Between patient anxiety and insurance implications, there are several challenges associated with delivering germline testing to veterans with advanced prostate cancer. Learn more about these challenges and proposed solutions with Dr. Daniel Kwon, who presented the “Challenges in Patient-Centered Germline Testing Delivery for Veterans with Advanced Prostate Cancer” session at the 2024 ASCO Genitourinary Cancers Symposium.
Prostate Cancer Care: Overcoming Challenges in Delivering Germline Testing to Veterans
You’re listening to Project Oncology on ReachMD. On this episode, we’ll discuss germline testing delivery for veterans with advanced prostate cancer with Dr. Daniel Kwon. Dr. Kwon is an Assistant Professor of Medicine and an oncologist at the University of California, San Francisco. He’s also a physician at the San Francisco VA Medical Center, and he presented a session on this exact topic at the 2024 ASCO Genitourinary Cancers Symposium. Let’s hear from Dr. Kwon now.
This is a prostate cancer poster session; it's a qualitative study at the San Francisco VA where we're trying to improve informed decision-making for veterans with advanced prostate cancer who are thinking about doing germline testing.
So in terms of challenges in delivering germline testing to veterans with prostate cancer, I think there are challenges inherent overall, and ours was really focused on a certain part of delivery, which is the informed consent or the informed decision-making part of it. And we focused on this because there's not too much literature there, and also, it's a complex topic that involves considering on the patient’s behalf a lot of benefits but also risks or limitations. Some of these include anxiety, waiting for a test result that could have implications on themselves or blood relatives. And then there are various insurance implications too that I'll talk about in a bit. And so it's a complex topic we wanted to explore more. And what we found in our interviews was that in our cohort of 30 patients, all of whom were going to have this upcoming discussion with their oncologist about germline testing— we interviewed them about a week afterward; we also audio recorded the conversations—that there were two big challenges, and they were kind of loosely related in terms of this topic of service connection.
What we found was that a lot of these veterans have this fear that their service-connected disability benefits might be affected in some negative way if they get genetic testing done and they have a positive result. And beyond that, we were able to quantify it a bit. I know 30 is a small sample size, but 4 out of 30 declined germline testing despite knowing the potential benefits because of this fear. The second related challenge that we found was that of these four veterans who declined, two of them initially agreed to it, but after considering the risks, they ended up declining it, and we found this out in the interview. But inadvertently, when they had first agreed to get the testing done with their oncologist, their oncologist placed an order to get the germline testing, which is a blood test at the San Francisco VA, and later on, when they were going into the lab to get their routine blood work, the germline test was piggybacked so to speak and drawn at the same time and done without their knowledge, and so later on when we interviewed these patients again they weren't aware that they had germline testing done, even though they in their minds did not want it done.
And this is important because these patients got inadvertently tested and potentially, workflows might need to be adjusted for these types of higher-risk blood tests that have implications so that patients who do change their minds have a way of doing so.
So there was one veteran who said, I quote, “I could lose my VA benefits, and then I would lose my way of life. I would be standing in the soup kitchen, and I'm not willing to subject my life to that.” And so that's one person who declined because of this fear. And then here's another quote from someone who said that they would re-reconsider their decision. So this person said, “I would get genetic testing if it ever got to where it wouldn't affect the decision on insurance issues and, in my case, getting upgrades for disability for my service connection.”
In terms of some important take-home messages, I think first and foremost is that informed consent is important when it comes to germline testing, and oncologists who do perform pretest counseling should do their best to practice it even though there are a lot of barriers, like minimal time to really go over the risks and benefits and limitations thoroughly, in particular, to be aware of the risks to disability long-term care and life insurance, and for veterans in particular, this issue of service-connected disability benefits is causing certain veterans to decline germline testing.
I do want to provide a big update that some of our preliminary data was presented to the Veterans Benefits Administration among other evidence, and based on our findings and others, they made a great decision to introduce new language to the benefits and pension manual for veterans in which genetic testing results cannot rebut service-connected benefits that are active or veterans are applying for, and so we can actually reassure veterans that regardless of their genetic testing result, it would not affect their service-connected disciplinary benefits.
And then the last thing to note is that to pay really close attention to how we're ordering our tests and giving patients the opportunity and instructions that if they do want to change their minds for genetic testing, that there is a way for them to do so because some patients do after thinking about it.
That was Dr. Daniel Kwon talking about his presentation at the 2024 ASCO Genitourinary Cancers Symposium that focused on germline testing delivery for veterans with advanced prostate cancer. To access this and other episodes in our series, visit Project Oncology on ReachMD.com, where you can Be Part of the Knowledge. Thanks for listening!
- Host: Daniel Kwon, MD
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