Dr. Chino talks with Dr. Talya Salz, the first author of the JCO OP manuscript "Impact of an Electronic Patient-Reported Outcome–Informed Clinical Decision Support Tool on Clinical Discussions With Head and Neck Cancer Survivors: Findings From the HN-STAR Randomized Controlled Trial (WF-1805CD)" which was published earlier this year simultaneous to the ASCO Quality Care Symposium. Jeff White, the Director of PR and Strategic Communications for the American Society for Radiation Oncology, also joins the conversation to provide the patient advocate perspective.

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.

Incidence of head and neck cancers is rising, primarily driven by HPV-positive oropharynx cancers, which are commonly diagnosed in younger people with overall excellent disease outcomes. Patient-centered cancer survivorship is a key evolving area of study, with the goal of improving quality of life after cancer treatment. This is particularly important for people in head and neck survivorship given large post-treatment symptom burden, including speech and swallowing problems, dry mouth and dental concerns, neck fibrosis, and pain.

I'm happy to welcome two guests today to discuss new research on how to improve communication in cancer survivorship. Dr. Talya Salz, PhD, is an Associated Attending Outcomes Research Scientist at Memorial Sloan Kettering. Her research aims to improve the quality of life for cancer survivors, focusing primarily on late effects after cancer treatment. She is the first author of the JCO OP manuscript "Impact of an Electronic Patient-Reported Outcome-Informed Clinical Decision Support Tool on Clinical Discussions With Head and Neck Cancer Survivors: Findings From the HN-STAR Randomized Control Trial." This publication was simultaneously presented with the 2025 ASCO Quality Care Symposium.

Mr. Jeff White is the Director of PR and Strategic Communications for ASTRO, the American Society for Radiation Oncology. He focuses on media outreach and manages ASTRO's social media channels in a way to expand knowledge and awareness about radiation oncology and its critical role in curing cancer. He was diagnosed and treated for an HPV-positive tonsillar cancer in 2023 and shared his story on RT Answers to help other patients understand the role of radiation, surgery, and chemotherapy in head and neck cancers.

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.

Talya and Jeff, it's really great to speak to you.

Dr. Talya Salz: Thank you for having me.

Jeff White: Great to be here.

Dr. Fumiko Chino: Talya, do you mind starting us off on how you got interested in trying to improve survivorship care, and specifically what gaps your research can fill?

Dr. Talya Salz: My research is really shaped by my experiences trying to navigate the health care system. I had some health issues in my 20s, and as a recent college graduate in a new job with my brand new health insurance, I was really shocked at how hard it was for me to find doctors that I trusted. It was hard to communicate what I needed and to get insurance to cover my care. That experience really steered me toward a career that addressed reasons why patients, and we're all patients at some points in our lives, have difficulty getting care that's appropriate, that's needed, and that's patient-centered.

So when I started doing health services research in cancer almost 20 years ago now, there was a growing consensus that after cancer treatment is over, after patients are told there's no evidence of disease, that they're cured, there are so many more health issues that can arise that had historically been neglected. And late effects of cancer treatment can last long after treatment is over, or they can pop up months or years later. All the distress and anxiety from cancer, that doesn't just vanish once the treatment is complete.

One problem is that there's no agreement on who should manage late effects of cancer treatments after treatment is over. Survivors have fewer appointments with their oncology team, and these visits traditionally focus on monitoring for recurrences and new cancers. Many oncology providers feel that late effects of cancer are realistically difficult to manage in the brief post-treatment visits or that these issues are out of their purview. So survivors are typically expected to return to the primary care they were getting, or maybe they weren't even getting it, before their cancer. And a lot of research has shown that primary care providers feel ill-equipped to address all the health issues stemming from cancer and cancer treatments.

Cancer survivors can feel a real burden by this transition from oncology-focused care to more general preventive care. In my survivorship research, I hope to understand and improve how cancer survivors' long-term health issues are managed as they navigate from cancer-focused to ongoing survivorship care.

Dr. Fumiko Chino: What a great and thorough answer to that question. I love the idea that you took the kernel of your own experience and then translated that into an entire career to try to improve the lived experience of cancer survivorship and outlined so many key friction points that survivors really face when they transition into this long, hopefully, road of survivorship.

Jeff, I think I've known you since the entirety of the eight years you've been at ASTRO, and I immediately thought of you as the perfect guest for this podcast focused on improving head and neck survivorship communication, as you are a communication specialist. Do you mind speaking a little bit about your role within radiation oncology and then how this became both the best and the worst background to have when you were yourself diagnosed with cancer?

