Page 15 – Patient Empowerment Network

What are some ways that cancer patients can be empowered by healthcare providers? Expert Dr. Isaac Powell from Karmanos Cancer Institute shares his perspective on ways patients can take charge of their health and situations that may be outside their control.

Related Resources:

Dr. Isaac Powell: Why Is It Important for You to Empower Patients?

Dr. Ronald Chen: Why Is It Important for You to Empower Patients?

Dr. Sameh Gaballa: Why Is It Important for You to Empower Patients?

Dr. Yaw Nyame: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Isaac Powell:

I tell my patients that they have to take charge of their health. They have to talk to the doctor. You have to ask the doctor challenging questions. Then you have to do things that are going to help you as well. You have to be responsible for your own health, such as losing weight if necessary, such as exercising if necessary.

There are things that can cause things that you can’t control, like the pollution of the air and the water. But even in those situations, you need to challenge that and say, we need to do something about this polluted area where I’m living. And so those are the kinds of things that I discuss with my patients. Take charge of your health in every aspect.

Dr. Ronald Chen: Why Is It Important for You to Empower Patients?

January 4, 2024/in EPEP, EPEP Videos /by Kara Rayburn

Dr. Ronald Chen: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Empowering patients and care partners is key to helping them to make informed care decisions. How can experts provide the right information about various options based on what matters most to the patient? Prostate cancer expert Dr. Ronald Chen with the University of Kansas Medical Center shares his approach to empowering patients so they can make the individual decision for them and their family.

Related Resources:

Dr. Silvina Pugliese: Why Is It Important for You to Empower Patients?

Dr. Sameh Gaballa: Why Is It Important for You to Empower Patients?

Dr. Yaw Nyame: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Ronald Chen:

I empower my patients by giving them the necessary information, so that patients and their caregivers are empowered to make the best decision for them. I think for every cancer patient, there’s always a balance that’s struck between how aggressive the treatment should be, and also how important quality of life is to them. And every patient may make a different decision among the different options that are available.

So as a physician, giving patients the right information about the different options and about the implications in terms of side effects and quality of life and survival is so important, so that each patient is empowered to make the individual decision for them and their family.

Are There Worldwide Links to Aggressive Prostate Cancer?

January 4, 2024/in PC Activated, PC Activated Expert Interviews, PC Videos WPS, PC Whole Patient Support, Prostate Cancer /by Kara Rayburn

Are There Worldwide Links to Aggressive Prostate Cancer? from Patient Empowerment Network on Vimeo.

Does aggressive prostate cancer occur more often in specific population groups? Expert Dr. Isaac Powell from Karmanos Cancer Institute discusses some regions with high prostate cancer incidence outside the U.S., the impact of inflammatory cytokines, and how screening recommendations may change.

Related Resources:

How Can Advanced Prostate Cancer Care Barriers Be Overcome?

How Can Prostate Cancer Disparity Gaps Be Overcome?

How Can Advanced Prostate Cancer Disparities Be Reduced?

Transcript:

Lisa Hatfield:

So, Dr. Powell, worldwide are there factors that drive aggressive prostate cancer?

Dr. Isaac Powell:

Yes, let me address that. In 2015 it was reported that in Ghana, the incidence of prostate cancer was higher than in the United States. It’s also been found in the Caribbean, Jamaica specifically in Haiti, that the incidence in prostate cancer is greater than among African Americans in this country. So that takes us to the question of what is it about Africa that’s responsible for this aggressive cancer. And so I’ve been looking into that issue and finding that it’s not all Sub-Saharan Africa, it’s the West Africa. It’s consistent with the slave trade and what is it about West Africa and also Central Africa that is causing this. And I also found that in East Africa, the incidences of prostate cancer as well as breast cancer is less than West Africa. So what now we’re talking about the environment. What is it about the environment of West Africa versus East Africa. And the environment is in West Africa considered a rainforest and in East Africa is considered a different environment.

The diseases are different. In West Africa, you have such disease as a malaria and yellow fever, acute inflammatory diseases, West Africa, I mean East Africa, you don’t have that you have other things. So it’s the environment of West Africa, the rainforest specifically that causes those particular diseases. Now the genetics is, in those poor inflammatory cytokines that we’ve discussed that causes prostate cancer and, in fact, other benign diseases to be more progressive, protect against these acute infections. So this is…the immune system is very complex. In some cases it protects, in some cases it drives the cancers. This is what is…therefore, cancer is what is called an autoimmune disease. And so what the protection does, it selects the population in West Africa. The population that’s selected, because people don’t die from malaria because of these high expressions of poor inflammatory cytokines but, they do then die from chronic diseases such as cancer because those same genes drive the cancers.

