Tag Archive for: ethnic groups

Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances?

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Do AML Bone Marrow Biopsies Show Racial and Ethnic Variances? from Patient Empowerment Network on Vimeo.

Are racial and ethnic differences shown in acute myeloid leukemia (AML) bone marrow biopsies? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses what early AML studies are showing and proactive patient advice for bone marrow biopsies.

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“…ask your doctor about what the different things that they’re looking for in the bone marrow biopsy are and kind of what they mean to you. Sometimes, they can be looking to see if the leukemia has cleared after a treatment. Sometimes, they’re looking to see if there’s a change in the mutations that they saw before in your leukemia and are seeing if you know something is different than they can now target.”

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Novel AML Therapy Use | Impact of Socioeconomic Status and Other Factors

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 How Bone Marrow Biopsies Impact Acute Myeloid Leukemia Treatment and Care

How Bone Marrow Biopsies Impact Acute Myeloid Leukemia Treatment and Care

 What Is the Role of Bone Marrow Biopsies in AML Treatment?

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Transcript: 

Lisa Hatfield:

With these bone marrow biopsies or the disease in general, AML in general, do you see any unique patterns with different racial or ethnic groups? Because we see so many disparities in healthcare, any way in that you see different patterns of maybe genetic mutations with AML or any differences in the general course of the disease?

Dr. Andrew Hantel:

I would say that we…there are hints of those things right now. So there are some early studies that are showing, there are a couple specific mutations that have either increased rates or decreased rates in different racial and ethnic groups. The extent to which any of those have been really done on a wide scale and also done to the extent that we can say it actually makes a difference in different groups’ outcomes we haven’t established yet. And so right now, it’s more just hints that something is a little bit different. But the extent to which that is actually changing the course of somebodies diseases hasn’t been established. And it seems like some of these changes aren’t necessarily in the same mutations that we think of as having a lot of significance in terms of altering somebody’s prognosis.

And so while it may be  activating slightly different pathways, they aren’t the ones that are, we think in our mind are the most important ones for saying how well or how not well somebody might be doing with their leukemia. There’s a lot more research that is being actively done by my colleagues both at Dana-Farber and nationally to understand that and may come that some of what I just said becomes not true, because there are new findings seen.

And that I hope that we can understand some of those differences and pathways more. But to the extent that anything actionable is done based on those things right now, the answer is no. Right now, we know that anybody can get any of these mutations, and it’s more just that a difference of when we’re looking at a population as a whole, something is a little bit more frequent in one group than another. But that can also come down to who in that group was actually included in the study that we’re doing. And whether or not that exists really across that whole population we have yet to be able to say anything about.

Lisa Hatfield:

Thank you. And do you have an activation tip regarding bone marrow biopsies? And I’ll tell you right now, if you tell patients they might one day not have to have them, they’ll be thrilled, but you don’t have to put that in your activation tip. [chuckle]

Dr. Andrew Hantel:

So my activation tip for this question is, just to ask your doctor about what the different things that they’re looking for in the bone marrow biopsy are and kind of what they mean to you. Sometimes, they can be looking to see if the leukemia has cleared after a treatment. Sometimes, they’re looking to see if there’s a change in the mutations that they saw before in your leukemia and are seeing if you know something is different than they can now target.

And just understanding a little bit more about what their thinking is and how they’re trying to help you by doing the bone marrow biopsy because we…it’s not a test anybody likes to do or have done on them. But we always do it for a good reason, and it’s to make sure that we can better control or better cure leukemia.

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What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face?

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What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face? from Patient Empowerment Network on Vimeo.

Do minority and ethnic groups face acute myeloid leukemia (AML) clinical trial inequities? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses research study results of NCI-designated cancer centers of AML versus other cancers and proactive patient advice for clinical trial access.

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“…patients to ask about where the nearest sites of care are for them that have clinical trials on at least historically, and then reaching out to those sites to ask, ‘Can I have a consultation?” Am I somebody who might be eligible for any of the clinical trials that you have?’”

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Why Is Post-Access Enrollment Vital in AML Clinical Trial Participation?

 Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Underrepresented AML Clinical Trial Groups | What Solutions Are Underway

Transcript: 

Lisa Hatfield:

Dr. Hantel, what primary findings are in your study regarding inequities and clinical trial participation among minoritized race and ethnic groups with cancer at the comprehensive cancer centers?

