Eileen Furlong, RGN, RCN, PhD, the European Oncology Nursing Society Distinguished Merit Award Winner in 2011, discusses her research on how a maternal cancer diagnosis affects children ages 7-11.

The Group Room at the 2011 European Multidisciplinary Cancer Conference was made possible, in part, by:

VIDEO TRANSCRIPT

Selma Schimmel, Founder & CEO, Vital Options International:

This is Selma Schimmel at the Multidisciplinary Cancer Congress 2011 at Stockholm. Today we’re joined by oncology nurse, Doctor Eileen Furlong, recipient of the 2011 European Society of Nursing Oncology Distinguished Merit Award for her research on the effects of a maternal cancer diagnosis on school-aged children. Eileen, congratulations.

Eileen Furlong, RGN, RCN, PhD, School of Nursing, Midwifery & Health Systems, Univ. College Dublin:

Thank you. Yes, I’m honored and privileged to be the recipient.

Selma Schimmel:

How does it feel after dedicating your life to oncology and nursing?

Eileen Furlong:

Wonderful feeling, and it’s just one that I certainly will treasure the feeling of today. I feel very honored to have received it. I feel I represent cancer nurses in Ireland in particular, and I have joined a list of very esteemed colleagues in this award, and as you can see people have received it in the past. So it’s a huge honor to me, and a huge recognition of over 20 years of cancer nursing contribution in Europe.

Selma Schimmel:

And what made you choose oncology research, nursing, as your passion?

Eileen Furlong:

I suppose in many ways once one qualifies in Ireland, one usually works more in a general capacity and I always had an interest in cancer nursing both from a personal point of view but also professionally. And my career in cancer nursing started with children’s cancer nursing so not something that one would take on without a lot of thought. Having said that I’ve worked with children for 20 years plus, I love children, and I suppose like any career once you decide on a specialty then it’s one that you acquire knowledge and skills. And then it becomes something that I love, and still do continue to love although I’ve moved into education as opposed to practice at the moment. So it was probably quite a personal choice in relation to having quite earlier on experienced cancer, having seen what it could do to families, to wanting to make a difference, at least wanting to try to make a difference for families.

Selma Schimmel:

And you have a PhD?

Eileen Furlong:

I do now, which is wonderful, yes. And I’ve just completed my PhD on looking at the impact of a maternal cancer diagnosis on school-aged children. Now school-aged children, I’m referring to early school-aged children, so seven to eleven year old children whose mother has been diagnosed with cancer. And again, I suppose it just follows through with my commitment to children, and what I believe.

Selma Schimmel:

What have we learned about the impact of children whose mothers are going through breast cancer?

Eileen Furlong:

My study focused on the children’s voices, and therefore I asked the children themselves about the experience. So from my study what we have learned is – and there’s a particular methodology and grounded theory – we’ve learned that children engage in a process of protecting their mother but also protecting their own lives as they navigate a period of what we call disruptive mothering. So the mothering experience is altered and the children have a loss of what they perceive to be the well-mother, and now they enter into a child who has a mother who is not well. So there’s quite a lot of negotiation within the family, changes in routines, changes in responsibilities, and the children found that quite difficult. They also did not like the fact that outside people knew about their mother’s illness.

Selma Schimmel:

Is there a feeling of shame?

Eileen Furlong:

There’s a stigma attached to cancer still and these children would not have known about cancer prior to their mother’s diagnosis. They had a public image of cancer so still quite a negative image of cancer and one where they would like their mom to be seen in public without, say, her wig on for example.

Selma Schimmel:

I’m curious about whether little girls develop any kind of fear as they begin to develop in relation to their own emerging breasts.

