Understanding and Improving Quality of Life for Cancer Patients Through Nursing Research With Terri Armstrong, PhD, ANP-BC

Oncology Data Advisor: Well, to start out, I thought maybe you could tell us a little bit about yourself, your career, and how you've now ended up at the NIH.

Terri Armstrong, PhD, ANP-BC: Oh, sure. My name's Terri Armstrong and I started in oncology nursing back in 1987. I started at Ohio State, and I worked with patients with leukemia. At that time, patients with those illnesses would come into the hospital at the time of diagnosis and oftentimes stay for a year. We would change the holiday decorations in the room, and they would be there getting their induction chemotherapy in their consolidation. So, I really got to know them, and at the same time, my mother was actually diagnosed with leukemia and became a patient on the floor where I work.

During my shift, I would take care of patients on the floor, and then in the evening I would be with her. So, I got this perspective of seeing what it was like from both sides. When she passed away, I really decided that I wanted to focus on understanding the impact of the disease and the treatment we were giving on patients, and that would be my focus. So, I was able to go back and get a Master's in Oncology, and then I did a postmaster's nurse practitioner, but working with people with leukemia was too close, I think, to my own personal experience.

So, I had an opportunity to either stay in leukemia care or transition to care of patients with central nervous system tumors, which was totally foreign to me, and I decided to go that way. So, for about 30 years, I had been a practicing nurse practitioner, taking care of patients with central nervous system (CNS) tumors, but always had the idea that I wanted to more fully understand their experiences and do some research in that area. I started doing some work looking at what their quality of life was, and my initial findings were not what I thought. We were giving patients, at that time, this really intensive chemotherapy where they would be in the hospital and they would be nauseated and they would need transfusions, and then I would give them a tool to measure quality of life and they would say, "My quality of life is great." Right?

So, there was this disconnect between quality of life and what I saw people experiencing. When I decided to go back and get my PhD, I focused on understanding the connect between the biologic processes of the disease and symptoms with the recognition that quality of life is really important, but it's really subjective and it's really influenced by other things in the person's life that are equally important as the cancer. Their support system, their family, how they feel about the treatment that they're doing, all those things impact their quality of life.

I focused on understanding the experience of symptoms in patients, and in my doctoral work, I developed a tool to measure the experience of symptoms in patients. And then in my research career, I've focused on marrying that understanding with exploring the biologic basis and the underlying biologic risk of symptoms, and then also developing interventions that are based on that understanding of the experience in that biology. So, I've been at the NIH since 2016, and I'm a Senior Investigator—we use weird terms at the NIH. A Senior Investigator is like a professor. And my program really focuses on improving the life quality of patients with CNS tumors through this translational research approach.

I focus on understanding the biology of the symptoms, the underlying risk, and then also collecting data to fully understand what the experience of the patients are. So, during my time as a nurse practitioner, I would see these things happen over and over and over again to different patients at different points in the disease process. I recognized that I needed to understand that full picture, so what happens along that trajectory, and then try to understand what are the biologic underpinnings when I would see that common symptom occurrence.

I lead a natural history study at the NIH, and that allows us to collect data on patients over the course of their illness—so not just when they're part of a therapeutic clinical trial or just a diagnosis, but really from diagnosis through survivorship or the end of life for that person. And we look at things like their overall symptom burden and their experience of depression and anxiety. We look at their general health status, but at the same time, we're collecting the clinical data about what they're being treated with. We collect their family history and their past medical history to understand their underlying risk, and we collect biologic samples so we can start to explore that relationship between what they're perceiving and then what we're able to identify as the biologic processes.

Oncology Data Advisor: Wow. That is incredibly interesting and important. So, going back to what you said about what you saw before; do the patients still perceive that their quality of life is good if they are stuck in the hospital, or has your research come up with any answers to why they were saying that?

Dr. Armstrong: I think what my research has shown is that no two individuals are the same. And it's really their perspective of what that is and the meaning of what they're going through that influences that. I think the thing about quality of life is it's incredibly important. I think if you ask any health care provider, we all want to improve the patient's quality of life, but sometimes it's not the things that we can do that impact that. We can try to influence it by the words we use, how we explain things, the time that we take, the support that they may need, whether it be the financial toxicity that they may experience from their treatment or the symptoms and side effects that we can give them medication for or try to impact. But there's always this intangible part that's really their perception.