Dr. Andrew Hantel:

So we performed a couple of different studies on this, I think together, they’ve collectively found that there are significant disparities in clinical trial participation among minoritized racial and ethnic groups at comprehensive cancer centers. And just to take a step back and say, what are comprehensive cancer centers? They’re basically a designated center, and the designation is provided by the National Cancer Institute (NCI), and that basically says that this place is of such and such a level of quality in terms of their delivery of cancer care and their research that they perform, and so these are generally larger academic centers that have a lot of clinical trials, have a lot of experts across different cancer types, including AML. And those are the ones that we are wondering if people had equal or equitable access to, in other cancers compared to AML.

A lot of the disparities in clinical trial participation is really because these different minoritized groups have less access to these comprehensive cancer centers, so they could really never be considered for trials, because they’re just not seen at places where the trials are taking place. This is the case for a lot of common solid tumors, such as breast and colon cancer, where very, very large proportions of patients are seen in the community.

And this means that in leukemia, however, we found that participation disparities were not only due to access, but because the leukemia is less common because a lot of docs actually almost preemptively refer some of their patients to get seen, some of the disparity is kind of shifted, and it ends up becoming not as much an issue just of access but also of getting into the trial after they’re seen at the center.

And this can be because of a variety of things, there are reasons that we can go into in a second, but we kind of also want to make the statement in the context of it not being a one-size-fits-all answer. There are some cases where comprehensive cancer centers actually both allow great access and allow equitable enrollment on their trials, and there are other comprehensive cancer centers that have had…and continued to have issues with this. 

So I also just want to make sure to make that distinction. But after somebody gets down to a center, you have the process of, is there a trial at the center that’s actually right for your specific type of leukemia and the stage of the disease, and if you’re up front or relapsed or all of these other nuances, and then you have the questions of, are you eligible, are you offered that trial, and then are you interested in partaking in that trial, and is it feasible for you to participate?

So there are all these other steps after that point of access, and in general, what we saw was that it was kind of these later steps that were as much more of an issue for equitable enrollment for leukemia as that first step of access. And so it’s slightly different from what we’ve seen in other cancers, and so the answers and the solutions for that are going to be different.

So my activation tip for this question would be for patients to ask about where the nearest sites of care are for them that have clinical trials on at least historically, and then reaching out to those sites to ask, “Can I have a consultation?” Am I somebody who might be eligible for any of the clinical trials that you have?” That might be something where it does take you to that site to actually get evaluated and see if there is anything available, but that would be the first step.

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How Can Prostate Cancer Disparity Gaps Be Overcome?

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How Can Prostate Cancer Disparity Gaps Be Overcome? from Patient Empowerment Network on Vimeo.

 How can research bridge the gap in prostate cancer outcomes among different demographics?  Dr. Ronald Chen from University of Kansas Medical Center speaks to the work he and his colleagues are conducting around prostate cancer disparities and the different outcomes for different populations of patients who have the same diagnosis.

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“My activation tip for this question is, my team’s research on how patients make decisions and the barriers has really led to a lot of insights that now allows us to implement programs to help tackle these barriers. And so I would advocate for any cancer patient to be willing to volunteer for a research study if one presents itself as an opportunity. It’s only through patients sharing their time and knowledge with researchers can we really learn about these critical issues, and then the participation will help future patients.”

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Are There Worldwide Links to Aggressive Prostate Cancer?

 Do Prostate Cancer Genetics Differ in African Americans?

Do Prostate Cancer Genetics Differ in African Americans?

 How Can Advanced Prostate Cancer Care Barriers Be Overcome?

How Can Advanced Prostate Cancer Care Barriers Be Overcome?

Transcript:

Lisa Hatfield:

Dr. Chen, are there any ongoing or upcoming projects in your research group that aim to bridge the gap in prostate cancer outcomes between different demographic groups?

Dr. Ronald Chen:

Yes. One of my areas of research focus is prostate cancer disparities and the different outcomes, different groups of patients have with the same diagnosis. We know from a lot of research from my group and other groups, is that in prostate cancer, there are large disparities.