Eileen Furlong:

And I thought that might have been evident in my findings but it’s not. I had interviewed 15 girls and 13 boys so quite equal, and there was some siblings in that but there was no difference in the boys and girls in relation to the findings and their perception of the future. And whether they were quite young still and still hadn’t… I’m not too sure because I can only surmise findings but I could only go by what the children told me, and none of them were concerned about their own development of cancer at that stage. They were concerned about their mother dying, and even though every one of the children in my study their mothers had early stage breast cancer but the next prognosis all of the children in the study asked be during the interview about the fact of would their mother die. Even though they reassured themselves, and the mothers have excellent… they will do very well and have done very well.

Selma Schimmel:

What was the most surprising finding?

Eileen Furlong:

I suppose really that the disruptive mothering, the impact it had on the child’s life, and the need for the child to try and protect their own life, and it wasn’t that they weren’t concerned about their mother but the child’s innate focus was on themselves. And how they had to shift from being a child of a well mother to being a child of a mother with breast cancer. So what I saw was made a disruption to their life, and really the mother’s life has been disrupted but they were – and I know mothers might find it surprising – they were more worried about the disruption to their lives as opposed to the change that were happening in their mother’s life.

They resented the fact that their life changed. They had to take on roles and responsibilities that seven to eleven year old children in Ireland wouldn’t normally have to take on.

Selma Schimmel:

What recommendations based on your research might you have for a mother going through this experience with their young children?

Eileen Furlong:

One of the key recommendations I would like to look at is how we could put in play supportive interventions for parents whose children have been diagnosed with cancer. I think we connect standard to parents and I know my street is (inaudible) women with breast cancer at the moment it’s… there is an attempt to help the mother but because the structures in cancer nursing and in nursing medical oncology and radiation oncology, the children don’t get a chance to come into the hospital setting. I think that’s across most of the centers due to time constraints, infection control, and restraints. So therefore the child isn’t getting access to the health care professionals, and the health care professionals don’t have access to the children. So at the moment the children – I thought about it this morning – are being left out in the cold. Not intentionally, but they’re not getting access to health care professionals.

When we look at literature that’s available for children to help them understand cancer, there are some book that’s written but it’s written for talking to your child about cancer, but they’re written for an adult. So there’s nothing in child-oriented language. Now I say nothing, sorry that’s not right. There are some internationally there are some documentation there in relation, but I think we need to expand and look at having an interactive process for children, which help them understand the cancer diagnosis.

Selma Schimmel:

And age appropriate.

Eileen Furlong:

Very important. The language and cognitive development of the child, and social development of the child is really important.

Selma Schimmel:

How important is it to have open communication when one mom’s diagnosed with the kids?

Eileen Furlong:

It’s very important but very difficult, and that’s one thing parents are told when they ask the health care professional – be honest with your child. But then they’re told to go home, and for most of the children in my study they weren’t directly told that their mother had cancer. They picked up the cues in the family home from seeing their mother upset, numerous phone calls, numerous cards, flowers arriving, door stop conversations, whispering… so the majority of them were not told directly until they already knew, and then they were told. Now the parents meant very well, they were trying to protect their children, but that protection the children already found out in other ways. So it’s really important but I think as health care professionals we have to help the mothers and the parents who are diagnosed with cancer. They’re already coping themselves with the diagnosis, and we say ‘be honest with your children’.  Particularly I’m talking about seven to eleven year olds. Teenagers have a different capacity for understanding it. Children have already constructed the meaning of cancer, which is usually around television – the soap operas – and sometimes that… it’s very good sometimes but it’s not always in a real way for them in their understanding. So how to talk to children is a huge issue – about illness but particularly cancer.

Selma Schimmel:

And were there any notable changes in behavior with kids with their fathers while mom was going through cancer?

