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"We were trying to understand how veterans were making decisions about germline testing for their prostate cancer," says Daniel Kwon, MD.
In this video, Daniel Kwon, MD, discusses the background and notable findings from the JNCI Cancer Spectrum paper, “Germline testing for veterans with advanced prostate cancer: concerns about service-connected benefits.” Kwon is an assistant professor of medicine at the University of California, San Francisco.
This study is at the San Francisco VA Medical Center, and we were trying to understand how veterans were making decisions about germline testing for their prostate cancer. We had the anecdotal experience that some veterans were declining testing because of some concerns about service-connected benefits, and how that might play into whether they want to get germline testing or not. But this has never been formally studied, so we did a qualitative study where we looked at veterans with at least locally advanced prostate cancer who hadn't had germline testing before and before their upcoming oncologist visit, where they would discuss germline testing at that time, we recruited them. We looked at patients recruited between early 2022 and November 2023, and we consented them. We recorded the conversations between their oncologists and them, and then 7 days after the appointment, we did a semi-structured interview where we asked questions exploring their decision-making process and what considerations they had behind their decision whether it was yes or no. We eventually recruited 32 patients, and this was across 7 oncologists. In the recordings, it looked like about 38% of the oncologists brought up service-connected benefits as 1 factor that veterans do have these concerns about. 88% of veterans agreed to testing, and 12% did not. The math turns out to 28 out of 32 agreeing, and 4 declining. But we stratified these veterans based on their service connection status. It's interesting; everybody who was not service connected for their prostate cancer actually agreed to testing. And among the 14 who were service connected for their prostate cancer, 4 declined testing, so a third of those were service-connected declined testing. The great thing about qualitative data is we get some really representative and rich quotes about veterans' own perspectives behind their decisions. We have all that, and I can actually pull one up and read one out to you right now. A succinct one is this particular patient who said, "I could lose my VA benefits, and then I would lose my life, my way of life. I would be standing in the soup kitchen, and I'm not willing to subject my life to that." So this is a patient who was service connected for the prostate cancer and declined testing because they were concerned that positive test results might nullify their benefits, which their livelihood depends on.
Moving into the beyond the results and what we did with this, this has been an issue that physicians and veterans have known about for years, and there had already been prior to the study or concurrent to the study a process in which the VA Genomic Medicine Field Advisory Board was presenting anecdotal experiences to the VBA. We took some of these research findings, so now we have formal data, in October 2023 to the VBA, also got the Office of General Counsel involved, and lot of great discussion, great work. I wasn't a part of that, but some of my colleagues were. And in December 2023, the Veterans Benefits Administration changed some of the language in the compensation and pension manual that has to do with adjudication of service-connected benefits such that now there are some protections. And so specifically the language now is that genetic test results showing predisposition to a disease are not sufficient to rebut the evidentiary presumption of service connection or to sever service connection that has already been granted. So we hope that this new language mitigates some of the concerns that veterans have.
This transcript was AI generated and edited by human editors for clarity.