MPN-Related Complications | Are BIPOC Patients at Higher Risk?

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MPN-Related Complications | Are BIPOC Patients at HIgher Risk? from Patient Empowerment Network on Vimeo.

Are BIPOC myeloproliferative neoplasm (MPN) patients at higher risk of MPN-related complications? Expert Dr. Idoroenyi Amanam from City of Hope explains risk factors for MPN-related complications and proactive questions to ask your doctor.

[ACT]IVATION TIP:

“If you have a myeloproliferative disorder, I would want you to check with your doctor if you have a risk or you do have diabetes or high blood pressure, high cholesterol, and if so, how can you improve that diagnosis in order to decrease your risk or complications related to your MPN.”

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Are MPN Risks and Outcomes Impacted by Race or Ethnicity

Are MPN Risks and Outcomes Impacted by Race or Ethnicity

 How Can MPN Clinical Trials Be Diversified?

How Can MPN Clinical Trials Be Diversified?

 Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Transcript:

Lisa Hatfield:

Dr. Amanam, what risk factors put the Hispanic and/or the Black population at a larger risk for MPNs?

Dr. Indoroenyi Amanam:

Yeah. So conventional risk factors such as atherosclerosis, high blood pressure, high cholesterol, diabetes, and smoking. We do know that in studies that those factors, potentially put you at higher risk for complications that are associated with myeloproliferative disorders. And we also know that, and, for example, if you’re an African American male, two in five African American males have high blood pressure. And when we look at all comers in the United States, only about a third of people have high blood pressure. So in that setting alone, we know that if you have high blood pressure, you have a higher risk for these complications-associated MPNs. And we know that African American males have a higher risk for that, so I think those things are…that example is a clear indicator that really identifying these basic risk factors that are related to diet, exercise, your weight, and other behavioral, possibly behavior-related factors may put you at higher risk to have complications from MPNs.

So, Hispanics, for example, have you twofold, they’re twofold higher risk to be diagnosed with diabetes than Caucasians. So that’s another example. And so I would say for MPN, that’s actually low hanging fruit. That means we don’t have to give you a new therapy or a MPN-related therapy. We can help you by improving your diet. Really giving counseling for cessation of smoking, really, education related to physical activity and exercise. I do believe that those are modifiable risk factors that we can address. And MPN physicians or cancer doctors can help their patients by really educating them in that way.

Activation tip for this question. If you have a myeloproliferative disorder, I would want you to check with your doctor if you have a risk or you do have diabetes or high blood pressure, high cholesterol, and if so, how can you improve that diagnosis in order to decrease your risk or complications related to your MPN. 

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Have MPN Disparities Been Addressed by Institutions?

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Have MPN Disparities Been Addressed by Institutions? from Patient Empowerment Network on Vimeo.

Have myeloproliferative neoplasm (MPN) disparities been addressed by institutions? Expert Dr. Idoroenyi Amanam from City of Hope explains MPN disparities that need to be improved, how institutions can collaborate on improvements, and how patients can advocate to lessen disparities.

[ACT]IVATION TIP:

“…we need to ask and understand the biology of different groups a bit better, and I would ask my provider, is your institution working towards that goal?”

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Related Resources:

Are MPN Risks and Outcomes Impacted by Race or Ethnicity

Are MPN Risks and Outcomes Impacted by Race or Ethnicity?

 MPN-Related Complications | Are BIPOC Patients at Higher Risk

MPN-Related Complications | Are BIPOC Patients at Higher Risk?

 Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Transcript:

Lisa Hatfield:

So, Dr. Amanam, what can institutions do to better address racial and socioeconomic disparities in MPNs? And what has changed? Have there been improvements in that?

Dr. Indoroenyi Amanam:

Yeah, I think that along the lines of improving access to care and understanding what are the socioeconomic reasons for poor outcomes in specific groups, I do believe that from a scientific perspective, we have to understand why some specific groups have poor outcomes. So what are the biologic differences? And I do believe that centers should work together to get this understanding especially since MPNs are a rare disease. And each institution may not have the numbers to really be able to answer those questions.  So my activation tip for this question is, we need to ask and understand the biology of different groups a bit better, and I would ask my provider, is your institution working towards that goal?

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Are There Any MPN Disparities in Subtypes and Genetics?