Jeff White: Sure. Yeah, as you mentioned at the intro, I've been with ASTRO for about eight years and was brought in to kind of elevate the specialty as much as possible, either through media relations, social media, and partnerships and other things like that. When I came to ASTRO, a lot of people were saying to me like, "Wow, how are you and why are you working in cancer every day? Like, that's pretty heavy and that's pretty intense." And my answer was always, "You know, cancer is not really an issue within my family." So I didn't feel a huge connection. I was concerned about health care and access and things like that, but I wasn't really personally connected to it. So I thought, you know, I've been working day in and day out reading about cancer, understanding the different types of treatments for the different types of cancers. There were a couple of moments, and I distinctly remember working with Dr. Paul Harari when he was the ASTRO president, who happens to be a head and neck cancer specialist. He was talking me through kind of the whole process for treatment, and I distinctly remember saying to myself, "I don't ever want to get head and neck cancer. That looks pretty rough."

The irony is that here we are in 2023. I had a lump in my neck right after I had a physical, so I'd gotten all my... everything was good, my blood work was clean. And just this random lump appeared one day. So I went to my primary, and he was immediately concerned, "I think that you should go get it biopsied." And so that kind of started me down the path.

The good news was is that when I had the lump examined, it was a benign cyst. So I breathed a sigh of relief, and the doctor was like, "Great." He's like, "If you want to get it removed, you might want to go see a surgeon." So I kind of casually made an appointment to see a surgeon just to kind of get this little annoyance removed. And within two minutes, the surgeon was like, "I don't think that's what that is." He's like, "I think you have tonsil cancer." So that kind of started me down the path to kind of learn more about it, and obviously was biopsied and it was confirmed that it was cancer.

You know, that just took me down a whole path that I wasn't prepared for in any sort of way. I knew enough to be scared, but I also had no concept for what it really was until I kind of experienced it myself.

Dr. Fumiko Chino: I know you're so well integrated into radiation oncology through your role within the society. Do you feel like that gave you a leg up, at least in terms of getting a second opinion or facilitating the actual care?

Jeff White: I was able to connect with a radiation oncologist right away. I initially was told it was going to be three weeks to get a biopsy, and I just about fell apart because that was like... I couldn't possibly wait that long. So I will... you know, that was a blessing to have a connection in that respect. But I did, I shopped around. I live in Washington, D.C., so I am very fortunate that I have access to three top-notch facilities within a pretty close radius. I recognize that not every patient has that, but I was able to kind of find a place that kind of worked for me, that I felt comfortable with the team, I felt comfortable with the machines that I was going to be interacting with.

I also distinctly remember being in a waiting room looking at the patient materials, kind of reading it and thinking, "I've got to use this experience for good. Like, it's the only thing that could kind of calm me down a little bit because I was so panicked." And I thought, "I've got to use this as a learning experience and something that I can share with other people, and that might make this whole odyssey feel like there's a purpose to the whole thing."

Dr. Fumiko Chino: That's a lovely sentiment, the idea that you would use your lived experience to try to improve knowledge and education for other patients down the road once you got through it yourself.

Now, Talya, just to feature a little bit on the actual manuscript, do you mind giving us an overview about what you did, what the HN-STAR trial found, and what are you excited about in terms of the next steps?

Dr. Talya Salz: The goal of our trial was to improve the management of late effects for people who had finished treatment for head and neck cancer. As you talked about before, people with head and neck cancer can experience many ongoing challenges after treatment's complete. It's really sensitive anatomy, and there can be really aggressive treatments that can cause challenges with eating and breathing, speaking, movement, not to mention ongoing distress, fatigue, insomnia. There are comprehensive guidelines for the care of head and neck cancer survivors which include recommendations for monitoring and managing more than 20 of these late effects. The problem is integrating these recommendations into clinical care, and it may be hard to identify all the relevant concerns that survivors have and then manage them in a brief clinic visit.

We've learned from research among people undergoing active cancer treatment that asking people about their symptoms with standardized surveys, what we call patient-reported outcomes, can improve their symptoms, their quality of life, their communication with their providers, and even survival. So my team hoped that we could use patient-reported outcomes in the post-treatment setting for head and neck cancer.

To do this, we developed a web-based interface so that head and neck cancer survivors could complete surveys online, these are the PROs, about their symptoms before routine oncology visit. Those survey responses were used to identify concerns that reached a threshold that we deemed burdensome. We used that information to personalize a clinical decision support tool that the oncology provider could use in clinic on a computer or on a tablet. The clinical decision support tool presented each health concern and how burdensome it was to the oncology provider, and the provider could click on any of the concerns to see the guideline-based recommendations for management, whether the management was further testing, referrals to other providers, medications, or self-management.

