Exploring Genetic Counseling in Veterans with Advanced Prostate Cancer - Daniel Kwon
June 13, 2024
Daniel Kwon presents a study on genetic counseling for Veterans with advanced prostate cancer. This mixed-methods research combines in-depth qualitative interviews and quantitative surveys to evaluate how well Veterans understand and make decisions about genetic testing. Initial interviews with 31 patients reveal that most found the decision straightforward, but some had uncertainties about the implications of testing, particularly regarding genetic discrimination and data privacy. Financial concerns also led a few Veterans to decline testing due to fears of losing their disability benefits. However, a policy update has clarified that genetic test results will not affect these benefits. As the study progresses, Dr. Kwon plans to develop tailored decision support tools for Veterans and test their effectiveness in facilitating well-informed choices.
Biographies:
Daniel Kwon, MD, Oncologist, Assistant Professor, School of Medicine, UCSF Health, University of California San Francisco, San Francisco, CA
Alicia Morgans, MD, MPH, Genitourinary Medical Oncologist, Medical Director of Survivorship Program at Dana-Farber Cancer Institute, Boston, MA
Biographies:
Daniel Kwon, MD, Oncologist, Assistant Professor, School of Medicine, UCSF Health, University of California San Francisco, San Francisco, CA
Alicia Morgans, MD, MPH, Genitourinary Medical Oncologist, Medical Director of Survivorship Program at Dana-Farber Cancer Institute, Boston, MA
Read the Full Video Transcript
Alicia Morgans: Hi, I'm so excited to be here today talking to Daniel Kwon, who is joining me from UCSF, as well as seeing me at ASCO 2024, where you presented a wonderful poster thinking about genetic counseling in veterans with advanced prostate cancer. Thank you so much for being here.
Daniel Kwon: Yeah, thanks for having me, Alicia.
Alicia Morgans: Wonderful. One thing I want to point out is that this was a Department of Defense Physician Research Training award, which is a really important award that people can get as a career development award, so congratulations on that to start. The other thing I want to mention is that this is a mixed-methods study using both qualitative and quantitative methods to understand how well we're able to counsel patients with prostate cancer on genetic information, genetic testing, and what kind of knowledge and satisfaction they may have at the back end of all this. Really exciting work and a little bit different than some of the things that some of our viewers may have seen or heard about before. Tell me a little bit about this work, starting of course with the qualitative piece, which helped you with survey development.
Daniel Kwon: Yeah, that's right. That's a great explanation. In terms of the qualitative piece, what we did was prospectively identify patients where they're going to have an upcoming appointment with their oncologist at the VA, where they're going to talk about germline testing for the very first time and learn what it is and what are the potential benefits and harms and all that. We did an interview seven days afterward, a phone interview with the patient and potentially a caregiver if they wanted one; it lasted about 30 to 45 minutes, and we asked a host of questions following an interview guide that explored, "What did you consider when you're making this decision? What did you hear from oncologists? What are the pros? What are the cons? What support did you need?" And we even asked a few questions about potential disparities in support. That was about 45 minutes, and overall, about 31 patients so far who've done this.
Alicia Morgans: That's fantastic. And that part of qualitative work is so nuanced and interesting. I'm sure you gathered all of that, pulled out some themes that might be important to investigate further in the quantitative piece or the survey piece. How did you develop that survey and how did you administer it?
Daniel Kwon: Yeah, we were trying to think what are the elements of informed choice? And there's the subjective and objective part of it, the subjective meaning, how does a patient feel about what choice they made? Did they feel informed, satisfied, like you said? That we used the decisional conflict scale, which has been used a ton in this specific context.
In terms of the objective piece, we wanted to know what objectively do patients know what they should know? And we adapted a scale called the no gene scale for prostate cancer, and then also added five items based on the NCCN guidelines of what a patient should be counseled about in terms of germline testing and prostate cancer.
Alicia Morgans: Great. And as you were putting this whole project together, it is really important I think, as we're testing more and more patients, but what was your basic premise? What were your hypotheses as you were trying to do this work?
