This podcast was originally published by Cancer.net on September 3, 2019, here.
In this episode, we’re going to discuss 2 studies on patient experiences with clinical trials that will be presented at ASCO’s 2019 Quality Care Symposium. This annual meeting brings together health care experts to share strategies for cancer care issues and integrate these methods into patient care.
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Monika Sharda: Hi, I’m Monika Sharda, an editor on the Cancer.Net team and your host for today’s podcast. In this episode, we’re going to discuss 2 studies on patient experiences with clinical trials that will be presented at ASCO’s 2019 Quality Care Symposium. This annual meeting brings together health care experts to share strategies for cancer care issues and integrate these methods into patient care. I have with me 2 oncology experts who will help us understand these studies and why they’re important. Our first guest, Dr. Merry-Jennifer Markham is a hematologist at the University of Florida in Gainesville. Welcome, Dr. Markham.
Dr. Markham: Hi, hi. Thanks for having me.
Monika Sharda: And we also have with us Dr. Neeraj Agarwal, who is a medical oncologist at the University of Utah’s Huntsman Cancer Institute. Thanks for being with us, Dr. Agarwal.
Dr. Agarwal: A pleasure. Thank you.
Monika Sharda: So before we delve into the studies, I want to make sure we explain what clinical trials mean for any listeners who may not be familiar with the term. Can you provide a brief explanation of what a clinical trial is and how they’re used in cancer care?
Dr. Agarwal: Yeah, of course. So if we look at the definition of National Cancer Institute, how the clinical trial is defined that is a type of research study that test how well new medical approaches work in our patients. And these studies test new methods of screening, prevention, diagnosis, or treatment of a disease. These are often called as prospective clinical studies, but I make it simple for my patients. I tell them that to me the definition of a clinical trial is how to get cutting edge technology, which can be a treatment or a device, to my patients 5 years before FDA approval of that drug or a device. How to expedite availability of those cutting-edge technology to my patients is the definition I use for clinical trials.
Monika Sharda: Thanks. That’s a great way to put it. So let’s start by discussing the study that comes out of Seattle, Washington where researchers looked at whether participating in a clinical trial helped people with metastatic non-small cell lung cancer live longer. Can you tell us a little bit about how the study was conducted, Dr. Agarwal?
Dr. Agarwal: Yes, and this study, as you mentioned, was conducted in Seattle Cancer Alliance consisting of University of Washington and Fred Hutchinson Cancer Research Center, both based in Seattle, Washington. What the researchers did, they looked back at the records of patients with non-small cell lung cancer or simply advanced lung cancer who were treated in their institutions between January 2007 and December 2015. And they included 371 patients. One-third of those patients, almost 30% of patients were enrolled on 1 or more clinical trials. And other patients were not enrolled in the clinical trials. And they compared, basically, those patients. They looked at the survival of patients who were able to get on a clinical trial versus who did not. And very interestingly, patients who were enrolled on a clinical trial, their median survival was twice as much as those who did not get to enroll on a clinical trial. The overall survival in patients who were on clinical triasl who got to get treated on a clinical trial—at least one clinical trial—was 838 days compared to patients who did not go on a clinical trial who only lived for 454 days. This is even more interesting is because the researchers compared the patient’s disease characteristics, demographic characteristics, and they made sure that patients were evenly distributed from those characteristics. It’s not that patients who had more aggressive disease or who had a higher history or longer history of smoking, they got to be under control arm, which is that they did not get on the clinical trial. So patients in both groups were evenly matched for demographic and disease characteristics. So this basically tells me that if you get to enroll on a clinical trial, the overall survival is higher than if you do not.
Monika Sharda: And do we know why that might be? Why patients that were enrolled in clinical trials tended to live longer?
Dr. Agarwal: As I said, clinical trial allows me and my patients to have those technology or those drugs available to the clinic 5 years before FDA approval. And that’s the ballpark. It can be 7 years. It can be 10 years. It can be 3 years. But in general, 5 years is the mark I use with my patients. So if a patient is getting to be treated with a drug 5 years before that drug would be available by prescription, there is an advantage of time, because if we look at the median survival of this patient population, there is no way they could have just waited for that drug to get approved and be available by prescription in the clinic. So I think that’s a huge advantage, that they had access to a drug for their cancers which was not available to those patients who did not get to go on a clinical trial. I think that’s the number one, or the main advantage, why the survival is so much better in the patients who got to go on a clinical trial.
Monika Sharda: Right. And the other study focuses on clinical trial enrollment. So statistics show that less than 10% of people with cancer participate in clinical trials. For this study, researchers surveyed 120 doctors and clinical trial research staff and also 150 cancer patients to try and find out why participation is so low. So Dr. Markham, can you tell us briefly what the researchers found?