Now, the worldwide scientific organizations have shown a map of West Africa and Central Africa where malaria is very high. That same map shows that prostate cancer is more aggressive in that same area where malaria causes diseases. So the environment has a significant impact on the genome. The environment specifically impacts what I mentioned earlier, the oxidative stress, which is activated by reactive oxygen species. The reactive oxygen species is what is called an unpaired electron which makes it inactive and want…and therefore interacts with various environmental factors. These environmental factors also will activate through RNA methylation. Those two factors are the part of the genome that interacts with the environment, and those two factors interact with pro-inflammatory cytokines. So there is a triangle there that interacts or interplays during cancer and other diseases, and that’s where the environment impacts on the genome causing more cancers in particular populations.

Now, in terms of European Americans, there’s a difference between the Northern European genome gene pools and Southern European gene pools and prostate cancer. And Northern Europe prostate cancer is more aggressive compared to Southern Europe. So it’s not just among people of color. In fact, the color makes very little difference in whether you have an aggressive cancer, particularly in Sub-Saharan West Africa as well as in European. So I just wanted to make that point. And not many people are talking about this, because this is what is called population genetics. Epigenetic, transgenerational, hereditary genetics, those genes are transferred through populations over generations. So that’s what I’ve been learning more recently and there needs to be more discussion about population genetics. We know about familial hereditary, but this is different. This is population hereditary genetics.

Lisa Hatfield:

That is so interesting. So do you think over time there will be recommendations for…I think it depends too on funding for it, but for screening in certain areas of the world for prostate cancer or for any type of cancer where they have found this to be the case?

Dr. Isaac Powell:

Absolutely. That’s going to be a little while, but that I think should happen, yes.

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How Can Advanced Prostate Cancer Disparities Be Reduced?

January 4, 2024/in PC Activated, PC Activated Expert Interviews, PC Videos WPS, PC Whole Patient Support, Prostate Cancer /by Kara Rayburn

How Can Advanced Prostate Cancer Disparities Be Reduced? from Patient Empowerment Network on Vimeo.

What are some ways that advanced prostate cancer disparities can be reduced? Expert Dr. Isaac Powell from Karmanos Cancer Institute discusses early detection, recommended screening ages for African Americans versus European Americans, and how some government agencies can aid in reducing disparities.

Related Resources:

Are There Worldwide Links to Aggressive Prostate Cancer?

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

Do Prostate Cancer Genetics Differ in African Americans?

Transcript:

Lisa Hatfield:

So, Dr. Powell, in your work, have you come across any innovative approaches or interventions that have shown promise in reducing racial disparities and improving outcomes for patients with advanced prostate cancer?

Dr. Isaac Powell:

Yes. Number one, educating the community about prostate cancer. Early detection is extremely important. I tell them that they should get their PSAs and digital rectal exams. I also tell them again, about obesity and exercise, how important it is to do that because it may prevent prostate cancer. And in terms of advanced disease, to just try to do the best they can and prolong in the survival by participating in clinical trials. And so I do quite a bit of educating in the African American community. In fact, in the ‘90s, we went to 51 churches, African American churches to talk about the prostate cancer and we also did testing. And what we learned in the ‘90s that mistrust factor was a major factor that prevented men from going in to be tested.

We also learned that men really don’t take care of their bodies as they should, and women have played a major role in the healthcare of men. So we start educating women about prostate cancer and encouraging their husbands to come in for examination, and very frequently, the wives have to bring their husbands in for testing or insist that they do that. I have this statement, I have a slide that says, men, they better care of their cars than they do of their bodies. And, in fact, they deny that they have any symptoms, and when they do, they don’t do anything about it until it’s too late.

Lisa Hatfield:

I have one follow-up question to that too, so you mentioned screenings, and I looked up prior to talking with you just to see what the general guidelines are for screenings for men, for prostate cancer, and it seems like they run the gamut. Do you have recommendations, or do you think the recommendations will change guidelines for screening and given your data and your research, is there a difference in screenings between European Americans versus African Americans?

Dr. Isaac Powell:

Yes. Because of what I’ve been talking about the cancer grows faster, and the significant cancers, the ones that are growing faster and become metastasized began in the 40s in African Americans, and so for European Americans has been recommended testing at age 50. I recommend age 40, American Cancer Society recommends age 45. Now, I believe at age 40, and I tell my patients that’s when they should start, African Americans that is, start testing for prostate cancer, specifically the PSA and digital rectal exam, and particularly if they have a family history. Now, the family history, if they only have one or two members is not much different than the aggressiveness among African Americans or European Americans.

