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How Can Myeloma HCPs and Nurses Help Manage Patient Concerns?

How Can Myeloma HCPs and Nurses Help Manage Patient Concerns? from Patient Empowerment Network on Vimeo.

How can myeloma care providers help in managing clinical trial concerns? Dr. Craig Cole from Karmanos Cancer Institute and advanced practice provider Charise Gleason discuss common concerns that they have encountered with patients and how they addressed the concerns.

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Transcript:

Dr. Nicole Rochester:

How do we mitigate and manage concerns despite all these wonderful things that both of you have shared? I’m sure that patients and family members have concerns about myeloma clinical trials. And so I’ll start with you, Ms. Gleason. And as you hear concerns from patients and families over the years possibly related to fear of randomization, fear of getting the placebo, you all have mentioned some uneasiness about adverse effects. How do you effectively mitigate and manage these concerns with patients and their family members and care partners?

Charise Gleason:

Yeah, you just have to continue to have open communication. And if you’re, if a patient is accustomed to you mentioning clinical trials, then when you present one to them, right? They’re a little more open to it. But not everybody starts with us. And we get referrals in midway and different parts and different paths along the way. But patients we do hear, “I don’t want to get a placebo.” Or you’ll mention a clinical trial and somebody will say, “Am I ready for hospice?” And it’s, you have to go back and start that education again that, no, you’re getting good treatment on this, a registry trial, for instance, you’re going to get standard of care treatment plus or minus something else, right? And so we really have to go back and educate that you are getting treatment. You’re going to be watched closer than any of our other patients actually.

You’ve got a whole team around you that’s talking about your trial and our patients every week. And so I think that our excitement and our being positive, we can get those patients to enroll on trials. I think something that makes me really happy is, we keep a list of every treatment line, and when you go through and it’s like standard of care, clinical trial, clinical trial, standard..it’s we’ve done the right thing then, right? Our patient has had full advantage of what’s available to them when we do that.

Dr. Nicole Rochester:

That’s wonderful. Thank you for sharing that.

What about you, Dr. Cole? Do you have anything to add with regard to managing the concerns that come up?

Dr. Craig Cole:

Yeah. The one thing that I tell patients, and I tell patients one-to-one, and when I do talks for some of the efficacy groups that I tell lots of patients that. That in 2024, myeloma trials are incredibly competitive. And the only, the best, best drugs, now float to the top as part of our clinical trial portfolio. There were days I remember begging companies for clinical trials saying, “Please, please think about myeloma.” And we were struggling.

Now, it is incredibly competitive, and that competition does a fantastic thing for patients because what we see in the clinical trial portfolio are drugs that are safer and safer and safer, and drugs that are more effective and more effective. When you go to these meetings and the expectation is that our response rate needs to be over 60 percent, then you know that the clinical trial mail you, that we work with them, is of a super high quality, which you really can’t say for a lot of other types of cancer.

So I tell patients that their fears that they have are absolutely justified. And one thing we teach the fellows, the residents and the medical students, is that you validate those concerns and you listen to those concerns and you don’t ignore it or blow through it. That you absolutely…those are the most important parts of that conversation. And if you don’t validate it, the patient says, “Well, I have a fear of randomization.” And you go, “Hmm, there’s no such thing.” Then that’s not validating. And that’s not even listening. That’s just moving on because you don’t have that concern, but you’re not bringing that, you’re not validating the patient’s concern. And so you have to be very, very careful in doing that because there are multiple studies that have shown those are the big concerns.

Also, bringing up the things that are facilitators for clinical trials, that if there is an opportunity for reimbursement for travel or reimbursement for hotel stays or reimbursement that we say that this trial has a reimbursement program, or if we say that use other things that help facilitate clinical trials like speaking to the family, not just speaking to a patient, but speaking to the caregiver and speaking to the extended family that that patient will have a conversation with are really important conversation because the more people that you can talk to, that’s part of that patient’s decision-making group, which can be very different from patient to patient based on their culture, the more likely you are to get a consensus among that decision-making group for the patient to go on a clinical trial.

Dr. Nicole Rochester:

Those are great tips

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CAR T-Cell Therapy | How Can Care Partners Provide Support?

November 2, 2023/in Care Partner Programs, Care Partner Resources, Care Partner TK, Care Partner TK Understanding /by Kara Rayburn

CAR T-Cell Therapy | How Can Care Partners Provide Support? from Patient Empowerment Network on Vimeo.