Dr. Markham: Sure. I think 1 of the things that is striking is that the number of patients who enroll on trials is so low, the percentage. And we know the barriers to clinical trial enrollments do exist. What this study showed actually was that the perceptions of what these barriers are, really differed between the physicians and research staff and the patients. So clearly we didn’t have a great understanding of the barriers on each side.
I’ll give you just a couple of examples. In this study, patients more often than physicians or research staff believed that trials are only available and only for people whose cancer is considered hopeless. We know that’s not reality, but that’s a perception that panned out in the study. Also more patients, more so than physicians or staff, believe that clinical trials don’t help an individual patient. And we know that not to be true. And I think that former study is a really good example of that where in the prior study participating in a clinical trial actually did improve survival. And then a third example is physicians and research staff in the study, more so than patients, were more likely to believe that patients decline a clinical trial due to either language or cultural barriers or due to a lack of understanding about clinical trials.
Monika Sharda: Where do you think these perceptions arise from that people have about clinical trials, just going back to the couple of examples that you gave? For example, people thinking that clinical trials are only used when their disease is hopeless or that they don’t actually help the patients themselves. Where do you think those perceptions stem from?
Dr. Markham: It’s hard to know, but I think communication or lack of communication about trials, or lack of enough communication about clinical trials is really a large part of the problem. I think that clearly this is evidence that we oncologists and cancer researchers maybe haven’t done a great job or as good a job as we should be doing when it comes to educating our patients. I think this study demonstrates that we do have a lot of room to improve on the patient education piece.
Monika Sharda: Do you have any thoughts on some specific ways that people with cancer and their family can work together with doctors to communicate better about clinical trials?
Dr. Markham: I think the more education on the cancer or various topics that patients want to bring up in the exam room, the more sort of preparation work a patient and a caregiver can do in advance of the visit the better. Coming to an appointment with a list of questions about trials for example can really help to guide a conversation. I think that it’s also a good idea to bring somebody with you to an appointment and this holds true for other reasons, including listening in and having some extra set of ears there to hear important parts of a discussion about a cancer diagnosis or prognosis or treatment. But really helping to sort of prompt questions about clinical trials may be useful.
I think for doctors, a good way to open up this conversation is just with open-ended questions. Some of the things I like to ask my patients are, “What do you know about clinical trials?” or, “What would you like to know about clinical trials?” And this is really a good way for me as a physician to gauge the level of understanding of a trial at the outset. And I can gauge whether there’s any perceptions or misperceptions that I can help to clarify. And it’s a great launching pad for a discussion about clinical trials.
Monika Sharda: Dr. Agarwal, did you have anything to add about this study?
Dr. Agarwal: I think I agree with everything Dr. Markham just said. In my practice, I spend a significant amount of time when I see a patient for the first time who has come to establish care in my clinic, on just orienting them on clinical trials regardless of whether they are currently eligible for the trial or we have a trial for them or not. I just talk to them about the clinical trials. And that is a theme in my practice. Even a nurse practitioner and nurses, the more our patients hear about clinical trials, I think more amenable they will be or they are, in our experience, to accept enrollment on a clinical trial down the line. But as Dr. Markham said, it’s not only 1 doctor or 1 nurse or 1 nurse practitioner. I think it has to be a more holistic approach educating at different levels. All the websites as we discussed as we know of from Cancer.Net, NCI, ClinicalTrials.gov. All those websites have great information on clinical trial availability of a clinical trial for a given disease condition or given stage of a disease. By doing all of those our patients can be made aware of all those websites other than the orientation in the clinic. So I think this has to be a global approach and which ultimately will lead to increased awareness and increased participation of our patients on clinical trials.
Monika Sharda: Thanks. And I appreciate you sharing some resources with our listeners of where they can learn more about clinical trials so they can be prepared to have these conversations with their health care team. And just a quick note for our listeners, you can learn more about clinical trials on Cancer.Net by visiting cancer.net/clinicaltrials. And there’s also a couple of other resources that Dr. Agarwal mentioned. Dr. Markham, did you want to add any other resources?
Dr. Markham: Sure. So Cancer.Net is definitely a great resource. And it’s written in a way that is easily understandable. The other 2 that I would mention are the American Cancer Society’s website and the National Comprehensive Cancer Network or NCCN. And both of those have very good information about clinical trials in general. ClinicalTrials.gov, as Dr. Agarwal mentioned, also does and can be a very useful tool at finding a specific clinical trial for a specific condition.
Monika Sharda: Great. Well, thank you both for taking the time to distill these studies and the takeaways for people with cancer and their loved ones. Is there anything else that you would like to note about either of these studies or about clinical trials in general that we haven’t already touched on?
Dr. Markham: Yeah, I was going to say I think I would just add that I commend the researchers who did these studies and are getting their work published. I think it’s important that we improve access to clinical trials as much as possible. And these two studies help to work in that direction.
Dr. Agarwal: I agree, 100%.
Monika Sharda: Great. Well, thank you both again for your time.
ASCO: Thank you Dr. Agarwal and Dr. Markham.
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