Michael S. Leapman, MD, MHS, highlights a study of patient experiences with tissue-based genomic testing during active surveillance for prostate cancer.
Tissue-based genomic testing is commonly utilized in patients with prostate cancer who are considering or receiving active surveillance; however, the overall patient experience with this testing has not been extensively explored.
Accordingly, Michael S. Leapman, MD, MHS, and fellow researchers conducted a qualitative descriptive study comprised of in-depth, semi-structured interviews of patients with low- or favorable-intermediate-risk prostate cancer undergoing active surveillance. The interviews were designed to gain an understanding of the patients’ experiences with biopsy-based genomic testing as they made decisions regarding management of their prostate cancer.
In this interview, Leapman, an associate professor of urology and clinical program leader, Prostate & Urologic Cancers Program, Yale Cancer Center, describes the background and findings of this study, which he presented at the 2023 Genitourinary Cancers Symposium.1
The purpose behind this study was to understand and elevate the experience of patients with prostate cancer who undergo active surveillance. And so there had been a proliferation of new tools that help us risk stratify and diagnose prostate cancer in general, and for the subset of patients who are diagnosed with a low grade, non-aggressive prostate cancer who monitor their disease, genomic testing has been one of the tools that has been useful to identify patients who may be at higher or lower risk for reclassification or progression over time.
These tools we know, empirically, do stratify the disease; they tell us about the disease biology, but we wanted to understand what it was like for the patients to undergo this testing. What was their conception and what was their experience with interpreting these results? Because these tools are increasingly patient facing. Patients see the reports, they interact with them, and they use them practically when making a decision about, “Should I do surveillance?” And so that was our reason for doing this study.
In this qualitative study, we tried to sample a population that was representative of our patient mix. We took purposeful efforts to make sure that we included racial and ethnic minorities that are historically underrepresented in prostate cancer studies. We took explicit emphasis to include patients who are Black and patients who are Hispanic or Latino, as well.
We also wanted to draw from patients who were seen by community-affiliated providers, academic providers, and patients treated at the Veterans Affairs hospital.
Probably the biggest factor is the recommendation of a physician. We found that consistently; the physician is usually the driver of should you get genomic testing or not. Sometimes it's entirely driven by the physician and the testing occurs, and then their patient is made aware of it afterward. Sometimes there is a shared decision where it's brought up as a potential option. And really, quite interestingly, in in some cases, patients undergo genomic testing and have no idea about it.
It's so clear, at least from this experience, which is not representative of all patients, but among our sample, that patients really want to know more about their testing. We heard from several patients that they were very much in the dark about it, that they understood some components of it and they thought it was helpful, but had a lot of questions. So, I think that it's sort of an obvious call to action to physicians to really make sure that we break this down, because even though we may be including these tests in our recommendation and in our decision making, patients are curious about it; they will often see the reports, get their hands on it, and may have questions that they don't feel comfortable asking. I think the message to me is to really slow down and make sure patients have the opportunity to ask the questions they want and to give a structured overview of the important information.
These genomic tests are taken from biopsy specimens or radical prostatectomy specimens. Patients often don't know about that. That's one of the interesting things we found is they expect that they might need an additional sample or something has to be taken. And so, there's no pain from it. This is taken from an existing biopsy. And so the only issue that we found which came up frequently is that there can be financial concerns because there is variable covered by insurance companies. A consistent theme we found was that this can induce anxiety and concern about whether or not it will be covered. And even if it is covered eventually, there may be a period where the patient receives a notification from their insurance company that they're reviewing it, and that can induce anxiety.
Well, qualitative research is interesting. We're drawing from a very small population, a small sample of patients, and we do not mean to imply that this is nationally representative of the experience of all patients with prostate cancer. But it is really useful to bring out themes and generate hypotheses and help understand patient experience. So I think that's an important limitation.
Another one is that we drew from patients who were enrolled in active surveillance. So there are patients who might have undergone testing, who, using that information, decided not to do surveillance and decided to be treated. So it is not representative of every person who has prostate cancer, but the subset who've elected active surveillance and stayed on it for a little bit.
Absolutely, it's been really been eye-opening. Even as a clinician who sees patients and orders these tests, it's a very different experience to hear it and digest this information from a different perspective. And so I think it really is a call to action to find ways to convey information to help enrich and expand what those conversations look like.
Some of the interesting findings that we uncovered were that patients often conflate genomic testing with genetic testing. And so these genomic tests that we're talking about are measures of gene expression levels—so, mRNA. Patients often think that this is a genetic test, that it's measuring some inherited characteristic or some inherited predisposition. And so that's a simple, easy result that hopefully we can try to explain and be clear about.
The main message is that patients have a wide variety and broad range of informational needs when it comes to tissue-based genomic testing in localized prostate cancer.
1. Leapman M, Sutherland RA, Gross CP, et al. Patient experiences with tissue-based genomic testing during active surveillance for prostate cancer. J Clin Oncol 41, 2023 (suppl 6; abstr 333). doi: 10.1200/JCO.2023.41.6_suppl.333