Deborah K. Mayer, PhD, RN, AOCN, FAAN: Cancer Survivorship Issues Rank High on the ONS Research Agenda
Deborah K. Mayer, PhD, RN, AOCN, FAAN
Associate Professor, University of North Carolina at Chapel Hill School of Nursing
Editor of the ONS Clinical Journal of Oncology Nursing
The Group Room at the 2011 Oncology Nursing Society Research Conference is my possible, in part, by:
Selma R. Schimmel, Founder, Vital Options International
This is Selma Schimmel in Los Angeles at the eleventh research conference of the Oncology Nursing Society. And today we’re going to be speaking with some of the leading presenters and senior nurses, many of them hold PhDs in nursing and right now I am joined by Debra Mayer. Hello, Debra.
Deborah K. Mayer, PhD, RN, AOCN, FAAN, Assoc. Professor, Univ. Of North Carolina at Chapel Hill School of Nursing
Hi.
Selma R. Schimmel:
Thank you for being here. You hold some pretty important titles- you are also the editor of the Oncology Nursing Society Clinical Journal of Oncology Nursing. You are associate professor in the school of nursing at the University of North Carolina, Chapel Hill. Welcome to Los Angeles.
Deborah K. Mayer:
Thank you.
Selma R. Schimmel:
You’re going to be talking to us about something that is very important to me as a multiple time cancer survivor, which is Survivorship.
Deborah K. Mayer:
Survivorship started with the National Coalition of Cancer Survivors and began the groundswell. I think one of the major markers in this has been the report from the Institute of Medicine from Lost in Transition and a lot of the survivorship issues that are being addressed now were identified in that seminal report around the transition from active treatment to surveillance and follow-up was a very important time where survivors felt lost. And I must say, survivors don’t always call themselves survivors; Survivors call themselves whatever they want, whether they want to call themselves patients, veterans, whatever… but, the whole area of the field is survivorship. So I’m not speaking about any one individual. They need to name themselves as whether they consider themselves a survivor or not. Many patients will tell me, “I’m still on treatment; I don’t consider myself a survivor.” But the work that’s going on is really trying to pay attention right now, focusing on that transition from active treatment to more of the surveillance time. And that’s been a very difficult one emotionally, as well as physical recovery.
Selma R. Schimmel:
Yes, and also at a time when people are learning to live with cancer perhaps as a chronic disease.
Deborah K. Mayer:
Right now, a lot of the efforts are focused on people who get a treatment and then stop their treatment. There’s also a sub-group of people whose disease doesn’t go away, who will be on therapy for the rest of their lives in some way or another. We haven’t yet targeted enough services and programs for that group as we have for the people who have ended the therapy and are trying to get their lives back to some kind of new normal.
Selma R. Schimmel:
Well, let’s talk for a little bit about the key issues and concerns that impact the survivorship movement.
Deborah K. Mayer:
I don’t think we have a full appreciation yet of a lot of the long-term issues that are going to come from the treatments in the disease that we’re seeing. And I think the longer survivors live, the more we’re going to understand some of the late effects of what we’re doing. For example, are we precipitating heart disease in people who have had drugs that affect the heart? Are we affecting bone health for people who have been on hormones that affect bone strength? Cognitive changes, all of those… And I’ve been an oncology nurse since the seventies; it’s a mixed blessing. In the early days, people didn’t live long enough to worry about those things, now we have twelve-million survivors who are, many of them, 20-25-30-years out and I think that we’re going to need to keep learning from them to understand that.
Selma R. Schimmel:
And one of the concerns I have for patients is that we get very stuck in the world of cancer and following our cancer health but we also need to stay on top of our other general health issues and I’m concerned about the number of survivors who are, you know, sort of bringing their internist back into the mix. And if you have had breast cancer the importance of your cardiac status and being sure that you’re staying on top of your cardiovascular health.
Deborah K. Mayer:
One of the areas that I’m doing research on is some of those issues, especially around cancer survivor treatment summaries and care plans, and health behaviors of survivors. Because some people may use this as a wake-up call, others may not; and a wake-up call in a sense of, not only “am I living the life I want to be leading?”, but also the issues around “what else should I be doing to live a healthier life?”. And I think that we’re trying to use that transition from being on-treatment to off-treatment, to pay attention to those. I clinically practice seeing women during that transition from breast cancer and look at things like physical activity and weight and other screenings for health promotion and things like that. Primary care providers want to do that but they don’t feel well informed yet and so we really have to educate them because they’re the ones that are going to be following survivors over the long haul. We’re going to have a workforce shortage issue in oncology. Patients should go back to primary care providers to get their general health. There’s been a number of studies that have looked at what’s called ‘shared care’ where the person with cancer is followed both by their oncologist and by their primary care provider and those patients get the best of both worlds. And so if you just see your primary care provider, you may get your flu shot and your cholesterol checked and what-have-you. When you see your oncologist you may get your mammogram or your colonoscopy. But it’s really seeing both of them that will help you get the best care.
Selma R. Schimmel:
And to that, in this time of emerging medical health records, patient health records… and I emphasize the patient part because all of us really need to be able to keep during our survivorship journey copies of our medical records and understand it and have our pathology reports and have our labs and those at our fingertips because that’s how you stay as a well-informed survivor.
