Tag Archive for: MPN care

Myeloproliferative Neoplasm Care Gaps | Effective Strategies to Improve Care

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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. 

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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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Holistic Health Strategies for MPN Patients: Integrating Nutrition, Exercise, Mental Health, and Preventive Care

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Myeloproliferative neoplasm (MPN) expert Dr. Abdulraheem Yacoub discusses ways for MPN patients to make efforts toward optimal MPN, overall health and patient well-being, and proactive patient advice. 

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“…as they are seeking the best care for their MPNs, they should also seek the best care for their global health like in nutrition, exercise, psychological health, cardiovascular risk reduction, primary cancer screening, and prevention, all the preventative healthcare vaccination. So all the global health interventions that improve your health are absolutely necessary for patients with MPNs.”

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Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

 Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

 Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

Transcript:

Lisa Hatfield:

Can you discuss any specific interventions or educational tools that have proven effective in improving symptom management and disease progression awareness for patients facing PV, myelofibrosis, or ET?

Dr. Abdulraheem Yacoub:

Patients who live with MPNs are in this for the long run, and this is a chronic health challenge they would have to endure over the rest of their lives. And having access to tools that improve their health in general is instrumental. So as we advocate always for good nutrition in any other disease all the concepts that apply to healthy living apply here very vividly. So healthy nutrition is important. We like to involve a dietician early on in our patients, although there is no specific diet that is uniquely specific for MPN, but there are certain dietary interventions that are globally of benefit to patients to be healthier. We also advocate for mental health and psychological health, and we involve our oncology psychologists to be partners with us on patients’ care and to tackle the challenges that they have to cope with as they live with a chronic cancer.

We also endorse exercise as a method of improving functionality, improving strength, improving emotional well-being, and also as a tool to battle fatigue and musculoskeletal pains. So really many of the concepts that stand correct to everybody with any chronic disease stand correct here, but the impact in MPN is a lot more profound, because those patients will live with the diseases for a long time. And all the tools that you have to improve your global health will also improve your cancer health. We’re also very strong advocates of primary prevention. So patients with MPN are at an adverse cardiovascular risk and interventions that improve cardiovascular health such as exercise, maybe seeing a cardiologist management of cardiovascular risk factors like hypertension, diabetes, hyperlipidemia can also improve the patient’s risk and reduce their MPN risks by lowering their other cardiovascular risks.

We also advocate for primary cancer prevention and screening. So patients with MPN should be also undergoing more meticulous cancer screening and prevention in order to be able to manage their…in the case of second primary malignancies to be able to address that a lot earlier in the course of those diseases and improve the patient’s odds of living a longer and healthier life. So really my [ACT]IVATION tip for patients is that as they are seeking the best care for their MPNs, they should also seek the best care for their global health like in nutrition, exercise, psychological health, cardiovascular risk reduction, primary cancer screening, and prevention, all the preventative healthcare vaccination. So all the global health interventions that improve your health are absolutely necessary for patients with MPNs.

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Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

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Myeloproliferative neoplasm (MPN) expert Dr. Abdulraheem Yacoub discusses how he approaches shared decision-making with patients, benefits of shared decision-making, and how to be proactive in elevating your own care.

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“…you have to understand that your cancer is a disease you’re going to partner with for the rest of your life. And the more skilled and knowledgeable you are, the more you can get the best care you deserve and advocate for yourself and be able to communicate your challenges with your doctors and be a participating partner in your own care.”

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Related Resources:

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

 Holistic Health Strategies for MPN Patients

Holistic Health Strategies for MPN Patients: Integrating Nutrition, Exercise, Mental Health, and Preventive Care

 Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Transcript:

Lisa Hatfield:

Dr. Yacoub, how can patients engage in shared decision-making with their healthcare providers to determine the most appropriate treatment approach for their myeloproliferative neoplasm? Whichever one that may be.

Dr. Abdulraheem Yacoub: 

Thank you. So I perceive my relationship with my patients as a partnership. I try to teach them, but I also learn a lot from them. Some patients keep up with newsletters and FDA approvals and press releases as much as, or better than any of the physicians that we work with. So, I think the more informed the patient is, the more able they are to contribute to their own well-being and to the improvement in healthcare. Many healthcare projects in the U.S. are led by patients and patient advocates. So the more involved patients are, the more aware they are of the moving parts in the field, the more they can contribute to their own improvement and their own health.

So my advice to patients is to be as involved as they can. And these are chronic cancers they will live with for the rest of their lives. So my [ACT]IVATION tip for these patients is that you have to understand that your cancer is a disease you’re going to partner with for the rest of your life. And the more skilled and knowledgeable you are, the more you can get the best care you deserve and advocate for yourself and be able to communicate your challenges with your doctors and be a participating partner in your own care.

Lisa Hatfield:

So when it comes to shared decision-making, is it very common for you to work with the patient and their local general oncologist for shared decision-making, or do you typically have a patient come talk with you, and then the patient takes the information back that they’ve learned from you to their local oncologist?

Dr. Abdulraheem Yacoub:

There are many phases and many methods of how we can collaborate with patients and their caregivers and their local providers and so forth. And this carries different forms. We see this a lot recently with the FDA approval of interferons and physicians who are in practice have not been trained to use that, and they all are interested in applying the new technology and using the new medicines in their patients. And they seek us. They actually send patients for us to co-manage so that they can learn from the process. So they’re very involved and they’re very curious and they want to learn the new medicines and how to use them and how to apply the new knowledge and how to interpret molecular results and so forth.

