JCO Oncology Practice Podcast

American Society of Clinical Oncology (ASCO)

JCO OP: Put Into Practice highlights new research published in JCO OP related to cancer care delivery, quality, disparities, access. Host Dr. Fumiko Chino, MD FASCO interviews thought leaders in oncology to give listeners practical knowledge that can be used in day-to-day practice along with solution-oriented discussions and care innovations.

  1. OCT 21

    A Podcast About Podcasts: Podcasts as Educational Tools for Providers (and Patients)

    Dr. Chino welcomes Dr. Vivek Patel and Dr. Eleonora Teplinsky to discuss a recent article in JCO OP that reported a podcast-based curriculum could improve knowledge and comfort with common education topics for oncology fellows. TRANSCRIPT Dr. Fumiko Chino: Hello, and welcome to Put Into Practice, the podcast for JCO Oncology Practice. I am Dr. Fumiko Chino, an assistant professor in Radiation Oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity. There are over 450 million podcasts available today, and online audio consumption continues to rise year after year. In the US alone, over 200 million people have listened to online audio in the last month, and health and fitness remains one of the most popular categories. Podcast audiences range from the lay public to patients with cancer to providers, with the dual goal to both entertain and inform. A recent randomized control trial published in JCO OP reported that a podcast-based curriculum could improve knowledge and comfort with common education topics for oncology fellows. I am happy to welcome two guests today to discuss the role of podcasts to improve information sharing. They are both podcast hosts, making this ASCO's first podcast about podcasts. Dr. Vivek Patel, MD, is an assistant professor and APD at Vanderbilt University with a treatment focus on blood cancers. He co-founded the Fellow on Call podcast in 2021 to fill a perceived gap in high quality, free, online medical education content in Hem-Onc. The podcast provides the fundamentals, core concepts, and important management approaches in an easily accessible, asynchronous learning platform. He is the first author of the JCO OP manuscript, "Education Impact of a Podcast Curriculum for Hematology-Oncology Fellows," which was simultaneously published with his oral presentation at the 2025 ASCO Annual Meeting. Dr. Eleonora Teplinsky, MD, FASCO, is the Head of Breast and Gynecological Medical Oncology at Valley Health System and a clinical assistant professor at Mount Sinai. She is the host of the Interlude podcast, founded in 2018 with the goal to promote support, inspiration, knowledge, and hope to listeners via patient and provider interviews. She is also active on social media, providing real time expert commentary on active new stories from emerging research to celebrity diagnosis and treatment. Our full disclosures are available in the transcript of this episode, and we have already agreed to go by our first names for the episode today. Vivek and Eleonora, it's so wonderful to speak to you. Dr. Eleonora Teplinsky: Thanks for having us. Dr. Vivek Patel: Glad to be here. Dr. Fumiko Chino: Our specific topic today is podcasts as an avenue for knowledge transfer for both patients and providers. This conversation is loosely based on a manuscript that Vivek and team published on the findings of a randomized control trial of an education intervention. Vivek, do you mind sharing with us how you got interested in podcasting and then briefly discussing what your study team did and the findings? Dr. Vivek Patel: Yeah, yeah. So getting interested in podcasting really started when I finished residency and was starting Hem-Onc fellowship. There is a popular podcast, The Curbsiders, and I always listened to it when I was a resident to learn core concepts in internal medicine. When I got to Hem-Onc fellowship, there was a gap. And after my first year of fellowship, I met with a couple of my co-fellows and we just decided, "Hey, let's just make a podcast. Maybe it will just be for our program." It ended up being this bigger thing that we created with The Fellow on Call. So that that is really what the start of the journey was, was just, "Hey, there is nothing here. Let us just do something for fun," and then it just kind of took off from there. For the study that we did though, what we really focused on was, there's been so many studies out there now that have looked at using podcasts and that people like them, people enjoy them, that they are convenient. But there are very few studies looking at, does podcast actually improve knowledge? And that is a very difficult thing to study. You know, it is really hard to do education research in general, particularly in the multi-center setting. What we did was we designed a multi-center cluster randomized trial where we included 27 hematology-oncology fellowship programs and we randomized the programs to a supplementary curriculum in addition to the standard didactics with our podcast and another podcast that we work closely with, The Two Onc Docs, versus just standard curriculum alone, with a goal of understanding does fellow comfort level in a select set of topics improve and does their knowledge assessment in those topics improve as well? So we actually created and validated a knowledge test as well. We decided not to use the in-training exams because, you know, we figured, well look, these in-training exams cover a broad range of topics. We are really focused on our very key principles in a few disease areas. And the bottom line results were, it was a positive study. We found that the knowledge test scores improved by 15.5% favoring the podcast arms and fellows at the end of the year felt more comfortable in the disease topics that we had given them. So it was interesting to see that the podcast actually improved both comfort and knowledge in the set of topics that we had chosen. Dr. Fumiko Chino: I love this type of pragmatic, cluster randomized trial which asks a really discreet but also important question, which is how can we be improving education? And also, I think making it more accessible, right? And that is one thing I think your podcast does amazingly, is that you really go into depth on these topics which are quite complex, and I think is useful not just for trainees, but also even practicing physicians that kind of want to bone up on these topics. Now, The Fellow on Call podcast is a provider-facing podcast. It really focuses on education for trainees and the practicing provider. Interlude is a patient-facing podcast with a goal of sharing stories and knowledge about cancer survivors and caregivers. Eleonora, I would love your perspective on the role of podcasts in the cancer community and how your podcast differs in focus and framing from an educational podcast for trainees. And also, honestly, just given your role as a program director of a new fellowship program, I would love your thoughts about the findings from the study itself. Dr. Eleonora Teplinsky: I love podcasts, first of all. I think they are amazing for learning, especially asynchronous learning, and we know everyone learns in different ways, right? So having more opportunities is so important. But I think it is really important to do studies like this and to highlight that yes, in fact, podcasts do help. And I do think it should be part of at least the offerings of how do we provide information and materials to our trainees. And I agree, it is not just trainees, right? Your maybe board preparation, something you can plug in in the car while you are driving. I think so many uses. From my side, I think that podcasts also have a really good role on the patient-facing side. And so I will very briefly, I started actually first just educating on social media. This was right around the time where misinformation was starting to become rampant, and patients were coming in with questions. And you know, I felt like as I am sure we all do that 15 minutes is not enough time to spend with the patient and they were leaving sometimes with more questions than they came in with. And so I started saying, "You know what, let me just put this stuff out there online, no medical advice, but just educating." And then I realized, wait a second, I don't really understand survivorship that well. I do not understand what our patients are truly living with because we were not taught that as trainees. Things have changed a lot, but back then it really was not a focus. And so I realized I just wanted to talk to patients, not my patients, people who I did not have a doctor-patient relationship with, just to hear their stories. And, oh my gosh, you know, the first one I did, I remember I said, "Wow." There was so much that I did not know about that experience. And so it's really helped me as well. But I think putting it out there for patients who do not always feel comfortable asking questions online, going to a support group and speaking up, this allows them to, again, in an asynchronous way, to hear people's experiences and stories. And then over time I started bringing on experts. You know, Fumiko, you were on, and we talked about financial toxicity and radiation. These are questions that patients have, and it allows them to get information from a trusted source. And I will say, I think it really helps people when they have time, when they are not in a high pressure environment. On their own time, they can write things down. They really can process the information, and I think in a less stressful way, empowering themselves to then go to their doctor's appointments and say, "Hey, can we talk about these things? Right? Can we talk about ways to protect my heart during radiation?" All of these questions that maybe they did not even know they should be asking. Dr. Fumiko Chino: I love that when you said you thought you were going to create this podcast as an education tool for patients, but that you learned so much about it. And I have to say, I have learned a lot from patient's stories and that really large engaged survivorship population. And having some of these conversations has been really invaluable to my ongoing education role. Hopefully all lifelong learners here, both on this call, but also our listeners. The rise of podcasts aligns with how communication and education has changed in the modern era from in-person didacti

    23 min
  2. OCT 20

    Advance Care Planning: How Can We Improve Access and Uptake?