Care partners are essential members of the CAR T-cell therapy team. Expert Dr. Shambavi Richard explains some specific ways that care partners can support their loved ones during the treatment and recovery processes.

Dr. Shambavi Richard is Co-Lead Physician for the Myeloma CAR-T Programs at Mount Sinai Tisch Cancer Center. Learn more about Dr. Richard.

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Transcript:

Katherine:

You mentioned the role of the care partner, and you’ve talked about the recovery process and how involved it is. What do you feel is the care partner’s role in helping a patient through the process?

Dr. Richard:

I think much of it is emotional and psychological support. I think that is very, very key. But in terms of actually what they do, we do ask that they have a caretaker available 24/7 if possible at least for the first month or so following their CAR T. And this is because they need a lot of support going back and forth from wherever they’re residing whether it’s a hotel or whether it’s their own home because there are a lot of clinic visits during that time.

We do ask that the patients don’t drive for at least the first month, maybe even the first couple of months following the CAR T because again they can have neurological side effects that may be somewhat subtle. Their judgement may be impaired, but they may not look that different. So, a caretaker who knows them well is very useful in saying, “There’s something weird about how Joe’s acting lately,” or something like that. So, that’s very important as well to bring them back and forth and to manage all of these. And if there’s a problem in the middle of the night, if they’re having new fevers, they’re suddenly neurologically altered, they do need a person to be able to handle things and bring them in and get the adequate medical support.

Katherine:

What questions should care partners be asking if they begin the process?

Dr. Richard:

I think a good understanding of all of those.

So, whatever that takes for each individual person. We have patients of various different kinds who have come to us, some who have researched it and really know what’s going on out there, and others who are comparatively, “What is this CAR T thing? We have no idea what this is all about.” So, I meet each one where they are. I go over the entire process. I touch on all the different things that we just spoke about. I talk about the logistics of it. I talk about the timing.

One of the traffic jams is being able to get that initial fresis slot to be able to even send the cells to the manufacturing. So, there’s a question of managing the resources and making sure that patients are getting to their CAR T slots in a timely manner. So, a good part of it is an understanding that all of this is not something that happens overnight. There is several moving parts. There is a way, and their system, and a way that all of these have to be aligned.

So, I pretty much answer whatever they have, but I think questions touching on all of this. And finally, they exact thing that you asked, “How is it that they can help? What are the things that they can do to help?” And I think that is hugely important as well.

Katherine:

Yeah. Why is it so important that care partners let the care team know about any changes in the patient?

Dr. Richard:

I think the earlier we know of changes, the better. We can handle these things. There is a time sensitivity to a lot of this. If issues that happen are not addressed right away, they can evolve to more severe condition. And once if they’re more severe, they’re less likely to respond right away to the therapeutic maneuvers that we have. So, I think that’s really important.

And if they’re outpatient, we do bring them in for hospitalization right away. If there is anything that is – the delayed forms of these side effects can sometimes be also a little bit harder to resolve and turn around. So, it’s important that they come back to the hospital right away, get admitted for the workup, so that we can escalate the speed at which things can be done.

Katherine:

Being a care partner can be overwhelming at times. Do you have any advice to help care partners as they cope with their role?

Dr. Richard:

There’s a lot of support groups. I really encourage them to start talking to a social worker right away. So, our social workers really do get engaged in the process pretty early. There are many different kinds of support groups. There are support groups that are myeloma specific, and then support groups within those that are offshoots for CAR T patients, so people either thinking of going through a CAR T or in the middle of it or even post CAR T.

All the anxiety of the monitoring and, “Is the disease going to come back?” And that can weigh heavily on the caretaker as well. So, an emotionally supported caretaker and patient just makes it a lot easier for everybody including the medical care teams to be able to handle all of this.

What Resources Are Available for CAR T-Cell Therapy Care Partners?

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Tools /by Kara Rayburn

What Resources Are Available for CAR T-Cell Therapy Care Partners? from Patient Empowerment Network on Vimeo.

Are there resources for CAR T-cell therapy care partners? Licensed clinical social worker Marc Paloma shares information about support resources that are provided to assist CAR T-cell care partners. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

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Transcript:

Katherine Banwell:

Yeah. What resources are available for CAR T-cell therapy care partners?