Eileen Furlong:

It’s really the interesting finding that I have discussed in my discussion chapter that 25 of the children in my study were from a two parent family out of 28. And the other three were from a single… that the mother was the single parent. Very rarely was the father actually mentioned – and I know this might be quite upsetting – at one point we thought the fathers were not involved but children focused totally on themselves and their mother. Now a lot of it was as well a lot of the fathers were out working during the day, and so therefore I’m not too sure if all of the fathers just remained the same in many ways. So apart from the fact that the dad about work he didn’t feature hugely. The relationship didn’t seem to center, and I don’t know whether that’s because the mother had the cancer, and therefore that was the focus – I wasn’t focusing on – I was focusing on them, I wasn’t focusing on them particularly, I was focusing on them as children with a mother who had cancer. But I didn’t exclude the father in anywhere my questions, and there is an actual concern about the absence of the father in my findings. And remember, this is just my findings.

Selma Schimmel:

What communication is really necessary so when that child goes to school that the teacher could be aware the child may be very tired, may not be doing assignments, may be falling asleep in class, may be acting out in class. Is there something you’ve learned about the dynamic between the teacher, the mother and the child?

Eileen Furlong:

The communication between the mother and the teacher was already established and the mother had told the teacher about the diagnose. Now again, remember the children weren’t too early so the teacher was told at a certain time as well. But what was interesting again, from the children’s perspective was they knew the teacher knew, they did not like the teacher asking about their mother in any public way in school. And they also didn’t like if they were singled out and the teacher called them up to ask about their mother. So in some ways I think it was quite an interesting relationship for teachers to get it right in how they cope with it. It wasn’t easy because if the teacher didn’t ask it might look like they didn’t care, but the children really wanted school to be normal. And by the teacher asking them it brought the impact of their mother’s diagnosis into another sphere of their life that they wanted to keep normal.

And I talk about this in my study by shifting normality. So the normality of home had shifted, they didn’t want the normality of school to shift. So there’s quite a dichotomy of whether teacher should ask and what teacher should know. But at the moment in our school system within Ireland it’s even difficulty of… large class numbers and even teachers themselves can cope with inspect communication with children. Children and teachers do it very well from an education perspective, but illness is not part of the school curricula in Ireland in relation to talking about illness – it isn’t part of it. So that was another interesting finding within it. It’s like yes, they want them to know but they didn’t want them to ask.

Selma Schimmel:

Well I want to thank you for the research. I think it’s very, very important that we don’t forget the impact that cancer has on our kids.

Eileen Furlong:

Thank you.

Selma Schimmel:

And a particular congratulations again for the EONS – the European Oncology Nursing Society – Distinguished Merit Award.

Eileen Furlong:

Thank you.

END OF VIDEO

Advocacy in Action lung cancer advocates discuss the important role oncology nurses play in lung cancer treatment and care.

Featuring: Regina M. Vidaver (National Lung Cancer Partnership), Selma Schimmel (Vital Options international), Glenda Colburn (Lung Cancer National Programme, Australia) and Liz Isler (Forum Lung Cancer, Switzerland).

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

Debra M. Wujcik, RN, PhD
Vanderbilt Ingram Cancer Center, Vanderbilt University Medical Center, Nashville, TN
Editor of ONS Connect Magazine

Selma R. Schimmel, Founder, Vital Options International

This is Selma Schimmel at the Oncology Nursing Society Eleventh Research Conference where we’re meeting in Los Angeles and speaking with many of the senior nurses involved with ONS, the Oncology Nursing Society, to find out what is being presented, what are the hot topics… And we are now joined by Debra Wujcik.  And Debra, you are also a PhD in oncology nursing and you are affiliated with Vanderbilt Medical Center.  You’re the Director of Clinical Trials at Meharry Medical College.

Debra M. Wujcik, RN, PhD, Vanderbilt Ingram Cancer Center, Vanderbilt University, Nashville

Yes, that’s correct.

Selma R. Schimmel:

And I know what your passion is because we talked about it before, and it’s clinical trials.

Debra M. Wujcik:

Yes, I work with clinical trials in a medically underserved population.

Selma R. Schimmel:

So let’s talk a bit about the role that the oncology nurse first plays in the clinical trials and research setting.

