Nurse scientist Donna Berry, PhD, RN, received the 2011 ONS Distinguished Researcher Award, which recognizes a nurse researcher whose work has enhanced the science and practice of oncology nursing. Berry is the director of the Phyllis F. Cantor Center for Research in Nursing and Patient Care Services at the Dana-Farber Cancer Institute and associate professor of medicine at Harvard Medical School in Boston, Massachusetts. Berry discussed several of her research topics with OncLive Nursing, including patient adherence to oral oncolytic therapy, symptom management, patient quality of life, and patient decision making in cancer treatment.
Berry: Nurses have to prepare [patients] to give themselves chemotherapy, or give themselves their anti-tumor therapy, whereas traditionally, the nurse was right with the patient, giving an IV chemotherapy or an IM, intramuscular injection. But now the patients are going to do this at home…and…without adequate understanding, the patients may not take the medication as prescribed and they can get in big trouble. Their blood counts could go down. They could get really sick—have gastrointestinal side effects. So patient education becomes critical for these drugs, and nurses don’t always have that kind of time scheduled into their visit.
So one of the ways that we’ve started to address that, not just at Dana-Farber, but at other cancer centers as well, is to provide a very systematic way of preparing people to take oral oncolytics, and that begins with the prescription, when the patient makes a decision…with their cancer specialist, to take the oncolytic and to receive the prescription. Then we teach them about the side effects, but we know very well they’re not hearing everything we’re saying.
So we’ve designed and tested 2 different projects, one led by our nurse practitioner, Robin Sommers, and I’ve mentored her to do this on the project, to teach the patients as we get the prescription and follow up with a 72-hour phone call that takes them through a series of questions to teach and inquire at the same time—teach and inquire about everything that’s happening. “Where do you keep your medication? How often are you taking it? Have you experienced anything new since you’ve been taking that pill?” And that way, at 72 hours after [the patient begins treatment], we get some really good information, and it is the critical time that we can tweak what might not be quite right.
We [also] ask the patients to keep track at home, using a diary of how often they’re taking [the medication], and they do really well using the diary. When we pilot tested it in the first 30 [patients], 27 of them did a really great job of keeping track of things with their diary. What we did notice is that many of them didn’t know what to do about their side effects, so we have continuing work to do and we’re following up on that.
Then we have another project…in the gastrointestinal treatment center…We have another project with our patients with lung cancer taking erlotinib [Tarceva], which is one of our oral oncolytics. And we’re doing a very similar process, only this time it’s the feasibility of can this [adherence intervention] actually happen without, say, a research nurse involved?
It’s not a study. It’s actually what’s going on in real practice. Do the nurses have time to go over this? Do they make the phone calls? Is it possible? Is it practical? We’re taking the evidence that these follow-up phone calls and these written instructions work, and we’re testing whether it’s practical in a busy cancer clinic.
So that’s how we’ve gone about it. We’re not using any high technology or anything fancy yet. We’re simply looking at it practically to do this systematic teaching, systematic follow up with this questionand-answer inquiry and asking patients to track it. And it looks good. It looks really good so far.
That’s a really excellent question because the future is where we’re going very rapidly. We have a practice in oncology that has traditionally stood shoulder to shoulder with our physician colleagues. And during the last few decades, our physician colleagues have developed monumental treatments for cancer that have changed the cure rates. And we have been right there, alongside the physicians, as they’re treating these tumors, working on that with them.
Now, as our nursing science and our nursing interventions have evolved, it’s time for us to be right beside each other, nurse scientist and clinical nurses, and bring those interventions that nurse scientists have developed into the practice, and that’s where we’re poised, right at [this] time, to do that.
The future is going to be eliminating the science and practice gap. I say, “Scrap the gap.” Don’t put a bridge over it because if you bridge it, it stays there. You have to scrap it, fi ll it in. We have to have clinical nurse scientists doing research in our clinical settings on a daily basis. We have to have clinical [nurses] that know [what’s] happening on a daily basis. And then we have to have the nurse scientist engaged in helping practitioners build it into practice.
That doesn’t mean that we need huge clinical trials that cost $1.4 million, like we do for the original research studies. We need feasibility studies, like I told you about with the oral oncolytics. We need application studies, evaluation studies. But in order for that to happen, the people who know how to do [these studies] have to be involved…Nurse scientists like myself have to be involved, and we’ve got to fi nd a way to do that… The future is to bring it together.
Well, the Symptom Management Excellence Initiative is possible because the Cantor Foundation, and Mr. Richard Cantor, who’s the president of that, he truly believes that nurses need to have resources to raise the bar on their practice to a level that they’re using evidence every day, that the best evidence for interventions is at their fingertips. And so he has sponsored us to do the Symptom Management Excellence Initiative.
What we do is…bring together data from patients, from nurses, from physicians, and when I say data I mean, “What are the most pressing symptoms that we need to deal with? What do our patients tell us that bothers them the most? What do they have more commonly? What are the symptoms that aren’t being regulated by The Joint Commission [in the same way that] pain is [regulated]?…Where can we make the most improvement?” That’s what our Symptom Management Excellence, SME, Initiative is all about.
