What Does Teleoncology Mean for Myeloproliferative Care?

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What Does Teleoncology Mean for Myeloproliferative Care? from Patient Empowerment Network on Vimeo.

 Myeloproliferative neoplasm (MPN) patients can benefit from various aspects of teleoncology. Watch to learn about teleoncology, benefits for MPN patients, and potential future developments with teleoncology.

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Transcript:

Teleoncology carries out clinical oncology remotely and can cover all aspects of oncology care including cancer diagnosis, treatment, and follow-up phases for patients. As with other cancer types, MPN patients can benefit from many aspects of teleoncology.  

Teleoncology is a more targeted part of telemedicine, which is especially beneficial for MPN care. Teleoncology provides more frequent monitoring of symptoms, treatment side effects, physical functions as well as easier patient access to lab tests and protecting patients from extra exposure to viruses and infection risks.

With the evolution of treatments that can now be delivered via convenient methods like wearable patches, the future of teleoncology looks promising. MPN patients will have fewer visits for their treatment and can enjoy a higher quality of life with more frequent remote check-ins with their MPN specialist.

What Is the Role of Next-Generation Sequencing in MPNs

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What Is the Role of Next-Generation Sequencing in MPNs? from Patient Empowerment Network on Vimeo.

 Myeloproliferative neoplasm (MPN) patients can take advantage of a medical advancement called next-generation sequencing. Watch to learn about next-generation sequencing, what it means for MPN patient care, and potential future developments from next-generation sequencing.

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Transcript:

Next-generation sequencing is a DNA analysis process that allows for sequencing of a portion of a patient’s genome. The process allows for processing of multiple DNA sequences in parallel. Next-generation sequencing also can identify hereditary cancer mutation carriers, cancer mutations, and other things.

Next-generation sequencing is another medical advancement that helps improve MPN patient care. By identifying cancer mutations and hereditary cancer mutation carriers, next-generation sequencing helps oncologists to further refine targeted therapies and personalized medicine – leading to optimal patient care.

As more research continues in next-generation sequencing, it’s possible that new genetic mutations will be discovered to further enhance quality of life with patient symptoms and treatment side effects.

Please remember to ask your healthcare team what may be right for you.

What Does Wearable Technology Mean for Myeloproliferative Care?

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What Does Wearable Technology Mean for Myeloproliferative Care? from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) patients can add wearable technology as another part of their MPN care toolbox. Watch to learn about monitoring that wearable devices may provide, what it means for MPN care, and future developments from wearable technology.

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What Do Telegenetic Consultations Mean for MPN Patients?

 MPN Treatment Tools and Advancements

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Transcript:

Wearable technology has expanded and improved at an impressive rate in recent years. With exercise and health tracking technology with devices like Fitbits and Apple Watches, wearable technology includes devices issued from healthcare providers for the monitoring of heart activity, breathing, brain activity, and more.

Advancements in wearable technology offer advantages to myeloproliferative patients in providing more opportunities for remote monitoring and also for delivering treatment via wearable drug delivery systems. And these technologies provide improved care, more frequency of gauging patient health metrics to improve quality of life, and optimal patient health over time.

With technologies advancing at such a rapid rate, there could be even more opportunities to improve care for myeloproliferative patients. Perhaps miniscule blood draws could even be carried out by wearable technology to provide even more convenience for patients while also protecting them from virus and infection risks in clinical settings.

Please remember to ask your healthcare team what may be right for you.

What Does Remote Patient Monitoring Mean for MPN Patients?

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What Does Remote Patient Monitoring Mean for MPN Patients? from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) patients are a patient group who already used remote patient monitoring before the COVID-19 pandemic. Watch to learn about remote patient monitoring, recent advancements for MPN patient care, and expectations for future developments from remote patient monitoring.

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What Do Telegenetic Consultations Mean for MPN Patients?

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 Should MPN Patients and Their Families Continue Telemedicine?

Transcript:

Remote patient monitoring was already in use before the COVID-19 pandemic hit, and technology improvements were fast-tracked by federal grants from the U.S. government. Telemedicine appointments and monitoring of the heart, lungs, brain, and muscles through remote technologies can be easily carried out for improved remote care.

Though remote patient monitoring of MPN patients was already in practice through periodic monitoring of blood work, advancements have been made in recent months. These improvements allow patients to visit their MPN specialist less frequently as their provider advises. While protecting patients from virus and infection risks, fewer visits save time and travel costs while also allowing optimal patient care in collaboration with their provider.  

As remote patient monitoring technologies continue to increase and improve over time, they will continue to help refine patient care. MPN patients can expect personalized care that becomes even more tailored to their needs, which will result in improved quality of life and less time in care appointments and traveling time for care appointments.

Please remember to ask your healthcare team what may be right for you.

What Do Telegenetic Consultations Mean for MPN Patients?

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What Do Telegenetic Consultations Mean for MPN PAtients? from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) patients have a telegenetic consultation as another option that has emerged for the telemedicine toolbox. Watch to learn about telegenetic consultations, what they mean for MPN patients, and future developments.

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Transcript:

Telegenetic consultations are those that can be carried out via telemedicine with genetic counselors. With the rise of genetic mutations playing a factor in cancer care and treatment decisions, it’s a natural progression for telegenetic consultations to become another option in the telemedicine tool box that protects patients from exposure to viruses and potential infections and saves them valuable time, energy, and travel costs.

With personalized medicine becoming an integral part of MPN patient care that analyze genetic mutations like JAK2 mutations and MPL mutations, telegenetic consultations make sense as another part of the tools for MPN care. The future of MPN care looks brighter with these virtual care options as part of the equation.

A form of tattoos called e-skins have now emerged as part of remote health monitoring. Used for detecting physical and electrical functions including heart, muscle, and brain activity, e-skins have shown reliability in monitoring tests even under body stress situations like sweating and while consuming spicy foods.

Please remember to ask your healthcare team what may be right for you.

Understanding What ECG Monitoring Tools Mean for MPN

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Understanding What ECG Monitoring Tools Mean for MPN Patients from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) patients can add ECG monitoring tools as part of their care. Watch to learn about ECG monitoring tools, their value in MPN care, and future developments from ECG monitoring tools.

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What Do Telegenetic Consultations Mean for MPN Patients?

 Does Remote Patient Monitoring Mean for MPN Patients?

 What Does Wearable Technology Mean for Myeloproliferative Care?

Transcript:

ECG monitoring tools or those that monitor electrocardiography – electrical activity of the heart – are another helpful tool in monitoring patients of all kinds, including cancer patients. Recent technology advancements have brought ECG monitoring beyond wearable vests and into wearable wristbands and e-skin technologies.

Monitoring patient health involves several aspects with heart health being on the monitoring list. With the advancements in ECG monitoring tools, myeloproliferative (MPN) patients can now have heart monitoring with some advantages. Patients can skip the risks of exposure to viruses and potential infections in clinic settings while also saving valuable time, energy, and travel costs.

Wearable ECG monitoring tools are already reliable, and the technologies will only become more precise as they are used more over time. Some patients who have wearable devices linked to their cell phones have the ability to automatically notify their emergency contacts in the event of concerning heart activity. Automated notifications like this are likely to become more common as technology improves.

Please remember to ask your healthcare team what may be right for you.

Health Educator Turned MPN Patient Speaks to Importance of Specialized Care

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Health Educator Turned MPN Patient Speaks to Importance of Specialized Care from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm (MPN) patient and health educator Julia Olff helped others navigate the healthcare system before her diagnosis with myelofibrosis and later with ET. Watch as she shares her unique experience and how finding MPN specialists can help patients in receiving optimal care.  

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Transcript:

Julia Olff:

Well, as a health educator and as a former hospital administrator when I was diagnosed with myelofibrosis, I feel like I had a particular reaction to the diagnosis that might be different from others who didn’t work in healthcare. I was both fascinated, which may sound really bizarre, that I was being diagnosed with an illness that I did not feel. Also, an illness I had not heard of, although I knew about some of the treatments that might be proposed because of my work as a health educator. So, I feel like I kind of went into health educator mode and health navigator mode, and that gave me a leg up in terms of knowing very early on, that once my ET transformed to myelofibrosis, I knew that I needed to see an MPN expert. And because I worked on health education because I worked in hospitals, I understood that I want, I needed to see a physician who had a depth of expertise, who had a volume of patients, who had a lot of experience with the drugs that existed. Although, in 2008, there was no approved, drug for myelofibrosis, but I knew I needed to go to the place where there was…

Where I had a better chance of getting the latest treatment, and I was diagnosed by a community oncologist who was lovely and one of the nicest people, and one of the nicest physicians I’ve seen, but it was clear he was not steeped in MPNs, because he treated patients across a spectrum of cancers. So, in that way, I think I started out in a different place, I also know that hospitals and healthcare can be very overwhelming, and I had a bit of the language and the world and some of the sort of…I understood a little bit more, I think about what my physicians might have been sharing with me, and if I didn’t, I felt empowered and not that this is easy by any stretch and it continues to be a challenge, but I knew that I needed to ask questions. I knew that I needed to read more about my illness, I knew I needed to vet my doctor as well, and I also figured out over time that as I was going to have this illness, hopefully in the sense that I hope I continue to live well with myelofibrosis and stay alive, that I was going to be seeing an MPN expert for a long time.

So, I think that influenced my point of view, I kind of take it as a job, so as to my personality, so I have a health notebook, I need to have one from the very beginning, I knew I couldn’t remember everything, I had to write it down. I knew I had to track what I was feeling so I could share it with my doctor, and I knew that from being a health educator, I think no one told me to do those things, and certainly, physicians don’t really know to tell you that, so I think in a lot of ways, I was approaching my illness in a very serious manner because I had experience in healthcare, and the last comment I’ll make is, I think from navigating the system, navigating health insurance, I knew a little bit from my experience as a caregiver already, and also from a health educator, I understood this is another area where I needed to empower myself or ask questions, or not take some of the information that may have been shared with me initially as on face value, that it was okay to ask more. As I said, I’ve had this illness for 13 years, I’ve also been caregiving for an adult child with illness, and every time I call the insurance company to ask a question about an explanation of benefits or why something isn’t covered, and learn a tiny bit more, and I add that to sort of my toolkit. 

Making Lifestyle Changes When Living With an MPN

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Making Lifestyle Changes When Living With an MPN from Patient Empowerment Network on Vimeo.

 As a myelofibrosis (MF) and essential thrombocythemia (ET) patient, Julia Olff has experienced lifestyle changes in her MPN journey. Watch as she shares changes she made with her work life and eating habits and the impact on her well-being as an MPN patient.

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Transcript:

Julia Olff:

I’ve definitely made many lifestyle changes since I’ve been diagnosed with ET and then myelofibrosis. The biggest change came when I needed to give up full-time work and began to work on a very part-time basis, so that’s been the most monumental change, and it really came about because of how unwell I was feeling, how much pain I was going through at the time, I also had a mini-stroke and became more involved in is hospitalized that I needed more treatment than I was seeing more…more specialists for a short period of time, and my husband and I recognized that to maintain my well-being, I needed to step off of the 50-hour week plus travel job that I was doing, so that was a really big change and that continues to influence my life, however, I’ve found a lot of positives in that I’m fortunate that I’ve been able to financially sustain my life while working part-time and find other aspects of my life that are fulfilling. For example, I volunteer a lot more. I’ve made changes in the way that I eat and the way that I sleep, so myelofibrosis has certainly caused a lot more fatigue over the years. And while when I was working full-time, I don’t think I was getting the amount of sleep that I really needed, and fatigue started to really weigh on me, and I remember driving and just feeling like, “Oh my God, I can’t do this,” so I make sure that I go to bed much earlier than I used to and try to wake up about the same time every day, and it’s also helped with some of the insomnia that I know people with myelofibrosis on the flip side, have with the fatigue. I’ve been hospitalized a few times for colitis, and there are all sorts of potential for bleeding with myelofibrosis, and we’re not sure that that was related, but I learned that I needed to change the way I was eating, and I can’t say that I did it immediately.

It took seeing a gastroenterologist, who evaluated all of my records and several more colonoscopies to get and the terrible, terrible pain of colitis to realize I needed to change the way I was eating, and I also had some weight gain with one of the medications that I was on…and so I enrolled in Weight Watchers, which I found to be incredibly helpful to help me lose some weight and did help me pump up the fruits and vegetables in my diet, especially when I learned you can eat lots of those…but less of other things. So those are some of the changes. And the last one I say is really learning to pace myself and to not overdo it, and that’s a longer learning process, I think, and figuring out that you don’t have the same kind of energy that you had pre-illness, where you can kind of push your day…you can do one more thing, one to one more place, add one more task to do is when you’re out, I’m much more of a planner, and I allow myself much more time to get things done, and I spread them out over several days, what I might have done in one day in the past.  

MPN Patient Shares Survivorship Tips, Recognizing Social Media Toxicity

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MPN Patient Shares Survivorship Tips, Recognizing Social Media Toxicity from Patient Empowerment Network on Vimeo.

 Myeloproliferative neoplasm (MPN) patient Julia Olff has experienced the positive and negative aspects of online information and social media in her search for support. Watch as she shares her support journey with what she found helpful and what became toxic in her efforts to gain MPN information and emotional support.