Daniel Kwon: Yeah, my hypothesis or ours, our whole team's, was that things are not going absolutely perfectly, and as the focus in our community has been to get germline testing done for everybody, we just wanted to take a step back and make sure that patients and caregivers are just making well-informed decisions. We presume there might be misconceptions and maybe patients are deciding the way that they actually really want to.
Alicia Morgans: Okay. And what did you find?
Daniel Kwon: Yeah, out of 31 patients so far, we found that most had an easy decision-making process, and that was reflected both in the decisional conflict scale, relatively low uncertainty levels, and also in our qualitative work where people felt, "This is an easy choice, why wouldn't I want to do it?" There were definitely some patients who had some degree of uncertainty. In the knowledge score, we also found that most people did fairly well, but some certain items patients didn't really know about, those being what is a variant of uncertain significance, what are the three different types of outcomes, positive VUS and negative, what's the test disclosure process and a lot of stuff which is also reflected in the qualitative work that has to do with genetic discrimination and data privacy loss.
Alicia Morgans: And that stuff is so important. And the other thing that's important, maybe not necessarily as critical in the VA, but in other healthcare settings is coverage for the testing in the first part. Let me just confirm, is that something that's covered universally within the VA?
Daniel Kwon: Yeah, that's exactly right. It's all covered through a contract with third-party companies where it's at no cost to the veterans. On that topic of finances though, one important finding that we did find was several patients, four to be exact, declined germline testing for financial concerns. Not because of the cost of testing, but these were all veterans that were connected for military exposures and got disability benefits because of that, with the idea that Agent Orange, for example, put them at risk for getting prostate cancer so they get monthly payments from the VA, and they were afraid that a positive germline test might obviate that connection, that service connection, and they could lose these benefits so they declined it. Since we did this study, in the middle of it, we presented some of these findings to the benefits administration and they put in new language that shows that genetic data will not affect service-connected benefits, so now we're able to tell patients that that's not really an issue anymore.
Alicia Morgans: What an important real application of this work that's in progress still under this DOD grant that's already come to fruition. That's really, really incredible. In that language, it sounds like everything was clarified for veterans who can get that, but there are other concerns, I know, again, not necessarily in a veteran's population, but outside related to getting life insurance and other policies, medical care and things, it sounds like some of the patients within this population also had some concerns around that.
Daniel Kwon: And I can remember this one particular patient, and that's great about qualitative. You get these really rich quotes, but he was concerned even after I tried to reassure him that his service-connected disability benefits wouldn't be affected, that his family would still be affected somehow in the future. He had said, "Well, let's say I test positive and let's say that my daughter wants to test you and she tests positive," turns out that she applies for some insurance disability, or life, or long-term care, and her premium ends up going up, or she gets denied because she has a positive germline test, and she didn't really know that this would be a factor in that decision-making process. People definitely are thinking about it in ways that we might not really appreciate the nuances of.
Alicia Morgans: Absolutely. Well, I think importantly for people who are listening, there are laws in place, the GINA Law, for example, that helps to protect medical coverage, but as far as I know, there's nothing yet in place to protect life insurance and coverage that is of that ilk. I don't know. This is actually a real concern, one that we are grappling with, not just within the VA and veteran system, but I think one we're still grappling with outside of that as well.
Daniel Kwon: Yeah, that's right. I don't think there's been enough research to fully appreciate or quantify how big of an issue is this. I couldn't find myself instances of people actually being denied either long-term care or disability or life insurance, and definitely agree that health insurance is protected under GINA, but we should definitely be thinking about this and looking into it.
Alicia Morgans: Absolutely. As you think about this really critical work and you try to put it in a summary for patients or for listeners to take home, what would that summary be?
Daniel Kwon: Yeah, I'd say most people, oncologists are doing a pretty good job of counseling their patients, but there definitely are some patients who are misinformed still. For a variety of reasons, they face barriers to making decisions that could be better supported. And what we're doing and other groups are doing, I'm sure are coming up with ways to better support their decision-making process. There's been a ton of work already in terms of pre-test counseling videos and how they're non-inferior to genetic counselors. There could even be things like question listing, or coaching for patients, or tailored decision aids for veterans populations.
