Shannon MacLaughlan: Why Is It Important for You to Empower Patients?

Why is it important to empower patients? Expert Dr. Shannon MacLaughlan from University of Illinois discusses her approach to patient care, advocacy, and empowering them in their cancer care.

 

Related Resources:

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

Nicole Normandin: Why Is It Important for You to Empower Patients?

Dr. Jennifer Ligibel: Why Is It Important for You to Empower Patients?

Dr. Jennifer Ligibel: Why Is It Important for You to Empower Patients? 


Transcript:

Shannon MacLaughlan:

I empower patients, hopefully by listening to them. I spend more of my time listening to them and learning about them than I do telling them what to do. I spend a lot of time getting to know who in their life is important in helping them make decisions and helping them lay out their goals for care and for life. I think that’s the most important thing I can do to empower someone during their treatment journey. I will often try to empower and elevate the voices of my patients even further by having them participate in the work that I do in a variety of different ways.

I have patient advocates who participate in study design. I have survivors from my practice who have made public appearances with me. We’ve done radio shows together during cervical cancer awareness month. We have involved them in higher level advocacy work. As an example, I sit on the Illinois Special Commission for Gynecologic Cancers and the chair of our Research and Policy Subcommittee.

And my co-chair on that subcommittee is a survivor herself who I’ve known since the day she was diagnosed and she went on to finish a master’s in public health and is in nurse practitioner school now. She and I work together in identifying the best ways to provide some justice and equity in cervical cancer care and outcomes. So I try to empower everyone during their cancer journey, but I also try to elevate voices with my own platforms.

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

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

 

Related Resources:

Joelys Gonzalez: Why Is It Important for You to Empower Patients?

Nicole Normandin: Why Is It Important for You to Empower Patients?

Nicole Normandin: Why Is It Important for You to Empower Patients?

Dr. Jennifer Ligibel: Why Is It Important for You to Empower Patients?

Dr. Jennifer Ligibel: Why Is It Important for You to Empower Patients? 


Transcript:

Aïcha Diallo:

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

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

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

Dr. Jennifer Ligibel: Why Is It Important for You to Empower Patients?

 

Why is it important to empower patients? Expert Dr. Jennifer Ligibel from Harvard Medical School and Dana-Farber Cancer Institute shares her perspective on how her career course in oncology has impacted evidence-based tips that she provides to empower her patients. 

 

Related Resources:

Joelys Gonzalez: Why Is It Important for You to Empower Patients?

Nicole Normandin: Why Is It Important for You to Empower Patients?

Nicole Normandin: Why Is It Important for You to Empower Patients?

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?


Transcript:

Dr. Jennifer Ligibel:

This is such a great question. And honestly a question that really set my career course in focusing on supportive care for patients with cancer. Many years ago when I first started working in oncology, my patients would often ask me, after months of chemotherapy and radiation and surgery, “Dr. Ligibel, what can I do to help myself feel better, live longer?” And there wasn’t much to tell them at that point. And that’s really why I’ve spent the last 20 years doing research and figuring out what kind of treatment modalities can people do themselves to help themselves feel better, whether it’s exercise or weight management, or changing their diets.

I think for me, talking to patients, hearing about what their concerns are, offering hope, and really sticking now to what are evidence-based practices, to tell people that yes, you can exercise, you can eat healthfully, and those things will make a difference. They’ll help you feel better, they’ll help reduce the side effects you’re having from therapy. And although we’re still studying it, these behaviors are linked to better long-term outcomes. So for me, empowering people is about listening to them and providing them with evidence-based things that they can do to help themselves feel better.

Nicole Normandin: Why Is It Important for You to Empower Patients?

 

Why is it important to empower patients? PEN Communication Director Nicole Normandin Rueda, LMSW discusses her approach to patient empowerment and support along with her passion as a social worker in patient care.

 

Related Resources:

Joelys Gonzalez: Why Is It Important for You to Empower Patients?

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?


Transcript:

Nicole Normandin:

I feel as though the job of a social worker is to fill the gaps as much as possible. Usually that means I am providing information and resources that maybe, is a new resource or nobody’s really talked to this patient about the availability before. Sometimes that means I am anticipating potential issues, and I’m trying to be on top of it. A good example of that is if I know there’s a patient that is really self-conscious about losing their hair, for example, asking their care partner, hey, you might want to get a lint roller. And, if you notice that there’s, hair falling, you can use that to pick it before it causes more stress or before it makes the patient have a little bit of a freakout because of the amount of hair that’s left behind. But at the end of the day, what I’m trying to do and what I always want to do is give patients and their families the feeling of community. I want them to know at the end of the day, you are not alone. 