One example is that Black patients with prostate cancer have twice the mortality rate as white patients with prostate cancer. That’s been known for quite some time. But what causes some patients to die twice as much as others is not as much known. And I’ve done a lot of research to look at this area. Part of this mortality disparity relates to the understanding that some patients for some reason choose less aggressive treatment than others. So if you have an aggressive prostate cancer, but you’re choosing less aggressive treatment than others, then that may explain some of the higher rates of death.

And so what my group has done is to try to figure out why some patients choose less aggressive treatment and what that decision-making process looks like. I’ve had a large project where I have been following about 1,500 men with prostate cancer, it was a…what’s called an observational study where we enroll these 1,500 patients at the time of diagnosis. So as soon as they were diagnosed, we enrolled them and what we asked them is, “Hey, do you mind if we just follow you along with your course through treatment, through your survivorship course? We want to follow and just learn what you decide to do and why you decided to do it, and what your outcomes are.”

And for these 1,500 men, we have now followed them for about 10 years, really going through the journey with them and trying to learn as much as we can. And part of this study was when these men were making decisions about treatment, we were able to ask them a series of questions to really try to tease out, “Why did you choose this versus that? How did you make your treatment process?” And this was a very unique study because actually, there are very few studies that have went through the process of decision-making with men and trying to tease out what’s important to them.

What we learned from this research, from this study, from these men who volunteered their time with us, is that some patients who had pretty aggressive prostate cancer told us that their cancer was not aggressive. So we know by following these patients, we know from their medical records what their diagnosis was, and we knew how aggressive the cancer was. But when we asked these men to tell us what their perception was with their diagnosis, a portion of these men who had aggressive cancer told us that their cancer wasn’t that aggressive.

And we found that people who thought that their cancer was not aggressive, those were the patients who ultimately chose less aggressive treatment, because they didn’t think it was that important, it wasn’t that aggressive. And so, part of what we learned from this study was that a patient’s understanding of their diagnosis is a really critical factor in making the right decision.

Another piece that we learned from going through this process with these patients was that there was also a portion of the men who have financial concerns when they’re making the decision about treatment. Financial concerns relate to, “Well, I’m concerned that this treatment will impact my ability to work, I’m concerned about the cost of this treatment, I’m concerned about how this treatment will impact my family’s burden having to take care of me.” Those are all financial considerations.

And patients who had these concerns were also more likely to choose treatment that’s not as aggressive. And so we found out through this process, through these men sharing their decisions with us, that an accurate understanding of the diagnosis and some of these financial concerns really drove decisions of treatment for prostate cancer patients.

So now that we understand that, the question is, what is the next step? What can we do to help alleviate this problem? Because I think we can’t take away these concerns, and if patients have the right treatment, that will improve and optimize their outcome as well, and reduce disparities. 

And so part of what we’re doing here at University of Kansas is that we have really increased the availability of financial navigators and social workers for cancer patients. We know that a portion of cancer patients have financial concerns. We know that we don’t do as good of a job identifying patients who have concerns and then finding resources to help them.

Maybe it’s transportation, maybe it’s cost of treatment, maybe it’s the drug cost, and being able to identify these concerns early and finding resources to help would also, if we remove this barrier, then patients will be able to choose treatment that’s right for them without those concerns. And so, that’s one thing that we’re doing, now that we understand that’s an issue, we’re doing that to see if we can tackle and reduce this problem.

So my activation tip for this question is, my team’s research on how patients make decisions and the barriers has really led to a lot of insights that now allows us to implement programs to help tackle these barriers. And so I would advocate for any cancer patient to be willing to volunteer for a research study if one presents itself as an opportunity. It’s only through patients sharing their time and knowledge with researchers can we really learn about these critical issues, and then the participation will help future patients. And so, I would advocate for anybody to volunteer for research study, if that’s something they’re willing to do.

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Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

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Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions from Patient Empowerment Network on Vimeo.

Does research in advanced prostate cancer address the disparities in outcomes among different racial and ethnic groups? Dr. Ronald Chen from University of Kansas Medical Center speaks to contributing factors, how far we have come and ongoing efforts.  

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Related Resources:

How Can Prostate Cancer Disparity Gaps Be Overcome?

How Can Prostate Cancer Disparity Gaps Be Overcome?

 Do Prostate Cancer Genetics Differ in African Americans?

Do Prostate Cancer Genetics Differ in African Americans?

