Does Cervical Cancer Care Differ Between Academic and Non-Academic Centers?
What are key points about advanced cervical cancer treatment in academic versus non-academic settings? Expert Dr. Shannon MacLaughlan from University of Illinois discusses patient care at academic versus non-academic cancer centers, multidisciplinary care, support services, clinical trials, and the importance of second opinions.
[ACT]IVATION TIP
“…there’s always a role for a second opinion, and insurance providers are mandated to provide coverage for a second opinion. And that can be an important door for you to open to make sure that your case is reviewed at one of those academic centers.”
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Transcript:
Lisa Hatfield:
Dr. MacLaughlan, what role do academic centers play in the treatment of cervical cancer? And how might patients at these centers receive different care compared to those at non-academic centers?
Shannon MacLaughlan:
An academic cancer center, or a cancer center that has been designated as a comprehensive cancer center, or a National Cancer Institute cancer center, is going to have a certain, they’re required to provide multidisciplinary care that meets the highest standard of care. So an academic center or an NCI-designated center will, by definition, have the internal quality metrics, ensuring that they are doing the right thing, which you shouldn’t have to guess whether or not your team is doing the right thing.
But one of the biggest contributors to cervical cancer existing is and/or recurring and women dying from it is that we don’t always do the right thing. So, an academic center, number one is going to provide for you a multidisciplinary team. You need to make sure that that team includes a gynecologic oncologist.
You may need a radiation oncologist. The best multidisciplinary care of the patient with cervical cancer also includes a palliative care team that can manage pain control and other symptom management effectively. And these centers are required to screen patients for other needs than just treating the cancer. So if you go to an oncologist, wherever we are, we are going to be experts in the cancer and how to treat it.
And hopefully, we are keeping up with the latest and greatest and most effective treatment options. And if you go to a cancer center that has NCI designation or is an academic center, then that should come with it…the understanding that taking care of a patient with cancer is more than just killing the tumor.
It’s about taking care of the patient and taking care of that patient’s family and taking care of that patient and their family in the context of their community. We see often in patients with cervical cancer, the need for transportation services, for social work support, not only to cope with the diagnosis, but to cope and navigate with the treatment that we lay out for you and how to plug it into your life and deal with the financial toxicities that come along with it. And those academic centers are going to be equipped with the teams who can connect you with smoking cessation and assist with food security and other things that contribute to your wellness.
The other important thing about academic centers is access to clinical trials. And in the world of cancer care, access to clinical trials is a marker of quality and better outcomes for patients. We are also starting to see, now that we’re looking for it, we’re starting to see that we can, oftentimes we see survival outcomes diverge based on things that it shouldn’t. Diverges for Black women, not as effective as white women.
We can close those gaps when patients participate in clinical trials. It doesn’t necessarily mean that a clinical trial is available to a particular individual and that they may not be eligible for anything in that moment, but access to those clinical trials is a critical big picture for successful treatment of cervical cancer or any kind of cancer.
And then finally, I would say that academic centers have the mandate of educating the next generation of providers, and we need to do better. So, for several years, I ran a clinic specifically for patients with cervical cancer. And just doing that, spending a day seeing patients, only patients, dealing with cervical cancer, was such an important learning opportunity for the residents and the medical students because I hate to tell you, but we are often taught in medical school that cervical cancer isn’t a problem anymore and that we cured it with successful screening.
But we didn’t. We haven’t actually made any headway meaningful in incidence of cervical cancer in a couple decades. So, it is important that we educate our next generation of providers that cervical cancer is, in fact, a problem. The treatment that we provide for cervical cancer is in and of itself very tasking and somewhat traumatic thing for a patient to experience. And providers need to learn how to provide culturally-accessible, empathic care for patients coming to the table with this particular kind of cancer.
So, that’s more of an ask than a recommendation. I ask you to go to an academic center so that you can teach the next generation. That’s really important to me. Now, my [ACT]IVATION tip for this topic is that you always have an opportunity for a second opinion.
Why does that matter? It matters because not everyone has access to an academic center for cervical cancer or any kind of cancer. You might not live near an academic center. You may not, even if you do live near one, you might not be able to get into one. But there’s always a role for a second opinion, and insurance providers are mandated to provide coverage for a second opinion. And that can be an important door for you to open to make sure that your case is reviewed at one of those academic centers.
