power of Patient-Centered Care

Peer Insights | The Power of Patient-Centered Care

Transcript:

Dr. Nicole Rochester:

What do real-world scenarios teach us about cultural humility? I have the pleasure of connecting with Aïcha Diallo, Vice President of Programs at Patient Empowerment Network to really dive into this topic. Aïcha, could you share some real-life scenarios or challenges where cultural humility comes into play in healthcare settings?

Aïcha Diallo:

First, I think it’s important to get a better understanding of what cultural humility is. As a healthcare professional, practicing cultural humility is taking a step back to say, I have a patient in front of me, or I’m interacting with a patient, and I don’t know who they are. So I’m going to take a step back. I won’t make any assumptions. I’m going to listen to them. I’m going to let them share with me who they are, where they’re from, what their needs are, and what’s going on in order to meet them exactly where they are and to understand who is sitting in front of you and be able to then engage in shared decision-making and coming up with the best treatment option for them. So really, taking the time to see the unique elements of your patients instead of automatically characterizing them can also demonstrate respect and can help healthcare professionals give their patients the care that they need and want.

For instance, a physician is seeing a patient and to him the patient looks Latina. The patient has an accent, and the doctor assumes that she doesn’t speak English and automatically requests medical translation services for her in Spanish. Come to find out that the patient is fluent in English, is not Latina, but is from North Africa. So in this scenario, if the physician had taken the time to really listen to their patient and ask more questions and not make any assumptions, it would have really helped them identify their patient’s needs during their diagnosis.

Another scenario that I have that we should always try to avoid is, for instance, a patient of color comes to their doctor’s appointment, and the doctor assumes that they live in a lower income neighborhood and may not have a high level of education. And with that, assumes and chooses not to share any information about clinical trials with them because they believe that they may not be able to access those resources.

So one of the things that I would encourage that we do is to work really hard to remove any biases that we have and to really continuously practice cultural humility with your patients and their families and really remember that we can all be on the same page even though we have different stories.

Dr. Nicole Rochester:

Thank you, Aïcha, for explaining what cultural humility is and for sharing those life scenarios. Can you talk about what these actions look like in reality, how can providers truly apply cultural humility in their daily practice?

Aïcha Diallo:

I think it’s important to identify any personal biases that you may have, reflect on your own identity, remember to treat your patients with respect, dignity, and empathy, and listen to them more, hear them out, find out who they are, what their needs are, what their goals are. Have conversations with them, it’s important to hear them share where they’re coming from and where they’re headed, and this will really help in terms of coming up with the best treatment option for them. I think it’s also important to participate in courses to educate oneself on the different aspects of cultural humility, and how do you integrate that within your daily practices.

I think it’s important to not confuse cultural competency with cultural humility and really understand that you cannot be an expert at somebody else’s culture, that you have to take a step back and be humble and really listen to them and let them tell you and share with you who they are and what really matters to them. I think it’s also important to avoid making any assumptions as you could entirely be wrong, unless the person shares with you exactly what is important to them and who they truly are. And don’t forget to show some interest in what your patients are saying. And remember to recognize and really celebrate the uniqueness of their backgrounds, of their trade, and really do see them as people. I think that’s very important.

Dr. Nicole Rochester:

Aïcha, thank you so much for, again, sharing your wisdom. You’ve taught us a lot about what cultural humility is, the difference between cultural humility and cultural competence, and some real-life scenarios that we can all take away and some tactics for truly applying cultural humility in our practice. Thank you so much.

Aïcha Diallo:

Thank you for having me.


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Peer Insights | Appreciating Patient Diversity and Respecting Cultural Differences

How can diversity be appreciated by healthcare providers? PEN’s Aicha Diallo discusses diversity, how to recognize cultural values and unique backgrounds, and the benefits of appreciating diversity.

Download the Appreciating Diversity Infographic

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Related Resources:

Peer Insights | Cultural Humility Case Studies and Practical Applications

Peer Insights | Cultural Humility Case Studies and Practical Applications

Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

Peer Insights | Recognizing Implicit Bias and Respecting Patients’ Choices

Peer Insights | The Power of Patient-Centered Care

Peer Insights | The Power of Patient-Centered Care

Transcript:

Dr. Nicole Rochester:

Appreciating diversity means many things to many people. As healthcare providers, it’s important to navigate complex cultural landscapes and also learn how to foster genuine connections across differences. Well, Patient Empowerment Network’s Vice President of Programs, Aicha Diallo, is joining me to look at the power of valuing diversity in our patients and their families. Aicha, how can we as healthcare providers appreciate the unique differences among our patients, and how does this enrich healthcare?