During the course of my caring for patients, there was one patient who really taught this lesson to me. His name was Dr. Carl. He was a Physician; he was an Ophthalmologist. And when he was first diagnosed with his brain tumor, he said, "I don't care, I have to work. As long as I can work, let's do the treatment. Let's keep going." And when he couldn't work, he wanted to travel. And when he couldn't travel, he wanted to spend time with his family. And when he couldn't do that, he wanted to be able to be taken out to the dinner table. And when he couldn't do that, holding his wife's hand at the bed was what defined quality of life for him.

So, not only is it different between individuals, but I think it is relative and it can change in an individual person over time. It's always understanding the perspective of the patient, but at the same time looking at those factors that we can impact. If someone is saying, "I have a good quality of life," but they're having vomiting, they may not recognize that if you can manage that, you may make it better. So, did that help?

Oncology Data Advisor: That totally helped. I had not thought before that people's quality of life idea can change over time, which is a very important variable, right?

Dr. Armstrong: Exactly.

Oncology Data Advisor: Because once he could no longer work, his perspective changed, so it was still quality of life.

Dr. Armstrong: Right, and I think the thing that sometimes we as health care providers maybe don't think clearly about is that we have to understand what their definition of quality of life is, right? And as long as they're informed and that they are telling you what their goals are and what's important to them, that should guide us. Particularly with the patients that I research, and I care for, brain tumor patients, it's a very rare cancer, about 2% of all cancers. It involves the brain. So, that can be overwhelming. And sometimes patients have neurologic symptoms. They may have issues with memory or speech or the ability to walk on their own. And it's easy for someone who doesn't spend time with those patients to look at that situation and say, "Well, I wouldn't do treatment. I would go to Hawaii," or, "I would focus on something else," or, "Does that person really understand what's happening to them?" And so, I think it's important to recognize that you need to understand where the patient is and what they're experiencing and helping that to guide you to make sure you're addressing what their issues are.

Oncology Data Advisor: How does the family play into that? I feel like that's also a really difficult thing because the family doesn't necessarily perceive the patient as the same person that they've always been. And so, do you have any tips for on how to balance what the patient wants versus what the patient's family wants? Or do you listen to both?

Dr. Armstrong: That's a really important area for research. There are a number of nursing researchers, even other than me, that have spent a lot of time with that. Heidi Donovan and Paul Wood at the University of Pittsburgh are two, and we're starting to understand that as well. But I think brain tumors in particular, and spine tumors, are tumors that are definitely a disease that impacts the entire family. Oftentimes when they're diagnosed, it happens very suddenly. So, it's estimated between 40% and 50% of patients present to an emergency room (ER) with an acute event, and that's how their cancer is diagnosed. You can imagine you're going about your life and then all of a sudden, you're in an ER. They're thrust into this world and their family's thrust into that world as well. There are changes in roles for them. They may not be able to return to work, and in fact, over 80% of those with malignant tumors cannot return to work from the time of diagnosis.

If they were caring for the children, maybe they have physical limitations or cognitive limitations that make that more difficult. So, the impact is for their significant other, their caregiver, and their family. Some of the things that we try to do—so at the NIH where I work, we are able to provide care at no cost to the individual. It's paid for by taxpayer dollars. And as part of that, we provide transportation to our clinic, and we include that a family member can come with them. So, that way when they're seen, they're there with their support system and that carer is also there to receive the information that they need.

I think it's a real limitation in health care, understanding the impact on caregivers. And I think the National Cancer Plan has addressed that. I think Joe Biden has addressed that with the new Moonshot, that understanding how we provide support for those caregivers in a very structural way is important. What we're trying to do is, I'm working with an amazing postdoc right now, Macy Stockdale, who is focusing on really collecting information from patients and caregivers on what coping styles do they have, how do they cope with things in their life, so we can understand what they usually do. So, the interventions we do are based on that—understanding spirituality for them and the importance of that and understanding the financial impact. So, she's really spending time not only with research looking quantitatively, but she'll also be interviewing those caregivers too, to try to understand, in the modern era, what that's like and how we can better improve it. But I think by allowing those caregivers or providing support for those caregivers to be there, we hope that that helps them and makes them be part of the team who are providing care to those patients.

Oncology Data Advisor: That sounds fantastic. So, I don't want to take too much of your time, but I also wanted to ask, so you have clinical trials that are recruiting now. Could you talk a little bit about those?