If they have five or six members, not just a prostate cancer, but breast cancers as well, that means that they have a strong family history for having prostate cancer. If they have breast cancer, ovarian cancer in their family, or colon cancer, lung cancer, all those cancers are responsible for having a cancer and any specific cancer, if you have prostate cancer, breast cancer, you’re at risk for having colon cancer, for example. So that’s more recently talked about, multiple cancers in the family are even more important than having just prostate cancer in your family.

Lisa Hatfield:

Dr. Powell, given your expertise, what policy changes or healthcare system reforms do you believe are necessary to tackle the racial disparities in advanced prostate cancer care on a broader scale?

Dr. Isaac Powell:

Yes, policies are made by the government essentially. And so you have to encourage CDC, Centers Disease Control, US Preventive Services, which has done a disservice and prostate cancer. In fact, in 2012 they had that PSA did not show any evidence of preventing death from prostate cancer. They rescinded that 2017 recognizing that their recommendation 2012 was incorrect, and so US Preventive Services and the CDC, as well as the National Institute of Health NIH, have to come together and say, this disease is not only prostate but breast cancer, triple-negative breast cancer, colon cancer, lung cancer, all of these are more aggressive among African Americans, and we have to make a statement that screening has to be done earlier, education has to be emphasized.

And, in fact, COVID testing, it was almost mandatory on the circumstances that that happened. We used to demand that syphilis tests be tested if you got married. The government can also make it mandatory to be tested if your age, 45, American 50 for prostate cancer and maybe other cancers as well. So the government has to play a major role in establishing policies for testing, and I think that that would be very helpful in eliminating the disparity.

Lisa Hatifield:

And then from the patient perspective, it sounds like, and just trying to clarify this to when you talk about screenings for a patient to get screened to the appropriate time, that includes both the PSA test and the digital rectal exam, is that correct?

Dr. Isaac Powell:

Absolutely.

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How Can Advanced Prostate Cancer Care Barriers Be Overcome?

January 4, 2024/in PC Activated, PC Activated Expert Interviews, PC Videos WPS, PC Whole Patient Support, Prostate Cancer /by Kara Rayburn

How Can Advanced Prostate Cancer Care Barriers Be Overcome? from Patient Empowerment Network on Vimeo.

How can barriers to advanced prostate cancer care be overcome? Expert Dr. Isaac Powell from Karmanos Cancer Institute discusses medical mistrust in the African American community and advice he gives to patients about prostate cancer screening and prevention.

Related Resources:

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

How Can Advanced Prostate Cancer Disparities Be Reduced?

Are There Worldwide Links to Aggressive Prostate Cancer?

Transcript:

Lisa Hatfield:

Are there any challenges unique to minority communities that hinder access to advanced prostate cancer treatments and therapies? And do you have thoughts on how these barriers can be effectively addressed?

Dr. Isaac Powell:

I do. First of all, the diagnosis has to be made. And so that’s made by screening, by the PSA testing and digital rectal exams. Now, some people are talking about, well, we don’t need to do the digital rectal exam. That absolutely is not true. You can have a very aggressive cancer and have a normal PSA. We know that the PSA is not 100 percent accurate in diagnosing, predicting that you may have prostate cancer sometimes.

And I’ve had several patients who had normal PSAs, abnormal rectal exams, and as a result, I’m biased with them. If you don’t do the rectal exam and you have a normal PSA, you may miss aggressive cancers. So definitely have your usual rectal exam, excuse me. And once after that, if you have a biopsy, and if it is positive, then again I think that aggressive therapy is the way to go, if you’re in good shape.

Now, people are afraid of cancer. I mean, afraid of surgery. I’ve had surgery, so I can talk to them about what I’ve had and what you go through. Men are also concerned about losing their sexual function and those kinds of things related to the treatment of prostate cancer. And I can tell them that the quality of life is okay after that because we have ways of treating sexual dysfunction, the pill that everybody knows about, as well as injection and penis and ultimately the penile prosthesis. So that can be fixed.

And the other issue of losing control of the urine, that can be fixed as well. And so those are the things I tell people about not specifically among African Americans. There’s the genetic and the biology that I have to discuss, but one of the things that drives these genetic cells is obesity.

Obesity can produce these pro-inflammatory cytokines. So I always advise them to, if they are obese, to reduce their weight and their fat, particularly belly fat. That’s challenging because people have difficulty losing weight. The other thing is exercise. Exercise is a key that I think it is the most important factor in treating many health conditions, exercise. And what exercise does, and this has been studied in breast cancer, it decreases the expression of the genes that I described earlier. In terms of prior driving the cancer and breast cancer, they’ve found it decreases the pro-inflammatory cytokines. I described the tumor necrosis factors IL-6 and IL-8. So that’s important, exercise. So those are the things that I tell patients. And now in terms of advanced disease there are clinical trials that are there.