The day you get diagnosed, it changes your life, and it changes all of your family’s life forever, regardless of what the outcome is. And so I want to be as much of a resource to patients and their families as I can. And the best way that I can do that is, forming relationships, asking questions, being there whenever they need, or maybe when they don’t need me, right? Sometimes I just, hey, how are you? And those are usually the times that I get more information out of them, as opposed to when it’s like a required visit or call. Just letting patients know that I’m here, and I’m doing this because I want to.

And it’s not that it’s a job, it’s because it’s a passion. Sharing evidence-based resources, organizations like Patient Empowerment Network, there are so many resources that patients, they’re so grateful to know or hear from somebody that is just able to give them just a couple tools in their tool belt that maybe they forgot about, or they didn’t even know that this resource was available. I do this because I want to be able to provide as many resources, as much of a relief to patients and their families as I possibly can. And at the end of the day, it’s why I do what I do.It’s why I’m a social worker. It’s why I continue to work with cancer patients and their families. And I will continue doing that for the foreseeable future.

Joelys Gonzalez: Why Is It Important for You to Empower Patients?

 

Why is it important to empower patients? PEN Program Manager Joelys Gonzalez discusses her methods for empowering patients, holistic approach to care, and the impact of patient empowerment on health outcomes. 

 

Related Resources:

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?


Transcript:

Joelys Gonzalez:

Empowering patients is central to my work as a social worker. For me, this means providing patients with the knowledge, the tools, the confidence they need to actively participate in their own care and actually advocate for the best healthcare that they can possibly obtain. And this could be by educating them about their diagnosis, treatment options, or what to expect during and after treatment. This can help reduce the fear and anxiety, allowing them to make informed decisions.

I also focus on promoting self-advocacy, encouraging the patients to communicate their needs and their preference, not to stay quiet, and just make sure that their words are being heard, to make sure that they are having the best access to the resources as well that can support them during their overall health. And I believe that this holistic approach in addressing not just the physical, but also the emotional, social, and psychological aspect of care ensures that patients are not just surviving cancer, but they are thriving. Empowering patients is super important to me, because it just restores that sense of control of what can be a super overwhelming situation.

Being able to have that control from day one, it’s super important, because it makes you part of your own treatment, of your own cancer journey. And from day one, cancer can take away a lot of it. But by empowering patients, we can help them regain their autonomy and their dignity. Empowered patients are often more engaged in their care, which leads to better outcomes and to lead to better communication with their healthcare team. And ultimately, the goal about this is to help patients feel supported, informed, and confident as they are navigating their journey, knowing that they are actively participating in their own care and making sure that they are engaged in the shared decision-making with their healthcare team is super important.

Dr. Cynthia Thomson: Why Is It Important for You to Empower Patients?

 

Why is it important to empower patients? Expert Dr. Cynthia Thomson from the University of Arizona discusses her approach to patient empowerment, how patient goals can vary, and her perspective on supporting patient lifestyle changes. 

 

 

Related Resources:

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?Dr. Akriti Jain: Why Is It Important for You to Empower Patients? Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

Kimberly Smith: Why Is It Important for You to Empower Patients?

Kimberly Smith: Why Is It Important for You to Empower Patients?


Transcript:

Dr. Cynthia Thomson:

Cancer patients are amazing individuals. They really are committed to their health and well-being, and they’re also committed to the health and well-being of so many around them. So I empower patients by really helping them to think internally about what it is they want to accomplish in terms of lifestyle, what it is that really is important to them. Is it getting down on the floor and playing with their grandchild? Is it being able to have regular bowel movements every day? Is it to handle all these symptoms, maybe long-term fatigue or whatever, and really try to meet them where they are so that they really can achieve the goals that are important to them, not what’s important to me.

And I think that as I’ve worked with patients over decades, what I realize is that when you start where they are and support the patient along the way, they will make positive change. A lot of people will say, oh, no one will change their diet.

People aren’t ever going to eat healthy. Why do you worry about that? And I say, well you know, if that were the case, I think I would have quit doing this a long time ago. I would have realized that. But the opposite is true. People are looking for support, for information, for that opportunity to empower themselves to be healthier. They want to be healthier. It’s just that sometimes they need some help along the way to figure out what it is they need to achieve that goal.

Dr. Brad Kahl: Why Is It Important for You to Empower Patients?

 

Why is it important to empower patients? Expert Dr. Brad Kahl from Alvin J. Siteman Cancer Center discusses his methods and reasoning for empowering patients and how he prepares patients to participate in shared decision-making.
 

Related Resources:

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?Dr. Akriti Jain: Why Is It Important for You to Empower Patients? Dr. Michael Grunwald: Why Is It Important for You to Empower Patients?Dr. Michael Grunwald: Why Is It Important for You to Empower Patients? Kimberly Smith: Why Is It Important for You to Empower Patients?