Dr. Armstrong: Yeah, sure. So, I spoke about the natural history study that we do. We have that study there. We collect data on patients at least once a year to kind of understand what's happening within the trajectory. And then a companion study to that is we have an online version where we collect information from the patient. So, those who aren't able to come to see us at the NIH, they're able to participate remotely. And that allows us to get a more diverse and more geographically representative group of patients to understand the impact. We have, right now, two interventional trials that we're doing—one is looking at the use of virtual reality (VR) to improve the experience of anxiety that our patients face.

Most patients experience some anxiety around the time of their cancer diagnostic imaging. This tool, this use of virtual reality, is a way to help the patients either through distraction or use of cardiac coherence; breathing, depending on the scenario that they look at, learn to kind of self-regulate that anxiety that they may feel at the time of their magnetic resonance imaging (MRI) and their follow-up visit when they're learning if their tumors stable or recurred or not. Amanda King, who's a research fellow in my group, is leading that effort and we're really excited about this study. This type of application has been used primarily with pain. It's been used in patients who have burns prior to their therapy.

And what they find is that not only does it help them when they're using the virtual reality, but they then learn those skills so that even without the headset, they're able to kind of apply that distraction or that cardiac coherence breathing technique. We think there may be application beyond central nervous system tumors to other cancers as well and want to publish the feasibility of that. We also are looking at a talk therapy program called CALM. This was developed by Gary Rodin in Montreal and has been shown in other solid tumors to improve quality of life for individuals and reduce depression. We're doing it in people with brain tumors, because oftentimes these patients are not included in clinical trials, either because of the rarity or they're afraid that they may have cognitive issues, and we've shown that it's feasible to do in these folks, but we're also doing it via telehealth.

And that really hadn't been done before. This was an intervention where the individual would have to come into an office and see the clinician and spend time there, and we're doing it via telehealth so the patients can be in their own home. And we think that with COVID and our experience with that, how important it is. For both that and the VR intervention, it's all done remotely with the patients at home. We find that patients really appreciate that and not having to kind of get in a car, get on a plane, or come to see us to participate.

Then the last study we have, we're actually looking at the use of smart-wearables. So, one of the symptoms that we found is incredibly important in our patients is sleep disturbance. When they get radiation to the brain, sometimes they experience hypersomnia, or increased daytime sleepiness, where they have to nap. My lab is exploring the biology of that, why that's occurring, and what genes make them at risk or are protective. With the smart-wearable study, we're using Fitbits to actually monitor patients' activity and sleep to gain a further understanding of what is impacting that for them and the relationship between the two things. We are monitoring that for over a month. That's also something that people felt like our patients wouldn't be able to participate in. We just submitted the paper looking at the feasibility of that—very feasible. We're collecting really important data to help us understand how active people are and what their sleep is like so we can intervene to help make that better. So, those are the studies that we have enrolling right now.

Oncology Data Advisor: Maybe some other time we can interview you about that, because that is just incredibly interesting. I did not know that their sleep was impacted. Just from having a puppy, I know how much sleep impacts me and my existence, and that all goes into quality of life.

Dr. Armstrong: No, I'd love to talk about that. That has been the focus of my lab. So, we actually had identified that this fatigue had been described after cranial radiation, but as a nurse practitioner, I noted, well, patients are having to nap during the day.

Dr. Armstrong: And we collected data and found that they actually had a shift in their melatonin. So, they had a spike in their melatonin in the middle of the day, which probably aligned with why they were having to nap during the day. Then we found some clock genes that were associated with this effect. And actually, one clock gene per two was protective. We developed an animal model. We developed transgenic mice to further explore the biology. We think that we understand now this relationship between some of these clock genes and what the patients are experiencing with cranial radiation. By taking symptom science to understanding the biology—why the symptoms occur—then we can target, those who are at risk by understanding the biology and not just say, "Oh, you're at risk for fatigue or sleep disturbance, so everybody needs this intervention." But no, let's see who has the risk or has the protective effect and target the treatment of symptoms just like we target the cancer based on the biology. So, I would love to talk to you about that.

Oncology Data Advisor: That's super incredibly interesting. Send me the paper and I will read it when it comes out.

Dr. Armstrong: I will.

Oncology Data Advisor: I did not know that. Is there a way to block melatonin spikes?