And we do these trials to decide what’s the best treatment for cancer, even though we don’t have “a cure.” Now, the problem among African Americans is that they don’t trust these clinical trials because of the abuse that African Americans have suffered through slavery and all the other kinds of things when they’ve been treated as less than human, like animals being operated on without having any anesthesia and many other abuses that have occurred. And so there’s this major distrust now that’s very difficult to eliminate in the Black community, especially if there are very few African American doctors to take care of them. So what I think that we have to fix that question of distrust, and that’s going to take a while, but I talk to them always about this mistrust issue, because I can’t see everybody, although we do need more African American doctors and nurses to take care of them and to encourage them to participate in clinical trials and to be seen as a person who is going to be taking care of them in clinical trials, that’s very important.

Often we talk about access to care, but particularly African Americans that mostly live in large cities where there is access to care. But, in terms of one particular example that’s brought up on occasion is what has occurred in Baltimore and other big cities where I talk to an African American, you know Johns Hopkins is right in the middle of the African American community. So it’s not about access again, it’s about mistrust. And I said, “Well, why don’t African Americans go to Johns Hopkins?” Well, she says, “If you walk past Johns Hopkins, they may steal your bodies.” I said, what? I didn’t believe that, but I’ve been reading literature, particularly one called the Medical Apartheid where they talked about African slavery, where they dug up the bodies of slaves to practice the anatomy.

And so that’s where this idea occurred. At night, they would dig up the bodies and do this, and not only in Baltimore, but other cities as well. So again, the mistrust issue is very difficult to resolve because of those issues. And people talk about that, well, I just don’t trust the white healthcare system, period. And don’t want to go until they’re having symptoms, and then they have no choice. They have to go. And by this time, the cancers are more advanced and cannot even prolong life expectancy in those particular patients. So I’m not sure I answered your question in terms of what a person or what I would do to activate participation in the healthcare of advanced disease.

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Do Prostate Cancer Genetics Differ in African Americans?

January 4, 2024/in PC Activated, PC Activated Expert Interviews, PC Videos WPS, PC Whole Patient Support, Prostate Cancer /by Kara Rayburn

Do Prostate Cancer Genetics Differ in African Americans? from Patient Empowerment Network on Vimeo.

Do the genetics of prostate cancer vary in African Americans? Expert Dr. Isaac Powell from Karmanos Cancer Institute discusses what research has shown about gene expression and what occurs in the body in African Americans versus European Americans.

[ACT]IVATION TIP

“…patients need to take charge by asking questions about the therapy. Again, ‘is it going to cure me, and is the chemotherapy going to cure, immunotherapy going to cure? If not, how long do we think that I will live?’ That’s a good question, that I’d like to know if I were a patient.”

Related Resources:

How Can Advanced Prostate Cancer Disparities Be Reduced?

How Can Prostate Cancer Disparity Gaps Be Overcome?

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

Transcript:

Lisa Hatfield:

So, Dr. Powell, I just read a bit about your really impressive research, particularly with regard to the biology and genetics of prostate cancer. Can you provide an overview of your research focus on how prostate cancer impacts African Americans in comparison to other ethnic groups?

Dr. Isaac Powell:

Yes, I would certainly love to do that. In 2010, we found that the cancer grows faster among African Americans compared to European Americans. And those are the terms we use now, as opposed to Black and white. In science, we use those terms. And so at that point, I thought that this may be driven by the genetics and biology. So in 2013, we used what now has been considered the artificial intelligence.

We use bioinformatics, which is computational biology, and gene interactive and network analysis to evaluate the cancer tissue. And so at that point, we identified, and we asked the question, are there genetic differences between African Americans and European Americans? And what they found were driver genes, driver genes being the genes that drive the cancer, that make the cancers carry out a function, a mechanistic function, as opposed to passenger genes that are just associated with the cancer, just as in a car, the driver is the one that controls the car, the passenger sits there. These passenger genes, yes, they’re associated with aggressive cancer, but they have minimal or no function. The driver genes are the ones that are controlling the cancer, the function mechanism of the cancer progression. And so we identified in our analysis 21 genes that were different between African Americans compared to European Americans, different in terms of the expression of the disease, not different genes, but different expression of the genes.