We started with fatigue. It was the most common [symptom], one of the most important to manage, and had evidence, strong evidence that an activity-based intervention could make a difference in mitigating or reducing fatigue. So with our patients that hit a moderate level of fatigue, we’re going to be implementing a home-based walking program with them. We’re going to give them the opportunity, using our electronic monitoring system, to track their steps [using] a pedometer, their fatigue levels, [and] how many minutes they spend walking. We’ll start them out with 10 [minutes] and move them up to 30 minutes each day for at least 5 days a week, and help them graph that electronically over time or on paper.
And hopefully, we’re doing this without research staff. This is all clinical staff. It’s nurse practitioners. It’s physicians. It’s nurses who are already working in the clinic, direct-care nurses, not researchers. Can we do it? Can we make this happen? If we can’t, [with] where we are at Dana-Farber right now, I think it’ll be a long time before we can do it, because we’re doing it very systematically and really keeping track of how well it works.
So the ESRA-C, the Self-Report Assessment for Cancer… [provides] a series of questions about symptoms, side effects, and quality-of-life concerns…and then of those things [it asks] what are the most important… to deal with today. The program [then] automatically creates a color-graphic summary. It’s 2 pages. Within 60 seconds, the nurse or the physician specialist looks at it, says, “Those are the 4 problems my patient [is] having.” And it’s a 60-second glance. It’s not a 10-to- 15-minute interview of yes-no questions, you know, the 20-question, “How’s that, how’s this, how are you doing?” It is a 60-second glance. [A] big red bar tells you where to start with the patient because that’s where they’re having the most trouble.
So what we found in our research is that if you provide that summary to a clinician, that the symptoms and quality-of-life issues are discussed more often than when that’s not available. That’s really, really important, but that’s just the first step. That just means [the issues are] talked about. So in the next phase of our study, not only are we providing the summary so that symptoms and quality-of-life issues get talked about, we’re [also] coaching the patients to [describe] specific [details] about the symptoms. “It started 2 days ago. It’s worse than when I saw you last. On a scale of 0 to 10, it’s about a 7.”
We [then] give them tips on how to handle these symptoms at home with reputable sources, and we help them understand [that] they’re not alone. They’re not the only person that’s experienced this. We give them real-time data on what percent of our patients have experienced that symptom either before or after treatment. So they get that message, “You’re not alone. There’s something to be done about it. Here’s what you tell your clinical team and [here are] self-care tips on what you can do.” At the end of the day, we hope…these patients will experience lower symptom distress.
So prostate cancer, there is no other cancer that occurs more often at an early stage in more Americans than prostate cancer, and it also has the most uncertainty in outcome per treatment. So, we don’t know if a man has surgery versus having radiation versus…active surveillance… we don’t know if there’s a difference in survival between doing any of those treatment approaches. So medically, we can’t say to a man, “You should do this.” What we say is, “Here’s the list of what you can do…now go off and decide.”
Wow, that’s a lot of decision making on somebody who’s not ready. You know, you don’t spend your life preparing for a cancer treatment decision. It kind of comes on you suddenly. So what I’ve discovered in my research over the years is men use personal factors to make their decision because there’s no medical factor that tells them what to do. So I knew that I needed to develop something that would facilitate decision making for men, based on [both] personal factors and medical factors.
So we put this [program] together, and we’ve tested it for a number of years now, and it’s designed to assess those personal factors and coach men to talk about those factors to their doctors. In preparation for the decision, they receive this intervention, and then they go in for the specialist consult. They know they have cancer. They receive what’s called the Personal Patient Profile-Prostate intervention, and then they go see their doctor.
And what we found out in a national trial that we’ve just completed the analysis for is that if men use it, their decisional conflict is lower over 6 months after the time they come into the study. It’s the first time that any intervention has been tested nationally, in a study of men…[in] every demographic group, and it’s made a difference. They have lower decisional conflict after [the intervention].
The Distinguished Researcher Award means an incredible amount to me because my peers recognized my work and wanted to celebrate it with me…And they’re specialty peers, so that’s an incredible honor. They’re people that know better. They’re people that know what it’s all about that nominated me for the award…I’m so incredibly honored.
My advice to new oncology nursing researchers [is] twofold. [First] stay close to practice. Even in an academic setting, even as a professor in a university, you can stay close to practice. Even if you’re a lab scientist, a nurse scientist…I have colleagues at the University of Washington, where I was, [who] are nurse lab scientists, and they stay close to practice by working with other clinicians, and so that would be my advice.
My other advice is never, ever, isolate yourself. Volunteer to be on other people’s studies, even if they can’t pay you. You will gain so much in the experience that it will be way more [worth it] than the $2000 a year they might have paid you in salary. Volunteer to be involved in other’s research—start small and build, and get help, get mentorship. That’s my advice.