Marc Paloma:

So, I work with a variety of local and national organizations that do provide supports for CAR T partners. Some of the bigger national organizations would be like the American Cancer Society or The Leukemia & Lymphoma Society. They can link care partners with support groups for people who are doing caregiving for patients.

Sometimes you do have to do a little bit of research and I think now, especially kind of post-pandemic still, there’s a lot of things that are being done online or through Zoom. So, there – but I do notice, especially locally here in Chicago, things are kind of getting back to where there is some in-person meetings. So, support groups, I think from organizations I think also not only to it – this is something – these are things that support the patient and the care provider both.

And this is something whereas a social worker I can help, there are many different kinds of grant programs like in-kind actual money and funds that are available for CAR T recipients. And the care partners that can help them with cover the cost of transportation for all of their follow-up visits, or they are needing to live locally in lodging or hotels following their CAR T hospitalization. There’s a lot of organizations that can be tapped into that way to get financial assistance or financial help.

And I think lastly also the CAR T companies themselves, I mean, there are – when we started doing this, I can’t even remember here at the University of Chicago four or five years ago, maybe. There were just three or two CAR T companies that were offering CAR T, and now there’s over a dozen. And we do so many now and they’re all different. And as much as I can, I try. But there are CAR T companies that actually also offer patients and care partners that kind of in-kind, kind of support like assistance like financial assistance with food, with lodging, with travel.

So, those are all things, again, I mean that helps the patient, but that also very much is helping the care provider as well because they also need to make sure that their expenses are taken care of, so. I always whenever I’m doing the initial meeting with a patient and the care provider, I always say check back and it’s, again, it’s with their CAR T nurse coordinator, check back with your CAR T nurse coordinator.

See if the CAR T that you are doing, see if that company offers any kind of actual assistance with transportation or with your lodging or whatever. And their patients who are flying from other parts of the country who come here where they don’t realize that their CAR T program actually can cover the cost of their flights when they’re going back and forth. So, yeah. So, it’s things like that.

How Did COVID-19 Impact MPN Treatment?

March 9, 2023/in MPN Access and Affordability, MPN Newly Diagnosed, MPN Programs, MPN TelemEDucation, MPN TelemEDucation Tool Box, MPN Videos AA, MPN Videos ND, Myeloproliferative Neoplasms /by Kara Rayburn

How Did COVID-19 Impact MPN Treatment? from Patient Empowerment Network on Vimeo.

How was MPN treatment impacted by the COVID-19 pandemic? Watch as expert Dr. Jeanne Palmer discusses the positive and negative impacts of COVID-19 restrictions on care of MPN patients.

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Transcript:

Lisa Hatfield:

All right, so, Dr. Palmer, the COVID pandemic has resulted in significant changes to many aspects of daily living for all of us, but for patients like myself who are living with cancer, there are different realities that we have to deal with, so can you give a brief overview of the impact that COVID-19 has had on MPNs.

Dr. Palmer:

So I think the impact of COVID-19, I think we just spoke about some of the favorable things that telemedicine became a real reality, some of the detrimental things, enrolling in clinical trials has been very, very difficult because of the fact that, number one, the public health emergency, some patients weren’t able to travel. And then number two is, I think there has been sort of an exodus of people working in healthcare, I think healthcare has become extremely stressful because of all the pressures associated with the COVID pandemic. So having the appropriate staffing for clinical trials has been difficult, but one of the things that I think is coming out of this that I think will be really positive is there are a number of studies that are being looked at now that are actually creating ability to have some of the visits done by a telemedicine. So taking what’s not as critical to be seen in person, and what labs we don’t need to necessarily get that need to go to a central processing area, but there are actually ways that we are working with home health care companies with different labs to be able to provide some of this ability to do telemedicine, especially on the clinical trials where there’s monthly visits.

I have had patients travel from multiple different areas of the country to be on clinical trials. I’m usually more in the Southwest or at least the West Coast, but I think that with some of these changes, it’s going to be a lot more of a reality for it. So I think some of the pressures of the COVID pandemic will…again, there will be sort of a silver lining of it, and that we may have this ability to do that, because even if I looked at…you look at the pre-COVID clinical trials, if there was a trial that needed monthly visits, which a great number of them do, I would say the majority of my studies that I have for patients with MPNs require monthly visits, at least the first six months. Being able to have that extended out is hugely important and will allow access for it, so if we can have a virtual visit, even every other visit, that can make a big difference in somebody’s ability to access new treatments.