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Transcript:

Julia Olff:

So, I think social media has many advantages, especially when you have a rarer illness like myelofibrosis. I was diagnosed with myelofibrosis in 2008, and there really was not a lot of good information yet about the illness online, and I had not met anyone who had my myelofibrosis, so I really appreciated being able to go to places like Facebook in their earlier days, with my illness, to find organizations to find other people with the illness, I think learning from other people in terms of their strategies for coping with her illness, tips for dealing with side effects, and other people can answer questions about the physicians and nurses just can’t because they don’t experience it directly, how something feels sort of setting your expectations for a treatment can be really helpful, and I think that’s where social media really shines, is creating community and connecting it to others and learning from peers. The downsides though, I think, are the amount of opinion, unfounded opinion, not sourced opinion that exists that I saw on social media, and then the angry vitriol or kind of disagreement that I found really harmful to my mental health.

I’m always trying to balance how I feel with my mindset, and there are times that that’s easier to do, and times that that’s harder to do, so when I’ve been particularly unwell or just had a hospitalization, I feel like I have…I’m more vulnerable, I have less of a threshold for negativity and angry commentary, and that you can find that on social media, unfortunately, and then, of course, there’s… what I find troubling or not helpful are the opinions of other people who relay people who don’t necessarily have the depth of credible information about a treatment study, what’s right or wrong as it relates to the latest in myelofibrosis treatment, and treatment advances. So it’s helpful to hear about what it was like to have a stem cell transplant from someone with myelofibrosis, but yet I can’t rely on an individual for credible scientific medically sound information. So I think for me, I actually deleted my Facebook account in 2020, but I did keep my Twitter account because there I follow physicians’ epidemiologists, and of course, MPN organizations so that I can know about upcoming webinars or patient events, or new treatments. So that’s been really helpful.  

Balancing MPN Treatment Adherence and Mental Health

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Balancing MPN Treatment Adherence and Mental Health from Patient Empowerment Network on Vimeo.

Balancing myeloproliferative neoplasm (MPN) treatment adherence along with symptoms can sometimes be a challenge. Watch was myelofibrosis patient Julia Olff explains how symptoms and executive functioning can impact continuation of MPN treatment routines.

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Transcript:

Julia Olff:

I think doctors and nurses underestimate how well patients can adhere to treatment and how that relates to one’s mental health. There are times where I have not felt as well and had a kind of foggy brain and had episodes of forgetting to take my twice-a-day treatment, so that’s sort of one type of treatment adherence that I think is just affected by your overall mental well-being, and then there’s the bigger part of it that is about seeing the full picture and all of the things that you have to do to continue with treatment so if it’s pills, for example, here, there’s a lot that one needs to do that I think we take for granted or assume everyone can do that, from remembering to refill your medications to going to actually physically go get them if you have to do that. Some are mail order, in the case of myelofibrosis. Knowing when to take them, figuring out when it may be better based on when they’re prescribed to take…when it may be better for you like with food. I know when I was taking ruxolitinib (Jakafi) that I would take it just as I was going to bed, but I would feel unwell for a while I was laying in bed, and I think it relates to your mental well-being because, over time, treatment also can affect…

Treatment has side…can have side effects, and those side effects can also influence how you’re feeling emotionally, how good you’re feeling as a person, they can affect your energy levels, so the illness can affect…fatigue is one of the number one when problems that people with myelofibrosis face, and then you add treatment to it, and there’s an impact on how well you feel overall, so I think treatment adherence is very much tied to your mental well-being, your outlook, and your ability also to…it’s called executive functioning, how well you can kind of organize your day and your life and they’re all intertwined, I believe.  

MPN Patient Shares Importance of Understanding Benefits of Professional Therapy

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MPN Patient Shares Importance of Understanding Benefits of Professional Therapy from Patient Empowerment Network on Vimeo.

Myelofibrosis patient Julia Olff shares her experience with seeing a professional therapist via telemedicine as part of her MPN care.

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Transcript:

Julia Olff:

When I was diagnosed with myelofibrosis, I learned how important it was to continue therapy, so I had already started to see a therapist several years before that for a set of long-term issues in my life. But what I found over time, and I continue to find is the therapy has really helped me cope with not just some of the parts of my personal life that I’m still working through, but really helps me having a chronic illness, and I know from attending patient conferences, reading about myelofibrosis that there is…for one, a significant population of folks who suffer from anxiety with myelofibrosis. And that’s true for other blood cancers and chronic cancers, where there’s this, that there are ups and downs where you’re going through a period of stressful treatments, possibly followed by periods of monitoring or less treatment, and there’s always that fear of or worry about what may happen next, when might I develop a more serious mutation that will affect my prognosis, could I progress any time? Or there’s a smaller percentage of folks with myelofibrosis who can develop acute myelogenous leukemia, that’s always there. And I think therapy really helps for those sorts of outlook, long-term mindfulness, living in the present and gaining perspective about some of those fears. And I think the other part of therapy that’s so beneficial as it relates to having myelofibrosis is kind of learning to cope on a day-to-day basis, learning to think about yourself and your self-esteem that can get lost when you are feeling unwell for long periods of time. I’ve had months where I was deeply fatigued in terrible pain and doing a lot less and having to say no to my kids, I can’t do that, I can’t go here.

