Tag Archive for: Black patients

How Can Myeloma Nurses Start Clinical Trial Conversations at Start of Care?

/in , /by

How Can Myeloma Nurses Start Clinical Trial Conversations at Start of Care? from Patient Empowerment Network on Vimeo.

What are some strategies for myeloma nurses to initiate clinical trial conversations at the outset of care? Advanced practice provider Charise Gleason explains methods her clinic has used for advanced practice providers and the improvements they have observed in their clinical trial participation rates.

Download Resource Guide  |  Descargar guía de recursos

See More from EPEP Myeloma

Related Resources:

Do Myeloma Treatment Advancements Create Care Challenges?

 Best Practices: Crafting Myeloma Clinical Trial Conversations to Individual Patient Needs

 How Can Myeloma HCPs Overcome Unforeseen Practice Related Barriers?

Transcript:

Dr. Nicole Rochester:

We’ve been talking about this team-based approach. We know that nurses serve as key coordinators of care in the myeloma trial setting, as well as other members of the healthcare team. So from your perspective, what are some recommended strategies that you can share to encourage advanced practice providers, specifically how to initiate the clinical trial conversation at the outset of care?

Charise Gleason:  

First, we need to educate our advanced practice providers. So for new APPs coming into our system, part of their onboarding is the research mission, exposing them to the clinical trials, exposing them to what we have available. We have a weekly research meeting, I’m sure Dr. Cole has similar practices. And then our group has a separate meeting once a week, where we meet for two hours. The myeloma team, we have APPs who are off that day who call in for this meeting, because we go over our patients, we talk about what clinical trials are available, that’s just how we practice and we think about that.

I would like to add to that, referring to a center early is so essential as well, and for us to start having that conversation. And I’ll talk a little bit to build on something Dr. Cole said with our patient population.In Atlanta, in our database, 40 percent of our data is based on Black patients. And we enroll about 32 percent to 33 percent of Black patients on clinical trials. And what our work on trials has showed us too, if you give the same access to every patient, you have good outcomes and good outcomes for Black patients, if not better, than white patients. So we all need to be versed on that, whether you’re the research nurse, the clinic nurse, the physician, the advanced practice. And so we really do bring that approach to taking care of our patients.

 And then, managing those side effects and having that open dialogue. So patients aren’t surprised by things. And I’ll use talquetamab (Talvey), for instance. We have a patient who is still on the original trial, who relapsed on a BCMA targeted therapy. Early on, these side effects were new to everybody. And she wanted to come off the trial month end. And it was that education piece and working with her, holding the drug, that now almost two years later, she’s still in remission, tolerating the drug. And so those are the stories and these are the experiences we have. We’re giving really good drugs on clinical trials, and patients are responding well.

Share Your Feedback:

How Can Prostate Cancer Disparity Gaps Be Overcome?

/in , , , , /by

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.

[ACT]IVATION TIP:

“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.”

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Are There Worldwide Links to Aggressive Prostate Cancer?

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.

Share Your Feedback

How Do Non-Melanoma Skin Cancers Impact Non-White Populations?

/in , , , , , /by

How Do Non-Melanoma Skin Cancers Impact Non-White Populations? from Patient Empowerment Network on Vimeo.

Do non-melanoma skin cancers occur differently in non-white populations? Expert Dr. Silvina Pugliese explains how the appearance and location of squamous cell cancer and basal cell cancer can vary in non-white patients.

Silvina Pugliese, M.D., is a Clinical Assistant Professor of Dermatology and Attending Physician at the Stanford Medicine Outpatient Center and Stanford Cancer Institute. Learn more about Dr. Pugliese.

[ACT]IVATION TIP

“…recognize the disparate presentations of non-melanoma skin cancers in patients who are not white. So this includes pigmented basal cell cancers. So looking out not just for shiny red bumps, but also blue or purple bumps on the skin, making sure that patients know and also doctors know how to look within areas of wounds, chronic non-healing wounds and also scars and in different locations such as just…such as the genital skin and the perianal skin, as well as the lower legs where we might see squamous cell cancer in skin of color patients.”