Everybody has a role to play. Community physicians who treat patients have a key role at delivering care to patients, patients also have a role at learning this. And our job is to teach patients and their doctors how to raise their levels to be able to to speak the same language, to be able to understand the same knowledge and to be able to contribute and make informed decisions. The more informed the patient, the more they can contribute and the more they can be active partners in the healthcare.

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How Can MPN Providers and Patients Guard Against Disease Progression?

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How Can MPN Providers and Patients Guard Against Disease Progression? from Patient Empowerment Network on Vimeo.

How exactly can myeloproliferative neoplasm (MPN) providers and patients guard against disease progression? Expert Natasha Johnson explains the likelihood of disease progression and the importance of monitoring blood cell counts and symptoms for optimal care.

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“…monitor your blood cell counts, be your own advocate. Think about if they’re changing, could it be medication, or is it disease progression? Monitor your symptoms. Look at the total symptoms score or write down your symptoms and try to record where you’re at in intervals. Are things getting worse? If they are, don’t wait three months for your next appointment. Contact your healthcare provider and ask to be seen. Ask about getting a repeat bone marrow biopsy to establish where the current disease status is because that can open up doors possibly to more treatments.”

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Related Resources:

How Can MPN Experts Help Inform Patients About Clinical Trials

How Can MPN Experts Help Inform Patients About Clinical Trials?

 Myeloproliferative Neoplasm Financial and Care Resources

Myeloproliferative Neoplasm Financial and Care Resources

 How Can Underrepresented MPN Communities Access Support

How Can Underrepresented MPN Communities Access Support

Transcript:

Natasha Johnson:

There is a risk for progression for patients with MPN. When we look at this, we know that myeloproliferative neoplasms is really an umbrella term for three different diseases that run along a continuum. And they all are unique in that they have an overactive JAK-STAT pathway. And in that, they have very similar disease characteristics and driver mutations. So with that, progression is possible. It doesn’t mean that it’ll happen. It doesn’t matter what the percentage is. We don’t know that, we can’t say it definitely happens, but it’s something that we watch for. We educate you on those signs and symptoms of progression. So this could be caught early and be activated on early. So what are signs of progression? Progression can be thought as if you start to see changes in blood cell counts.

So this could mean a decrease in hemoglobin or platelets, or a rise or decrease in white blood cell counts. Now it’s very important to remember that sometimes changes in blood cell counts is really a side effect to medication, and that needs to be thought of before you think about disease progression. But it’s changes in these counts that don’t improve despite modifying the dose of medication. Another sign of disease progression is an increase or worsening in symptoms.

And here is where it’s important to know what the symptoms are and try to think about or keep a record in where you were and then where you are at today. When we think progression may be happening, it is important that your provider order a bone marrow biopsy, because that helps to reestablish current disease status, and it helps to guide treatment. Maybe it opens doors for more treatments.

My activation tip here would be, number one, monitor your blood cell counts, be your own advocate. Think about if they’re changing, could it be medication, or is it disease progression? Monitor your symptoms. Look at the total symptoms score or write down your symptoms and try to record where you’re at in intervals. Are things getting worse? If they are, don’t wait three months for your next appointment. Contact your healthcare provider and ask to be seen. Ask about getting a repeat bone marrow biopsy to establish where the current disease status is because that can open up doors possibly to more treatments. 

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How Can MPN Experts Help Inform Patients About Clinical Trials?

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How Can MPN Experts Help Inform Patients About Clinical Trials? from Patient Empowerment Network on Vimeo.

What are optimal ways for myeloproliferative neoplasm (MPN) experts to inform patients about clinical trials? Expert Natasha Johnson shares how she prepares herself, her approach to informing patients, and how she reacts if she senses patient hesitancy.

[ACT]IVATION TIP

“…go on clinicaltrials.gov, search up MPN trials, and that will first clue you into could you be eligible and where are they being done. And then you can contact that center or ask about it where you’re being seen locally and just get information. You’re not committing to it completely. Minds can be changed at any time.”

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Related Resources:

How Can MPN Providers and Patients Guard Against Disease Progression

How Can MPN Providers and Patients Guard Against Disease Progression?

 How Can MPN Patient Advocacy Groups Help Patients

How Can MPN Patient Advocacy Groups Help Patients?

 How Can Underrepresented MPN Communities Access Support

How Can Underrepresented MPN Communities Access Support

Transcript:

Natasha Johnson:

As a provider of MPN patients, I first make sure that I am educated on what clinical trials are available and out there. And then when I see patients, I offer these options. I’m a strong, strong advocate for clinical trials because if it wasn’t for them, we wouldn’t have the medications that we have today. And just in the last several years, we’ve had many medications approved for MPNs that we didn’t have 15 years ago, and all that was done by clinical trials. I have on firsthand seen benefits of clinical trials.

So I strongly encourage patients to be a part of that. If there’s hesitancy from the patient or caregiver, I would take time to dig into that and help to answer or alleviate fears that come along with that. It’s important that the clinical trial coordinator who knows specific protocols of trials very, very well, they can come in the room or spend time on the phone with the patient to answer any questions, to alleviate fears and allow that opportunity if a patient is open and willing to do it.

So my activation tip would be first of all, go on clinicaltrials.gov, search up MPN trials, and that will first clue you into could you be eligible and where are they being done? And then you can contact that center or ask about it where you’re being seen locally and just get information. You’re not committing to it completely. Minds can be changed at any time. The clinical trials are greatly, greatly, greatly beneficial and as I said, we have what we have today because of patients who participated in clinical trials 10, 20 years ago and then have given these great opportunities to patients now. 