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Are There Any MPN Disparities in Subtypes and Genetics? from Patient Empowerment Network on Vimeo.

Are there any myeloproliferative neoplasm (MPN) disparities seen in subtypes and genetics? Expert Dr. Idoroenyi Amanam from City of Hope explains what studies have shown, the role of access to care, genetics of African Americans, and questions to ask your doctor. 

[ACT]IVATION TIP:

“…if you have a myeloproliferative neoplasm and you have some specific complications, and there are treatment options offered to you, I would ask your provider if there are any differences in outcomes related to if you are a Hispanic woman or if you’re a Black male, or if you’re a Caucasian female, I think it’s important to understand if there are potentially differences in the outcomes related to the treatments, and then you can maybe tailor your treatment specific to your ethnicity and sex.”

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Related Resources:

Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

 MPN-Related Complications | Are BIPOC Patients at Higher Risk

MPN-Related Complications | Are BIPOC Patients at Higher Risk?

 Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Bone Marrow Registries | What Myeloproliferative Neoplasm Patients Should Know

Transcript:

Lisa Hatfield:

Dr. Amanam, can you speak to the disparities seen in MPNs and other subtypes and the role of genetics?

Dr. Indoroenyi Amanam:

Yeah, I think this is a great question, especially in the context of when we think about socioeconomic and racial disparities. I think that it is very important to continue to address those issues. I think the Affordable Care Act assisted in giving wider access to some patients who would not have the opportunity to receive care. But we have to go beyond the idea that race is a social construct. I think there are biologic differences. There are genetic hereditary differences between different groups. 

When you look at African Americans and you look at their genes and the median amount of genes of African descent. About half of African Americans have less than 80 percent of genes of African descent, which means that they’re biologically…there are biological differences that are related to their experience here in America and in the Western Hemisphere. And they have a more diverse gene pool, which may contribute or not contribute to cancers and other diseases. Other studies to really understand what are the scientific biologic hereditary differences and how we can improve those outcomes once we understand those. And so for MPNs, we don’t really have a good understanding of that, and I think that’s definitely a space for all of us within this disease for us to really improve upon.

My activation tip for this question would be, if you have a myeloproliferative neoplasm and you have some specific complications, and there are treatment options offered to you, I would ask your provider if there are any differences in outcomes related to if you are a Hispanic woman or if you’re a Black male, or if you’re a Caucasian female, I think it’s important to understand if there are potentially differences in the outcomes related to the treatments, and then you can maybe tailor your treatment specific to your ethnicity and sex.

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Are MPN Risks and Outcomes Impacted by Race or Ethnicity?

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Are MPN Risks and Outcomes Impacted by Race or Ethnicity? from Patient Empowerment Network on Vimeo.

Are myeloproliferative neoplasm (MPN) risks and outcomes impacted by patient race or ethnicity? Expert Dr. Idoroenyi Amanam from City of Hope explains common MPN symptoms, potential risks and outcomes, and patient advice for optimal care.

[ACT]IVATION TIP:

“…if you have stroke, heart attack, blood clots, abnormal counts, please follow up with your doctor and ensure that you get referred to the appropriate specialist to help assist in managing your complications.”

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Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

 What Does the Future of Myeloproliferative Neoplasm Care Look Like?

What Does the Future of Myeloproliferative Neoplasm Care Look Like?

 MPN-Related Complications | Are BIPOC Patients at Higher Risk

MPN-Related Complications | Are BIPOC Patients at Higher Risk?

Transcript:

Lisa Hatfield:

Dr. Amanam, how does race impact clinical MPN outcomes or complications? And are certain populations more susceptible to getting MPNs?

Dr. Indoroenyi Amanam:

Yeah, it’s a great question. I think, because of the fact that symptoms are not as clearly related to MPNs as opposed to some other diseases. So the major presenting symptoms for MPNs are related to high blood pressure or some other vascular abnormality, including strokes or blood clots. It takes a little work to diagnose MPN patients, and half of them are asymptomatic. And if you actually look at diagnosis rates, they’re one to three cases per 100,000 per year. And so this is very rare, and I think that we don’t have enough data to really understand if some groups are at higher risk to develop MPNs than others.