Lisa Hatfield:
Okay, thank you. And I’m also a big advocate for getting an expert opinion, somebody who just sees those types of cancers. So, do you recommend if a patient is diagnosed with cervical cancer, they are not near an academic center, would you recommend that they do that at the time of diagnosis to try to seek out a second opinion or a consult at least once right at diagnosis? Is that the best time for that, do you think?
Shannon MacLaughlan:
Absolutely. The most effective time for a second opinion is before you start treatment. Once you initiate a treatment, there are very few certain…because you’ve started it, it’s almost always the best thing to continue doing it. Even if it’s not what I would have recommended to you to begin with. If you’ve already initiated it, you’re committed. So it’s tricky when you have a new diagnosis. It can be anxiety-provoking to have to wait for a second opinion or wait to get in for one or wait to start your treatment. But if at all possible, that’s the most effective time.
I would also add that many centers offer community doctors access to their tumor boards. I hate the term tumor board, but because it’s universal, I can’t change it. A tumor board is a multidisciplinary conference in which providers of each subtype gather and review cases. And so many academic and comprehensive cancer centers will offer that service to community physicians so that you may, if you can’t physically get to an academic center for a second opinion, then you may be able to have your case reviewed. There could be a telehealth option. Sometimes that’s an option when crossing state lines is necessary. And then finally, if all else fails, getting a second opinion on the pathology can be helpful.
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How Can Patients Stay Informed About New Treatments and Strategies in Gynecologic Cancer Care?
What gynecologic cancer care questions should patients and families ask? Expert Dr. Ramez Eskander from UC San Diego Health discusses the value of patient education, second opinions, credible resources, and proactive patient advice to help optimize care.
[ACT]IVATION TIP
“…be informed. Explore your options and opportunities. Again, there are strategies that are available to you both on the Internet, publicly available, but also through colleagues, through friends, and a network that you can build through support groups, even at your institutions. It’s never too early to ask about clinical trials so that you can make sure you’re educated and informed as you look to make decisions. Because if you try to take all of this into consideration and at one time point, it can be a little bit overwhelming.”
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Transcript:
Lisa Hatfield:
Dr. Eskander, as new treatments and strategies emerge, how can patients and their families stay activated and ensure they’re benefiting from the latest advancements? And what should they be asking their care team to make sure they’re up to speed with the latest in gynecologic cancer care?
Dr. Ramez Eskander:
This is so important to me for patients to feel like they’re empowered and educated. I believe that patients are their greatest advocates. This is where family and friends are also an important part of the care team. From my perspective, it’s very beneficial to have someone in the room with the patient as they’re having conversations about treatments and treatment strategies to take appropriate notes, to be informed, and to not feel bad about asking questions, to not feel bad about asking the relevance of a second opinion.
Any provider should never take offense to a patient asking for a second opinion. In fact, I would say, I encourage my patients. I say, listen, if you have questions and you…if you would like to get someone else’s perspective, please do so. I want that, and I want you to come back to me with potentially a different option or a question that my hope is to answer.
We have a shared goal of making sure our patients have the best possible clinical outcome. That is our north star. So as new treatments and strategies emerge, try to stay informed. There are multiple platforms available, of course, via the Internet, for example. I will just be cautious in saying not all of that information is accurate. So if you’re going to use a platform that’s publicly available, the web, make sure that you’re trying to go to areas where a resource is vetted and reliable.
The National Cancer Network, the NCCN, the National Cancer Institute, clinicaltrials.gov for clinical trials, vetted and established advocacy organizations, and then taking that information, using it as a foundation in which you can build upon when you have conversations with your providers. But again, this is where I think not just the patient alone, but patient, family, and friends can really work together to try to develop.
And all of our meetings, the cancer meetings that we have, for example, for gynecologic cancer as a Society of Gynecologic Oncology, there’s a foundation for women’s cancer. There are opportunities for education, the American Society of Clinical Oncology. These are publicly available resources, websites where you can go to and look for patient facing material to make informed decisions about the management of your cancers. And, of course, when you’re asking to talk about clinical trials, how do I stay up to date? Again, it’s a dialogue. It’s never too early to ask. I worry sometimes that patients don’t want to bring up a clinical trial, because they fear that bringing that up means that they’ve exhausted all treatment strategies.