Download Guide  |  Download Guide en español

See More from [ACT]IVATED Non-Melanoma Skin Cancer

Related Resources:

An Oncodermatologist Shares Treatment Updates for Basal and Squamous Cell Skin Cancers

Which Non-Melanoma Skin Cancer Treatments Are Available for Patients?

 Occupational Exposures and Non-Melanoma Skin Cancer | Understanding Risk Factors

Occupational Exposures and Non-Melanoma Skin Cancer | Understanding Risk Factors

 Hopeful Outcomes In Immunotherapy for Non-Melanoma Skin Cancers

What Is the Role of Immunotherapy for Non-Melanoma Skin Cancers?

Transcript:

Mary Leer:

In more recent years, the incidence of cutaneous squamous cell carcinoma is increasing not only in non-Hispanic whites, but also in Hispanics and Asians. What are we learning about how non-melanoma skin cancers impact non-white populations?

Dr. Silvina Pugliese:

In dermatology, we’re certainly making a more concerted effort in recent years in studying squamous cell carcinoma in patients of all skin types. Most of our studies in the past were in white patients or lighter skin patients, but in recent years we’ve realized how important it’s to make sure that we know how non-melanoma skin cancers impact all patients, including our skin of color patients.

A few examples of how squamous cell cancer may impact non-white populations differently include where these skin cancers present. So, for example, squamous cell cancers may present in different locations on the body. So when we think about common squamous cell cancer locations, we think about areas exposed to a lot of UV, tops of the ears, the nose, et cetera.

We know that in skin of color patients we might see more of these skin cancers on the lower legs or on the feet or in genital or perianal skin. And that’s important, because we as dermatologists need to make sure that we’re examining all of these areas when we’re doing a full body skin exam.

In addition, about 20 to 40 percent of all squamous cell cancers diagnosed in Black patients are occurring within scars or areas of chronic inflammation such as wounds. It’s, therefore, really important for us to educate patients on the fact that these are areas that could be problematic in the future and need to be evaluated.

Other ways that squamous cell cancer impacts non-white populations is that patients may present…skin of color patients may present with more aggressive disease. There was one study looking at Mohs defect sizes, meaning when surgical procedures are done to remove a skin cancer, what’s left behind after skin cancer is moved is called the defect.

And because some of these skin cancers are more advanced, some of these squamous cell cancers, for example, are more advanced, they will have a larger area of skin removed, which as you can imagine really does impact how the skin heals the risk of scarring, the risk of having any longer term complications from that procedure.

There are a number of things that we can do better on the dermatology side in terms of educating patients about what to look for on their skin and also things that we can do about educating each other. And I’m talking about medical school and residency education in identifying skin cancer in skin of color patients.

Another thing I did want to mention is that basal cell cancer, which is our most common type of skin cancer, has a very different look in patients with skin of color. So it might have more of a purple or blue appearance than the classic pink shiny bump that we talk about. And then finally there is a rare tumor that we call DFSP that is actually more likely to occur in Black patients and can often have a scar-like appearance. This is a rare soft tissue tumor that can involve the deeper skin sometimes into the fat and even muscle.

And patients with skin of color are more likely to present with larger tumors.  So my activation tip for this question is to recognize the disparate presentations of non-melanoma skin cancers in patients who are not white. So this includes pigmented basal cell cancers.

So looking out not just for shiny red bumps, but also blue or purple bumps on the skin, making sure that patients know and also doctors know how to look within areas of wounds, chronic non-healing wounds and also scars and in different locations such as just…such as the genital skin and the perianal skin, as well as the lower legs where we might see squamous cell cancer in skin of color patients. So overall I think education all around for our doctors and our patients will help our skin of color patients have their skin cancers, their non-melanoma skin cancers diagnosed more properly. 

Share Your Feedback:

  Create your own user feedback survey

Addressing Racial Disparities in CLL Care

/in , , , , , , , /by

Addressing Racial Disparities in CLL Care from Patient Empowerment Network on Vimeo.