Kimberly Smith: Why Is It Important for You to Empower Patients?


Transcript:

Dr. Brad Kahl:

I empower my patients by giving them information. I really try to educate them about the disease. Some of the approaches in follicular lymphoma are counterintuitive, and it’s impossible for a patient or a family to understand why we’re doing what we’re doing if they don’t have a good understanding of the disease itself. Same with the treatment options. We have to talk through the treatment options. Pros, everything has pros and cons.

And so I really try hard to educate the patient and the more educated they can become, the more they can participate in shared decision-making. In follicular lymphoma there’s often a lot of choices to make good choices. And the more the patient is educated and they understand, the more they can participate in the shared decision-making. And that’s the way I like to operate whenever possible.

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

 

Why is it important to empower patients? Expert Dr. Akriti Jain from Cleveland Clinic discusses her methods of educating and empowering her patients and how empowerment sets patients on their path to optimal cancer care.
 

Related Resources:

MPN Care Barriers | Gaps in Patient-Centered Care

MPN Care Barriers | Gaps in Patient-Centered Care

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

Kimberly Smith: Why Is It Important for You to Empower Patients?

Kimberly Smith: Why Is It Important for You to Empower Patients?


Transcript:

Dr. Akriti Jain:

Empowering my patients is very important to me because I want to make sure when a patient leaves my clinic appointment they have a basic understanding of the disease that we’re fighting together. I try to explain to them basic understanding of how a bone marrow functions, where it is present, it’s in their long bones, and then draw them a chicken scratch of what MDS is and what MPN is, what a myeloproliferative neoplasm actually entails, how it is diagnosed, print them out their bone marrow biopsy reports so that they understand where the pathologist is seeing the issues.

And this is, again, very important because if a patient understands what they’re fighting, what we’re fighting together, they’re more likely to pay attention, they’re more likely to be more compliant, they’re more likely to adhere to what you recommend, get those lab tests, come to their visits, take the medications, and call you if they have concerns or questions.

Kimberly Smith: Why Is It Important for You to Empower Patients?

 
Why is it important to empower patients? Hematology-oncology nurse practitioner Kimberly Smith from Duke Health shares her approach to moving patients from a place of helplessness to becoming key players in powerful decisions.
 

 

Related Resources:

MPN Care Barriers | Gaps in Patient-Centered Care

MPN Care Barriers | Gaps in Patient-Centered Care

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?


Transcript:

Kimberly Smith:

I empower my patients by giving them information, education. I try to educate each one of my patients, their family members. It’s very important to me, because I’ve been on that side. And I know how it is to be sitting there and not understanding anything that’s going on and not knowing where do I go from here, how is this treated, how is this person going to be managed, what can I do to help, and feeling helpless.

I want my patients and their families to always feel powerful. I want them to always feel like they are part of this team. Nobody’s just making decisions for them. They have a voice, and it is our job to advocate for them and help them strengthen their voice. That’s why it’s important to me.

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.

Myeloproliferative Neoplasm Care Gaps | Effective Strategies to Improve Care

MPN experts Dr. Akriti Jain from Cleveland Clinic and Kimberly Smith from Duke Health discuss effective strategies to improve MPN care including how patient diagnosis and symptoms can vary, best practices for shared decision-making, patient-provider communication, and family support. 

Download Resource Guide

See More from EPEP MPNs

Related Resources:

MPN Care Barriers | Gaps in Patient-Centered Care

MPN Care Barriers | Gaps in Patient-Centered Care

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

What Are Key Challenges and Potential Solutions In MPN Management?

What Are Key Challenges and Potential Solutions In MPN Management?


Transcript:

Dr. Nicole Rochester:

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?

Kim 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?

Kim 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.


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What Are Key Challenges and Potential Solutions In MPN Management?

In MPN management, what are some common challenges and possible solutions? Experts Dr. Akriti Jain from Cleveland Clinic and Kimberly Smith from Duke Health discuss the challenges of practice-related barriers including treatment options and navigating the logistics of treatment access. 

Download Resource Guide

See More from EPEP MPNs

Related Resources:

MPN Care Barriers | Gaps in Patient-Centered Care

MPN Care Barriers | Gaps in Patient-Centered Care

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

Myeloproliferative Neoplasm Care Gaps | Effective Strategies to Improve Care

Myeloproliferative Neoplasm Care Gaps | Effective Strategies to Improve Care


Transcript:

Dr. Nicole Rochester:

Ms. Smith, can you speak to some of the emerging challenges and opportunities in the management of myeloproliferative neoplasms?

Kim 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.


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