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What Role Does Telemedicine Play in Acute Myeloid Leukemia Care?

October 8, 2021/in Acute Myeloid Leukemia, AML Best Care, AML Programs, Empowered Patient & Care Partner: Ask the Expert /by GIna Craig

What Role Does Telemedicine Play in Acute Myeloid Leukemia Care? from Patient Empowerment Network on Vimeo.

In acute myeloid leukemia (AML) care, how can telemedicine be used? Watch as expert Dr. Catherine Lai shares different situations where telemedicine has served as a helpful tool and instances when in-person visits are optimal for patient care.

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Transcript:

Sasha Tanori:

My care team suggested a clinical trial for a new drug focusing on improving my lung function, fortunately, my lungs improved on their own. Dr. Lai, not every AML patient is offered a clinical trial as a care option, what advice do you have for AML patients who are seeking clinical trials, and what’s the best way to locate one?

Dr. Catherine Lai:

Yeah, so this is an area, a huge area of unmet need, I would say in general, across all oncology trials, and I think less than 10 percent of the patient population is on trials, there’s a lot of stigmas around clinical trials and are you getting…are you getting a drug that we don’t know what’s going to work, am I being…am I being tested? In oncology, I would say for the most part, we try to make trials where you’re being measured to the standard, so you’re getting the standard plus, or we’re trying not to…just in terms of doing what’s best for the patient, in general, I don’t offer trials to patients where I don’t think that there’s scientifically a rationale for those drugs, but to answer your question, the best place to look is on clinicaltrials.gov. That’s cumbersome. If you don’t know what you’re looking for, I can give you a lot of unnecessary information. There are a lot of other resources out there, The Leukemia & Lymphoma Society is a great resource. I know that they have online or people that you can talk to in terms of helping you direct specific clinical trials, I know depending on where you live in the country, there are other local new chapters, oncology chapters that we have that can help patients find…

And have access to clinical trials, and then I think the biggest thing is just if a patient is with the community oncologist, having enough education to say, can I have a referral to an academic institution where they can ask those questions and get that information, and local community oncologists are fantastic, but they see everything, they see breast cancer, they see one cancer where the academic centers were specialized where all I see is leukemia and MDS kind of acute leukemias. So, it’s just a different set of knowledge.

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool

September 20, 2021/in LC Programs, LC TelemEDucation, LC TelemEDucation Survivorship, Lung Cancer /by GIna Craig

Lung Cancer Patient Shares Why Telemedicine Should Be a Long-Term Tool from Patient Empowerment Network on Vimeo.

Can lung cancer patients look to telemedicine as a long-term tool in their care? Watch as lung cancer patient Jill explains how telehealth has been a benefit for her care and how it can serve as a benefit for other patients.

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Transcript:

Jill:

In the future, I hope that telemedicine plays a really significant role in my care and in the care of others as well, so I would really like to not have to travel to my cancer clinic for every single appointment. For some of them, I definitely want to go. There are times when we want to look our doctor or nurse in the eye and really have strong, stronger communication, but for the most part, I would rather not have to travel and I live really close to my cancer center, so I always think about people who live farther away, and there are so many people who travel hours, there are people who travel days to get to their appointments, there are people who have to leave their communities and be, away for an extended period of time, and that’s not something that I would want to do, especially when we’re in a going counter treatment, we can feel so alone and fragile, and I would rather that people had more support and other people with them could stay at home, could stay in their communities and just have a call and their people could be with them if they wanted it during the call, they can all gather around and listen to.

And I think it matters so much. It’s not just convenience, it’s better care for people to have their loved ones near them, that’s one thing we’ve learned during COVID, even more so that it’s not good to be alone. It’s good to have our loved ones near us supporting us, and so as much as possible, if we can keep telemedicine as an option to use for the times when it doesn’t really matter if we’re in person or not, let’s make that choice, let’s make second opinions available let’s work out whatever permissions need to be in place for people to get care across regional lines or state lines, let’s get those things in place so that we can provide the best care possible, and let’s always be thinking about our most vulnerable people, and those are usually the people in the rural and remote regions, the people with a really hard cancer diagnosis, the people who are feeling alone and vulnerable, let’s take it, care of them.

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How Can Myeloma HCPs and Nurses Help Manage Patient Concerns?

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