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How Can MPN Patient Advocacy Groups Help Patients?

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How Can MPN Patient Advocacy Groups Help Patients? from Patient Empowerment Network on Vimeo.

What are some ways myeloproliferative neoplasm (MPN) patient advocacy groups can help support patients? Expert Natasha Johnson explains different ways that advocacy groups can help MPN patients in their care, her experience with advocacy groups, and other health professionals who can aid in patient support.

[ACT]IVATION TIP

“…look out for and research MPN support groups. You can do this under the MPN Foundation, or there are other resources to find a way to attend those. You may get so much information that you were unaware of. And then also keeping in good communication with your nursing team, your healthcare team, and if any problems come up, or great barriers such as financial assistance for medication, reaching back out to the pharmacy or the pharmacist where that was sent through to ask for assistance and help.” 

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Related Resources:

How Can Myeloproliferative Neoplasm Care Barriers Be Overcome

How Can Myeloproliferative Neoplasm Care Barriers Be Overcome?

 Myeloproliferative Neoplasm Financial and Care Resources

Myeloproliferative Neoplasm Financial and Care Resources

 How Can MPN Experts Help Inform Patients About Clinical Trials

How Can MPN Experts Help Inform Patients About Clinical Trials?

Transcript:

Natasha Johnson:

There are several unsung heroes that work with the MPN population and are just not known, but offer great, great resources and can be utilized. First, I’ll start off saying with, there are foundations, for example, the MPN Foundation where it’s a large patient advocacy group that comes along and they establish support groups all over the United States, and they invite patients and caregivers to come and join, whether in-person or through Zoom. And through those meetings, sometimes experts are brought in and taught. Sometimes the nurses are brought in and taught and just provide resources, education to patients, and also just to help answer questions. Through attending those meetings, maybe you can also get in to see an MPN expert. So I would strongly encourage the use of these foundations and these support groups because these are people, that they’re not in the clinic setting day-to-day.

They may be a patient themself who has had MPN for a long time, but now they’re overseeing and heading up the support group. Sometimes it’s a family member of a patient who’s now overseeing and heading up the support group. Additionally, there are pharmacists who are well-versed in MPNs and the medications and can guide and direct exactly where to go to get help when it comes to financial assistance for treatment. And then, of course, nurses. Nurses are just such a key player here that they take the time to listen and to educate and to answer questions or direct.

And so my activation tip would be to one, look out for and research MPN support groups. You can do this under the MPN Foundation, or there are other resources to find a way to attend those. You may get so much information that you were unaware of. And then also keeping in good communication with your nursing team, your healthcare team, and if any problems come up, or great barriers such as financial assistance for medication, reaching back out to the pharmacy or the pharmacist where that was sent through to ask for assistance and help. 

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How Can Underrepresented MPN Communities Access Support?

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How Can Underrepresented MPN Communities Access Support? from Patient Empowerment Network on Vimeo.

What are some ways for underrepresented myeloproliferative neoplasm (MPN) communities to access support? Expert Natasha Johnson shares ways that she’s helped inform patients about resources and clinical  trial information to help bridge gaps in care.

[ACT]IVATION TIP

 “…try to get into a large cancer center or academic center and see an MPN expert. Many times, this is just by self-referral. Charity is sometimes provided through these. Zoom visits can be done as consults or follow-up visits. So my encouragement would be search these out, find out who the experts are, and contact them directly and see if there is any possibility or a way that you can get in to see an MPN expert for a consult so you can get the best care possible.”

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Related Resources:

How Can Myeloproliferative Neoplasm Care Barriers Be Overcome

How Can Myeloproliferative Neoplasm Care Barriers Be Overcome?

 Myeloproliferative Neoplasm Financial and Care Resources

Myeloproliferative Neoplasm Financial and Care Resources

 How Can MPN Patient Advocacy Groups Help Patients

How Can MPN Patient Advocacy Groups Help Patients?

Transcript:

Natasha Johnson:

From a nursing perspective, there are several gaps that affect our underrepresented communities. And unfortunately, these are patients who are very late diagnosed, maybe incorrectly diagnosed, and even underdiagnosed because there is difficulty with access to care and then getting treatment. And here’s where it’s important that as providers, as nurses, we’re educating the community. We’re educating the public health department on these diseases to help pick up for that. We’re making people and patients aware of these diseases to help pick up on that. And there are many resources that are available online for free.

There are also local support groups for patients with MPNs and their caregivers that you can join in-person or on Zoom that provide just education resources on new trials that are out there or new treatments that are out there. Patients themselves can research clinical trials by looking at clinicaltrials.gov and see what’s out there and contact the academic center that’s performing those trials. There’s free information online that provides recorded sessions from conferences or speakers or speaking done by the MPN experts that you can just look to and get to easily to help understand the disease, knowing the symptoms, and then guiding treatment.

If you belong to an underrepresented community, my activation tip would be to try to get into a large cancer center or academic center and see an MPN expert. Many times, this is just by self-referral. Charity is sometimes provided through these. Zoom visits can be done as consults or follow-up visits. So my encouragement would be search these out, find out who the experts are, and contact them directly and see if there is any possibility or a way that you can get in to see an MPN expert for a consult so you can get the best care possible. 

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Myeloproliferative Neoplasm Financial and Care Resources

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Myeloproliferative Neoplasm Financial and Care Resources from Patient Empowerment Network on Vimeo.