Deborah K. Mayer:
The issue around electronic health records is a bugaboo of mine for a long time. I mean, we can go to an ATM any place in the country and swipe our card for our bank and get information and get money; we cannot do that for our health care. Whether you carry your information and keep your own records on a USB stick or in a notebook or what-have-you, nobody is going to look out for that in the same way as you are. If you leave the institution or you move or you change doctors, you are going to be the sole source for all that information. The treatment summaries are meant to be a synopsis that are written out by the providers that give detail, enough detail that no matter where you went or who saw you, they would understand what happened to you. That is something everybody should have. Now, whether you put it in a drawer until you need it or just feel reassured that you have it, that’s fine but I think we need to start thinking about “how do we empower the survivor to be in charge of their own information?”.
Selma R. Schimmel:
We went through a period where for so long we, and not just cancer patients, but in general, a culture where we would surrender that power in a much more maternal-istic way to our physicians, and we would leave the doctor’s office knowing, “well, all my information is there”. There really is a shift here and it’s a re-education of teaching people to help them know that they have to be responsible, they have to have that information, especially I worry about younger adults who think they’re invincible and get hit with cancer at a young adult age and they’re off to college and they’re moving locations. That information is so vital to have.
Deborah K. Mayer:
It’s very important that the person be informed about what happened to them. The level and degree of detail varies by what happened to them or how old they were and all those other kind of things, but they need to be able to go to a source. One if the issues is our informatics infrastructure of health care does not yet support the seamless move of that kind of information. Someday, maybe in my lifetime that might happen, but don’t count on it. And so, even I’m trying to work within my own institution where our electronic health records can communicate in a way where we could populate a report like that for the patient to give them. We’re still far away from doing those kind of things.
Selma R. Schimmel:
Survivorship is a very important topic. It’s very ranking up there on the ONS, the Oncology Nursing Society, agenda. Talk to us a little bit about that.
Deborah K. Mayer:
Well I’m actually involved with helping to establish the research agenda for the Oncology Nursing Society, and survivorship is one of the key areas that we’ve identified. And so we want to identify for people who are going to do research and for people who are going to fund research areas such as long term and late effects, the issues of health promotion in survivors, or what-have-you. For example, I’ve done a study with looking at smoking rates in survivors and the smoking rates are fairly low in most survivors, the former smokers are high, and certain sub-groups like lung cancer survivors but they’re still dropping, meeting or below the national average. However, women with cervical cancer have an extraordinarily high rate of smoking.
If you’ve already been told you have cervical cancer, it’s certainly a co-carcinogen, along with HPV. Those women should be targeted for smoking cessation/smoking prevention programs. So that’s, for example, a way to identify even though many cancer survivors are no longer smokers or have never been smokers, that’s a very high-risk group we should be going after. So the Oncology Nursing Society is setting the agenda and then it’s up to individual investigators to go off and try and deal with this, you know, problem at a time.
There’s a lot of work to be done and I think we have thirty-seven-thousand members in the Oncology Nursing Society and these nurses really care about those issues. Many of them are chemotherapy nurses but many of them also see patients outside of those settings but beyond the oncology nursing specialist I think we need to be reaching out to the general nurse and nurse practitioners; family nurse practitioners, adult nurse practitioners, others who are actually going to be delivering the survivorship care. And they need to be informed about how to do this and what to look for.
Selma R. Schimmel:
In so many ways I think that cancer patients need to understand that while they have a medical oncologist it’s actually their oncology nurse that will have more time to talk to them, that may be the one that puts the pieces of the puzzle together, who really understands the myriad issues that go into being a survivor, and also, may be your best ally or advocate to help your doctor understand what’s going on with you.
Deborah K. Mayer:
Absolutely. And then the other part that people need to think about is, if you’re lucky enough to have been treated and possibly cured, you may not see your oncologist for the rest of your life; and that’s okay. I think there’s some magical thinking that goes on that if you see your oncologist or oncology nurse and they lay their hands on you and do a couple tests that it’s some kind of protection from the cancer ever coming back. And there’s an emotional connection and there’s that thinking that, you know, this makes it okay but over the long haul it’s the primary care provider that’s going to have to assume all that care because they’re the ones that need to be delivering it. And there won’t be enough oncology nurses and doctors to continue to follow survivors over the long haul that way unless there is an issue or a problem.
Selma R. Schimmel:
In closing, because you said this before we went on the air but I think it’s important for viewers to understand where your own passion comes from. You, yourself are a survivor. You are a unique oncology nurse in a way that you can not only combine your knowledge and expertise from what you’ve learned and the discipline that you are a professional in, but equally important that you’ve walked the walk and you understand it intimately.
Deborah K. Mayer:
Well, the irony in all of that is I’ve been an oncology nurse for thirty-five years and I have walked that walk with my patients for a long time and have learned many of my life lessons from them. I’m only a breast cancer survivor the last three years so it has changed some of my research focus, it has changed when I see women with breast cancer I’m sort of a member of the club and I do appreciate more around the periphery of the story, like the impact of what it means to you and your family to go through these things in a different way, but very few of us are going to get out unscathed given the cancer incidence, either currently or in the future.
Selma R. Schimmel:
Well I want to thank you for being outspoken about it. Not every health professional wants to mix in their personal experience but by doing that, that is probably one of the highlights of what our viewers are taking from you today. Deborah Mayer, oncology nurse and fellow survivor.
Deborah K. Mayer:
Thank you.
Selma R. Schimmel:
Thank you very much.
END OF VIDEO