We have looked at incidences of thrombotic events in patients who have MPNs, and we tried to see if there was a difference between racial groups, and we didn’t. We did see that if you’re younger, you do have a higher risk of thrombosis over time, but there was no difference for if you were white, Hispanic, or African American.

What we did find though, in a small single center study is that if you are non-white, there’s a higher risk of death over time. And I think we still need a lot of work to get a better understanding as why that’s the case. So far we don’t have a clear signal for that, but I do think, in the same…the story that we understand for healthcare in general, there are some differences in terms of access to care, the quality of care that’s delivered in, you can guess that possibly that’s one of the reasons why that that affects African Americans and Hispanics disproportionately in this setting as well.

So my activation tip for this question would be if you have stroke, heart attack, blood clots, abnormal counts, please follow up with your doctor and ensure that you get referred to the appropriate specialist to help assist in managing your complications. 

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Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients

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Myeloproliferative Neoplasm Basics for Newly Diagnosed Patients from Patient Empowerment Network on Vimeo.

What do newly diagnosed myeloproliferative neoplasm (MPN) patients need to know? Expert Dr. Idoroenyi Amanam from City of Hope shares how he explains the condition, possible MPN complications, and proactive questions to ask your doctor.

[ACT]IVATION TIP:

“…if you see high platelet counts on a routine blood check or high white blood cell counts or high red blood cell counts, you should ask your doctor to delve a little bit deeper to try to get an answer as to why your counts are presenting in that fashion.”

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Are MPN Risks and Outcomes Impacted by Race or Ethnicity

Are MPN Risks and Outcomes Impacted by Race or Ethnicity?

 What Does the Future of Myeloproliferative Neoplasm Care Look Like?

What Does the Future of Myeloproliferative Neoplasm Care Look Like?

 Are There Disparities in Stem Cell Transplant Outcomes

Are There Disparities in Stem Cell Transplant Outcomes?

Transcript:

Lisa Hatfield:

Dr. Amanam, how do you explain MPN to your newly diagnosed patients?

Dr. Indoroenyi Amanam:

Yes, MPN is a very rare disorder, and so most patients haven’t heard of MPNs in comparison to breast cancer or colon cancer, and so it’s…sometimes it appears very ambiguous as to what it actually is, and for patients, I generally tell them that there’s some…it’s a disorder that causes increased production of their red blood cells or their platelets, or the cells that help support the tissue in their bone marrow. And there’s some complications associated with that, namely blood clots, strokes, and heart attacks. And there’s also a small risk of these patients converting over into more aggressive blood cancers, namely acute leukemia. 

So my activation tip for this question is that, if you see high platelet counts on a routine blood check or high white blood cell counts or high red blood cell counts, you should ask your doctor to delve a little bit deeper to try to get an answer as to why your counts are presenting in that fashion. 

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[ACT]IVATED MPN Resource Guide en español

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Spanish Activated MPN Resource Guide

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[ACT]IVATED MPN Resource Guide

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Activated MPN Resource Guide

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Can Mobile Health Apps Lower the Burden of MPN Symptoms?

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Can Mobile Health Apps Lower the Burden of MPN Symptoms? from Patient Empowerment Network on Vimeo.

How can the burden of myeloproliferative neoplasm (MPN) symptoms be lessened through the use of mobile health apps? Blood cancer patient Lisa Hatfield shares common MPN symptoms that patients experience and explains wellness strategies and mobile app study results that decreased the symptom burden for patients.

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How Can MPN Patients Continue to Use Telemedicine and Overcome Barriers

 How MPN Providers Want You to Prepare for Telemedicine Visits

 How MPN Patients Can Best Prepare for a Telemedicine Visit

How MPN Patients Can Best Prepare for a Telemedicine Visit

Transcript:

Lisa Hatfield:  

As an MPN patient, you might experience symptoms like fatigue, night sweats, difficulty sleeping, abdominal discomfort, bone pain and others. However, early data using integrative approaches for the treatment of MPNs are promising, including aerobic activity, yoga, meditation, and strength training, to reduce the symptom burden and improve inflammation. With the evolution of smartphone technology, mobile apps have been increasingly popular to document wellness strategies. With this in mind, the University of Arizona Andrew Weil Center for Integrative Medicine developed and successfully piloted a global wellness mobile app, My Wellness Coach (MWC), to guide MPN patients on self-management strategies for their symptom burden. 