Some myeloproliferative neoplasm (MPN) patients may run into care barriers, so what can be done to help them? Expert Natasha Johnson from Moffitt Cancer Center shares her perspective on how she assists MPN patients with resources and how healthcare providers can help in overcoming care barriers.

[ACT]IVATION TIP

“…Let the healthcare team know, especially the great players here that are helpful are the nurses involved in the care team and the pharmacist who know of these outside resources to provide financial assistance so patients can get medication.”

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Related Resources:

How Can Myeloproliferative Neoplasm Care Barriers Be Overcome

How Can Myeloproliferative Neoplasm Care Barriers Be Overcome?

 How Can MPN Providers and Patients Guard Against Disease Progression

How Can MPN Providers and Patients Guard Against Disease Progression?

 How Can MPN Patient Advocacy Groups Help Patients

How Can MPN Patient Advocacy Groups Help Patients?

Transcript:

Natasha Johnson: 

When I’m speaking to MPN patients or caregivers about barriers, I really try to provide resources. All it takes is a Google search to look up the MPN Foundation or many other organizations that provide education. They provide direction to reach MPN experts. There are ways to get ahold of them and see them. Visits can be done through Zoom. Some large cancer centers even do charity care, so patients can get in who do not have insurance, but I would provide those resources whether I’m seeing that patient or I’m in the community teaching or at a supportive care group. I think it’s very, very important that patients need to know that they can access care, and it’s by researching, doing some research and being active in that care.

Secondly, when I’m speaking to patients about issues with medication costs, which can be a great barrier, my activation tip to them again, would be to let the healthcare team know, especially the great players here that are helpful are the nurses involved in the care team and the pharmacist who know of these outside resources to provide financial assistance so patients can get medication.

It’s very important, don’t let it be a barrier or stop anything or stop treatment, but pursue that by making us aware and then we can help you. 

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How Can Myeloproliferative Neoplasm Care Barriers Be Overcome?

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How Can Myeloproliferative Neoplasm Care Barriers Be Overcome? from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) providers and advocates help patients overcome care barriers? Expert Natasha Johnson from Moffitt Cancer Center shares financial resources and additional ways MPN expert care can be accessed.

[ACT]IVATION TIP

“…let the care team know there are financial resources available, whether that’s through foundations or the manufacturer itself, the care team, including the nurses and the pharmacists, can help direct and guide to get patients the medications that they need to treat their disease.”

Descargar Guía|Download Guide 

See More From [ACT]IVATED MPN

Related Resources:

How Can MPN Providers and Patients Guard Against Disease Progression

How Can MPN Providers and Patients Guard Against Disease Progression?

 How Can Underrepresented MPN Communities Access Support

How Can Underrepresented MPN Communities Access Support

 How Can MPN Experts Help Inform Patients About Clinical Trials

How Can MPN Experts Help Inform Patients About Clinical Trials?

Transcript:

Natasha Johnson: 

There are several barriers to accessing care for patients with MPNs. Specifically, the first one I would say is accessing an MPN expert. You know when people live out in the communities or there’s difficulty with transportation, or they don’t have insurance they may be seen by public healthcare or locally or not at all. And there are really minimal reasons that a patient should not be able to see an MPN expert. Nowadays that we have Zoom visits, consults can be done through Zoom, even follow-up appointments can be done through Zoom. Labs can be taken locally. We can review labs if they’ve been done by the health department or primary care physician.

But I strongly, strongly, strongly encourage all patients who are suspected to have an MPN or newly diagnosed with an MPN. Try to get in with an MPN expert. Secondly, a great barrier to MPN care is the cost of medication. We know medications are very, very expensive, and even patients that have great insurances still cannot afford these medications.

So my activation tip for that would be to let the care team know there are financial resources available, whether that’s through foundations or the manufacturer itself, the care team, including the nurses and the pharmacists, can help direct and guide to get patients the medications that they need to treat their disease.

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Emerging MPN Therapies in the Research Pipeline

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Emerging MPN Therapies in the Research Pipeline from Patient Empowerment Network on Vimeo.

What emerging myeloproliferative neoplasm (MPN) therapies are in the research pipeline? Expert Dr. Idoroenyi Amanam from City of Hope discusses MPN treatments that are under study, what the therapies target in MPN patients, and the outlook for the future of MPN care.

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Related Resources:

Have MPN Disparities Been Addressed by Institutions?

Have MPN Disparities Been Addressed by Institutions?

 Graft-Versus-Host Disease Risk for BIPOC Patients

Graft-Versus-Host Disease Risk for BIPOC Patients

 Are There Disparities in Stem Cell Transplant Outcomes

Are There Disparities in Stem Cell Transplant Outcomes

Transcript:

Lisa Hatfield:

Dr. Amanam, can you speak to any exciting new developments in MPN care or trials that you see moving forward with great progress?

Dr. Indoroenyi Amanam:

Yeah. I think for MPNs and namely really the classic BCR-able or Philadelphia chromosome-negative MPNs, which include essential thrombocythemia, polycythemia vera, and myelofibrosis. I think we have a lot of exciting therapies that are going to be possibly FDA-approved in the next couple of years. So currently, for essential thrombocythemia, really the dogma therapy is related to keeping the counts under control and giving a therapy to reduce the risk of having a blood clot or stroke. We actually are in a space where we have therapies that are going to be targeting the underlying clone or basically the cells that are driving the proliferation of these platelets that lead to high platelet counts. And so I think that’s exciting.

