Chapter 09: Research into Dyspnea

Chapter 09: Research into Dyspnea

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Description

Dr. Escalante explains that her first research focused on symptoms that patients presented in the emergency service, Station 19. She first looked at dyspnea, combing through records to discover what kinds of patients presented symptoms of shortness of breath, eventually developing a derivation model that predicted who would die from dyspnea, a signal that “the end is coming.” She explains the significance that this information could have for physicians, patients, and families making end of life treatment decisions. Dr. Escalante explains that she conducted this research with very little money (none at the beginning) and learned research methods from the bottom up. She describes the impact her findings might have had, but observes that in practice this information is not used enough to have long term impact.

Identifier

EscalanteCP_01_20140603_C09

Publication Date

3-6-2014

City

Houston, Texas

Topics Covered

The Interview Subject's Story - The Researcher; The Researcher; Discovery and Success; Professional Practice; The Professional at Work; Patients, Treatment, Survivors

Transcript

Tacey Ann Rosolowski, PhD:

How did that evolve? What happened next in your research career?

Carmen Escalante, MD:

So I’m trying to remember. You know, then it probably got started with fatigue, cancer-related fatigue. Charlie Cleeland, somewhere along the line, came.

Tacey Ann Rosolowski, PhD:

I’m sorry. Charlie?

Carmen Escalante, MD:

Cleeland. C-l-e-e-l-a-n-d. He’s the chair of Symptom Research right now. Charlie had developed the Brief Fatigue Inventory, which is a tool to measure fatigue in patients. And patients were becoming more proactive about fatigue and their quality of life. I mean, back when I first started, many patients weren’t surviving to have a quality of life, and now things were turning. Many diseases were—patients were surviving and doing better, but they had this fatigue.

Tacey Ann Rosolowski, PhD:

Where does it come from, and what’s it about? I mean, I don’t think most people understand what’s unique about cancer fatigue.

Carmen Escalante, MD:

Well, with regular fatigue, if I go home and say I’m fatigued, I’ll take a nap or rest and I’m better, and I can go about with my business. With cancer-related fatigue, it doesn’t get better with rest, and it may not just be physical. Sometimes it’s cognitive as well. But no matter how much they rest, it may not get better. There’s a lot of factors that can influence fatigue. As far as the path of physiology, we really don’t know for sure what causes persistent fatigue in some of our cancer patients versus others. There’s lots of interest in an inflammatory response with cytokines, whether this is triggering it, because two patients who get the same treatment, one can never have fatigue or have very little fatigue and recovers, and another never really recovers. There’s also, now, thinking is it a toxicity, is it a genomic thing, is a genetic predisposition to this toxicity, nobody really knows. We also know that depression, anxiety, sleep problems, other unmanaged co-morbidities, all of that can contribute to fatigue, so it’s right up an internist’s alley, because you really have to assess everything when it comes to fatigue because it’s so nonspecific.So Charlie approached me and said, “Look, you know, I want to use my BFI tool. Why don’t we develop a clinic that we could use it.” So, again, an opportunity, so we start the Cancer-Related Fatigue Clinic, which is the first in the country.

Tacey Ann Rosolowski, PhD:

When was this?

Carmen Escalante, MD:

Probably the late nineties, about ’97, ’98, somewhere around there.

Tacey Ann Rosolowski, PhD:

I should have it. I don’t know if it’s—

Carmen Escalante, MD:

It’s in the late nineties.

Tacey Ann Rosolowski, PhD:

]Ninety-eight.

Carmen Escalante, MD:

Yeah.

Tacey Ann Rosolowski, PhD:

Yeah, that was the opening of it.

Carmen Escalante, MD:

Yeah. And so it was a new idea. We were the first in the nation. So we developed this clinic. We used a panel of tools, survey tools, start seeing patients, start with the breast patients, pilot it, you know, kind of get a feel. It takes a lot of time to see these patients, because you’re doing a really global assessment. We’re giving them these tools. I mean, a new, totally new era of how we look at even acknowledging fatigue as a toxicity. And fatigue was the most common symptom, is still the most common symptom, over-surpasses pain as the most common symptom of cancer patients. And the patients, I think, felt validated, because for a while I think they thought it was all in their head, you know, this wasn’t real. And so the Fatigue Clinic takes off and opportunities start there.

Tacey Ann Rosolowski, PhD:

So, now, with the clinic, its purpose was research-based but also what could you do for patients at the time?

Carmen Escalante, MD:

Clinical, right. Both clinical-based and research-based, and the research, we did a clinical trial. We got funding to do a clinical trial. I mean, the biggest thing I see is serving as a model for—gosh, we’ve had people from all over the world, from every which way. I published a paper about how we developed it so that other groups could do the same thing if they wanted to, knowing that this is a very sub-specialized clinic. This is not going to be available everywhere. But for a large cancer center, it’s something we can offer.