How are CLL racial disparities being addressed? Dr. Adam Kittai explains abstracts presented at the American Society of Clinical Oncology (ASCO) 2022 conference that examined CLL disparities and shares resources for patients who feel they’re struggling to receive equitable care. 

Dr. Adam Kittai is a hematologist and an assistant professor at the The Ohio State University Comprehensive Cancer Center – The James. Learn more about Dr. Kittai, here.

See More from CLL Clinical Trials 201

Related Resources:

How Can Clinical Trials Be Accessed?

 
 Overcoming Known Disparities and Access for CLL Patients

 Why Should CLL Patients Consider Participating in a Clinical Trial?

Transcript:

Katherine:

We touched on research at the top of the program, but are there other areas of research that you’re excited about and that patients should know about? 

Dr. Kittai:

Yeah, so one of the things that I think is being really talked about in cancer care – and medical care in general – is if disparities exist between minority patients and white patients. And I think this is a really, really important topic.   

So, the American Society of Clinical Oncology, which had the conference recently, really made this a mainstay point of the conference this year and there were a lot of abstracts that were defining whether disparities exist and hopefully, by defining whether disparities exist, we’re able to target those disparities in order to make outcomes equal for all of our patients.  

So, in the CLL world, one of the things that I alluded to is a lot of our therapies can be really expensive. So, these new therapies are really expensive, they really widen the disparity gap for patients who are minorities, as well as patients who come from socioeconomic status.  

Katherine:

Absolutely. 

Dr. Kittai:

And so, there were two abstracts. One was an oral presentation that looked at the National Cancer Database in ASCO that showed that Black patients do have worse overall survival than white patients. And then, I actually did my own study looking at the SEER database, which also showed the same exact thing. Even when controlling for socioeconomic status.  

So, I think addressing these disparities, making sure that there’s equity amongst our patients, that everyone has access to these drugs and can afford them, especially when they make our patients live longer and are safer than chemoimmunotherapy in CLL is very, very important.  

Katherine:

Dr. Kittai, if a patient feels like they’re not getting equitable care, are there resources available for them?  

Dr. Kittai:

Yeah, so one of the things that I love about the CLL society, is that they have a section called Access an Expert, I believe. So, look on the website, I’m not sure it’s actually called Access an Expert, but it’s a way for all patients to get a second opinion from one of the CLL experts listed on the website. And so, if somebody is feeling like they’re not getting access to the most beneficial treatment, for whatever reason, seeking a second opinion and using the CLL Society’s website to find that second opinion, I think would be a great way for someone who feels that way to get access to the care that they deserve.  

I believe there are other ways to do this through the Lymphoma Research Foundation, as well as LLS. But I know for sure on the CLL Society, there is a link that you can click that you can get access to a second opinion.  

BIPOC Lung Cancer Patients and Health Disparities

/in , , , , , , , , /by

BIPOC Lung Cancer Patients and Health Disparities from Patient Empowerment Network on Vimeo.

What do some BIPOC lung cancer patients experience in terms of health disparities? Experts Dr. Nicole Rochester and Dr. Olugbenga Okusanya explain health disparities at the different stages of lung cancer diagnosis and treatment – and note differences in diagnosis and survival statistics. 

See More from Best Lung Cancer Care No Matter Where You Live

Related Resource:

Transcript:

Dr. Nicole Rochester: 

So I want to talk about racial and health disparities, ethnic and health disparities, specifically in lung cancer care. I know that you have done some research in this area, and certainly being a person of color, this is something that I would imagine you relate to, so we know that the CDC and many other healthcare organizations have now declared racism a public health crisis, and certainly in 2021, we continue to see worse outcomes for cancer and many other chronic illnesses in people of color, so I’m curious, what do you think are the notable health disparities that are consistently seen in treating BIPOC patients living with lung cancer?  