The app had patients set at least two wellness goals with clear action steps within these seven areas: nutrition, movement, sleep, resilience, environment, relationships and spirituality to work on over the course of 12 weeks. Within the app, there were links to curated resources and tips. Participants were sent 24- to 72-hour interval reminders before and after each action step and a goal deadline to encourage action throughout the intervention. At the end of the study, improvements were observed in inactivity, impaired concentration, dizziness, numbness, sexual dysfunction, night sweats, bone pain, and quality of life. 

If you’d like to implement something similar to what the participants did, try the following: 

  • Reflect on why you want to change your symptom burden so you feel motivated  
  • Determine which of these categories: nutrition, movement, sleep, resilience, environment, relationships, and spirituality would you like to set goals in 
  • Create two goals from those categories and make them SMART- specific, measurable, attainable, relevant, and time-bound. 
  • Utilize resources available to you through support groups or online tools 
  • Set reminders on your phone or calendar for each step you need to take to complete your SMART goals

Mobile-based apps are another example of how MPN patients can use telemedicine in their day-to-day life and improve care.

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How Can MPN Patients Continue to Use Telemedicine and Overcome Barriers?

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How Can MPN Patients Continue to Use Telemedicine and Overcome Barriers? from Patient Empowerment Network on Vimeo.

What ways can myeloproliferative neoplasm (MPN) patients continue to use telemedicine to overcome barriers? Blood cancer patient Lisa Hatfield shares advice for coordinating with your MPN care provider to continue telemedicine visits and how to advocate for continued coverage of virtual visits.

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What MPN Patient Type Is a Good Candidate for Telemedicine Visits

 The Importance of Telegenetics Consultations for MPN Patients

 Can Mobile Health Apps Lower the Burden of MPN Symptoms

Transcript:

Lisa Hatfield:

If you got used to and liked doing telemedicine appointments rather than going to in-person appointments during the COVID-19 pandemic, don’t worry – it seems like telemedicine is here to stay! In order to take forward what we have learned from telemedicine during the pandemic, here are a few things to keep in mind. 

  • Make sure you tell your doctor that you enjoyed telemedicine visits and would like to keep using them as much as possible. You and your doctor can work together to create a schedule of mixing in-person and virtual visits. For example, you might be able to do “remote monitoring,” where you feel your spleen daily to see if it’s more enlarged or keep an eye out if you feel more full or fatigued lately or if you’ve been losing weight unexpectedly and then you report back to your physician on any changes you are experiencing or if your symptoms are worsening. 
  • You can also complete symptom assessment forms online or discuss the forms through a virtual visit rather than completing and discussing forms in-person.
  • In-person appointments will still be necessary if you need blood drawn or if your doctor prefers to feel your spleen first-hand. Be sure to communicate with your healthcare team at what intervals of your MPN treatment you would need to come in office for. 
  • In a recent podcast interview with ASCO Daily News,  Dr. Ana Maria Lopez, Vice Chair of Medical Oncology of the New Jersey division of the Sidney Kimmel Cancer Center, at Jefferson Health suggests that in order to keep telemedicine in the forefront of future care, to advocate for continued reimbursement for telemedicine. Always check with your healthcare provider on the cost or reimbursement for telemedicine appointments. 

With these things in mind, we can continue to use telemedicine as it evolves further in MPN care.

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The Importance of Telegenetics Consultations for MPN Patients

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The Importance of Telegenetics Consultations for MPN Patients from Patient Empowerment Network on Vimeo.

What role should telegenetics consultations take for myeloproliferative neoplasm (MPN) patients? Blood cancer patient Lisa Hatfield explains the rise of telegenetic consultations, how patients benefit from them, and how to learn more about access.

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How MPN Patients Can Best Prepare for a Telemedicine Visit

 Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

Transcript:

Lisa Hatfield:

According to the National Library of Medicine, less than 300 genetic tests were available in the 1990s; at the end of 2012, almost 3,000 genetic tests were available and now in 2023, +76,000 tests are available to the general public. Some of those genetic tests can be used on MPN patients through telegenetic consultations. These are appointments done via telemedicine with genetic counselors to determine what gene mutations you might have. They can be done by telephone or video conferencing. 