I remember going to back-to-school nights for my kids when they’re in high school, and I’m moving so slowly that I’m getting a teacher asking me, “Are you okay, do you need help?” And that can affect your sense of self, especially as you give up activities or work. I’ve reduced my workload significantly, and all to say is there is this dynamic of who you are as a person, that therapy I’ve found can help me get through so that I don’t lose who I am that helps really sustain my mental outlook.

MPN Patient Shares Advice for Making the Most of Telemedicine Visit

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MPN Patient Shares Advice for Making the Most of Telemedicine Visit from Patient Empowerment Network on Vimeo.

Myeloproliferative neoplasm patient Debbie has had the opportunity to utilize telemedicine in her care. Watch as she shares the pros and cons of telehealth methods in her blood cancer monitoring and her advice to other patients for optimizing virtual visits.

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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.

So, some of the tips that I would share are that you keep in regular contact with your hematologist, you keep regular information on your blood counts, but you keep in a very, very safe environment. You do keep in a safe environment, and that I think is something that’s enormously important. A tip that I would probably give is that make sure that in between your appointments, you do what you would do regularly on a face-to-face and make notes of the things that you want to talk about…because I quite often put the phone down and think, I wish I had said that when I go to the hospital, I will have my notes in front of me and I put them on the table, and I’ll cross-check them with the hematologist at the time, I tend not to do that on the telephone, and perhaps I should, so I would definitely recommend that you treat the tele appointment exactly the same as you would the hospital appointment.

MPN Patient and Care Partner Tips for Utilizing Telemedicine

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MPN Patient and Care Partner Tips for Utilizing Telemedicine from Patient Empowerment Network on Vimeo.

Myelofibrosis patient Summer Golden and care partner Jeff Bushnell have learned the ins and outs of telemedicine. Watch as they share some advantages of virtual visits, instances when in-person visits are used for MPN monitoring, and their tips for optimizing telemedicine visits.

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Transcript:

Jeff Bushnell:

We are very fortunate to live in San Diego here where there are major medical centers and research universities and so on, but a lot of people aren’t… and these MPNs are very, very rare diseases. And there are not a lot of doctors that specialize in them, so telemedicine will allow you to contact a specialist.

I know when we see the Summer’s doctor in-person, she does a physical exam specifically to check her spleen size, which is an important aspect of almost all of these MPNs and without the ability to do that the doctor is working all solely from blood counts.

Summer Golden:

It’s just like Zoom, it’ll never go away, and I do believe telemedicine will be here forever, another technical advantage.

Jeff Bushnell:

I think, especially after COVID, people are more used to telemedicine, and in the MPN community anyway, because of the lack of large numbers of doctors that know much about it, like telemedicine will open up sort of a new, a new type of being able to treat MPNs, just because more people will be able to contact specialists.

Summer Golden:

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.

Jeff Bushnell:

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.

What MPN Side Effects Can Be Monitored With Telemedicine?

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What MPN Side Effects Can Be Monitored With Telemedicine? from Patient Empowerment Network on Vimeo.

For myeloproliferative neoplasm (MPN) patients, what are some side effects that can be monitored via telemedicine? Expert Dr. Jamile Shammo from Rush University Medical Center shares the types of symptom monitoring that can be carried out virtually – and shares a specific piece of MPN monitoring that she recommends be performed regularly in-person for ideal care. 

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Transcript:

Dr. Jamile Shammo: 

MPN patients can be monitored remotely because clearly, a big part of their monitoring relates to symptom assessment, and so there are certain symptom assessment forms that we would do in the clinic just as well as we will do online or via virtual visits. So these can be done, again, when two people are speaking to one another, so granted these have to be performed, and then like I said, talking about the labs would also be done in a virtual fashion, the only piece that is missing, like I said, would be the physical exam, for that reason, I feel like that part has to be assessed at certain intervals that would have to be determined by the treating physician, but symptom assessments is a very big case of taking care of patients who have MPN. That certainly can be done virtually.