So we do know that, in MPN there is an overexpression of Bcl-xL, and there’s a drug that targets Bcl-xL. And we’ve seen really great responses in essential thrombocythemia. And as a segue, this drug also targets the same cells and polycythemia vera and myelofibrosis, and we’ve seen really great responses in those patients. We also have had difficulty in managing patients who have myelofibrosis, but have very low counts. And typically the FDA-approved drugs that we’ve been using actually make the counts worse.

And so there are multiple drugs that are in the pipeline that are helping patients with low blood counts. And what they do is they help increase your red blood cells and reduce your requirements for red blood cell transfusions.

And one of the drugs helps stimulate erythropoiesis, and it’s an injection. And we’ve seen really good results in reducing the risk of…or reducing the amount of transfusions that patients receive. And then another one of these drugs targets ACVR1, which we understand that in myelofibrosis, you have overproduction of hepcidin, which leads to worsening anemia. And so by targeting ACVR1, it helps control this hepcidin. And by doing that these patients have improved red blood cell counts. And so that’s another drug that likely will be coming…that will be FDA-approved very soon, and I think will help patients in this space.

We also are interested in immunotherapy. And I think in other cancers, immunotherapy has been very successful in eradicating those cancer cells and curing some patients. And so there are clinical trials looking at a vaccine which targets certain mutations that are relevant to MPN patients. And also we are interested in actually using other types of immunotherapy namely, CAR T, which really helps connect your own immune cells to these cancer cells to help clear them out. And so I think over in the next five to 10 years, there’re going to be a lot of drugs and a lot of therapies that are going to really help patients who have MPNs.

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What Are Potential Telemedicine Risks for Myeloproliferative Neoplasm Patients?

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What Are Potential Telemedicine Risks for Myeloproliferative Neoplasm Patients? from Patient Empowerment Network on Vimeo.

What risks should myeloproliferative neoplasm (MPN) patients be aware of with telemedicine? Experts Dr. AnaMaria Lopez from Sidney Kimmel Cancer Center, Dr. Krisstina Gowin from University of Arizona Cancer Center, and patient Lisa Hatfield share their perspectives and advice. Watch as they discuss potential risks in MPN patient care, how to advocate for the continuation of telemedicine, and advice for patients to work toward optimal wellness.

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Transcript:

Lisa Hatfield: 

Are there any risks or drawbacks that you see to telehealth or telemedicine for digital health?

Dr. AnaMaria Lopez: 

The most important thing is to remember that the technology is a tool, and if the person feels that there’s a limitation, so, for example, if the patient is seen and they say their heart is racing or skipping beats or something, now, there are ways, there are electronic stethoscope, so you can really do a full exam except for palpation through telemedicine. But not everybody has that even in a clinic, but certainly in our own home, we don’t have that technology. So if a patient is expressing a concern for which the clinician really feels that needs a closer evaluation, then that’s the right next step, so we’re not…the technology is a tool to help us care for people, and if it’s not all available right there, then we need to see the patient in person. So I think that’s the risk is just sometimes people may feel limited like, “Oh, well, I’m not really sure It’s okay, I’m not really sure I need to see you, or you need to go here or go there for the care.”

And the other, which is a really big threat, is that part of the reason we did 70 years work in a couple months is because it was reimbursed, and we’re reaching the end of the pandemic, the federal…and with that, the payers may go backwards. We all know that if that happens, we will go backwards in telemedicine. [chuckle] There will just be decreased, decreased use. And it may lead to people then going back to traveling for four hours, waiting, only to be told, “Oh, you know what? There’s not this. This clinical trial doesn’t work for you.” So we don’t want to lose ground. And part of not losing ground is that we really need to continue to have advocacy around reimbursement.

Lisa Hatfield: 

Thank you, Dr. Lopez. And I feel compelled, just to follow up with one more question regarding that, because I’m very passionate about this. With some of these rules and guidelines coming to an end, I know in my particular state that I will no longer be able to access my specialist. I see a myeloma specialist. We do not have any here locally. I can access a specialist via telemedicine. I will not have that opportunity. So as all of us know, there are disparities and there are financial disparities in cancer patients. There are racial disparities in cancer patients, there are socioeconomic disparities. Telemedicine has been a tremendous…has had a tremendous impact on the care and the outcomes and the quality of life of so many patients. So as a patient and as an advocate, do you have any recommendations? Do I go to my doctor and say, “Okay, how can I move forward and still talk to my specialist, who’s out of state? Do I go to my state legislature? Do I talk to my insurance company? How can we get this to continue?” Because this has had such a significant impact on the quality of life and on the outcomes for patients, who otherwise, would not have been able to access that care.

Dr. AnaMaria Lopez: 

Yeah, I mean, I think all of the above. Partnering with other advocates, the American Telemedicine Association has a map that kind of says where are all the shifting sands regarding the different rules and legislative changes. But I think it’s led us to a place, where we are all advocates and where physicians, nurses, patients, pharmacists, everybody in the same way that we do team-based care, that we do team-based advocacy and it’s all for our patients.

Lisa Hatfield: 

Great. Thank you for that. Dr. Gowin, any last words that you may have about accessing specialists or telemedicine options?