As you would imagine, this type of telemedicine became more common during the COVID-19 pandemic and should still remain in a patient’s tool box post-pandemic. While telegenetics consultations play an important role in a patient’s personalized care by determining if there are genetic mutations like JAK2 or MPL, the added benefit is that these online consultations protect the patient from exposure to viruses and potential infections as well as saves them valuable time, energy, and travel costs.

Telegenetic consultations are also beneficial for remote patients, including those in rural areas with limited or no access to genetic services. Be sure to talk to your doctor to see if you can benefit from telegenetic consults. This can be especially important or helpful to do at the beginning of your MPN journey or before switching treatments.

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Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

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Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19 from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) clinical trial enrollment be aided by telemedicine? MPN expert Dr. Jamile Shammo shares ideas for how clinical trial protocols can be adjusted with telemedicine and other remote options for improved patient care. 

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Pros and Cons of Telemedicine From an MPN Patient Perspective

Pros and Cons of Telemedicine From an MPN Patient Perspective

 What MPN Patient Type Is a Good Candidate for Telemedicine Visits

 How Can MPN Patients Continue to Use Telemedicine and Overcome Barriers

Transcript:

Lisa Hatfield:  

With the nature of telemedicine being virtual and the fact that clinical trials, thus far, have only been conducted in-person, it may seem strange or impossible to try to move clinical trial participation to the virtual space. However, clinical trials are so important to research and getting the best care to patients, that researchers are beginning to figure out how to make this a reality. MPN expert Dr. Jamille Shammo reiterates the importance of clinical trials by saying:

Dr. Jamile Shammo:

There’s no doubt that COVID has certainly impacted our ability to enroll patients on clinical trials. There have been a lot of governing bodies that have created various rules and regulations around that to facilitate enrolling patients on clinical trials, and I think right now we are seeing that this has become feasible, such that we are able to enroll patients yet again on the clinical trial. So, now I think that we have the vaccine that is available, it has become a little bit more feasible and possible to do so. So, this should not stop us. I think we should continue to seek better treatments for MPN patients actually the only way to do so is by, you know, only patients on trials.

Lisa Hatfield:

So what ideas do researchers have, to start making clinical trials available via telemedicine? 

They believe in simpler clinical research protocols that not only allow telemedicine for nontreatment visits and consents, but also require fewer laboratory tests and imaging studies that may burden patients with extra visits and reduce the regulatory burden for research staff as well. It is important to specify that patient visits and/or consents can be conducted remotely in the trial protocol. 

A patient-centric approach toward clinical research needs to be explored in virtual trial assessments. A 2022 ESMO journal article by Sessa et al described new approaches to oncology clinical trials, including the use of electronic patient consent forms and medical updates, local laboratories for blood tests, home nursing visits for blood draws or infusions, and electronic patient-reported outcomes. It also stressed the importance of working together with local doctors, direct-to-patient drug delivery, and remote monitoring to increase patient convenience. 

While there is still more information to consider, this gives us hope on how trial access can be improved and approached in the future for better MPN care. 

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How MPN Providers Want You to Prepare for Telemedicine Visits

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How MPN Providers Want You to Prepare for Telemedicine Visits from Patient Empowerment Network on Vimeo.

What are some ways myeloproliferative neoplasm (MPN) providers want patients to prepare for telemedicine visits? MPN expert Dr. Jamile Shammo shares advice to avoid common obstacles to optimal telemedicine visits.

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Pros and Cons of Telemedicine From an MPN Patient Perspective

Pros and Cons of Telemedicine From an MPN Patient Perspective

 Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

 Can Mobile Health Apps Lower the Burden of MPN Symptoms

Transcript:

Lisa Hatfield:

Do you ever wonder what your doctor wishes you would do before having a telemedicine appointment with them? After all, they are meeting with patients almost daily for telehealth visits so they know what makes a successful appointment. Listen as Dr. Jamile Shammo shares her advice on how to prep to make the most of your time together: 

Dr. Jamile Shammo:

When preparing for a televisit, I think it’s so important to know whether or not you would have a connectivity issue. A lot of times, I’m trying to connect with the patient and then we realize that their phone isn’t equipped to handle the televisit and that is kind of disappointing to find that out a minute before you try to connect then that visit becomes a telephone encounter, which is again, less satisfying for some patients. I mean it does the job, but again, it doesn’t provide me with the exam…part of the exam that I’d like to do, at least in that way. 