    Dr. Chino welcomes Dr. Yael Schenker to discuss a new clinical trial testing the best way of engaging patients with Advance Care Planning (ACP), the process of understanding personal values, life goals, and medical care preferences so that patient wishes are honored at end-of-life. TRANSCRIPT Dr. Fumiko Chino: Hello, and welcome to Put Into Practice, the podcast for the JCO Oncology Practice. I am Dr. Fumiko Chino, an Associate Professor in Radiation Oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity. Care delivery goals for the critically ill, including those with cancer, have shifted towards a patient-centered framework. Advance care planning (ACP) is the process of understanding and sharing personal values, life goals, and medical care preferences so that patient wishes are honored at the end of life. Despite growing evidence of the benefits of these discussions, documentation of advance directives remains low, with some studies showing less than half of people with advanced cancer have a living will or health care power of attorney. I am happy to welcome a guest today to discuss a new clinical trial evaluating the best way of engaging patients with advance care planning. Dr. Yael Schenker, MD, MAS, FAAHPM, is a Professor of Medicine with tenure and the Director of the Palliative Research Center at the University of Pittsburgh and the UPMC Hillman Cancer Center. She is also a practicing Palliative Medicine Physician at UPMC. Her research focuses on improving quality of life in serious illness with a particular focus on palliative care delivery models. She is the first author of the JCO OP manuscript, "Facilitated Versus Patient-Directed Advance Care Planning Among Patients With Advanced Cancer: A Randomized Clinical Trial," which was published earlier this year. Our full disclosures are available in the transcript of this episode, and we have already agreed to go by our first names for the podcast. Yael, it's wonderful to speak to you today. Dr. Yael Schenker: Thank you so much for having me, Fumiko. I am such an admirer of you and your work. It's really an honor to be here. Dr. Fumiko Chino: I am excited for our discussion. Do you mind starting us off with just a little history about how you got interested in palliative care and what the field looked like when you were in training and your early career? For example, the term "death panels" from 2009 still really haunts many of us interested in advance care planning. Dr. Yael Schenker: Yes, that is actually when I started in the field, and I remember those days well. I had a windy path to medicine, and by the time I got to medical school, I was really drawn to taking care of the sickest, most complicated patients. I loved all of the life stuff, the stuff that was not on the diagnosis list but had such an impact on how people navigated a serious illness and what was important to them. I remember going to a funeral in the Western Addition in San Francisco for one of my first primary care patients when I was a resident and just being blown away by this incredible community, this church filled with people, this vibrant life that I had only caught tiny glimpses of in our 15 minute clinic appointments. I caught the research bug during residency, and I started really thinking about how we were communicating with patients and how we figured out what was important to them. At that time, I was headed towards a career as a primary care doc, but I stayed at UCSF to do a general medicine research fellowship, and I wrote my first grant about serious illness communication to the National Palliative Care Research Center. I got that grant, and I figured if I was going to be a palliative care researcher, I should really be a palliative care physician also. Amazingly, back then, and this was 2010, you could grandfather in and take the palliative care boards without doing a palliative care fellowship. So I did that. I started practicing palliative care clinically, and I really dove into this question of how do we make sure that people have a voice in the care they are receiving near the end of life? And how do we make sure that care aligns with what matters most to them? Those questions have more than filled 15 years as a faculty member at the University of Pittsburgh, and it has been such a joy to watch the field take off and, in the last five years, to lead a research center focused on improving the quality of serious illness care. Dr. Fumiko Chino: That's a great history. I wanted to ask just a quick follow up question on that. How were we doing this before? Because I know you have spent the last 15 years of your career improving how we do advance care planning conversations and trying to figure out the evidence-based solutions for making change. But how were we doing it before? Dr. Yael Schenker: Yeah, so advance care planning has an interesting history, dating back to the 1990s and the Patient Self-Determination Act and the sort of requirement that we let people know that they have a right to make decisions about their care. And I think for a long time, we sort of thought of advance care planning as a form, and we would hand people a form and sort of check a box and say that we were done. I think we have done so much since that initial history to really understand what it means to involve people and to give people a voice in their care and to view advance care planning as a process, not a check box. Dr. Fumiko Chino: That is so helpful, again, to practice truly patient-centered care. Now, this trial, the "Patient-Centered and Efficacious Advance Care Planning in Cancer," or PEACe, compares the effects of facilitated advance care planning with a trained nurse versus a patient-directed program delivered via a website and written materials. Do you mind giving us an overview of this randomized study and what you found? Dr. Yael Schenker: Absolutely. And just to note that advance care planning continues to be a source of some confusion, both for clinicians and for the public. So, like we said, advance care planning is defined as the process that supports people to understand and share their personal values, life goals, and preferences for future medical care. And it is now widely recognized as a strategy that improves the patient-centeredness of care. And failure to deliver patient-centered care near the end of life, meaning care that people want, remains a key shortcoming of our cancer care delivery system. So advance care planning is guideline-recommended for patients with advanced cancer, but there are a lot of different ways to do advance care planning. And these approaches vary quite a bit in terms of cost, complexity, who is involved. So the question that really motivated this study was, which way is best? And like you said, we compared two different ways to do advance care planning: patient-directed advance care planning, in which we gave patients written and web-based tools to complete the steps of advance care planning on their own time, at their own pace, and a more resource intensive approach, facilitated advance care planning, in which patients had structured advance care planning conversations with a trained facilitator. This was a single blind, patient level, randomized comparative effectiveness trial. We enrolled 400 patients with advanced cancer. Our primary outcome was engagement in advance care planning, which we measured using a validated scale called the ACP Engagement Survey. And I will note that we chose this as our primary outcome because it measures a lot of different advance care planning behaviors, reflecting this updated definition of advance care planning as a complex process rather than just completing a form. And so this scale includes subscales related to self-efficacy or confidence and readiness to do things like choose a decision-maker, talk with your decision-maker about what is important, sign official papers, and talk with your doctor. And so what did we find? At 12 weeks, patients in the facilitated advance care planning group had higher engagement, and this was a difference that was both statistically and clinically significant in terms of behavior change. They were also more likely to have completed a living will or advance directive at 12 weeks, and this was also a significant difference. 75% of participants in the facilitated group had completed a living will or advance directive at 12 weeks versus 61% in the patient-directed group. And another way to say that is that at 12 weeks, the odds of having a living will or advance directive for patients in the facilitated group were over two times the odds of having a living will or advance directive for patients in the patient-directed group. There were no significant differences between groups in the odds of having an advance care planning conversation with family or friends or with physicians. And, notably, all advance care planning behaviors did increase from baseline in both groups. Dr. Fumiko Chino: I really love the trial, which is a randomized trial, obviously our highest level of evidence, but also it is a pretty-straightforward trial, which is, if you do not need to use the more resource intensive modality, which is the trained nurse facilitators, if just giving people some information is going to work, then show that. But sadly, no, it really- having a trained facilitator really does seem to increase uptake. So one point that was made in the intro of the study, and I think you just made, which is the field of ACP has moved beyond the sole goal of legalistic forms to encompass several different patient-facing approaches. So again, like what you said, it is beyond just checking a box. The goal of identifying the optimal strategies for facilitating patients to have these important discussions with their families and providers is so important. As you said, there was no difference in the tr