Dr. Armstrong: Yes, it's really interesting. There are ways that you can impact it by the use of light therapy, but you have to be careful how you do it in these patients, right? What our brain tumor patients are experiencing is similar to what shift work disorder folks do, people who are trying to work evenings or nights where they kind of have a shift in their natural production. So, the idea is with light, you can try to shift the melatonin back to where it needs to be later in the day, which is super exciting.

Oncology Data Advisor: That is super exciting. Okay, back to this. I have one more question for you. We have a lot of nurses in our audience that are thinking, "Oh, I have this really good idea. I have an intervention that I would like to do." But how do you start thinking, "Okay, here I have this intervention" and get to, "Okay, I can submit for a clinical trial." You know what I mean? It's a huge thing, but we want to have our younger nurses think this is possible and you have clearly done it very successfully.

Dr. Armstrong: I'm really glad you asked that question because I think it's really important. I talked about when I started at Ohio State and had my mother there and experienced that. At that time there was a clinical trial looking at the impact of a couple of different mouth rinses on stomatitis that patients get on treatment and the trial was negative. But as the nurse on the floor, I thought, "Well, why are we testing these two medications? What else has been evaluated?" I had a mentor say to me, "Well, let's look at the literature together." A clinical nurse specialist and I spent time, and I looked at the literature and I found what the literature said and was able to write my first paper. I think that curiosity that nurses who are working with patients have, that experience that what you see, is really important to kind of guide research and make it clinically meaningful.

If you're there at the bedside and you see these things, you're going to have ideas on what patients need and you're very close to that experience. So, the thing that you need to think about is partnering with someone who has the skills in doing the research part of it. When I started, I thought, "Well, I can do this on my own." And I tried, but I realized that you need that education, that doctoral education to understand how to develop a clinical trial and how to do the statistical analysis. And that's not something that anybody knows through osmosis.

You have to go to school for that. So, you can either partner with somebody who has those skills, and that's a really nice model that people talk about where clinical nurses and nurse practitioners' partner with researchers or you can decide to go back and then get that education and training. And I made that decision to go back, and I was able to fit it in my work. I worked, and I went to school, and I kind of continued to marry that clinical practice with what I was learning in research. I love that part of things—as a clinician, seeing the same thing over and over and thinking, "I know what I can do about this."

Going back and getting the tools so you can do it is totally doable. And I hope more nurses will consider getting those skills or partnering with someone like me who's gone back to school to get those skills to say, "Let's take your idea and let's make it come forward." All the research ideas that I've been able to explore and continue to explore now either come from my own or somebody else's clinical experience. So, in the clinic, as one example, the clinic nurses and I noted that if it was a young woman coming in for this one particular treatment, temozolomide, that we give brain tumors, that they would have a higher risk of myeloid toxicity. We kind of knew it when we saw it.

So, we went back to our dataset, we found that yes, they were at twice as high of a risk of developing this. And then I was able to take, my research skills to go and find a polymorphism associated with that risk. So, we now are developing biomarkers so we can say, "Hey, if the person has this biomarker, they're at risk." It was really this idea of, how can we modify the anxiety that patients feel around the time of their scan? As a nurse practitioner, patients would be calling me the week before, scared. For a couple of months, they can forget about the tumor, but when the MRI's coming up, it's like, "My cancer's going to be back. How can I do it?"

So, it's knowing that experience. I need to do something to help them right before their MRI, so they can reduce their anxiety, so when they come to their appointment to talk about it, they can actually hear what the physician is saying. They're not overwhelmed with the anxieties. So, those are two examples that I think yes, as you notice those things and you have ideas, that can inform and make it more meaningful research for the patients.

Oncology Data Advisor: Thank you so much for taking the time to interview with me, and I look forward to reading your paper.

Dr. Armstrong: Absolutely. I'm happy to share it with you. And thanks for taking the time. Bye.

About Dr. Armstrong

Terri Armstrong, PhD, ANP-BC, is a Senior Investigator the Deputy Chief of the Neuro-Oncology Branch at the National Cancer Institute, where she also leads the Patient Outcomes Research Program. Her research interest revolves around central nervous system tumors, how they develop, how to better treat them, and how to enhance patients' lives during and after treatment. With a plethora of experience as a care provider, Dr. Armstrong remains passionate about her practice and has led many research teams in clinical and therapeutic trials.

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Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor.