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Is MGUS More Prevalent in BIPOC Communities?

Is MGUS More Prevalent in BIPOC Communities? from Patient Empowerment Network on Vimeo

Does the multiple myeloma precursor of monoclonal gammopathy of undetermined significance (MGUS) occur more frequently in minority (BIPOC) patients? Expert Dr. Sarah Holstein from the University of Nebraska Medical Center shares information that myeloma studies are researching on Black, Indigenous, and People of Color patients and how to improve myeloma awareness and care.

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Will Telemedicine Be a Mainstay for Myeloma Patients After the Pandemic?

Will Telemedicine Be a Mainstay for Myeloma Patients After the Pandemic?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

What Are the Benefits of Telemedicine for Myeloma Patients?

 

Transcript:

Dr. Sarah Holstein:

:  When we look at data sources like the SEER (The Surveillance Epidemiology, and End Results) data source, it’s not necessarily so granular that we can always distinguish whether the population is Black/Hispanic, Black/non-Hispanic, but really where I’ve seen the increased risk is whenever there are population-based studies and they describe the population at least in the U.S. as Black. I will admit I don’t know the details as to further sub-division amongst the category of Black and whether or not it’s appropriate to use the term BIPOC in this setting with respect to why do Black Americans have higher risk of plasma cell disorders than white Americans? I think that’s still a question that we can’t completely answer. There are a lot of really good research teams in this country and really worldwide that are trying to understand the different genetic-based risks, and it’s clear based on some studies that there’s some differential with respect to for example, what the frequency is of particular genetic abnormalities that happen in the plasma cells as they go from normal to abnormal. So, one example that I’ve seen is a higher frequency of translocation 11;14 in patients who are Black compared to patients who are white, but ultimately, I don’t think there’s an easy, easily understood answer to that very complex question right now with respect to why the risk is two to three-fold higher in Black individuals compared to white individuals. 

And then that’s a little bit of a separate—I mean it’s related, but in some ways, and that’s somewhat separate from the issue of when Black individuals actually get diagnosed with myeloma, whether that’s at a more advanced state of the disease than in white people that I think is a little bit more dependent on access to care as well, as knowledge of the disease. I would say that in general, myeloma is not a cancer that most Americans are actually that familiar with, and that’s regardless of white, Black, race or ethnicity, it’s still a relatively rare cancer and most people have never heard of it and don’t know other people who’ve had it. But I think what is key in the Black community is to really increase awareness of not only myeloma, but the precursor condition MGUS just like there have been enormous efforts to increase awareness of the risks of high blood pressure and diabetes, and how that can affect health later on, there’s also… I think sometimes a decreased frequency of access to primary care, sometimes myeloma is picked up just because of routine blood work, and that can be done sometimes on an annual basis by a primary care provider. And if individuals aren’t getting their annual physical and annual labs drawn, then by the time myeloma presents itself, sometimes it’s at the point where it’s presenting, because bad things have happened, like bones are breaking, or patients are very anemic, or there are serious infections, etcetera, as opposed to being found in a more asymptomatic stage when abnormalities such as high protein levels in the blood are noted that patients are otherwise feeling well. So I think you raise some really excellent questions, and I think there’s a lot of room for improvement in this country for not only improving the research so that we understand what the genetic bases are for developing plasma cell disorders, but also increasing education throughout this country, but specifically in the Black population, and then making sure that everybody has access to care.

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients? from Patient Empowerment Network on Vimeo

With the entry of telemedicine into the multiple myeloma care toolkit, there are some real benefits to the cost of care visits. Dr. Sarah Holstein outlines some of the financial benefits that she’s seen for her patients – and how the logistics of scheduling appointments has changed.

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Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients?

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How Will the Pandemic Impact Multiple Myeloma Trials? 

 

Transcript:

Dr. Sarah Holstein

So, there’s definitely quite a bit of financial toxicity associated with being a patient who has myeloma. There of course is the cost of the drugs and treatments themselves, but there’s also the personal time cost. So, the cost that it takes to perhaps take a half day off of work or a full day of work to see your provider in person, and the flexibility that telemedicine allows, namely being able to do your appointment from either the privacy of your own home or in some cases the privacy of your own office or even your own car, really allows patients to keep going about their business without having to take all that time off to come travel. There’s the cost associated with gas mileage in some cases, costs associated with parking, although thankfully, that’s not a cost that’s occurred here at Nebraska Medicine. But I certainly know that that can be an issue at other institutions and can really add up for patients over time. So, it’s really been so much easier for patients to get in to see me even when my schedule is fairly full, because they don’t have to think about, “Well, I don’t need to leave work an hour, try to go over my lunch break,” or something like that, they can just schedule it and do it from their office.