Lisa Hatfield:

If you are unsure on what platform to use for your appointment or if you have to download an application, it is worth asking your care team ahead of time as Dr. Shammo says. Most institutions have a person that can assist you with setup prior to the appointment, especially if it is your first virtual appointment. 

Dr. Jamile Shammo:

It would be helpful to make sure that you have a blood draw or if your physician would like to have a blood draw in my case, I always like to have a CBC beforehand or perhaps a chemistry or maybe ion studies or what have you, to have that so that there will be something to discuss. Make sure that your physician has had those results before you have the visit. Sometimes it is also disappointing that the patient thinks I’ve received those results when I actually haven’t and I have no control over that, so that would be the other piece.

Lisa Hatfield:

Take control of your visit by asking staff ahead of time if you can have a blood draw or other testing and that those results are shared with the doctor prior to your visit, that way you can discuss them live. You can typically request this by calling or using a patient communication portal. Just like with in-person visits, have your questions ready or items you would like to talk about in order to utilize your time effectively. 

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What MPN Patient Type Is a Good Candidate for Telemedicine Visits?

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What MPN Patient Type Is a Good Candidate for Telemedicine Visits? from Patient Empowerment Network on Vimeo.

What myeloproliferative neoplasm (MPN) patient type makes a good candidate for telemedicine visits? MPN expert Dr. Jamile Shammo shares her perspective of patient situations that work well for telemedicine and those who can benefit from in-person visits as part of ongoing care.

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Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

 How MPN Providers Want You to Prepare for Telemedicine Visits

Transcript:

Lisa Hatfield:

As more institutions start to have in-person visits instead of only telemedicine visits, you might be wondering if you should keep doing telemedicine visits or move back to seeing your physician in-person. Some people might want to continue doing telemedicine for a number of reasons, including convenience/no travel involved and  limiting your exposure to colds/infection from other patients. There are certain MPN patients that could be seen with telemedicine visits or fewer in-person visits. Listen as Dr. Jamile Shammo explains.

Dr. Jamile Shammo:

So, when I think of the patient that might benefit most from seeing the physician via televisit, for example, it would be someone who perhaps has a stable disease, someone who I may want to monitor perhaps every three to six months, someone who may have stable counts, and we’re just talking to about their symptoms and monitoring those types of things every so often. And perhaps I look at the labs, and you can discuss their symptoms and whether or not they have splenomegaly and issues like that. 

Lisa Hatfield:

As Dr. Shammo notes, if your MPN is considered stable and you typically only see your doctor every three to six months, it might be worth continuing telemedicine visits instead of going back to in-person visits. 

Dr. Jamile Shammo:

Someone who may already be on a stable dose of medication and we don’t have to do any dose adjustments and even if we have to do those adjustments, perhaps we could do labs a little more frequently, so that would be all right too.

Lisa Hatfield:

If you are on a stable dose of your medication and don’t need any modifications or just have minor adjustments, you could consider staying with telemedicine visits. 

But what patients should consider doing more in-person visits, now that COVID-19 precautions are lighter? Dr. Shammo goes on to explain THAT patient could be…

Dr. Jamile Shammo:

Someone in whom I would like to initiate in treatment, someone in whom the disease may be progressing a little too quickly, someone who I may want to do an exam and assess their spleen, I suppose you could send them to an ultrasound facility and obtain an MRI or a CT, or an ultrasound of the imaging study that is. But there’s nothing like an actual exam of the patient. You are thinking about the disease progression, so those sorts of patients in which the disease is actually changing its pace, you may want to take a look at it, the full smear look and examine the skin for certain TKI and signs and symptoms of low platelets and that sort of thing. Look in the mouth for ulcers and things of that nature. 

Lisa Hatfield:

As always, please discuss with your health care team before deciding to switch to only telemedicine visits or going back to in-person visits. They know your history and can help decide what is best for you and your care at this particular time. 

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Pros and Cons of Telemedicine From an MPN Patient Perspective

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Pros and Cons of Telemedicine From an MPN Patient Perspective from Patient Empowerment Network on Vimeo.