    22 min
  3. OCT 11

    2025 ASCO Quality: Creating a Statewide Cancer Drug Repository Network to Improve Access and Affordability

    Dr. Chino welcomes Dr. Emily Mackler, PharmD, BCOP, the Co-founder and Chief Medical Officer of the YesRx program and an Adjunct Clinical Associate Professor at the University of Michigan. The YesRx program has saved patients in Michigan more than 17 million dollars in the past 2 years. Dr. Mackler's article, "Transforming Cancer Drug Access: Insights Into Utilization and Clinician Satisfaction in a Statewide Cancer Drug Repository Network," presented at the ASCO Quality Care Symposium. TRANSCRIPT Dr. Fumiko Chino: Hello and welcome to Put into Practice, the podcast for the JCO Oncology Practice. I'm Dr. Fumiko Chino, an Associate Professor in Radiation Oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity. Our listeners know that financial toxicity is a growing issue which limits access to high quality cancer care. Cancer drug repository programs offer a unique solution to the affordability crisis, connecting patients to free medications while reducing medical waste. Cancer drug repositories collect unused, unexpired, manufacturer sealed cancer medications and redistribute them to those in need. I'm happy to welcome a guest today to discuss the YesRx program that has saved patients in Michigan over 17 million dollars in the past 2 years. Dr. Emily Mackler, PharmD, BCOP, is the Co-founder and Chief Medical Officer of the YesRx and an Adjunct Clinical Associate Professor at the University of Michigan. Go Blue! She has led the development and implementation of quality improvement programs across the state of Michigan to improve the care of patients with cancer. She is the first author of the JCOP manuscript "Transforming Cancer Drug Access: Insights on Utilization and Clinician Satisfaction in a Statewide Cancer Drug Repository Network," which was simultaneously published with her oral presentation at the 2025 ASCO Quality Care Symposium. Our full disclosures are available in the transcript of this episode, and we have already agreed to go by our first names for the podcast today. Emily, it's wonderful to speak to you. Dr. Emily Mackler: Thank you. It's an honor to be here, and I appreciate the "Go Blue." Dr. Fumiko Chino: I spent some time in Ann Arbor and have some great love of Michigan. So, and the Mitten State in general. Dr. Emily Mackler: Wonderful. Dr. Fumiko Chino: Absolutely. I'm a Midwesterner at heart, so there's deep love. I love the YesRx program. I think it just makes sense. Do you mind outlining for me just how the program started, what you found in the last two years helping lead it? Dr. Emily Mackler: I actually love our initiation story to this program in that our legislation in Michigan took effect actually in 2006, and our program, the first repository went live in 2021 in a small community practice in Michigan where the community oncologist came into the pharmacist's office, put a bottle of medication on her desk and said, "This is a Honda Civic. Can you do something with it?" That was really our impetus or kind of the starting point. We started the network in 2023 because the first three sites in the state that developed their own internal cancer drug repository programs were done as most things are because a need was identified and there was passion about providing this care and resource to patients. And it became more and more evident that the sustainability for those sites was becoming challenged as there was growth. And I think the most important component that brought us together as a network was that not every practice had the resources to house their own repository, therefore further limiting access to those who probably already had it limited. Dr. Fumiko Chino: I got you. Do you mind just running through some numbers? Because I know, for example, you've had really incredible growth over the last 2 years, starting at 9 participating sites, going to over 100 now, and I know you've helped over 1000 people in Michigan. Dr. Emily Mackler: We did start with 9 sites, and those were part of three practices across the state. We are now at over 105 sites across Michigan, including tribal health clinics, small community practices. We cover 90% of the counties in the state as far as those counties having leveraged resources to donate medications or having have received medications from the repository. We have received over 28 million dollars worth of eligible cancer medication within the repository and have been able to get out over 18 million dollars to Michigan residents. So over 1500 Michigan residents have received medication at no cost from the cancer drug repository. Dr. Fumiko Chino: And I know that as part of this manuscript, there were some surveys for the providers who had participated in the network, and it sounds like they were really just overwhelmingly positive. They thought it was easy to participate, they felt like it helped their patients. So just an incredible service. Dr. Emily Mackler: And I think from that component with the survey, the approach we've taken is a little bit different than perhaps other large drug repository programs in that our goal was really to serve the clinician in the practice, be the physician, the pharmacist helping with access, the nurse. There are many systems in place that cause some fragmentation of care in oncology practice, and they seem to continue. And we really wanted this to be a very easy, quick resource for clinics that filled gaps for them. And so our response rate to the clinic where, if we have a request come in for a medication, we get that back in the hands of the clinic within 1 to 2 days, and they can provide it to their patient at no cost. We really try to make it as easy as possible for them, no paperwork required for them to fill out related to patient need. We just need the patient to say that they do have need or the patient's advocate, be the financial counselor or navigator in the clinic or someone else. So satisfaction for us was really key to measure and make sure we were following through on what our ultimate goal was, which was really to, again, keep that agency in the clinic, have the information at the ready for the clinicians to not delay treatment any further. Dr. Fumiko Chino: You mentioned something that led into my next question, which is that we know that sort of, in general, the drug repository programs require medications to be unexpired, in manufacturer sealed packaging, they must be inspected by a pharmacist, and they must be received by patients in financial need. And so my next question was just going to be about, you know, the quality control aspects of it, what type of medications aren't accepted, and then the specific qualifications that patients must meet to kind of demonstrate need. It sounds like at least from that respect, you're really relying on the treating physician and their team to say, "Hey, this person has need," and you don't require additional documentation, which obviously makes it much easier for the clinician. But for some of those other aspects, you know, in terms of what are you accepting, what can you not accept, and what do you do with the things that people send in anyway? Dr. Emily Mackler: We really follow the legislation within Michigan, which we are so grateful because it was so forward thinking at the time it was approved. We can accept any medications again that are sealed in manufacturer packaging, except for controlled products, so controlled substances are not acceptable. We cannot accept manufacturer enrollment program medications, so things like lenalidomide that require REMS programming are not allowed to be accepted in the repository at this time. And we do need to ensure that the medications are stored at room temperature for us to accept them. Other than that, it's quite open, and the legislation allows us to collect any medications used for the treatment of cancer or to support the cancer patient. So, in addition to cancer medications, we've also collected and been able to distribute to patients antiemetics, DOACs for instance, or other medications may be used to help support the patient during their cancer treatment. So really somewhat broad. As far as eligibility, our mission is to prioritize patients who are the most vulnerable or in need of therapy. We have not had to develop a tiered system as of yet because we've really been able to keep the inventory to a place where at any point that it's been requested, we've been able to fill the need. There are some scenarios where maybe those medications are difficult to come by, but really nothing where we've had to tier availability. As far as what we do with medications that are not eligible, if they've come to us and they've been inspected and don't meet our criteria for safety, we have a partnership with a research lab at the University of Michigan called the Sexton Lab, and they study currently approved, FDA approved medications for other indications. That lab looks at those medications to see what else they might be useful for, uses some AI technology, and they actually accept the majority of the medications that we're not able to use for that research purpose. Dr. Fumiko Chino: That's fantastic. So you're saying that if someone turns in their ondansetron but it's not in a blister pack, or they turn in their oxycodone in the pharmacy bottle, you're still able to upcycle that medication? Dr. Emily Mackler: Yes, as much as possible. We really try to eliminate any unnecessary medication waste. Dr. Fumiko Chino: Wonderful. Dr. Emily Mackler: We really try to eliminate any unnecessary medication waste.   Dr. Fumiko Chino: I was actually really impressed about the rollout of the YesRx program. I know that you had mentioned in the manuscript that it was specifically designed to focus first on supporting the clinics in the communities with the least amount of resources serving the most vulnerable populat

    21 min
  4. SEP 15

    "Mainstreaming" Germline Genetic Testing: How Nongenetics Providers Can Help Fill the Workforce Gap