There's more to the web-based tool. This tool is called HN-STAR, but those are the pieces of HN-STAR that are relevant to today's discussion. We hoped that when oncology providers used HN-STAR, clinic discussions could focus on relevant symptoms and concerns. Basically, the goal was to streamline and tailor care based on survivors' concerns.

In our trial of HN-STAR, we randomized 28 community oncology practices to either use HN-STAR or to provide usual care to head and neck cancer survivors in their practice. We enrolled 357 survivors at these practices. Survivors in both arms were asked to complete PROs for 26 concerns prior to a routine post-treatment follow-up visit, and after the visit, survivors in both arms were asked which concerns were discussed in clinic.

What we found was that these were very symptomatic patients, with an average of seven and a half burdensome concerns. In both arms, an average of five concerns were discussed in clinic regardless of whether the survivor reported the concern as burdensome. However, in the HN-STAR arm, an average of four of survivors' burdensome concerns were discussed compared to an average of three burdensome concerns that were discussed in the usual care arm. So importantly for survivors in the HN-STAR arm, 59% of their burdensome concerns were discussed in the clinic visit compared to 45% of burdensome concerns for survivors in the usual care arm.

This means that clinic discussions did not have a broader scope. The same number of concerns were discussed, but the discussions in the HN-STAR arm were more tailored to salient survivor concerns. This is not actually the main endpoint of our trial. We hope that these more tailored clinic discussions translate to improved care and improve health-related quality of life after a year, and we're still collecting these data. But we think it is really promising that this clinical decision support tool can streamline discussions between providers and head and neck cancer survivors.

Dr. Fumiko Chino: Now, Jeff, I would really love your thoughts on this trial and then about your own, sometimes maybe bumpy, transition into survivorship. So for example, what has worked for you to facilitate good conversations with your oncology team? And I would imagine given your active role within cancer education and communication that you actually have a leg up on some other survivors, but I would also still guess that there's a lot of opportunities to improve.

Jeff White: Oh, you'd be right on that. So the one thing that popped into my head as you were talking about this, Dr. Salz, was the timing of this. It really... getting my input or getting a patient's input at a certain point within the timeline is important, and it also... I like the idea that I could do it on my schedule versus feeling the pressure of being asked a question in person at the appointment because there's a lot of anxiety. You want to get the appointment over with, but like, if you have the time to really think through like, "You know, this actually is more problematic. I do want to kind of talk about that." I think that's very important.

I'm a communicator by nature, and so I feel pretty comfortable sharing. Plus I knew my doctor before I became his patient. But I will also be honest that I was hesitant to do too much research into what was going to happen for me long-term. I was overwhelmed, and I could only take in so much information, and that even included looking at my scans. And one of the things that I appreciated the most from my radiation oncologist was he was going to show me a scan after a PET scan, and I immediately froze because I did not want to see my body on that screen. And before he turned the light on, he said, "Do you even want to look at this?" And I said, "Nope. I don't. I really don't. You can talk to me about it, but I can't handle it." I just appreciated that he had the sensitivity to ask me that question because had he not, I would have been forced into a situation that I probably would have kind of fallen apart a little bit to see dark spots, you know, within my body and things like that. So…

The other thing I will say is that I didn't do a lot of research, as I mentioned, kind of post-treatment of what to expect, so it actually was kind of a surprise to me the troubles I was having with swallowing. I literally just came from the doctor's today because I have these neck spasms. You know, I'm about 2 years out but I have these fibrosis issues and things like that. I can only take in so much content a time before I get overwhelmed.

Dr. Fumiko Chino: Do you think that the information that you were given, much less the information that you did or did not research for yourself, but that what was given to you was actually sufficient to help prepare you for survivorship?

Jeff White: I'm going to say 'no'. I went to a number of different facilities for surgery at one place and radiation and chemo at a different facility. I was looking to see what sort of education they were going to give me because I was curious, like, what do patients get? I knew what I had access to, and I was a little surprised at how little I was given. There was some talk about things. I will say that especially, I'm going to say on the surgery side, they kind of breezed through the bad stuff very quickly, verbally, and that was it. If I missed it, I missed it. On the chemo side, I was given a multi-page document that I actually did read before it all started because I didn't know much about chemo, so I did read that. And then obviously on the radiation therapy side, you know, I knew enough to know kind of what was happening.

But I also chose to take it day by day. That just worked for me. I just was like, "Today is Tuesday. This is what's happening today." Because I couldn't think about... you know, and this was Day 7 of 33, and I just kind of went day by day by day and just took it as it came.

Dr. Fumiko Chino: I appreciate what you said about the idea that the provider really needs to tailor the level of information and the delivery to the patient, right? Which is you got... he got the signal that you did not want to look at your PET scan just either by non-verbal communication or by the look on your face. He said, "You know what? We'll skip this part." And again, I think that is a really important part of the cancer survivorship, treatment survivorship journey.

Talya, a recent JCO OP article, other than your own, from your colleagues within MSK used a patient portal document to try to elicit patients' core health-related values to better inform medical decision making. Amongst other things, they found that almost all providers found that the answers, when they were available, were quote-unquote "worth the time to review," although less than half, 42%, found them always or often helpful. And I'd actually love your perspective on this because one of the key points of improving how we implement patient-reported outcomes is that providers need to actually respond to them and change their behaviors.

Dr. Talya Salz: Yes. I have two thoughts about this. I love this study because it actually integrated this assessment of values into clinical care to see how it was used in practice. And this value assessment is another version of a PRO, just like we used in our study, and it was used to inform an upcoming clinic visit. There was a built-in use for it. And actually, just to make the point, in our study we didn't just provide the PROs to the providers; we actually gave them some actionable information, and we'll see in future analyses whether they used it.

The second point about this is that feasibility is a huge piece of this puzzle to improve patient-centered care. Patients have to complete the PROs, and they're sick, they're busy, they're inundated with surveys, they're inundated with other forms, billing, etc. And then at the same time, oncologists have to use the information. They can find the information valuable and helpful as these providers did, but they have their own constraints. Their clinics are busy, and having something be worth the time spent is a real struggle. So if a new process isn't woven into the workflow, it's unlikely to change care. So new processes have to be considered worthwhile and made easy to use. Implementation science, which is research to understand how we can implement research findings into practice, is really critically important here when we think about making changes to care delivery.

Dr. Fumiko Chino: Absolutely. We can't just do a study and then just assume it's going to happen because time and again, decades of research has not translated into actual benefit to patients if not implemented. So 100%.

Jeff, there was a recent JCO OP Art of Oncology Practice piece called "Patient Empowerment through Shared Decision-Making," and it speaks about the balance of, and this is a quote, "between beneficence which can be paternalistic and patient autonomy that requires a carefully crafted art." And I obviously think we still need to improve tailored communication within oncology to talk about the things that actually matter to patients, not just what we think is important as providers. This was one of the highlights for the HN-STAR intervention to me; it really helped facilitate those patients discussing the things that mattered the most to them.

Jeff White: Yeah, I actually really loved that study. I felt that the empathy that kind of came through in that piece was really impressive. And, you know, I 100% believe that each of my physicians, you know, had nothing but empathy for me. But they also were seeing multiple, multiple, multiple patients per day. And there was a line in there that really resonated. It said, "Cancer wreaks havoc on human lives." And I can't... I mean, I'm going to get emotional because it's like... that is so incredibly true. It throws everything in your world off, and you feel completely out of control. The next line said something, "but we can afford some control."

I have kind of reflected on like my anxiety levels which were extremely high in the process of getting the diagnosis and figuring out the treatment. Once I was in treatment, I think my anxiety went down a little bit because I was actively doing something and I was actively, you know, seeing doctors every week. Once I finished my radiation, my radiation oncologist was like, "Okay, see you later. You're going to now meet with the nurse practitioner." And I was like, "What? What do you mean? Like..." That was really jarring to me. And, you know, as much as I loved her, I was like, "What do you mean? Like, I'm still struggling here." And the struggle was real for many, many months. I didn't feel as prepared in that respect for kind of what was going to happen in the weeks and months afterwards and the anxiety of waiting for my first post-PET scan.

I don't think I answered your question in any way other than to say that like, I feel like there are so many different touch points for the patient to kind of check in and kind of see how they're doing. And I felt connected to my team, and I'm obviously not a shy person, so I was sending messages through the portal even just saying like, "I'm really struggling here. You know, this is way harder than it was... you know, was presented to me. Like, these mouth sores are no joke, man. Like, that was rough."

Dr. Fumiko Chino: Did you feel like you had to advocate for yourself to get speech therapy, occupational therapy, to see the right specialist to treat your ongoing concerns?

Jeff White: I was lucky because I was at a cancer center that was multi-faceted, so I had access to... I even had access to mental health support. At first I said, "No thanks, I'm good." My best friend is a therapist, so I felt like I had a person that I could kind of talk to. But after a while I was like, "You know what? I think I need to talk to an outside, like, third party that, you know, doesn't know me to kind of help process all this." And so I do feel thankful that I had access to acupuncture and massage and all that, you know, lymphedema treatments and things like that. I didn't know I was going to need all that, but it certainly is something that I've used over the last months and year.

Dr. Fumiko Chino: Now in survivorship, do you know the full span of what we can do, and +/- how it could help you? Because I've actually talked to some survivors that are like, "I didn't even realize that there was a sexual health specialist that I could have talked to about my ongoing concerns, because no one ever thought that my treatment for X cancer could affect my sexual health or my whatever."

Jeff White: Well, what have you heard about me? What has my partner told you? No, I'm just joking. I do feel like the cancer center I went to is so comprehensive and there was a range of services that I could tick off if I was interested. So, I do feel thankful for that. I also remember that, when I was undergoing radiation therapy, I was the only head and neck cancer guy. It was all prostate cancer. So in our little men's waiting room it was me and like 6 guys that were all undergoing prostate cancer treatment. And so we kind of built a little cohort in that respect.

The other thing I'll say is that I didn't realize the online community was so strong. I did actually have access to a support group through the cancer center that didn't work for me. It just wasn't... these were people that had very severe post-treatment issues, and I, you know, was just like a little newbie and they were like, "We don't have time for you." Like, "We've got bigger fish to fry." But Reddit has been amazing. So I locked into Reddit post-treatment, and I kind of wish I'd known about it while I was in treatment because it's patients talking to each other. No one's pretending to be a doctor. There's no fake stuff out there. There's no misinformation. And it's really people that are like, "I have the, you know, I have this similar cancer and here's what kind of worked for me." So I've been pretty active on there in the last year.

Dr. Fumiko Chino: I love what you brought up, this idea that the communities can be really tailored to the individual, how they best receive information. So for an online community that worked better for you than like the quote-unquote "authorized" patient support group. And what works for one person may not work for another person. So I think it actually harkens back to the trial, which is that, hey, patients should actually say "This is the thing that bothers me most. Can we talk about this?" Because for some people it might be neck spasms, for other people it might be dental caries, and for someone else it might be how they look and feel about themselves.

We are at the end of the podcast. I do want to leave a little bit of space for anything that you feel like we haven't covered yet. If we want to talk about surveys, if we want to talk about the community site research NCORP of it all, because I think there's a lot of opportunities to think about, for people who can't be treated at cancer centers that have all of the bells and whistles. For community practices, how do they actually improve survivorship care? I'd love to just open it up. Any last thoughts?

Dr. Talya Salz: I was thinking about what you said, Jeff, in terms of all the opportunities that were available to you at your cancer center. And I also come from a... work at a cancer center where all of these services and opportunities are broadly available, at least they're in place whether or not people use them and can afford them. But it was really important to our team that we make sure that our intervention works for people in community oncology settings.

And we worked with the NCI's Community Oncology Research Program, or NCORP, through the Wake Forest Research Base. The NCORP is dedicated to enrolling cancer patients who are treated at community oncology practices across the country into clinical trials, including cancer care delivery research trials such as the one that we did. And it was really important to us to be able to create a tool that would work in these settings. There was a real range of services that are available at these community oncology practices. I mean, some of them did have mental health services on site, some of them did not; speech and swallow rehabilitation therapist - some sites have them, some sites do not. And so it was a real challenge building a tool that could be flexible enough that providers could select options that were realistic for their patients. So I'm really grateful we had the opportunity to work with them. It was a great experience, and we ended up with a pretty racially, ethnically diverse group of cancer survivors, including a significant minority from rural areas of the country too. That was a real strength for us.

Dr. Fumiko Chino: I would be remiss not to mention that NCORP is funded by the NCI, and the research that comes out of NCORP is not possible without strong federal government funding, which is the thing that is exactly at risk right now in the current restrictive funding environment.

Dr. Talya Salz: I hope that my vocalizing my support while you were talking did not get in the way, but that is extremely important that this kind of research continues to be funded by the NCI and actually the American Cancer Society funded a lot of this research as well.

Dr. Fumiko Chino: Thank you so much for this amazing conversation today. Many thanks to both Dr. Salz and Mr. White, as well as our listeners. You will find the links to the papers that we discussed in the transcript of this episode.

If you value the insights that you hear on the JCO OP Put into Practice podcast, please take a moment to rate, review, and subscribe wherever you get your podcasts. I hope you'll join us next month for Put into Practice's next episode. Until then, I hope your winter is warm and bright.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Conflicts of Interest

Fumiko Chino

Employment

Company: MD Anderson Cancer Center

Consulting or Advisory Role

Company: Institute for Value Based Medicine

Research Funding

Company: Merck

Talya Salz

No relationships to disclose

Jeff White

No relationships to disclose