 How Can Advanced Prostate Cancer Care Barriers Be Overcome?

How Can Advanced Prostate Cancer Care Barriers Be Overcome?

Transcript:

Lisa Hatfield:

How does your research address the disparities in prostate cancer outcomes among different racial and ethnic groups? And also, what are some of the key factors contributing to these disparities?

Dr. Ronald Chen:

I think there’s been a lot of research by my group and others looking at disparities in prostate cancer. And prostate cancer really is a shiny example of disparities. And what I think a lot of researchers has found is that, in prostate cancer there are clear disparities by a patient’s race. And what we know is that Black patients with prostate cancer have pursued less aggressive treatment, have more delays in treatment, and are twice as likely to die from prostate cancer compared to white patients, and that’s really a large gap that we need to do more research on to close.

With every cancer, and prostate cancer is no exception, screening is so important. If we’re able to screen and diagnose a cancer as early as possible, that gives us the best chance to cure cancer and for the best outcome for the patient. So access to screening is very, very important. I cannot stress that enough.

Access to clinical trials is also important. Clinical trials are the way for patients to access the latest, most promising treatment available. And we actually know from a lot of research that patients who are on clinical trials do better, live longer than patients who are not on clinical trials, and I think a lot of it’s because of the access to the latest agents. And so, being able to try to tackle this issue of access to screening for early detection and access to clinical trials, I think will be really important for us to tackle and reduce and minimize and eliminate the disparities that we see in prostate cancer.

I think the other really important aspect of disparities is actually also, I think, patient knowledge. Not every patient who has cancer who goes to see a specialist and they’re told the information, I don’t think that as physicians we do a good enough job of explaining a patient’s diagnosis and options to patients. And what we know from research is that a lot of patients leave the consultation not completely understanding what they were just talking about. They may not know how aggressive the cancer is, they may not know exactly what options are available, and I think that’s the communication aspect, whether it’s from the physician side or from the patient’s receiving side, we know that that’s not as good as possible.

And we also know that when a patient does not fully understand their diagnosis, that might lead to wrong decisions about delaying treatment and about wrong decisions in terms of choosing treatments that’s less aggressive than it should be. And so I think being able to work on better communication, better understanding of the critical information that’s transferred during consultation, I think, will be another way to address disparities that we see in prostate cancer.

Lisa Hatfield:

Great. Thank you. And backing up just a little bit, when you were talking about one of the factors being geographical rural area, if you had a patient come in and say, “Hey, I just read about this trial, but I live really far away from an academic center, a center that is running this trial,” do most clinical trials require a patient to live close to that center if they want to access a trial, or can they just check in occasionally? How do those typically work?

Dr. Ronald Chen:

I think that patients who live far away from a major cancer center can still find ways to participate in clinical trials because not all clinical trials require a patient to live close by. I’ll give an example.

I work at the University of Kansas Cancer Center, and we offer a lot of clinical trials. We understand that Kansas is a rural state, and we have a lot of places in Kansas where patients don’t live close to where we are in Kansas City. So what we have done at the University of Kansas Cancer Center, is actually, we have partnered with a lot of the smaller cancer programs around the state, so then we can all offer the same clinical trials. Even though, even trials that we offer at University of Kansas in Kansas City, through our partnership with smaller cancer centers around the state, patients can actually enroll in clinical trials and be treated closer to home on the same trial.

So I think that really increases access. But that’s only possible if a patient has heard about that opportunity and are able to then seek that out. But the network has been set up in our state, and some other cancer centers around the country have similar networks to try to increase that access.

I think the other thing to say is that there are many clinical trials for advanced prostate cancer using chemotherapy and more increasingly, oral pills to treat cancer. And you can absolutely have the opportunity of signing up for a trial, and if that includes a new treatment that’s an oral pill, maybe you only have to go for a visit every few months for a check-up, but you can take that prescription and the pill at home without having to have frequent visits. And I think that also makes a clinical trial participation feasible for a lot of patients.

So I really do think that, I think we’ve made a lot of improvements in clinical trial access over the past few years. I actually think the COVID pandemic has forced us to think about how to do this, and I think we’re doing a better job than we were five years ago. And so, I think even for patients who live in rural areas, clinical trial participation is possible in a lot of situations. 

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