    Germline genetic testing can play an essential role in identifying cancer risk, guiding treatment decisions, and informing screening and/or preventive strategies for both patients and patient family members. Access to timely and convenient genetic testing can be challenging based on increased indications for testing, larger gene panels, and high numbers of positive tests which are overloading a limited genetics workforce. This is leading to long wait times and widening disparities in access to genetic testing. Dr. Chino welcomes Dr. Trevor Hoffman to discuss an intervention he helped pilot using non-genetics providers to increase access while maintaining quality. TRANSCRIPT Dr. Fumiko Chino: Hello and welcome to Put Into Practice, the podcast from the JCO Oncology Practice. I'm Dr. Fumiko Chino, an assistant professor in radiation oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity. Germline genetic testing can play an essential role to identify cancer risk, guide treatment directions, and inform screening or preventative strategies for both patients and patient family members. Access to timely and convenient genetic testing can be challenging based on increased indications for testing, larger gene panels, and high numbers of positive tests that are overloading a limited genetics workforce. This is leading to long wait times and widening disparities in access to genetic testing. I'm happy to welcome a guest today to discuss an intervention he helped pilot using non-genetics providers to increase access while maintaining quality. Dr. Trevor Hoffman, MD, PhD, is an associate professor in clinical medicine at the Kaiser Permanente Bernard J. Tyson School of Medicine and the Regional Chief of Medical Genetics in the Southern California Kaiser Permanente Medical Group. He leads a department of 10 medical geneticists and approximately 40 genetic counselors, serving 5 million Kaiser members in Southern California. He is the first author of a JCO OP manuscript, "Expanding Germline Hereditary Cancer Gene Panel Testing by Non-Genetics Providers," which was published earlier this year. Our full disclosures are available in the transcript of this episode, and we've already agreed to go by our first names for the podcast today. Trevor, it's wonderful to speak to you today. Dr. Trevor Hoffman: Thank you so much for inviting me on the pod. I'm really psyched about it. Dr. Fumiko Chino: Our specific topic today is something that I know you know a lot about, germline genetic testing. Despite broadened eligibility, only a small percentage of people diagnosed with cancer will undergo germline genetic testing, and I'd love your thoughts on the changes in genetic testing over your 20+ year career, and particularly, obviously for our respects, within the cancer patient population. The who, what, when, where, how, and wherefores of genetic testing and how this has evolved as our scientific knowledge has really improved over time. Dr. Trevor Hoffman: Yeah, it's been a wild ride considering everything I've seen happen in my own field. Back when I started in practice, we were doing like standard karyotypes and maybe sequencing a gene here or there by Sanger sequencing, and testing was cost prohibitive, thousands of dollars. You know, there were gene patents. You know, we were this little hidden department, like in the basement, that hardly anybody knew about, and we liked our little place in anonymity, and it was all good. Come the genomics revolution and next-generation sequencing, and, you know, all of a sudden you can, in one machine, sequence, you know, billions of letters of genetic code for hundreds of dollars. It was like a paradigm shift caused by technology. So that and the removal of gene patents, we've come, you know, in the ensuing years to hereditary cancer gene tests that's, you name it, depending on whether it's done 20, 30, 40, 70 genes for under $500 in most cases and can be done in a matter of a couple of weeks. That's a bit of a massive change. In oncology, we've seen that happen in terms of tumor NGS, right? Like, things are changing for all of us rapidly. And so multiply that across every specialty. In my field where we used to own every genetic test, like genetics would kind of order every test and determine who needed testing, that's not going to happen. Like, it's not going to work anymore. So we have to come up with better ways to sort of put it into the hands of people, make it easy, make it appropriate to maintain access. We can't do the white-glove service anymore where we see every single patient and touch every patient. That's the shortest version of my career in a nutshell. And you're living this too, right? Like many people listening to this podcast train oncology, like tumor NGS didn't exist, you know, and now all of a sudden it's like standard of care in our system. And you know, people have had to just learn by the seat of their pants. And so we're all in this crazy roller coaster together. Dr. Fumiko Chino: Yeah, it seems like the proliferation of testing and the vitality of the information gained from it, how important it is, it is unsustainable for the genetics workforce to stay in their closed basement system. As a radiation oncologist who lives in a basement, we have enough people in the basement. We're hoping to integrate them a little better into the larger community. Now, you were the first author of this recent report on the 3-year experience of mainstreaming hereditary cancer gene panel testing at Kaiser Permanente Southern California. Do you mind briefly discussing the background of what led to this project - again, sounds like limited workforce - and what your study team actually did, and then the actual findings? Dr. Trevor Hoffman: Yeah, I'd love to. So this kind of arose from, and mainstreaming is essentially in the genetics field, we call that like handing a test to a non-genetics provider to order. So that's kind of the term that has been applied to that. And essentially, we have to do that. And so this kind of arose through some personal relationships I had with cancer providers in our system, a couple of whom were down the hall from me. One of them was a GYN ONC provider, and the other was a breast surgeon. And so, I had both our breast surgeon and our GYN ONC doc approached me and say, "You know what? I'm seeing all these women and they have ovarian cancer, or they have breast cancer, and I know I'm doing surgery on these people. They need a hereditary cancer gene test. It's a no-brainer. And so I have to see them. I schedule my surgery. If it's breast cancer, I'm like, I'm not sure what the surgery is, and this woman may be 45, and it's like, well, I don't know what surgery to do, but we schedule a surgery in three weeks. We refer them to genetics. Genetics sees them, schedules an appointment, orders the test, the patient goes to the lab and gets the test." That all sounds great, right? But the patient may be overwhelmed. They may not know the importance of getting that appointment scheduled very quickly. In our system, we're under a regulatory guideline to see people within two weeks, but in lots of genetics practices out there, there are wait lists that are a year, two years, three years. The patient may not understand why the surgeon wants this result, right? And it's, you know, I listened to your last podcast about parking charges, right, being a barrier. So like, we're putting up all these barriers for patients with cancer, and then if the patient didn't get the test or do it, the surgeon's like, "I've got to cancel my surgery," and they're calling me. And so we kind of were like, "Hey, wait a minute, like, can I just order this myself in the surgery clinic or in the GYN ONC clinic? Because it's making their life easier." So it kind of arose out of one of these rare things in medicine, right? Like a win, win, win. For them it's a win. They need the info quick. They want to schedule their surgery, they want to know what they're doing. For the patient it's a win because then they don't have to make an appointment, pay the parking fee, all the barriers of getting that appointment done. And from our point of view, it's a win because like, I know before that patient walks in the door, I'm ordering that test for a 45-year-old woman with breast cancer, like it's a no-brainer. The other thing I would say is that from the point of view of the patient, seeing me for like a separate 60-minute appointment to discuss testing in that venue, they've got so many other things on their mind. The ability to hold onto all that information is just limited. So, you know, we see people and we still do in some contexts in these multidisciplinary clinics, but the retention of what I'm telling patients, honestly is low. They're worried they're going to die. They're worried about, "What surgery am I going to have?" "What am I going to do about my job?" And so we started doing it on a small scale, but the main thing was making it logistically easy for them. That's the key, is making it as simple and efficient as possible. And so for us, that was putting an order in our EMR that was like a couple of clicks. And then taking the worry off their minds that like, they're not going to be stuck like backpedaling and trying to counsel a patient. Like we're going to be there for you to counsel that patient when they're positive, right away. A lot of it's about reassuring and just making it easy and trust. And so like without that, like this never would have happened, you know, everybody would have stayed in their silo. So out of that, we kind of grew it and we're up now over 20,000 tests that have been ordered by oncology providers, physicians, case manager nurses for our breast cancer coordinators, PAs in some cases, nurse practitioners, all these people are doing this with clear guidelines, right? Like very clear indic

    31 min
  5. AUG 18

    Promoting Resilience in Adolescents and Young Adults (AYAs) with Cancer via Developmentally Targeted, Evidence-Based Interventions

    An estimated 85k adolescents and young adults (AYAs) between the ages of 15 to 39 will be diagnosed with cancer in the United States this year. AYAs with advanced cancer face care gaps for psychosocial support and communication. A recent paper published in JCO OP titled "Promoting Resilience in Stress Management: A Randomized Controlled Trial of a Novel Psychosocial Intervention for Adolescents and Young Adults With Advanced Cancer" detailed the findings of a clinical trial testing a skills-based coaching program with the goal of decreasing psychological distress and improving quality of life. TRANSCRIPT Dr. Fumiko Chino: Hello, and welcome to Put into Practice, the podcast from the JCO Oncology Practice. I'm Dr. Fumiko Chino, an Assistant Professor in Radiation Oncology at MD Anderson Cancer Center, with a research focus on access, affordability, and equity. An estimated 85,000 adolescents and young adults (AYAs) between the age of 15 and 39 will be diagnosed with cancer in the United States this year. Although this accounts for less than 5% of all cancers, AYA cancers have been rising over the past decade, and AYA survivors have unique survivorship needs, including physical, emotional, social, and spiritual communication. A recent paper published in JCO OP titled "Promoting Resilience and Stress Management: A Randomized Control Trial of a Novel Psychosocial Intervention for Adolescents and Young Adults With Advanced Cancer" detailed the findings of a clinical trial testing a skills-based coaching program with the goal of decreasing psychological distress and improving quality of life. I'm excited to welcome two guests to the podcast today to discuss optimal care for the AYA population. Dr. Abby Rosenberg, MD, MS, MA, is the Chief of Pediatric Palliative Care at the Dana-Farber Cancer Institute, Director of Pediatric Palliative Care, Boston Children's Hospital, and an Associate Professor of Pediatrics, Harvard Medical School. She is also the current designated pediatric oncologist at the ASCO Board of Directors. Both Dr. Rosenberg's clinical approach and her research focus on helping patients facing critical illness live their best lives and for as long as possible. Specifically, she and her team develop programs that help patients and families build resilience and optimize quality of life. She is the first author of the published trial we will be discussing today. Dr. Lauren Ghazal, PhD, FNP-BC, is an Assistant Professor and researcher at the University of Rochester School of Nursing. As an AYA cancer survivor herself and a family nurse practitioner with a background in economics, she brings a unique perspective to cancer care delivery research. Dr. Ghazal completed a postdoctoral research fellowship at the University of Michigan on an NCI T32 in cancer care delivery after earning her PhD at NYU, where her dissertation focused on work-related challenges and financial toxicity in AYAs. Our full disclosures are available in the transcript of this episode, and we've already agreed to go by our first names for the podcast today. Abby and Lauren, it's wonderful to speak to you. Dr. Abby Rosenberg: Thanks for having us. We're so happy to be here. Dr. Lauren Ghazal: Yes, thank you for having us. Dr. Fumiko Chino: Our specific topic today is: improving outcomes for the AYA population. Abby, do you mind starting us off by sharing some background on this trial and giving us a brief overview of the study and your findings? Dr. Abby Rosenberg: Yeah, I'm happy to. And thanks again for having us. You mentioned, Fumiko, the prevalence and problems that adolescents and young adults with cancer often have. One of the things that I like to point out is we know that if you're diagnosed with cancer as an adolescent or a young adult, you have higher risks of poor psychosocial outcomes forevermore compared to younger pediatric or older adult counterparts. With that in mind, we have been thinking for a long time about: how do you promote well-being and resilience in this particular population? One of the things that we also know is that adolescents and young adults with advanced cancers, those that have recurred or progressed through initial treatment, not only tend to be less engaged with a lot of the really important conversations that we have in healthcare, but later on, especially if their time becomes short, they tend to regret that disengagement. And so what we had done in our previous research is we had created this program called PRISM, and that stands for Promoting Resilience in Stress Management. And PRISM was a peer-to-peer–based coaching program designed by our team in partnership with AYAs for AYAs, specifically to help them navigate these stressors. And what it does is it leverages simple, reproducible, evidence-based what we call 'resilience skills'. And these are things like skills in stress management, setting goals, cognitive reframing - that's how you appraise a situation - and then benefit-finding or meaning-making. And our prior randomized trial suggested that PRISM compared to usual care amongst adolescents and young adults with early-diagnosed cancers improved their resilience and their hope and their quality of life, and it reduced their psychological distress. In those studies, teens and young adults who had advanced cancers said, "Hey, you know what? These skills really helped me navigate this first experience, and now that my cancer has come back, what I really need help with is applying these skills to these really hard conversations I'm having with my medical team and with my family." So the current study that you are talking about today really tried to ask the question of: could we combine our previous PRISM projects with some integrated advanced care planning communication skills for AYAs with advanced cancer? And if we did that, could we improve some of these important outcomes? And so what we did was we randomly assigned 144 adolescents and young adults with advanced cancer to either PRISM or usual care. In this study, PRISM included those same four skills - stress management, goal setting, cognitive reframing, and benefit-finding - plus an optional component where they could engage in formal advanced care planning skills. And then we saw what we got at 3, 6, 9, and 12 months. Amongst the 144 people who enrolled, their average age was about 16 and a half years, and they were half-half male and female. Within the first 3 months, the people who got usual care, not PRISM, did better with their quality of life. It's not what you want to see as an investigator. But the people who got PRISM did better with their hope and their resilience skills. And then I think what was more important is over time, the improvements in the usual care arm, they weren't sustained. And in fact, the people who got usual care instead of PRISM tended to kind of bounce all over the place with their psychosocial well-being. There was really no predictability, and on average, they did worse over time. But on the other hand, people who got PRISM not only immediately improved that resilience and hope at 3 months, but then they had sustained and continuous improvements in quality of life and distress. They were more engaged in things like advanced care planning and conversations with their doctors and nurses over time. And the overall suggestion of those data is that building skills and resilience and hope early on can lead to lasting improvements in overall well-being. Dr. Fumiko Chino: That is a fantastic overview of the trial, and again, I love this concept of building from within, you know, what started with a peer-to-peer type program and realizing that these skills are so helpful to people going through any kind of critical illness. Now, Lauren, I'd love your take on why this type of study is important, why interventions in the AYA space can be so challenging to develop and test. So, for example, in this trial, one-third of the intervention group discontinued sessions because they were either too busy or too sick. Dr. Lauren Ghazal: Yes. And thanks again, Fumiko, for the introduction and for having me here. As you mentioned in my introduction, I'm an AYA. I was diagnosed at 26 with stage 2 Hodgkin lymphoma. And as many of us AYAs in the advocacy space, as you know, at the time of diagnosis, I was doing far more important things in my life than wanting to worry about and deal with cancer. And so when cancer came very dramatically into my life, I had to tackle it with whatever, as Abby said, resiliency skills and resilient skills that I had built up to that point. I was 26, so 10 years over the median age of Abby's study, but that's what I was left with at the time to deal with my diagnosis and my survivorship. So I was also working as a family nurse practitioner in primary care, and I was also in my first year of a PhD program in nursing research. So I had caught that nursing bug to be a researcher really early on in my clinical training. And I remember seeing this paper come across my inbox a few months back, and I was so excited to read this publication. As an AYA, I'm always like selfishly so grateful to see work being done in studying resiliency and stress management and overall quality of life because I feel like I'm constantly kind of suffering with that and really trying to understand kind of how do I separate my AYA advocacy role and my personal experience in this work, and then also as a researcher in the AYA world. And so, yes, very excited to see this study. And we all know AYAs face these unique challenges, challenges that include high symptom burden, developmental transitions, these competing life demands that can make participation in research particularly complex. I know firsthand how overwhelming having a cancer diagnosis can be during this life stage that's already filled with so much uncertainty. And so when you're straddling again this independence-depend