Quite contrary to that, the earlier you begin the conversation, the greater opportunity you’re going to have to potentially identify a clinical trial for which you may be eligible. And that will help you through your treatment paradigm. Because if you don’t, you may pass that up, because you’re no longer eligible, because you’ve had too many prior lines of treatment, for example. And having that conversation early will also help you prepare as you go through the treatment paradigm so that if you need to make a decision about potentially enrolling in a trial, you’re established, you’re ready to do so rather than trying to effectively push this forward quickly without making sure that you have the required information that you need.
So it’s a multi-pronged approach. It’s going to require support systems, undoubtedly, multiple resources are available, and then subsequently engaging those resources to use that information to guide your conversations.
My activation tip is be informed. Explore your options and opportunities. Again, there are strategies that are available to you both on the Internet, publicly available, but also through colleagues, through friends, and a network that you can build through support groups, even at your institutions. It’s never too early to ask about clinical trials so that you can make sure you’re educated and informed as you look to make decisions. Because if you try to take all of this into consideration and at one time point, it can be a little bit overwhelming.
Lisa Hatfield:
Okay. Thank you so much. And I really appreciate your comment about it’s okay to talk to your provider about getting a second opinion. I was terrified of that, because I really love my doctor. He is great. And I didn’t want to bring that up, but anybody who’s watching this, Dr. Eskander said it’s okay to talk to your provider about seeking out a second opinion.
And it may help in your care in making decisions too. So I appreciate that you said that. And also that you said to make sure you go to vetted sites for information. When I was diagnosed with blood cancer, the first place I went to that I wasn’t supposed to was Google, got all kinds of information that I didn’t want to read. So go to those vetted sites. I think that’s great advice. So thank you so much.
Dr. Ramez Eskander:
Thank you, Lisa.
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Navigating Lung Cancer Clinical Trials: VA Support and Resources for Veterans
Navigating Lung Cancer Clinical Trials: VA Support and Resources for Veterans from Patient Empowerment Network on Vimeo.
How can veterans with lung cancer access support services for clinical trials? Expert Dr. Michael Kelley from Duke University School of Medicine discusses clinical trials at VA locations, support services to help access clinical trials, and proactive patient advice for transportation costs to clinical trials.
[ACT]IVATION TIP
“So sometimes the clinical trial will pay for transportation costs. Sometimes the clinical study will pay, and sometimes no one will pay. So you do have to ask whether that is provided, and if not, are there other resources that could be used to help pay for any transportation that would be needed?”
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See More from [ACT]IVATED NSCLC Veterans
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Transcript:
Lisa Hatfield:
So if a patient finds a clinical trial that’s outside of the VA, will the VA help coordinate that being a part of that clinical trial if it’s outside of the VA? And the other question I would have about that, are clinical trials done at all of the VA facilities or if a person sees one that’s done, maybe they go to a smaller facility, they have to go somewhere else, can they go to that larger facility for the clinical trial?
Dr. Michael Kelley:
Yeah, great questions. So several different answers to that. So there are…some VAs do clinical trials and some don’t. And any clinical trial is not open at every VA. So if it’s open at some VAs, it may not be open at other VAs. So if the veteran finds a clinical trial at another VA and they’re willing to travel to that other location, there are generally no barriers to doing that and to enrolling in that clinical trial at the other VA.
But let me start with the first part of your question is, well, how do I find a clinical trial? So this is, I think, a barrier that we’ve all realized, and we’ve set up a service that is called the Clinical Trial Navigation Service. So a provider can ask this service to talk with the veteran and to help find a clinical trial that might be appropriate for them and then to report that back to the provider. So they can talk about what geographic area would be appropriate for the veteran and then other characteristics of the veteran and their medical care that would help inform if there’s a clinical trial available.
In the VA or outside the VA, we’ve initially partnered a lot with the National Cancer Institute at the NIH Clinical Center in Bethesda, Maryland where they will actually provide transportation for people to enroll in clinical trials at that center.
So that’s one of the areas we’ve been working with and then a few other organizations or systems. So that is one thing is you have to find the clinical trial. And the other part of your question was, you know, will VA help the patient get there? Okay. So sometimes the clinical trial will pay for transportation costs. Sometimes the clinical study will pay, and sometimes no one will pay. So you do have to ask whether that is provided, and if not, are there other resources that could be used to help pay for any transportation that would be needed.