Dr. Krisstina Gowin: 

Well, I think we covered the basics, but I just want to end with just how empowering the access to digital health interventions really is. And so I don’t think there is a one-size-fits-all approach to every patient. So what I would encourage patients to do is just to really think, “How do I compliment my care? What am I missing? How do I achieve my best wellness? And how do I get those resources in my home to make them more convenient for me?” And to start doing some research and self-advocacy to really get those resources because they are out there and in almost…in every domain, there is now a digital version that is accessible to you now.

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How Is Telemedicine Influencing Personalized Medicine for MPN Patients?

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How Is Telemedicine Influencing Personalized Medicine for MPN Patients? from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) personalized medicine be influenced by telemedicine? Expert Dr. Krisstina Gowin from University of Arizona Cancer Center explains how telemedicine helps create a more personalized and precision-based approach for optimal MPN patient wellness.

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Transcript:

Lisa Hatfield: 

Dr. Gowin, can you provide or share some examples of how telemedicine is influencing personalized medicine and MPN care, and how can MPN patients best advocate for themselves to get the latest in MPN care?

Dr. Krisstina Gowin: 

Well, I think it’s going back to some of the conversations we’ve already had, is that now with telemedicine, you can really access academic centers no matter where you are. And so rural areas now can go to academic centers, very accessible without travel, and so what that lends to is more access to precision-based clinical trials, and very often now we’re doing next-generation sequencing panels for patients with MPN. We’re looking at what are the genetic features of the disease and we may be accruing trials based on those genetic features. And so that kind of conversation really only happens at academic centers, and so I think it’s really allowing those that live far away, a few hours away, to really have those personalized and precision-based conversations. And then tying in again the aspect of integrative medicine. And then what is integrative medicine all about is personalizing your treatment plan, asking what are your goals, what is your lifestyle, what is your culture, and how do we really get you on a plan that makes sense for you, that is local for you and sustainable for you to really achieve your optimum wellness?

And so if I were counseling patients listening to this, I would say, start with the in-state academic centers and say, “What are the telemedicine services there? Is there an integrative medicine department there”? And then get a quarterback within that department and say, “Okay, this is the plan,” and then that quarterback can say, “Well, now let’s look local. What do you have? What are your resources there? Let me do some homework with you and hook you up with really evidence-based high quality providers to achieve your personalized needs in your local community.” And I think that’s how we’re really going to get all of our patients in a precision and personalized approach no matter where they live, and that’s again, the beauty of telemedicine and digital health. 

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How Will Advanced Technologies Enhance Myeloproliferative Neoplasm Care?

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How Will Advanced Technologies Enhance Myeloproliferative Neoplasm Care? from Patient Empowerment Network on Vimeo.

How will myeloproliferative neoplasm (MPN) care be enhanced by advanced technologies? Experts Dr. Krisstina Gowin from University of Arizona Cancer Center and Dr. Ana Maria Lopez from Sidney Kimmel Cancer Center share information about how technology can help manage symptom burden, risk factors, and the patient experience for enhanced MPN care.

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 How Is Telemedicine Influencing Personalized Medicine for MPN Patients

Transcript:

Lisa Hatfield: 

So, Dr. Gowin, do you have anything to add on, how MPN care or just cancer care, in general, could change with different technologies? We didn’t touch a lot on things like artificial intelligence and that type of thing, and we can speak to that or any other type of technology that you’re familiar with.

Dr. Krisstina Gowin: 

Well, I think the artificial intelligence aspect is really going to change the paradigm again on how we’re designing, studies. And I think one of the biggest challenges that we have in myeloma and as well as myeloproliferative neoplasms, is to think about how do we optimally sequence our therapies to achieve best survival, right? And I think this is a wonderful problem to have. We have now not only one JAK inhibitor on the market, but several and more in the pipeline and several other therapeutic targets. And so now the question is which therapy and when do we employ it? So things like artificial intelligence will help us to answer that question with machine learning decision tree analysis, all of that is going to be answered through those kind of platforms. And so I think that is going to be a shift we will see in the next five years is many different machine-based learning algorithms to better understand those problems we cannot have tackled traditionally otherwise.

Sensors though is another one, right? And so a big thing in MPNs is not only addressing the blood counts and reducing risk of thrombosis, and to address symptom burden, but it’s really addressing lifestyle because it’s things like cardiovascular disease, stroke that really we’re worried about as some of the sequelae of having the disease and what we’re trying to prevent with therapeutics. And so even going back to the NCCN guidelines, it’s addressing cardiovascular risk factors as part of our core treatment goals. And so how do we really do that? And it’s really through lifestyle medicine and that’s where the sensors come in. And so now we have, these Fitbits and smartphones that connect to our Apple watches and we have Garmins and all these wonderful devices that are prompting us to move more, prompting us to be cognizant of our heart rate and stress response prompting us to meditate. And so I can envision those evolving over time and connecting to the EMR and being very seamlessly interwoven into our clinical trials. And we’re already doing that. In fact, we’re talking about doing one very soon in MPN patients. And so I think the sensors are gonna be another big way that we’re going to be integrating, into our clinical trials and symptom management tools.

Lisa Hatfield: 

That’s fascinating. Thank you for that. And Dr. Lopez, do you have anything to add about other technologies and how they may affect cancer care in the future?