    32 min
  6. JUL 21

    Incomplete Reporting and Toxicity-Minimizing Language in Oncology

    There is often a disconnect in toxicity assessment between what is reported on clinical trials as being "well tolerated" and the lived experience of taking a treatment for patients. Toxicity minimizing language including "safe" and "tolerable" are subjective and can downplay quality of life limiting side effects from treatment. A recent paper published in JCO OP reported that less than half of phase 3 clinical trials had "complete" toxicity reporting including total adverse events, deaths, and discontinuation due of toxicity. Dr. Chino welcomes two guests to discuss patient-centered clinical trial design with a focus on side effect profiles of treatment. TRANSCRIPT Dr. Fumiko Chino: Hello, and welcome to Put into Practice, the podcast for JCO Oncology Practice. I'm Dr. Fumiko Chino, an Assistant Professor in Radiation Oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity. There is often a disconnect in toxicity assessment between what is reported on clinical trials as being, quote-unquote, "well tolerated" and the lived experience of taking a treatment for patients. Toxicity-minimizing language includes words like "safe" and "tolerable." They are subjective and can downplay quality of life–limiting side effects from treatment. A recent paper published in JCO OP reported that less than half of phase 3 clinical trials had complete toxicity reporting, including total adverse events, deaths, and discontinuations due to side effects. I'm overjoyed to welcome two guests to the podcast today to discuss patient-centered clinical trial design with a focus on side effects from treatment. Dr. Ethan Ludmir is an Assistant Professor at MD Anderson Cancer Center with a primary appointment in GI radiation oncology. He is a prolific researcher on topics encompassing clinical trials, cancer outcomes, and the integration of biostatistics in oncology. He has a specific interest in improving clinical trial design, including designing patient-centered endpoints and complete reporting. He led collaborators in the manuscript that will frame our discussion today called, "Incomplete Toxicity Reporting and the Use of Toxicity-Minimizing Language in Phase III Oncology Trials," which was published earlier this year in JCO OP. Stacey Tinianov is the executive director and co-founder of Advocates for Collaborative Education, a global advocacy organization uniting patient, research, and policy advocates through pan-cancer collaborations, basic and advanced advocacy education, and the sharing of leading practices to change the narrative in cancer outcomes. Following her diagnosis and treatment for early-stage breast cancer 12 years ago, Stacey  has become a leading national voice for patient advocacy and empowerment via collaborative education, community building, shared decision-making, health data access, and person-centered design. Our full disclosures are available in the transcript of this episode, and we've already all agreed to go by our first names for the episode today. Ethan and Stacey , it's wonderful to speak to you. Dr. Ethan Ludmir: Terrific. Thank you so much for having us, Fumiko. It's a pleasure to be here with friends and colleagues of many years to be able to talk about this important topic. Stacey Tinianov: Yes, thank you. Delighted to be invited, delighted to be part of the conversation. Dr. Fumiko Chino: Our specific topic today is toxicity minimization, either by underreporting or by language and framing that downplays the lived experience of treatment. Ethan, do you mind starting us off by telling us how you got interested in toxicity reporting and then briefly discussing what your study team did and the findings? Dr. Ethan Ludmir: Absolutely. Thank you, Fumiko. I have the privilege and luxury of being able to present research that is 100% the brainchild and terrific work of colleagues and friends, including the first author, a terrific graduate student named Avi Miller; colleagues like Alex Sherry. So I think it's always important to acknowledge I'm here mostly for window dressing. They really did the lion's share of the work and really have reported this fascinating story. Our lab works primarily on issues related to the optimization of clinical trial design and reporting. One of these key topics that has come up more and more over the course of time is how are we presenting toxicities? And so we gave this project the sort of cute name of "The Table 3 Fallacy." Right? When you present a clinical trial report, usually Table 3, just by the way things end up getting numbered, is generally where you find these toxicities. You see a massive Excel sheet of reported toxicities, and invariably it ends up kind of culminating in a sort of pithy couple of sentences saying, "Toxicity was manageable." So we wanted to really drill down on this with sort of two features in mind. One of them was, how well are we doing at objectively reporting physician-assessed toxicity? And of course, that comes with the itinerant kind of limitation that all three of us have both written about and talked about, that is physician-assessed toxicities are very different than patient-experienced toxicities - and maybe we'll put that to a side for one second - but objective toxicities on one hand and then subjective characterization of those toxicities on the other. So for this project, we looked at, we've sort of cultivated over the years an actively updated database of every phase 3 trial that's been completed in clinicaltrials.gov since the website's inception. And so in this report, we looked at over 400 trials representing over 300,000 patients enrolled. And we wanted to assess objectively how many trials reported in their manuscripts serious adverse events, treatment-related deaths, study therapy discontinuation, and an emerging area that really bears some emphasis, which is reporting of lower-grade toxicities. And I know we're going to discuss this as this moves forward, but especially in the last few years, this has entered visibility as an area that we really ought to be emphasizing more. As a sort of anecdotal point, it's very easy to characterize a single grade 3 episode of toxicity that potentially is self-limited. But on the other hand, if you've got a patient who has the misfortune of having grade 2 nausea day in and day out - sure, that's grade 2, but that can be much more impactful on somebody's quality of life. So being cognizant of these kinds of differences is important. So we went through these 400 trials and objectively categorized using pre-established guidelines how many reported serious adverse events, treatment-related deaths, study therapy discontinuation. And the answer is only 44% of trials consistently do this. We added and created sort of our own guideline - everyone comes up with guidelines these days, so we said we're going to do our own guideline - and add into the mix reporting of lower-grade toxicities. And if you call "complete toxicity reporting" doing what's been done before and reporting lower-grade toxicities, then only 32% of trials report out these complete toxicities. And perhaps the most interesting covariate there is that our industry-supported trials, which increasingly dominate the scene, those tend to do a better job at reporting toxicity profiles than cooperative group–sponsored studies. And we can kind of dissect that, perhaps, on the back end. And the final point is we looked at how often investigators are using language like, "Study therapy had toxicity that was acceptable or tolerable." These subjective languages that fundamentally minimize the experienced toxicities. And the answer is nearly half of trials report- have that language in the study text itself, often in the discussion section or the abstract. And this is what's picked up, right? This is what our patients read. This is what news outlets read. And I think this really fundamentally undermines a lot of the nuances here. But if you let me keep talking, I'll just keep talking forever, so I'll stop talking. Dr. Fumiko Chino: That was a really excellent summary of what your team did, and I agree 100%. Give credit where credit is due. It is a whole team that brings research like this to publication, and so I really always respected the fact that you have worked in very large teams and have given due credit to people like trainees along the way that are doing some really elegant work under the auspices of the- I'll just call it 'The Ludmir Lab'. Now, as you mentioned, patients may really consider side effect profiles very differently than what investigators determine could be, quote-unquote, "clinically relevant." Stacey, I'd really love your take on the toxicity topic and how you've seen this play out in both the advocacy space and in your role as a scientific advisor. Stacey Tinianov: First of all, I am truly thrilled that all of this is being examined. We know that words matter. We know that we've managed to change our collective language in the oncology space and our understanding significantly of that impact in the last 10 years. We've modified phrases like, you know, "patients failing treatment" and we've moved to what is kind of more "what actually failed patients". So, you know, I think the key piece there is when we describe things like "manageable" and "tolerable" in scientific publications or in that Table 3, we are looking at "clinically relevant". And so I want to acknowledge that when you talk to people in clinic, you know, "manageable" means that there's a way to clinically manage a side effect. "Tolerable" means that treatment can continue. So we understand where these phrases originated from. However, as Ethan mentioned, these terms have very different meanings in day-to-day living. I spent some time actually quite recently at the FDA talking about the gratitude I have that, you know, safety and efficacy is a primary concern fo

    36 min
  7. JUN 16

    Park the Parking: Patient and Caregiver Perspectives on Transportation Barriers in Cancer