Alicia Morgans: That's wonderful. And just a final question, I guess, one that I'll tack on. Where does your work go from here?
Daniel Kwon: Yeah, as part of this award, there are three phases and we're almost complete with the first phase, which was in the poster and what we talked about today. The second is to take our interview and conduct more interviews to develop a decision support intervention tailored for veterans based on the data. And then the third phase is going to be to test it out in an implementation study and see how feasible it is and compare knowledge and decisional conflict pre-post. That's going to start in a month or two.
Alicia Morgans: That is really fantastic. I commend you certainly on this funding and this award, but also on the work that you're doing in this really, really important population. It's not always addressed in such a thoughtful and really insightful way. Thank you for your work. Thank you for your time and for your expertise.
Daniel Kwon: Yeah, thank you for having me again.
Alicia Morgans: Hi, I'm so excited to be here today talking to Daniel Kwon, who is joining me from UCSF, as well as seeing me at ASCO 2024, where you presented a wonderful poster thinking about genetic counseling in veterans with advanced prostate cancer. Thank you so much for being here.
Daniel Kwon: Yeah, thanks for having me, Alicia.
Alicia Morgans: Wonderful. One thing I want to point out is that this was a Department of Defense Physician Research Training award, which is a really important award that people can get as a career development award, so congratulations on that to start. The other thing I want to mention is that this is a mixed-methods study using both qualitative and quantitative methods to understand how well we're able to counsel patients with prostate cancer on genetic information, genetic testing, and what kind of knowledge and satisfaction they may have at the back end of all this. Really exciting work and a little bit different than some of the things that some of our viewers may have seen or heard about before. Tell me a little bit about this work, starting of course with the qualitative piece, which helped you with survey development.
Daniel Kwon: Yeah, that's right. That's a great explanation. In terms of the qualitative piece, what we did was prospectively identify patients where they're going to have an upcoming appointment with their oncologist at the VA, where they're going to talk about germline testing for the very first time and learn what it is and what are the potential benefits and harms and all that. We did an interview seven days afterward, a phone interview with the patient and potentially a caregiver if they wanted one; it lasted about 30 to 45 minutes, and we asked a host of questions following an interview guide that explored, "What did you consider when you're making this decision? What did you hear from oncologists? What are the pros? What are the cons? What support did you need?" And we even asked a few questions about potential disparities in support. That was about 45 minutes, and overall, about 31 patients so far who've done this.
Alicia Morgans: That's fantastic. And that part of qualitative work is so nuanced and interesting. I'm sure you gathered all of that, pulled out some themes that might be important to investigate further in the quantitative piece or the survey piece. How did you develop that survey and how did you administer it?
Daniel Kwon: Yeah, we were trying to think what are the elements of informed choice? And there's the subjective and objective part of it, the subjective meaning, how does a patient feel about what choice they made? Did they feel informed, satisfied, like you said? That we used the decisional conflict scale, which has been used a ton in this specific context.
In terms of the objective piece, we wanted to know what objectively do patients know what they should know? And we adapted a scale called the no gene scale for prostate cancer, and then also added five items based on the NCCN guidelines of what a patient should be counseled about in terms of germline testing and prostate cancer.
Alicia Morgans: Great. And as you were putting this whole project together, it is really important I think, as we're testing more and more patients, but what was your basic premise? What were your hypotheses as you were trying to do this work?
Daniel Kwon: Yeah, my hypothesis or ours, our whole team's, was that things are not going absolutely perfectly, and as the focus in our community has been to get germline testing done for everybody, we just wanted to take a step back and make sure that patients and caregivers are just making well-informed decisions. We presume there might be misconceptions and maybe patients are deciding the way that they actually really want to.
Alicia Morgans: Okay. And what did you find?
Daniel Kwon: Yeah, out of 31 patients so far, we found that most had an easy decision-making process, and that was reflected both in the decisional conflict scale, relatively low uncertainty levels, and also in our qualitative work where people felt, "This is an easy choice, why wouldn't I want to do it?" There were definitely some patients who had some degree of uncertainty. In the knowledge score, we also found that most people did fairly well, but some certain items patients didn't really know about, those being what is a variant of uncertain significance, what are the three different types of outcomes, positive VUS and negative, what's the test disclosure process and a lot of stuff which is also reflected in the qualitative work that has to do with genetic discrimination and data privacy loss.