Dr. Ana Maria Lopez: 

Sure. When Dr. Gowin mentioned the sensors, it just reminded me, we’re building this new building, patient care building and oncology will be there. And I did a tour recently, and we’re used to go to the doctor, you stop in, they get your blood pressure, they get your weight, et cetera. Here, you’ll walk in directly to your exam room and you check in at a kiosk, so you just kinda check in [chuckle] with a little robot kiosk, and then it’ll tell you where you’re going. You’ll go to Room 3, let’s say, and Room 3 will say, “Welcome, Lisa.” [chuckle] And so you know that you’re in the right place. And you’ll walk in, there’s your gown, you’ll sit in the exam chair, and the exam chair automatically is gonna take your vital signs. So it just seems, really these built-in aspects to the technology. And one of the things, again, what I just love about this work is that it’s a very interdisciplinary, multidisciplinary. And one of the projects that we were working on, which it ties into this, when I was in Arizona with the telemedicine program is we worked with the College of Architecture and with this concept of smart buildings.

Dr. Ana Maria Lopez: 

So it’s kind of like that. Why should you do these different sensors that detect, but that it could also detect. You might walk into the room and you might be really nervous as you might be really cold, and it would detect that and it would warm the room for you. Or you might be coming in and be having hot flashes and it would just cool the room for you. So the technology has so much potential to really improve the patient experience.

Lisa Hatfield: 

And that’s amazing to me. I think that would be incredible to walk into a building to have that experience, as long as it doesn’t take away the compassion and care I get from my providers. I am so fortunate to have extraordinary providers, so I don’t think it will ever take over that aspect of it, I think that is a fear people have, especially with artificial intelligence and that type of thing, I think it can only go so far. Can’t provide the humanness that’s required for patient care, so yeah.

Dr. Ana Maria Lopez: 

Yeah. These are tools. 

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Will Advancing Technologies Allow MPN Clinical Trials in Patient Homes?

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Will Advancing Technologies Allow MPN Clinical Trials in Patient Homes? from Patient Empowerment Network on Vimeo.

Will myeloproliferative neoplasm (MPN) clinical trials at patient homes be enabled by advancing technologies? Experts Dr. Krisstina Gowin from University of Arizona Cancer Center and Dr. Ana Maria Lopez from Sidney Kimmel Cancer Center share their perspectives on clinical trials models that work well with remote models and an update about the hospital at home concept.

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Transcript:

Lisa Hatfield: 

Do you think that technology has progressed enough that clinical trials might allow a patient to be at home, maybe in a more remote area and monitored remotely? Whereas in the past, that same clinical trial required them to be at the facility? Do you think that we’ve progressed to that point in some clinical trials?

Dr. Krisstina Gowin: 

You bet. Yeah. I think COVID out of necessity has forced us to do that. And I have in my own clinical trials, even with pharmacologic clinical trials conducted telemedicine visits that were approved by the sponsor. So the paradigm is shifting, and particularly when it is oral therapeutics, I think that’s really accessible when they’re IV subcutaneous, I think that has different challenges. Obviously you can’t do that as remote, but when their oral therapeutics are non-pharmacologic intervention, such as our integrative interventions, I think it really lands well to a more remote experience.

Lisa Hatfield: 

Okay. And then would that require communication between the local oncologist and maybe someone like yourself, the investigator on that clinical trial to know what is going on with that particular patient? I assume that that communication would be ongoing?

Dr. Krisstina Gowin: 

Absolutely. Always.

Lisa Hatfield: 

Okay. Yeah. All right, great. Well, thank you for that information. So, Dr. Lopez, kind of a similar question for you. What are some examples of how technology is influencing cancer care right now?

Dr. Ana Maria Lopez: 

Yeah, let me just add on the clinical trial question.

Lisa Hatfield: 

Oh, Yes.

Dr. Ana Maria Lopez: 

That there’s also the opportunity. Again, there were so many things that we thought, “Oh no, we just can’t be done.” But because of the necessity, necessity is the mother of invention, we do remote consent, so that was a big deal in the past. We can also do a televisit ahead of the appointment, and screen for the cancer clinical trials, people travel large distances for studies and instead of traveling four or five hours, and then to be told, “Oh, actually you don’t meet the criteria.” To be able to do all of that at a distance, to get the records, to get the images, to review all that needs to be reviewed. And then to say yes, and not only yes, but we can also do your consent at a distance in some situations.

And then when you come, there’s actually the more substantive, perhaps even the treatment. There’s also a large movement around hospital at home and that these patients that are eligible for that would be able…with digital support, be able to get hospital level care in some cases at home. So some of that may involve infusion, some of that…again, but that visual connectivity and in the past you really had to kind of conceptualize it, and it was kind of space aging to talk about it. But we now, we’ve all done FaceTime, so I think we all really can understand what it entails, so tremendous shifts and, we want to try to keep that momentum going for our patients. So, I do think that, there’s so many ways that technology has impacted cancer care, even when we talk about the electronic record and patients accessing the electronic record and patients having the opportunity to go into a portal and to see their labs, to see their reports…

To be able to track their changes. All of that is really, really powerful. You know, patients with…the most common I think is patients with diabetes who track their blood sugar sometimes to the minute and they can say, “Oh, I ate that and now I see the impact.” So the opportunity for monitoring, the opportunity for also bringing in experts. So let’s say there’s a patient with a rare disease and the expert is elsewhere, there might be the opportunity to bring people together. We do tumor boards. That’s just part of what we do in cancer care. And also as many…there are health systems now so that it’s not one hospital, it’s multiple hospitals together where we can bring all of those folks together, bring in local expertise, regional expertise, national expertise, all for the patient’s benefit.