    Frustrations regarding the costs and difficulties with parking at hospitals is a common concern voiced by patients, families, and healthcare providers. Transportation barriers to receiving cancer care are incredibly common despite what appears to be relatively straightforward solutions. Dr. Chino welcomes two patient-centered health policy experts to discuss this: Dr. Arjun Gupta, MBBS, an Assistant Professor at the University of Minnesota; and Dr. Shakira Grant, MBBS, MSCR, the Founder & CEO of CROSS Global Research & Strategy. Transcript Dr. Fumiko Chino: Hello, and welcome to Put Into Practice, the podcast for JCO Oncology Practice. I'm Dr. Fumiko Chino, an assistant professor in radiation oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity. Frustrations regarding the costs and difficulties with parking at hospitals are some of the most common concerns voiced by patients, families, and healthcare providers online. There is nary a topic where you'll find a more unified level of outrage. Transportation barriers to receiving cancer care are incredibly common, despite what appears to be a relatively straightforward solution—to parking costs, at least. To discuss this, I'm excited to welcome two patient-centered health policy experts as guests today. Both have published work in JCO OP about transportation barriers. Dr. Arjun Gupta, MBBS, is an assistant professor at the University of Minnesota. He is a gastrointestinal oncologist, a symptom management enthusiast, and a health services researcher. His research examines cancer care access and delivery, the cost of cancer care, and the hidden burdens imposed on and faced by people with cancer and their caregivers while receiving this care. His 2020 editorial, "Park the Parking," documented parking costs at the top US hospitals as a source of financial toxicity. Dr. Shakira Grant, MBBS, MSCR, is the founder and CEO of CROSS Global Research and Strategy, a boutique consultancy focused on advancing equity-centered strategic solutions to complex healthcare challenges at the local, national, and global levels. She is the former health policy advisor to the US House of Representatives Ways and Means Health Subcommittee. Prior to that, she was an assistant professor at the University of North Carolina. Her qualitative analysis was published earlier this year and is called "Paying to Be a Patient in the Hospital and the Parking Lot: Patient-Caregiver Dyad Perspectives on Health-Related Transportation Access in Multiple Myeloma." Our full disclosures are available in the transcript of this episode, and we've already agreed to go by our first names for the podcast today. Arjun and Shakira, it's exciting to speak with you today. Dr. Arjun Gupta: Thank you. It's a joy to be here, Fumiko. Dr. Shakira Grant: Thank you so much for having me also. Dr. Fumiko Chino: Our specific topic today is transportation barriers to receiving optimal cancer care. This concern fits within the larger focus of addressing the social determinants of health, with the goal of improving access to high-quality cancer care for all. Research on health-related social risks and needs has proliferated in the last decade, and recent evaluations of food, housing, and transportation insecurity have expanded our knowledge on the barriers that some people face to receive care. Arjun, do you mind starting us off with just a bit of background about why these issues matter for patients? Dr. Arjun Gupta: Sure. So, just some background on social determinants of health. These are non-medical factors that are often at the community level that can have direct impacts on both health and health outcomes. So, these are all the issues that are associated with living and our daily lives: where we live, where we work, do we play, and what we play. All of these issues can, of course, impact what sort of medical conditions one might develop, but also the medical care that one might be able to receive. And we think about someone who does have access to public transportation or does have access to a private vehicle, for example, or someone who is a daily wage earner or an hourly wage earner, or someone who lives next to a toxic wasteland and is exposed to chemicals. So, all of these factors can, of course, influence our health risks. And as one can imagine, all of these social determinants of health can lead to health risks or social risks. And so, my real interest in this topic came about when I was a first-year oncology fellow. So much of our training in residency is on the inpatient side. But when we had our own continuity clinic in oncology during my first year of fellowship is when I realized the importance of parking and transportation for the first time. When a patient who was receiving FOLFOX chemotherapy for colon cancer, I asked them if they wanted to get blood work a couple of days before chemotherapy so that they wouldn't have to wait for the blood work to result on the day of chemotherapy, and they very passionately said, "Oh, of course not. I only want to come in one day because the parking costs $12, and Christmas is coming up, and I need to buy presents for my grandkids." And that really, really struck me. I remember reaching out to you, Fumiko, at that time. We were junior investigators and launching our careers in oncology on what is going on and why is this real. And I think we'd done some work parallelly to highlight how these major cancer centers were charging obscene amounts for parking, which for an individual visit may seem very small, but of course, cumulatively can be large amounts. And also the fact of the nickel-and-diming that comes in for these very, very vulnerable patients and care partners. And my interests in these transportation and parking costs and barriers have evolved since our research group has been working on time toxicity. So, over the last couple of years, this concept of the time burdens of cancer care has evolved. And initially, we were largely focusing on the amount of time spent in medical appointments. So, you go up, and it takes so long. And in qualitative interviews, patients brought up that even for simple blood draws, "I'm actually spending three, four hours out of the home." So, we actually looked at this formally because our oncology discipline didn't believe this data. They kept thinking a blood draw is 10 minutes tops; you just ask a patient to come in. At our cancer center, patients get a radio frequency ID badge when they enter the clinic. This is to track them within the cancer center. So, using that radio frequency ID badge data and the average driving time through their home zip code, we found that actually, even a simple blood draw was taking people more than 3 hours, home to home. And I actually made a couple of residents walk from the parking garage to the entrance of the cancer center and found that it was a median of 7 minutes one way. Now, remember, these are mostly young adults in their 20s, not walking in the Minnesota snow. So, you can imagine someone who's an older adult, at risk of slipping, walking much slower. So, all of this to say, these are major, major issues that patients and care partners face, and I was very excited to read Shakira's work on this topic. Dr. Fumiko Chino: I love how you walked us through the granular of the patient interaction that then drove you to research this type of study because, initially, you were trying to be very patient-centered in your approach, which is, "Let me separate the lab from the visit so we can save you some time." But what they told you was that, "Hey, it actually costs me more money, and it may not actually save me any time." And I think that dovetails really nicely into thinking about the study at hand, the most recent study. And Shakira, your study on transportation barriers really just came out, and it highlights the voice of the patients and the caregivers on the lived experience of cancer treatment. And one patient from your study specifically said that their travel to receive cancer care was not only wear and tear on the cars but wear and tear on the body as well. So that echoes what Arjun just said. And I think that quote really nicely highlights that it's the costs, it's the time, it's the stamina required to navigate the hospital. These all contribute to the burdens that our patients and their families carry. Do you mind, Shakira, giving me a brief overview about why you did this work and what you found? Dr. Shakira Grant: Sure. So, I would say to dovetail on a lot of what Arjun said, this came also what I was seeing firsthand in the clinical practice. And at the time when I was directly involved in patient care, my population was caring for older adults, primarily with multiple myeloma. My background is as a geriatric oncologist, and so by and large, that meant that most of my patients are over the age of 65. But apart from age, they're also battling other things such as disability and other chronic conditions that impact their functional ability. And so, I kept hearing stories over and over, not only from patients, but I recognized there was an integral part that is often overlooked in clinical care, and that is the voice and the role that caregivers play, especially when we're dealing with older adults who may not have the independence to drive a car themselves to get to the cancer center because it might be disability, it might be other chronic conditions that impair their ability to operate a vehicle. And they kept talking about the same issues around accessibility of the parking structures, the time it takes for them to drive from their homes, especially when they're having their chemotherapies or other cancer therapies, and that may impact them by not feeling physically well and then needing to still get to the cancer center to see a physician or to receive additional treatment. And then on top of that