Tacey Ann Rosolowski, PhD:

So what were some of the first studies that you did? Well, maybe I should ask first off, what did you feel you could offer patients right off the bat? I mean, what did you know at that moment you could do for them?

Carmen Escalante, MD:

Well, a thorough evaluation, treatment of treatable things that we could find. Depression often was very common. Sleep problems. Making sure they weren’t hypothyroid, their other medical issues were taken care of. You know, even today being a cheerleader, encouraging them, I mean, a lot of it is looking at the glass half empty or half full. Many of these patients are just frustrated. And the biggest intervention is exercise. And so some of our patients had never exercised even before the cancer, and they’re telling us they’re fatigued and I’m going to tell them to go exercise. So, you know, it takes a lot of encouragement, a lot of talking to get them to that phase, “Okay, I’m not going to just do it once and quit,” and getting them ready to do it and seeing them back and re-measuring the fatigue and encouraging them, especially if they move the mark.And we started seeing that, after we started looking at our data, that we really could make a difference, and if we could move patients from a severe to moderate or a moderate to—even a unit from a moderate to a mild, it really made a difference clinically in what they were doing. And sometimes they had other things that we could treat along that got things moving really quickly so—

Tacey Ann Rosolowski, PhD:

Such as?

Carmen Escalante, MD:

Depression, that’s very common. Anxiety. Sleep, we’ve diagnosed a lot of sleep apnea. So there was a number of other things that may not have been diagnosed that we diagnosed and treated.At first, it was just me, and then I got another faculty member to help me, and it was very small, and it’s still limited, because it takes a lot of time and effort to see these patients, and the cost is high because my hour and a half or hour with this patient is billed the same way as a consult that might take thirty minutes. But you start seeing the fruits of your labor.I was on the ASCO guidelines. The first ones were the NCCN guidelines for fatigue. The ASCO one just came out or we just started working on this past year and we’re just finished. So I got to meet other experts in the fatigue world, because prior it was mostly a nursing issue. You know, you find a lot of it and still in the nursing literature, but there weren’t a lot of physicians involved in the fatigue portion of it.So for an internist, no one owned it. It wasn’t a turf issue. It was a new thing that could help patients, and it fit. And we gave lots of lectures, especially at the beginning, interviews—still do—to patients, to other providers, about it. Unfortunately, you know, as far as the direct cancer-related fatigue after you get rid of all this, there’s still limited opportunities on what you can treat with it pharmacologically, but at least patients are evaluated, we try to treat everything we can, and we’ve really made a difference. We looked at our data probably a couple years ago, because we published it, and patients, a large majority that came back after the first time where we had a second scoring so we could see the difference, had dropped substantially, at least to a different level, and it was within a couple of visits. So we thought that was interesting.

Tacey Ann Rosolowski, PhD:

Wow.

Carmen Escalante, MD:

You know, it wasn’t a study; it was just our clinical experience. So, you know, for me, it’s self-satisfying to see when a patient does well and they can do more things and they feel better.

Tacey Ann Rosolowski, PhD:

Sure. Now, you said it was just you at the beginning, so I’m trying to get a sense of how the clinic was set up.

Carmen Escalante, MD:

Well, it is a multidisciplinary clinic, but not everybody was in clinic. So I contacted a psychiatrist and physical therapy and, when we first started, nutrition, and then I would see the patient and I would refer them if they needed to see a nutritionist or if they needed to have physical therapy. So in a sense, it is a virtual multidisciplinary clinic, but it was me.Later on, I got an APN, which now I don’t have anymore, but at one point we did have an Advanced Practice Nurse that worked with us, and there are two of us, still two, not the same one that started with me. And we see patients weekly, each a half day, and we have a fairly good stream still. Some groups send more than others, but I think the patients—we’ve seen a lot of benefit for some of these patients.5And then we’ve developed, since then, a really nice educational brochure Louise[ A.] Villejo, with the Patient Education Group, helped us with, so it’s a really classy, shiny-cover brochure, because before we were giving them little flyers of paper. And then we were able to consolidate that, so every new visit gets—and it’s got other websites they can go to. We’ve done videos through MD Anderson TV on cancer-related fatigue that’s on websites that they can go to. You know, in fatigue education, we’ve taken part in that. Lots of things over the years.

Tacey Ann Rosolowski, PhD:

Are you designated as director of the program, director of the clinic?

Carmen Escalante, MD:

Yeah, Medical Director of the Cancer-Related Fatigue Clinic.

Tacey Ann Rosolowski, PhD:

Okay. Now, do we have time? We have just a few minutes until one o’clock.

Carmen Escalante, MD:

Okay.

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Chapter 09: Research into Dyspnea

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