What are the positives and negatives of telemedicine for myeloproliferative neoplasm (MPN) patients? MPN patient Debbie shares her perspective about benefits and drawbacks of telemedicine visits, and blood cancer patient Lisa Hatfield shares advice for preparing for telehealth visits and for staying connected with your healthcare team.

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Related Resources:

How MPN Patients Can Best Prepare for a Telemedicine Visit

How MPN Patients Can Best Prepare for a Telemedicine Visit

 What MPN Patient Type Is a Good Candidate for Telemedicine Visits

 How Can MPN Patients Continue to Use Telemedicine and Overcome Barriers

Transcript:

Debbie:

I think there is definitely a place for telemedicine in our care. It has enabled us to, or enable me to keep in touch with my hematologist and to understand where my blood counts currently are. What I would also say is, it’s…that there are positives and negatives. I think that the positive of it is the fact that I’ve got a regular update on what my blood counts actually are. I think the negatives of it can be, is that it is quite easy just to move the conversation quite quickly forward. It’s easier for me to just say, everything’s all okay. Thank you for updating me over the telephone, then it is perhaps if I was actually sat in front of somebody. I think that the challenges it presents is that personal touch, is that feeling of being able to have a one-to-one relationship with your consultant. I don’t think you have that over the telephone.

Lisa Hatfield:

You just heard from Debbie, who is living with an myeloproliferative neoplasm, share her positives and negatives of telemedicine but what can patients do so the positives outweigh the negatives? One suggestion is to treat a telehealth appointment the same way you would treat an in-person appointment, meaning you would write down all your questions ahead of time, make notes of the points you want to cover and keep information on your blood counts and medications handy. By looking at a telemedicine appointment with the same importance and preparedness as an in-person session, you will ensure you are making the most of the time. Another way to see the positives in telemedicine is to remember that telemedicine can be used beyond virtual visits. You can utilize telemedicine/telehealth technology to message and stay in contact with your care team and to share your records electronically with all the providers you see. Telemedicine can help us stay connected and informed of our health in this technology-heavy world!

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How MPN Patients Can Best Prepare for a Telemedicine Visit

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How MPN Patients Can Best Prepare for a Telemedicine Visit from Patient Empowerment Network on Vimeo.

What are some ways that myeloproliferative neoplasm (MPN) patients can best prepare for telemedicine visits? Lisa Hatfield shares information about telemedicine, and MPN patient Summer Golden and care partner Jeff Bushnell share their tips for telemedicine best practices.

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Related Resources:

Pros and Cons of Telemedicine From an MPN Patient Perspective

Pros and Cons of Telemedicine From an MPN Patient Perspective

 How MPN Providers Want You to Prepare for Telemedicine Visits

 The Importance of Telegenetics Consultations for MPN Patients

Transcript:

Lisa Hatfield:

After the extensive use of it during the COVID-19 pandemic, it seems like telemedicine will be here to stay. It’s another technological advantage that people living with MPNs can put in their toolbox. Since MPNs are classified as a rare disease, and there might be a lack of doctors knowledgeable on how to treat it near you, telemedicine has made it easier to connect with MPN specialists via online consults. Telemedicine can include video or audio only, and you should receive instructions how to set up and what to expect prior to your appointment. 

Listen as MPN patient, Jeff Bushnell and his care partner, Summer Golden, share how they prepare for telemedicine visits 

Summer Golden and Jeff Bushnell:

A top tip I think, it’s sort of logical, but is to have the questions and issues written out because it’s a limited matter of time and to specifically jot down the answers. Another tip would be to ensure that you have the appropriate stuff on whatever device you’re using to talk to the doctor on. We’ve used about three or four different apps, as it were, on our phone to communicate with different doctors, and you need to make sure that that works ahead of time.

Usually, the way they do it is they set up the appointment, they contact you ahead of time, and make sure that it’s going to work before they put the doctor online. But that’s very important that you have the technical ability to ensure that your equipment can support telemedicine. They’re making it pretty easy, but you still have to do it.

Lisa Hatfield:

Follow these two tips from Summer and Jeff as part of what YOU do to be ready for your next telemedicine visit. If you are having trouble with the technology needed for telemedicine, be sure to reach out to your doctor, nurse, or care partner for assistance. 

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