Alicia Morgans: And that stuff is so important. And the other thing that's important, maybe not necessarily as critical in the VA, but in other healthcare settings is coverage for the testing in the first part. Let me just confirm, is that something that's covered universally within the VA?
Daniel Kwon: Yeah, that's exactly right. It's all covered through a contract with third-party companies where it's at no cost to the veterans. On that topic of finances though, one important finding that we did find was several patients, four to be exact, declined germline testing for financial concerns. Not because of the cost of testing, but these were all veterans that were connected for military exposures and got disability benefits because of that, with the idea that Agent Orange, for example, put them at risk for getting prostate cancer so they get monthly payments from the VA, and they were afraid that a positive germline test might obviate that connection, that service connection, and they could lose these benefits so they declined it. Since we did this study, in the middle of it, we presented some of these findings to the benefits administration and they put in new language that shows that genetic data will not affect service-connected benefits, so now we're able to tell patients that that's not really an issue anymore.
Alicia Morgans: What an important real application of this work that's in progress still under this DOD grant that's already come to fruition. That's really, really incredible. In that language, it sounds like everything was clarified for veterans who can get that, but there are other concerns, I know, again, not necessarily in a veteran's population, but outside related to getting life insurance and other policies, medical care and things, it sounds like some of the patients within this population also had some concerns around that.
Daniel Kwon: And I can remember this one particular patient, and that's great about qualitative. You get these really rich quotes, but he was concerned even after I tried to reassure him that his service-connected disability benefits wouldn't be affected, that his family would still be affected somehow in the future. He had said, "Well, let's say I test positive and let's say that my daughter wants to test you and she tests positive," turns out that she applies for some insurance disability, or life, or long-term care, and her premium ends up going up, or she gets denied because she has a positive germline test, and she didn't really know that this would be a factor in that decision-making process. People definitely are thinking about it in ways that we might not really appreciate the nuances of.
Alicia Morgans: Absolutely. Well, I think importantly for people who are listening, there are laws in place, the GINA Law, for example, that helps to protect medical coverage, but as far as I know, there's nothing yet in place to protect life insurance and coverage that is of that ilk. I don't know. This is actually a real concern, one that we are grappling with, not just within the VA and veteran system, but I think one we're still grappling with outside of that as well.
Daniel Kwon: Yeah, that's right. I don't think there's been enough research to fully appreciate or quantify how big of an issue is this. I couldn't find myself instances of people actually being denied either long-term care or disability or life insurance, and definitely agree that health insurance is protected under GINA, but we should definitely be thinking about this and looking into it.
Alicia Morgans: Absolutely. As you think about this really critical work and you try to put it in a summary for patients or for listeners to take home, what would that summary be?
Daniel Kwon: Yeah, I'd say most people, oncologists are doing a pretty good job of counseling their patients, but there definitely are some patients who are misinformed still. For a variety of reasons, they face barriers to making decisions that could be better supported. And what we're doing and other groups are doing, I'm sure are coming up with ways to better support their decision-making process. There's been a ton of work already in terms of pre-test counseling videos and how they're non-inferior to genetic counselors. There could even be things like question listing, or coaching for patients, or tailored decision aids for veterans populations.
Alicia Morgans: That's wonderful. And just a final question, I guess, one that I'll tack on. Where does your work go from here?
Daniel Kwon: Yeah, as part of this award, there are three phases and we're almost complete with the first phase, which was in the poster and what we talked about today. The second is to take our interview and conduct more interviews to develop a decision support intervention tailored for veterans based on the data. And then the third phase is going to be to test it out in an implementation study and see how feasible it is and compare knowledge and decisional conflict pre-post. That's going to start in a month or two.
Alicia Morgans: That is really fantastic. I commend you certainly on this funding and this award, but also on the work that you're doing in this really, really important population. It's not always addressed in such a thoughtful and really insightful way. Thank you for your work. Thank you for your time and for your expertise.
Daniel Kwon: Yeah, thank you for having me again.