What we found is that African Americans have a greater expression of inflammatory genes and transcript genes. And I’ll be more specific about that in a moment. Whereas European Americans had a higher expression of lipid metabolism genes. Those are genes that are associated with fatty acids as well as unsaturated fatty acids, specifically omega-6 as opposed to omega-3. But there is a connection between these two gene interactions at one particular molecule called tumor necrosis factor. And this gene then interacts with both the lipid metabolism genes as well as other inflammatory cytokines. And the genes that we found that were more specific in among the inflammatory genes were the pro-inflammatory cytokines, and those were IL-6 tumor necrosis factor, IL-8, and IL-1B as well as CXCR4.

These are what are called pro-inflammatory cytokines and chemokines. And they carry out functions that cause the cancers to invade. First of all, the cancer initial is cancer cells are stuck together. We call them adherent. They have to come apart before they can spread and go elsewhere. Well, these genes cause that it’s called epithelial mesenchymal transition. And once that happens, they’re capable of being transferred to distant sites such as the bone. And they also cause increased blood flow to the cancer. They also cause the oxidative stress that is driven by a molecule called reactive oxygen species.

And we’ll come back to that particular molecule because that’s important. Once it causes the oxidative stress, this causes DNA damaged repair genes to develop as well as mismatch genes. This mismatch means there are gene molecules that are stuck together, and there is an order. This order is upset by this particular oxidative stress, and those are mutated once they are repaired, and they impact on the mitochondria, which is a molecule in the cell nucleus that controls the chemistry of the cell.

And then this activates cancer stem cells, which is really important. And this is where we are going now with the cancer research. So TNF, the tumor necrosis factor IL-6 and IL-8, and the IL means interleukins. That’s what that stands for. They activate that pathway, the oxidative stress pathway. They also individually activate other pathways that lead to cancer stem cells. And I mentioned cancer stem cells because that’s the reason why chemotherapy and immunotherapy and all the drugs that we’ve used don’t work because the cancer stem cells undergo mutations and these mutations change the character of the cell.

And that’s why the cancer cells resist that after a certain period of time, now these drugs will work and prolong survival, but they do not cure them because of the cancer stem cells. And so the cancer stem cells, in summary, are driven initially by the pro-inflammatory cytokines. So my research currently is to, well, how do we inhibit these pro-inflammatory cytokines? And that’s where we are now trying to develop a drug. We’re at the stage of mouse at this time, mouse biology and testing the drug in mice, not ready yet for human testing. So that’s where my research is headed, and I believe that that is going to work if the drug works.

Lisa Hatfield:

So just a follow-up question to that is, as a if I were a patient of yours or a family member, I might ask, so with your findings, do you think that this could lead to a cure, for example, for advanced prostate cancer?

Dr. Isaac Powell:

Yeah. I hate to use the word cure. The word I use is that we, our goal is to eliminate death from prostate cancer. That’s the term I prefer, because when we talk about cure, we have to know what causes it in order to really be certain as we are curing it. Because I don’t know whether what we’re doing is going to eliminate death, but that’s our goal. So I don’t like to use the word cure, because that’s the magic word and everybody gets excited. So I don’t want to get people excited too soon. So that’s where I am with my research.

Lisa Hatfield:

Well thank you so much for that. And do you have an activation tip for patients for this question, Dr. Powell?

Dr. Isaac Powell:

Yes. I think that, again, patients need to take charge by asking questions about the therapy. Again, is it going to cure me, and is the chemotherapy going to cure, immunotherapy going to cure? If not, how long do we think that I will live? That’s a good question, that I’d like to know if I were a patient. In fact, I’ve had prostate cancer and bladder cancer, so mine was early, so we didn’t get into those kinds of questions. But I like to know whether is this going to be something soon or later? Nobody can tell you when you may pass away from any cancer. I never give a patient any time. If they ask me, “Well, am I going to live six months or three years?” I don’t know. Because everybody’s different. Everybody responds differently to these particular treatments. So, but ask the questions as specific as possible that you’d like to know about the treatments, because there are several treatments, and there may be many answers.

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How Can Prostate Cancer Disparity Gaps Be Overcome?

January 4, 2024/in PC Activated, PC Activated Expert Interviews, PC Videos WPS, PC Whole Patient Support, Prostate Cancer /by Kara Rayburn

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.”

Related Resources:

Are There Worldwide Links to Aggressive Prostate Cancer?

Do Prostate Cancer Genetics Differ in African Americans?

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

January 4, 2024/in PC Activated, PC Activated Expert Interviews, PC Videos WPS, PC Whole Patient Support, Prostate Cancer /by Kara Rayburn

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.

Related Resources:

How Can Prostate Cancer Disparity Gaps Be Overcome?

Do Prostate Cancer Genetics Differ in African Americans?

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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