So there are so many ways that technology even something as simple as the note. Now this is something we experimented with and it’s still in experimentation phase, but there were these Google classes where you could interact with the patient and as I’m talking, the Google glass would record kind of the conversation and would come up with some sort of a structure for the note. So for what that encounter had been like. So there are lots of ways of how do you capture natural language in real time to really help the workflow, the documentation process. So I think there’s aspects to help the patient, to help the families, to help the clinical teams and to help everybody work together. 

Lisa Hatfield: 

Great. Thank you. And you talked about the patient portal, and I’m one of those patients at fault of seeing a lab result before my doctor saw it and calling him or sending a message via MyChart saying, “Hey, this is going up. What’s wrong with this?” So I’m sure you don’t have to mention any names. I’m sure you’ve seen the challenges of, digital health too, are having that patient portable or portal accessible to patients. So anyway, just wanted to throw that out there that I’m sure that brings challenges to you. Also few little challenges here and there.

But at the same time, that’s so good, right? It’s so good that patients are engaged. It’s so good that you’re engaged. And I think as long as we’re communicating that yes, you may see this before me, so you may have questions and then, we just get together and answer the questions. 

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Is Technology Accelerating Progress in Myeloproliferative Neoplasm Care?

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Is Technology Accelerating Progress in Myeloproliferative Neoplasm Care? from Patient Empowerment Network on Vimeo.

Is myeloproliferative neoplasm (MPN) care being advanced by technology progress? Expert Dr. Krisstina Gowin from University of Arizona Cancer Center discusses how MPN care has benefited from technology advances and explains two MPN technology tools and how they assist in MPN patient care.

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How Can Myeloproliferative Neoplasm Patients Use Integrative Health

How Can Myeloproliferative Neoplasm Patients Use Integrative Health?

 How Can MPN Patients and Care Partners Stay Aware of Telemedicine Options

 What Are Potential Telemedicine Risks for Myeloproliferative Neoplasm Patients

Transcript:

Lisa Hatfield: 

So, Dr. Gowin, a couple of questions for you. Is technology playing a role in accelerating progress in MPN care?

Dr. Krisstina Gowin: 

Oh, absolutely. And I think some of the ways that it really accelerates progress is pulling us together. So what we need to recognize is that myeloproliferative neoplasms truly is a rare disease, and we just celebrated Rare Disease Day. But there’s a lot of challenge in treating patients and progressing the field forward in rare diseases because you can’t do the big clinical trials. It’s hard to come together because everything’s siloed, and there’s just a couple patients here, a couple patients there in each practice. But with digital health and clinical trials that are offered on a digital platform, it pulls the nation together and even the world together. And we’ve seen that. I’ve done an international survey-based analysis and I had 858 MPN patients from 52 countries participate in that survey. And so that just shows how it pulls the world together. And for the web app that we just discussed, we had 93 patients say they were interested within three weeks, and within actually a week, we identified them all and then took three weeks to actually accrue them to the trial. So it really speaks to A, how MPN patients are digitally engaged and excited about these kinds of platforms. And then B, how effective it really can be to pull the groups together.

So yes, I think it’s…and that’s really how we’re going to get progress is through these kind of interventions with a rare disease. And I hope it’s okay if we jump back to something you said, Dr. Lopez, which is, I think telemedicine is so so important to bring everyone together. And in particular, I see that on the transplant ward. And so in myelofibrosis, that’s the only curative therapy. And so many myelofibrosis patients actually go through allogeneic stem cell transplantation. And my goodness, that is a socially isolating experience. Patients are in the hospital, not uncommonly for at least 30 days and then have to be near their transplant center for three months, which often is away from home. So to pull in their support system, both through the acuity of the transplant themselves and then the couple of months after is so crucial to a successful transplantation. And I think through FaceTime and also the MPN support groups, which is very robust, the patient advocacy and the way the MPN network sticks together on a digital platform, I think is really unique and offers unique support.

Lisa Hatfield: 

Thank you. And then what role does technology play in the disease symptom management, and in particular, in clinical trials too. What role does technology play with clinical trials?

Dr. Krisstina Gowin: 

Well, I think it helps us through different, clinical trial accrual patterns, we can see who’s eligible where, so it helps us identify patients. It helps us to, understand the different kind of precision-based medicine approaches so we can start to pool the data, say for, particular mutations… ASXL1 mutations. And so it helps us in the precision medicine aspect of clinical trials and now we’re looking at symptom management and how do we really integrate that. So large survivorship platforms like Carevive, if you’ve ever heard of Carevive, is now integrating our validated symptom assessment form into the Carevive platform. So now we can really collect that data and use that to mine it for potential kind of retrospective analysis. So it’s helpful for clinical trials as well as for our clinicians and clinics to really identify changes in symptom burden.

And just as Dr. Lopez was mentioning, that we can track these over time and it can flag and say, “Oh, your symptoms are changing, they’re increasing over time,” and maybe we need to be thinking about that. And so Carevive is really kind of an electronic medical record driven it’s really a healthcare driven platform, but now there’s patient ones too. And I just learned about this two weeks ago, I was at an MPN conference in Phoenix and learned about MPN Genie. And so MPN Genie apparently, is tracking…patients are putting their symptoms in and that’s shooting that information to the electronic medical record to their doctors. And so I think that’s fantastic, ’cause, we now get that information real time and we can change our clinical management, maybe bring that patient in sooner, maybe do a bone marrow earlier. We never would’ve identified that if it weren’t for those kind of digital engagements, so I think it’s a really exciting time. And I think we’re going to see more and more of these new platforms and ways for, different EMRs and smartphones to be communicating back and forth between patients and providers. 

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