I think it’s been a good thing for patients and hopefully is cutting down costs for them.

How Can Myeloma Patients Reduce Infection Risks During Medical Appointments?

How Can Myeloma Patients Reduce Infection Risks During medical appointments from Patient Empowerment Network on Vimeo

How much of a risk are medical appointments for multiple myeloma patients? Myeloma expert Dr. Sarah Holstein explains infection risks of infusion appointments versus clinic visits – and shares how she’s helped to ensure safe visits for her patients.

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What Are the Benefits of Telemedicine for Myeloma Patients?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

How Will the Pandemic Impact Multiple Myeloma Trials? 

 

Transcript:

Dr. Sarah Holstein

So, I think the risk associated with going in to get your blood drawn is probably quite low. All health care providers are going to be masked. The time that is spent getting the blood actually drawn is quite low and generally are in and out. So, for what I’ve tried to do for patients is of course to minimize unnecessary lab draws and if possible, try to coordinate them with other tests that are being done that day or other visits that are being done that day, and the infusion appointments, of course are necessary. But again, I think the risk of going to an infusion appointment is quite low, where I think the risk gets a little bit higher is when you’re sitting in waiting rooms of clinics and some people are slipping their masks off to drink coffee or to do other things, like that. And so, on my end, what I’ve tried to do to reduce risk is to utilize telehealth appointments as much as possible so that patients aren’t spending time in waiting rooms, but again, some of the necessary evils are just that you have to get some labs drawn to make sure that it’s safe to administer chemotherapy to make sure that the treatment is working, and you also have to go to infusion appointments.

I will say I’m pretty strict about masking, so if I have a patient perhaps come in for an in-person visit and it’s the type of mask where it’s slipping off of their face as they’re talking, and we’ve all experienced those types of masks that fit fine until you actually start talking. I’ll get a replacement mask for them to really make sure that everybody, the healthcare providers, the team as well as the patient, and if there’s a family member with them or a safest can be, and that includes wearing a properly-fitting mask.

How Will the Pandemic Impact Multiple Myeloma Trials?

How Will the Pandemic Impact Multiple Myeloma Trials? from Patient Empowerment Network on Vimeo

How has the COVID-19 pandemic changed multiple myeloma clinical trials, and how can telemedicine play a role in trials? Dr. Sarah Holstein shares her perspective on how trials were altered and her suggestions for improvements in trials.

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Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients?

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Transcript:

Dr. Sarah Holstein

Early on, I was very concerned about the ability to conduct clinical trials during the pandemic, early on, at least in our institution, and I know that there were many others across the country, there was a lot of concern about really limiting what was considered by the IRB (Institutional Review Board) to be an essential contact. They perhaps placed an emphasis on later phase clinical trials and thought that the earlier phase clinical trials weren’t necessarily proving to be a benefit for patients and therefore shouldn’t be opened, and I would have to say that that was not what my thought was. I really think that all clinical trials, whether it’s a Phase I, Phase II, or Phase III or of utmost importance to our patients and are important for their care. So again, early on, I was very concerned about limiting the access of clinical trials to patients. As the pandemic has continued and it’s become clear that this is going to be life as we know it for unfortunately, quite some time, I know at our institution, we’ve really tried to be as safe as possible, but all clinical trials are open and we’re allowed to enroll, I think there still is room for improvement with respect to how telemedicine is incorporated into clinical trials, and whether or not we can do things like allowing patients to get their study labs drawn closer to home as opposed to traveling to the academic center, so I think there continues to be room for improvement for really trying to minimize the amount of traveling that people do, and therefore the amount of potential exposure that patients have.

We still are not routinely using telemedicine for the clinical trial visits, that most of those are still in person. And I think depending on the specific trial, that is probably appropriate if you have a new agent and a lot of what you’re looking for is evidence of toxicity, I think it is important to be able to evaluate the patients in person and really be able to conduct a normal physical exam, having said that though, if a patient’s on a clinical trial where they’re receiving more standard of care, and perhaps it’s in a maintenance phase of a study, I think being able to utilize telehealth for some of those more routine visits would really be beneficial for both the patients and the healthcare team.

Is Telemedicine Here to Stay for Multiple Myeloma Care?

Is Telemedicine Here to Stay for Multiple Myeloma Care? from Patient Empowerment Network on Vimeo.

With the emergence of telemedicine for multiple myeloma care, it’s being looked at for long-term care. Myeloma expert Dr. Sarah Holstein shares her hopes for the future of telemedicine – and shares some tips for optimizing telehealth visits.

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Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients?

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What Are the Benefits of Telemedicine for Myeloma Patients?