    31 min
  8. MAY 19

    Pregnancy and Breast Cancer

    Dr. Chino talks with Dr. Erin Roesch and patient advocate Julia Maues about pregnancy associated cancer with a focus on breast cancer, the most common cancer diagnosed during pregnancy. This discussion is based off an JCO OP review article published in late 2024 called "Multidisciplinary Management of Pregnancy-Associated Breast Cancer." Transcript Dr. Fumiko Chino: Hello and welcome to Put Into Practice, the podcast for the JCO Oncology Practice. I'm Dr. Fumiko Chino, an assistant professor in radiation oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity. The incidence of early-onset cancer—new cancers in adults under the age of 50—is rising by 1% to 2% annually. Young women appear to be at particular risk, with cancer incident rates over 80% higher than similarly aged male counterparts. Collectively, that means that more patients are being diagnosed with cancer during their childbearing years. Pregnancy-associated cancer occurs in 1 in every 1,000 to 3,000 pregnancies and refers to cancer that is diagnosed either during pregnancy or within 1 year of delivery. On today's episode, we'll be talking about pregnancy-associated cancer, with a focus on breast cancer, as it is the most common cancer diagnosed during pregnancy. This discussion will be based off of a JCO OP article published in late 2024 called "Multidisciplinary Management of Pregnancy-Associated Breast Cancer." I'm excited to welcome both the first author of this review article and a patient advocate to the podcast today. They are both passionate about improving outcomes for people with breast cancer. Dr. Erin Roesch is an assistant professor of medicine at Cleveland Clinic Lerner College of Medicine and a medical oncologist at the Cleveland Clinic Taussig Cancer Institute specializing in the treatment of breast cancer. She is involved in clinical trials research, and some of her specific interests include the care of young women diagnosed with breast cancer, fertility in oncology patients, and women's health and survivorship. Julia Maues is a patient advocate working with researchers, clinicians, and other stakeholders to ensure research is patient-centered, innovative, accessible, and inclusive. She was working as an economist when she was diagnosed with breast cancer while pregnant in 2013. After delivering her son, she found out that cancer had already spread to her bones, liver, and brain. Julia co-founded GRASP (Guiding Researchers and Advocates to Scientific Partnerships), an organization that connects and fosters collaborations between researchers and patient advocates. She is also active within the Metastatic Breast Cancer Alliance and helped write the ASCO guideline for brain metastasis. Our full disclosures are available in the transcript of this episode, and we've already all agreed to go by our first names for the podcast today. Erin and Julia, it's really wonderful to speak to you today. Dr. Erin Roesch: Thank you. I appreciate the opportunity to be here and discuss this really important topic. Julia Maues: Thank you for having me. It's very important to include the patient voice on this topic, and unfortunately, I have a personal experience with this. Dr. Fumiko Chino: Our topic today is pregnancy-associated cancer. Erin, can you give us a quick overview of the background for pregnancy and breast cancer? I know in the recent era, breast cancer rates for those under the age of 50 have been rising faster than for other cancers, up to 1.4% per year since the mid-2000s. I'd always thought that pregnancy-associated cancer was pretty rare, and so I was really shocked to read in your paper that for women younger than 35, 1 in 6 with breast cancer are diagnosed around pregnancy. Dr. Erin Roesch: Yes. So, a cancer diagnosis during pregnancy is rare, with the incidence, as mentioned, of about 1 in 3,000 pregnancies, with pregnancy-associated breast cancer, or PABC, representing about 7% of all breast cancers diagnosed per year. Among women under the age of 45, PABC accounts for roughly about 2.5% to just over 6% of breast cancer cases. And for women less than 35 years, this rises to about 15.5%. Studies have shown a rise in PABC in recent years, and this is anticipated to continue with the trend of delayed age at childbearing. In regards to the pathophysiology of pregnancy-associated breast cancer, various hypotheses have been proposed to kind of try and shed more light on how this occurs and the driving factors for PABC. So these include hormonal changes that occur during pregnancy and lactation, immunologic changes that can lead to the immune tolerance of tumor cells, and also breast tissue involution that occurs after delivery and breastfeeding, which can lead to a proinflammatory state. In regards to risk factors, these include a positive family history, which is one of the strongest risk factors for breast cancer development, this includes pregnancy-associated breast cancer, pathogenic germline mutations—specifically BRCA1 or 2—and older maternal age at time of birth. We also know that breastfeeding has been shown to have a protective effect against breast cancer development. Dr. Fumiko Chino: So what I'm hearing from you is that just given the incidence rising in younger people and also delayed pregnancy, that this is really something that we're unfortunately going to be facing more and more frequently in our clinics and something that patients unfortunately will find that they have to face as well. Dr. Erin Roesch: Yes, yes, I think that's accurate. And just again, I think points to the importance of awareness of this particular topic. Dr. Fumiko Chino: Now, Julia, your lived experience in this space is really invaluable. Do you mind sharing it with us? Julia Maues: Yeah, of course. I was pregnant at 29, and I found a lump in my breast. I had an excellent OB-GYN and team, and they took it seriously. I think she wanted to watch it for a few weeks, but as soon as it didn't go away, she ordered an ultrasound, and that turned into a biopsy, and that turned into a cancer diagnosis. I lived near a comprehensive cancer center. I had multidisciplinary care, really excellent team, and was treated with chemotherapy during the pregnancy, which was very surprising to me and hard to accept. But they did provide me with a lot of evidence that that is the best treatment for both my baby and me. And so I did four cycles of Adriamycin-Cytoxan during the pregnancy and delivered my son at 37 weeks. He was healthy and full of hair, even though I was bald. That was very important, I think, for many reasons, but it showed visually that the placenta did its job and he was protected. After he was born, I could do scans that I couldn't do while pregnant. I had a lot of back pain and things that were thought to be pregnancy-related, or maybe they knew, and they just didn't go there because it really wouldn't have made a difference at that point, like, the treatment couldn't be any different. But I did that scan and found out that it was metastatic, and that changed the treatment that I did after the pregnancy, and instead of eventually surgery, I just stayed on systemic therapy for that long. And spoiler alert, this is 12 years later. That baby is in sixth grade and thriving. And I am very grateful for the privilege that I have to have received such excellent care and have access to the treatments that I have had, and also the luck to have had good response to treatments. Dr. Fumiko Chino: I love how you've taken your story and the successes, but also the horror and the terror, and really used it to galvanize your life in a mission to try to improve patient care for others. So I've always really thought that was phenomenal in terms of your mission and your drive. Julia Maues: Thank you. I'm very, very happy that it helps other people, but selfishly, it helps me to deal with my own difficult experience, and it's been a way to make something good out of this. Dr. Fumiko Chino: I feel very aligned with you on that in terms of my own personal story as a caregiver. It's one of the reasons why I became a physician. So I feel like you and I have a common touchstone there. And I think so many people in medicine and so many patient advocates are really trying to give back into a system to try to improve it for all because of either the ways that it helped them or the ways that they thought that it could be doing better. So thank you for sharing that with us. Now, Julia had mentioned that the staging scans were delayed until after delivery due to some appropriate safety concerns. And I certainly know that those diagnosed during pregnancy often have diagnostic delays. Erin, do you mind discussing what delays may occur in pregnancy-associated breast cancer and if there are any solutions to improve those delays? Dr. Erin Roesch: Sure. And I'd like to echo and certainly, you know, thank Julia for sharing her story. And I think as an oncologist, we learn so much from our patients, and so it's really, really important for us to understand, to be able to appreciate everything you've gone through. So I just, I really thank you for that. So in terms of, you know, the delays that we see—and I think, Julia, your story through this really kind of outlines much of what we see in terms of some of these delays and challenges related to the diagnosis and the workup of pregnant women with suspicion of breast cancer. So although the majority, about 80%, of breast cancers or breast masses, rather, detected during pregnancy will be benign, any palpable mass present for a couple of weeks or more in the breast or axillary region should really be clinically investigated, you know, as your doctor did. Additionally, any other breast changes—less common things such as an asymmetry, thickening of the skin, redness of the skin, nipple changes—those things should also be inve

    26 min
4.3
out of 5
17 Ratings

About

JCO OP: Put Into Practice highlights new research published in JCO OP related to cancer care delivery, quality, disparities, access. Host Dr. Fumiko Chino, MD FASCO interviews thought leaders in oncology to give listeners practical knowledge that can be used in day-to-day practice along with solution-oriented discussions and care innovations.

You Might Also Like