Tag Archive for: Dr. Ronald Chen

Staying Proactive While Facing a Prostate Cancer Diagnosis

Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the prostate cancer community. Prostate cancer treatment options are ever-expanding with new treatments, and it’s essential for patients and families to inform themselves about testing, factors in treatment decisions, treatment types, and disparities in care. With this goal in mind, PEN initiated the [ACT]IVATED Prostate Cancer program, which aims to inform, empower, and engage patients to stay abreast of the latest in prostate cancer care.

Prostate cancer is fairly common with about 13 percent of U.S. men diagnosed in their lifetime. However, prostate cancer is highly treatable when detected early, and more is now known about screening and disparities in prostate cancer. PEN is excited to add information about prostate cancer to aid in screening measures and prevention of advanced prostate cancer.

Cancer survivor Lisa Hatfield interviewed experts Dr. Yaw Nyame from Fred Hutchinson Cancer Center, Dr. Ronald Chen from University of Kansas Cancer Center, Dr. Isaac Powell from Karmanos Cancer Institute, and care partner Sherea Cary as part of the [ACT]IVATED Prostate Cancer program.

Lisa Hatfield and Dr. Yaw Nyame

High-Risk Prostate Cancer and Population Genetics

High-risk patient groups should stick to screening recommendations for prostate cancer to help ensure early detection. Dr. Nyame shared current guidelines. “…the American Neurological Association (ANA) and the American Cancer Society (ACS) are rooted in the best available evidence and both recommend that high-risk populations which include people of African ancestry, individuals who have strong family histories of prostate cancer, so strong usually means first degree relative, grandfather, father, brother, and it’s important to remember that there’s crossover, so it’s not just prostate cancer, but if breast cancer runs in the family or colon cancer runs in the family, or cancers in general, that can put you in a high-risk category that those individuals should consider screening starting at age 40.

Dr. Issac Powell

Population genetics have identified some common factors that drive aggressive prostate cancer. Dr.  Isaac Powell explained some revelations of high-risk groups in West Africa, Central Africa, and Northern Europe. “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…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.

Lisa Hatfield and Dr. Ronald Chen

Prostate Cancer Disparities and Clinical Trials Distrust

Dr. Chen discussed prostate cancer disparities in Black patients in the U.S. “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.

The history of mistreatment of Black Americans in clinical trials has created a situation of distrust. Dr. Powell explained how the situation must be resolved. “…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.

Dr. Yaw Nyame

Solutions Toward Better Prostate Cancer Care

Dr. Yaw Nyame discussed solutions toward improved prostate cancer care. “…in this particular space is for Black and Latinx communities to think of ways to be partners in research and to really embrace the fact that it is their right to be at the table when we make decisions about how research is conducted, what the results of our research means and how we share those results so that they have impact in our communities. And so there are a variety of ways to be partners in research, sometimes it’s literally being part of the research team, like we do on showing up to meetings every week, and being engaged in the work in all forms, just asking to participate in the trial, being a member and a participant in the trial and making sure that your experience counts in the way we think about advancing the field of prostate cancer and making it better for everybody.

Care partner Sherea Cary shared her perspective toward better care. “…encouraging communication, encouraging the patient to share with others, other men, what their experience has been. It seems to me that when you’re in community with other people and you have something in common, then the person who is experiencing cancer or an illness, feel a connection, if they know that someone that they know has had it and survived it and seems to be doing well, that’s encouraging to them, and then we also want that person to pay it forward.

Empowering yourself as a patient includes gaining a clear understanding of your prostate cancer and thinking about clear goals for treatment. Dr. Yaw Nyame shared his perspective. “…when it comes to advanced prostate cancer is really thinking about what your goals of care are as a patient, meaning, what do you want to see happen in your treatment, what specific things do you want to have your doctor support? And I think understanding how to build a team that will help you support those goals of care is really important, but if you don’t know really clearly, and at least to the best of your ability, what you want to see happen in your care, I think it’s hard to then advocate for those things. 

[ACT]IVATED Prostate Cancer Program Resources

The [ACT]IVATED Prostate Cancer program series takes a three-part approach to inform, empower, and engage both the overall prostate cancer community and patient groups who experience health disparities. The series includes the following resources:

Though there are prostate cancer disparities, patients and care partners can be proactive in educating themselves to help ensure optimal care. We hope you can take advantage of these valuable resources to aid in your prostate cancer care for yourself or for your loved one.

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

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.

See More from Empowering Providers to Empower Patients (EPEP)

Related Resources:

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

Dr. Yaw Nyame: 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.

How Can Prostate Cancer Disparity Gaps Be Overcome?

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.

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Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

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.  

See More from [ACT]IVATED Prostate Cancer

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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