 

Transcript:

Dr. Sarah Holstein

I really hope telemedicine is here to stay. If you’re practicing in a place like I am, where patients come from quite a distance, it would be great in the future if some of the more routine visits, can be a telemedicine and perhaps get into a rotation or maybe every three or four months, they come and see me in person versus the rest of their monthly visits via telemedicine. So, I very much hope that the government, as well as insurance carriers will continue to provide coverage for telehealth visits in the future, because I think it’s really broadened access for patients and it’s been a really wonderful thing for them in general. In terms of tips for preparing, some of it just comes down to understanding the technology and getting familiar with what you need to click on and making sure that you’ve allowed your iPad or your phone or computer access to your camera, it sounds silly, but sometimes a big chunk of the appointment can be eaten away because of the settings being wrong or pop-ups, so some of it is just trying to figure out the system ahead of time before you log on.

But other than that, I would say, making sure that you understand from your health care team, whether or not you can forward the link, if you’re using Zoom, for example, to other family members, so that you

can have multiple family members kind of Zoom in at the same time to be able to listen, and that way you’re not relying on yourself to take notes, and everybody doesn’t have to be in the same place at the same time, which again, given the pandemic is not wise anyways. So, I think just trying to figure out the technology involved and then making sure that you can have access or provide access to your family members or friends who want to virtually come to your visit with you is key for a successful visit.

Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients?

Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients? from Patient Empowerment Network on Vimeo

What can multiple myeloma patients expect for the use of telemedicine as part of their long-term care? Dr. Sarah Holstein shares her experience of using telemedicine for those with MGUS and those managing controlled disease – and her thoughts about the future of telemedicine.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Are There Limitations of Telemedicine for Multiple Myeloma Patients?

How Can Myeloma Patients Reduce Infection Risks During Medical Appointments?

What Are the Benefits of Telemedicine for Myeloma Patients?

 

Transcript:

Dr. Sarah Holstein

So, I think telemedicine is a really good fit for patients for either long-term survivorship issues or for patients that perhaps you’re just following with the precursor to myeloma, so for example, MGUS (monoclonal gammopathy of undetermined significance) where overall the risk is low that there’s actually going be a progression to myeloma over their lifetime.

So I have a number of patients who I see perhaps on an annual basis for those types of visits, and of course, over the last year, I’ve been doing a number of those visits via telehealth, and I think they’ve gone really well. It still allows me to ask my entire review of systems where I check through and make sure that there’s no subtle signs that I might be missing that somebody’s plasma cell disorder is progressing. They’ve had their blood work or scans or other testing done, and we can review those, but again, in those types of situations where the risk is low and somebody is doing well and it’s a fairly routine visit, I think the need to do a full physical exam, it’s pretty low, I think whether or not you’d hear anything on the lung exam in somebody who’s doing well and it’s just there for an annual basis exam, I don’t think that lung exam is going to add a whole lot, but really having the ability to still talk to each other, go over laboratory studies, really make sure that I’m not missing any subtle signs that might suggest concomitant lite amyloidosis or progression to myeloma can still very readily be done via telehealth.

What Are the Benefits of Telemedicine for Myeloma Patients?

What Are the Benefits of Telemedicine for Myeloma Patients? from Patient Empowerment Network on Vimeo

How will myeloma patients benefit from telehealth visits? Myeloma expert Dr. Sarah Holstein shares benefits she has seen while caring for her myeloma patients including broadening access and the ease of seeking a second opinion.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Is Telemedicine Here to Stay for Multiple Myeloma Care?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

How Will the Pandemic Impact Multiple Myeloma Trials? 

 

Transcript:

Dr. Sarah Holstein

So, I think telemedicine has been one of the few silver linings of this entire pandemic, I had personally never utilized telemedicine previously in my career, and now I’m using it almost extensively these days to care for my myeloma patients.

I’ve always had patients who tell me that they wish they didn’t have to take a half day off to come to a clinic appointment, and sometimes the clinic appointments are only 20 minutes, but they’re driving an hour and a half or two hours or more to come to those clinic appointments. So, some of it has just been the freedom that allows patients to go about their lives and not have to take time off of work or time off from other things that they’re doing to physically travel to come and see me. Telemedicine though, has also really broadened the access to me in my cancer center, again, based on where I’m at in Nebraska, patients would sometimes have to travel a very far distance to see me, and these days it’s just a matter of logging on via Zoom to access me, and it’s allowed me to see patients for second opinions in not only different parts in Nebraska that otherwise would have been difficult to reach, but also really across the country.

So, telemedicine in general, has allowed patients much more flexibility in seeing me and has also allowed the ability for me to do second opinions without making patients travel quite a distance.