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Advice for Accessing Advanced Non-Melanoma Skin Cancer Clinical Trials
Advice for Accessing Advanced Non-Melanoma Skin Cancer Clinical Trials from Patient Empowerment Network on Vimeo.
Participating in advanced non-melanoma skin cancer clinical trials may feel overwhelming for some patients. Dr. Soo Park discusses how clinical trials fit into patient care and shares advice for overcoming obstacles to accessing cutting edge therapies.
Dr. Soo Park is a Medical Oncologist at Moores Cancer Center at UC San Diego Health. Learn more about Dr. Park.
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Transcript:
Katherine:
Beyond what has been approved to treat advanced non-melanoma skin cancer, where do clinical trials fit in?
Dr. Park:
Clinical trials are great, because they’re the reason why we have the drugs that we have today that are working so effectively. And so, I’m really fortunate to be at a center where we offer clinical trials for patients.
Clinical trials always fit in at any point in the journey, as long as they fit your disease. So, most of the clinical trials we have are for patients that have advanced disease, not for early stage, because the early stage patients don’t really need it; because with just simple surgery, they tend to do really well, and their cancer doesn’t really ever come back and cause issues.
But clinical trials are really important, because they’re the only way we can study a promising treatment option; see how well it works, and if it works really well, then move it further on to hopefully help a lot of other people. And that’s why we have immunotherapy today – is through clinical trials; and immunotherapy is used for lots of cancers.
Katherine:
Are there barriers to accessing trials? And if so, do you have any recommendations on how to tackle them?
Dr. Park:
Yeah, there are barriers to trials, and I think the thing that the cancer community is really trying to work on is barriers to accessing trials if you’re from an underrepresented population in medicine. So, based on your socioeconomic status, meaning how much money do you make or what your education level is, what race are you, what ethnicity, what is your background; because we know that there’s a disparity for those individuals. And so, I think really asking your doctor, staying curious; asking them, “Could a clinical trial help me?”
Even if you have no idea of really what trials there are, or what they really mean, you can just throw that word out; and that then, the doctor knows that you’re potentially interested, and they can actually give you the information and help you learn more about it, even if you don’t know much about it; because I think it’s still quite a black box, and we’re trying to overcome this barrier, but it’s difficult.
Katherine:
And what about researching clinical trials online? What sites would you recommend?
Dr. Park:
So, I have to admit that there are multiple sites, but sometimes they are not very patient-friendly. Even whenever I look at them, they are not very friendly. I think the largest repository of clinical trials is the NCI database. It’s just where every clinical trial that’s open has to be registered, and it’s run by the federal government, I believe. And because it’s not super regulated, it’s just the person working on the trial entering information, and they’re typically of a medical background, sometimes the information is not very easy to digest or understand.
So, I think really just letting your medical team know that you might be interested in a trial, then they can help you find the right trial for you. And if they don’t have one, they can tell you other areas or other centers that might have one. You are more than welcome to go search in Google and all that, but it can be really hard, and then I don’t want that to make the patient feel that this is not for them.
What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face?
What AML Clinical Trial Inequities Do Minority and Ethnic Groups Face? from Patient Empowerment Network on Vimeo.
Do minority and ethnic groups face acute myeloid leukemia (AML) clinical trial inequities? Expert Dr. Andrew Hantel from Dana-Farber Cancer Institute and Harvard Medical School discusses research study results of NCI-designated cancer centers of AML versus other cancers and proactive patient advice for clinical trial access.
[ACT]IVATION TIP
“…patients to ask about where the nearest sites of care are for them that have clinical trials on at least historically, and then reaching out to those sites to ask, ‘Can I have a consultation?” Am I somebody who might be eligible for any of the clinical trials that you have?’”
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Transcript:
Lisa Hatfield:
Dr. Hantel, what primary findings are in your study regarding inequities and clinical trial participation among minoritized race and ethnic groups with cancer at the comprehensive cancer centers?
Dr. Andrew Hantel:
So we performed a couple of different studies on this, I think together, they’ve collectively found that there are significant disparities in clinical trial participation among minoritized racial and ethnic groups at comprehensive cancer centers. And just to take a step back and say, what are comprehensive cancer centers? They’re basically a designated center, and the designation is provided by the National Cancer Institute (NCI), and that basically says that this place is of such and such a level of quality in terms of their delivery of cancer care and their research that they perform, and so these are generally larger academic centers that have a lot of clinical trials, have a lot of experts across different cancer types, including AML. And those are the ones that we are wondering if people had equal or equitable access to, in other cancers compared to AML.