Dr. Olugbenga Okusanya: 

Yeah, unfortunately, this is an area of interest of mine. And it turns out that the disparities are literally every single stage, there’s not an aspect of lung cancer care, which there is not a significant disparity that hinders the ability of minority patients to get better care, period at all stages. So overall survival for lung cancer for Black patients is worse than white patients, even though Black patients get diagnosed on average two to three years younger than their white counterparts. Black patients are less likely to get surgical therapy for early-stage disease, which is the actual care for an early-stage disease dates than Black patients, than white patients, that gap has been narrowing over the last 20 years, but it is by no means closed. Black patients are unfortunately less likely to get an appropriate work-up to get the indicated tests. They are also less likely to get the chemotherapy when it is indicated, and they are less likely to be enrolled in clinical trials. So, literally at every step there is a significant inequity that affects Black patients, and I think it’s really disheartening to see in a field where lung cancer is the most common killer and cancer, and frankly, there are lot    s and lots of patients who have options, who have good options that never get investigated and never get delivered. 

Dr. Nicole Rochester: 

That is extremely heartbreaking, and it’s sad to hear that we see the same disparities in lung cancer that we see with every other chronic condition, with every other cancer, certainly what we’ve seen recently with COVID-19 as well. And it really underscores what you said previously, which is the importance of being an advocate for yourself and doing your research and making sure that you really are getting the best care.

How Can Prostate Cancer Patients and Providers Help Ensure Quality Care?

/in , , , , , , , /by

How Can Prostate Cancer Patients and Providers Help Ensure Quality Care? from Patient Empowerment Network on Vimeo.

How can prostate cancer patients and providers help ensure quality care? Host Dr. Nicole Rochester asks Dr. Petros Grivas to share insights about available patient resources and ways that providers can help extend improved prostate cancer diagnostics and treatments to patients for better care.

See More From Best Prostate Cancer Care No Matter Where You Live

Related Resources:

How Can I Get the Best Prostate Cancer Care No Matter Where I Live?

Transcript:

Dr. Nicole Rochester: 

So, Dr. Grivas, how can we ensure that a patient’s geographic location doesn’t dictate the quality of care that they receive? 

Dr. Grivas: 

A very important question for sure, and I think as you point it out, we have touched upon this before, but I think it is definitely much more to be said and done. More importantly, I think the location has to do with multiple differences in social constructs, right? The location of the distance from a cancer center with expertise is one thing at the time to get to the cancer center is related to that, and also the social support that the patient may have, if for example, a particular treatment, for example, a clinical trial, the requires a weekly visit to the cancer center, is that the feasible thing for the patient who lives miles and miles away in the rural areas of Oklahoma or somewhere else. Can we design clinical trials that are more friendly to these scenarios that require less frequent visits. Can we provide, if possible, funding for housing closer to the cancer center, and there are examples of cancer centers doing that. They provide temporary housing for the patient to be able to be close to the cancer center, so they don’t even worry about going back and forth across the state lines sometimes. 

The other thing, of course, is insurance coverage, and again, this can have some relation to location, and it’s something we have to think about, how can we help our patients who have significant co-pays because of the recommended insurance to that location being supported by foundation or all other funds that the cancer center or the state, or again, other foundations, we have. The other issues about diagnostics and treatments, there has been some interesting discussion about particularly prostate cancer, about access to what we call next generation sequencing, which is a diagnostic test aiming to profile or fingerprint the cancer DNA to look for particular mutations that the cancer may have that may lead to a particular treatment options. 

 If, for example, mutation A is present, can we use a drug X that might be relevant in that context of a mutation and a recent data that was presented at ASCO 2021 showed that if you look at those mutations, they’re not very different between, for example, white and Black patients, there are similar types and frequencies of mutations. What is different is access to the test and, of course, access to the therapy of the test. So, I think we have to do a better job bringing ourselves to the community, extending our opportunities to the patient to get connected with the healthcare system, and they’ll build bridges to bring the patient and closer to the cancer center offering those tests. Work with patient navigation to help patients understand the significant value of the follow-up, but also provide them with a way that there’s equitable access to diagnostics and treatments. 

Is MGUS More Prevalent in BIPOC Communities?

/in , , , , , , , /by

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.

See More From the Myeloma TelemEDucation Empowerment Resource Center

Related Resources:

 
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.