Aïcha Diallo:

The ways to appreciate the uniqueness of your patients can include a lot of different strategies, but I would really focus on putting the patient at the center of everything you do. It’s important to also recognize and celebrate their cultural values and the uniqueness of their backgrounds. Do practice cultural humility, which means listen more, make less assumptions, focus on what your patients and their families are sharing with you, ask them questions that will allow you to get a better understanding of who they are and what their needs are. Also show respect and see your patients as people. And this is shown to really help in terms of improving healthcare outcomes for everyone, especially patients who are in underrepresented communities. And this very much helps in terms of further decreasing health disparities.

Dr. Nicole Rochester:

Well, thank you so much, Aicha Diallo, Vice President of Programs at Patient Empowerment Network. We appreciate your wisdom. 


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EPEP CLL Resource Guide en Español II

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ES Fine-Tuning CLL Dose Modification and Side Effect Management Strategies CLL Resource Guide

Download Resource Guide | Descargar guía de recursos

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EPEP CLL Resource Guide II

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EN Fine-Tuning CLL Dose Modification and Side Effect Management Strategies CLL Resource Guide

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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

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Related Resources:

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

Innovative Strategies for Healthcare Provider Education on Side Effect Management in CLL

Innovative Strategies for Healthcare Provider Education on Side Effect Management in CLL

Can Digital Tools Enhance Side Effect Management in CLL?

Can Digital Tools Enhance 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.


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Can Digital Tools Enhance Side Effect Management in CLL?

Can Digital Tools Enhance Side Effect Management in CLL? from Patient Empowerment Network on Vimeo.

Experts Dr. Andres Chang from Emory University and Dr. Daniel Ermann from Huntsman Cancer Institute highlight the benefits of platforms like X (formerly Twitter) and LinkedIn for providers seeking up-to-date information, while advising caution for patients, recommending they rely on trusted resources and direct communication with their healthcare team to navigate potentially misleading online content.

Download Resource Guide  | Descargar guía de recursos

See More from EPEP CLL

Related Resources:

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

Innovative Strategies for Healthcare Provider Education on Side Effect Management in CLL

Innovative Strategies for Healthcare Provider Education on Side Effect Management in CLL

How Can CLL Patients and Providers Be Empowered for the Best Care?

How Can CLL Patients and Providers Be Empowered for the Best Care?

Transcript:

Dr. Nicole Rochester:

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.


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Innovative Strategies for Healthcare Provider Education on Side Effect Management in CLL

Innovative Strategies for Healthcare Provider Education on Side Effect Management in CLL from Patient Empowerment Network on Vimeo.

What are some strategies and approaches to CLL side effect management? Experts Dr. Andres Chang from Emory University and Dr. Daniel Ermann from Huntsman Cancer Institute discuss ways they provide information on CLL side effect management to other healthcare providers.

Download Resource Guide  | Descargar guía de recursos

See More from EPEP CLL

Related Resources:

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

Can Digital Tools Enhance Side Effect Management in CLL?

Can Digital Tools Enhance Side Effect Management in CLL?

How Can CLL Patients and Providers Be Empowered for the Best Care?

How Can CLL Patients and Providers Be Empowered for the Best Care?

Transcript:

Dr. Nicole Rochester:

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.


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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.

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Innovative Strategies for Healthcare Provider Education on Side Effect Management in CLL

Innovative Strategies for Healthcare Provider Education on Side Effect Management in CLL

Can Digital Tools Enhance Side Effect Management in CLL?

Can Digital Tools Enhance Side Effect Management in CLL?

How Can CLL Patients and Providers Be Empowered for the Best Care?

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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How Can We Effectively Manage Dose Adjustments to Balance Efficacy and Toxicity in CLL?

How Can We Effectively Manage Dose Adjustments to Balance Efficacy and Toxicity in CLL? from Patient Empowerment Network on Vimeo.

For CLL dose modification, what are some techniques to optimize efficacy and to minimize  toxicity? Experts Dr. Andres Chang from Emory University and Dr. Daniel Ermann from Huntsman Cancer Institute discuss common side effects they’ve seen in CLL patients and techniques they used for optimal care with minimized toxicity. 

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Optimizing CLL Therapy: Strategies for Dose Escalation and Reduction

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Addressing Practice Gaps in CLL Therapy: Overcoming Barriers and Enhancing Patient Care

Addressing Practice Gaps in CLL Therapy: Overcoming Barriers and Enhancing Patient Care

Transcript:

Dr. Nicole Rochester:

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.


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