A lot of the disparities in clinical trial participation is really because these different minoritized groups have less access to these comprehensive cancer centers, so they could really never be considered for trials, because they’re just not seen at places where the trials are taking place. This is the case for a lot of common solid tumors, such as breast and colon cancer, where very, very large proportions of patients are seen in the community.
And this means that in leukemia, however, we found that participation disparities were not only due to access, but because the leukemia is less common because a lot of docs actually almost preemptively refer some of their patients to get seen, some of the disparity is kind of shifted, and it ends up becoming not as much an issue just of access but also of getting into the trial after they’re seen at the center.
And this can be because of a variety of things, there are reasons that we can go into in a second, but we kind of also want to make the statement in the context of it not being a one-size-fits-all answer. There are some cases where comprehensive cancer centers actually both allow great access and allow equitable enrollment on their trials, and there are other comprehensive cancer centers that have had…and continued to have issues with this.
So I also just want to make sure to make that distinction. But after somebody gets down to a center, you have the process of, is there a trial at the center that’s actually right for your specific type of leukemia and the stage of the disease, and if you’re up front or relapsed or all of these other nuances, and then you have the questions of, are you eligible, are you offered that trial, and then are you interested in partaking in that trial, and is it feasible for you to participate?
So there are all these other steps after that point of access, and in general, what we saw was that it was kind of these later steps that were as much more of an issue for equitable enrollment for leukemia as that first step of access. And so it’s slightly different from what we’ve seen in other cancers, and so the answers and the solutions for that are going to be different.
So my activation tip for this question would be for patients to ask about where the nearest sites of care are for them that have clinical trials on at least historically, and then reaching out to those sites to ask, “Can I have a consultation?” Am I somebody who might be eligible for any of the clinical trials that you have?” That might be something where it does take you to that site to actually get evaluated and see if there is anything available, but that would be the first step.
What Are Common Barriers to Clinical Trials Access?
What Are Common Barriers to Clinical Trial Access? from Patient Empowerment Network on Vimeo.
Clinical trials are key to the approval of new breast cancer treatments. But what factors could prevent some patients from participating? Expert Dr. Jame Abraham reviews common barriers and emphasizes the commitment of the oncology community to improving trial access.
Dr. Jame Abraham is the chairman of the Department of Hematology & Medical Oncology at Cleveland Clinic and professor of medicine at Cleveland Clinic Lerner College of Medicine. Learn more about Dr. Abraham.
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Transcript:
Katherine:
Dr. Abraham, what are barriers to accessing clinical trials?
Dr. Abraham:
That’s a really good question. I think we need to continue to work on breaking down the barriers. And the most common barrier is, wherever she, or he, are going for the treatment, they don’t have access to a client. There’s no trial available. The second, let’s just say, if I can say, the lack of awareness from the provider, or the patient’s side, about the importance of trial. And then, third, some trials can be complicated. So, it requires multiple appointments, or multiple trips to the doctor’s office, or the hospital, or the cancer center. So, that may not be feasible for everybody. Somebody has limited access, limited support, it can be tough.
And then, let’s just say, that people have comorbid conditions, if I can say. Other conditions, heart disease, or other things, or they’re not able to be more active, and some of those things, can make that person ineligible for a trial.
So, there are a number of things, potentially, can be barriers, but I think, as an oncology community, as cancer centers, we need to continue to work on optimizing, or breaking down, these barriers.
As a nation, we have a huge – we have a lot of work in addressing the disparities in cancer care.
As you know, where you’re born, and it can be innercity, Cleveland, innercity, Detroit, or it can be in the Appalachia, where you’re born, and what’s your access to healthcare, that plays a major role.
And, of course, your race, and your education, I know that plays a major role in access to healthcare, and then, able to continue with treatment, and that plays a similar role in clinical trials, too. So, the number of patients entering clinical trials from different race, especially African American patients, are less, compared to the other patient population. So, there is a lot of work, need to be done, in addressing the disparities in cancer care, in general, and especially clinical trials.
Katherine:
And I imagine that’s a focus for many of the people working on trials?
Dr. Abraham:
It’s a focus for National Cancer Institute, it’s a focus for all the cancer centers, absolutely.