Debra M. Wujcik:

Well, the research nurses that I work with, we have two different levels.  So, we have nurses who are research nurses and then we have nurses who are nurse researchers.  So, the nurse researchers are trained at a higher academic level with doctorates in research and so the nurse researchers can develop, design and present their own research studies.  But the research nurses themselves are integral to the process as well because they’re the front-line people who talk with patients, explain the research studies and help patients really make that decision as to whether or not they’re going to participate in the research study.

Selma R. Schimmel:

You’re working within even a more challenging patient population of underserved and minority patients and that probably presents a whole other spectrum of issues.

Debra M. Wujcik:

Well, eleven years ago I started working at Meharry Medical College.  We have a partnership grant between Vanderbilt Ingram Cancer Center and Meharry to do cancer clinical trials.  And I was asked to start up this program because I had extensive experience in managing clinical trial staff at Vanderbilt.  What I was told was that minority patients, medically underserved populations would not want to participate in research; that they had a lot of fears about experimentation, a lot of mistrust for the medical system.  So I went with that expectation.  What we found, however, was that if we use the same processes that I was used to working with patients- that is, from the very beginning of their cancer diagnosis we include the potential for participation in research as part of a standard of care treatment option for them, that they were just as likely to agree to participate in a clinical trial as patients who were not minority or not medically underserved.  So based on that work that’s taken place over the last eleven years, we’re now moving out more into the community, which is the research that I’m presenting here at this conference.  We concluded that at the time of cancer diagnosis it was a little late to be talking about participating in research.  A person who has just been diagnosed with cancer has enough on their plate.  They’re scared, all they hear is cancer and all of the things that they may associate with that diagnosis.  So that’s a hard time to start talking about the importance of research.  So we now have a strategy where we’re going out into our community that we serve to try to talk about clinical trial participation before they’re faced with that treatment decision.

Selma R. Schimmel:

When we talk about minority patients, what is the cross-section, the ethnic diversity?

Debra M. Wujcik:

The group that I’m working with, the patients that we see, it’s about fifty-five percent African American, about forty percent Caucasian, and about five percent Hispanic.  And all of the patients that we see at our institution are under and underinsured so that makes them a medically underserved population.

Selma R. Schimmel:

And how important is it when you do the outreach to try to find an oncology nurse that comes from a similar background to break down the barriers of fear and trust issues?

Debra M. Wujcik:

There has been some research that indicates that when research is presented by someone who is representative of your race or ethnicity that it’s received in a better way; that’s not been our experience.  We have found that with cultural sensitivity training, with understanding the community that you’re serving, that it’s not particularly a barrier to be not the same race or ethnicity.

Selma R. Schimmel:

Where do economics come into play as far as a barrier in reaching minority populations for participation?

Debra M. Wujcik:

Well, access to healthcare is a huge issue for medically underserved persons and so you have to overcome that first of all.  So we, at our institution, at Meharry Medical College, where we see the minority and underserved persons, we have to get them healthcare first of all; and healthcare includes clinical trial participation.  So we have to start with access to healthcare and then clinical trial participation is not really an issue because you’ve gotten them through the doors.

Selma R. Schimmel:

And I think it probably is overlooked by many people, the understanding that even if you do not have adequate health insurance or you don’t have a lot of financial freedom, that many of the state-run county, major teaching hospitals take in a number of patients that are accessing clinical trials with the same medical team that someone with, perhaps, better health insurance or a more financial means is able to access.

Debra M. Wujcik:

Right, we’re trying to level the playing field, so-to-speak, so that insurance is not the barrier to participating in a clinical trial.

Selma R. Schimmel:

How is this information being assimilated and ultimately, how does the Oncology Nursing Society take this information and really help with this paradigm shift and this inclusion issue across the country?

Debra M. Wujcik:

Well, what we are learning from our community, and again, the research that I’m presenting at this conference is the result of town hall meetings out in the community and asking community members, “what do you know about cancer clinical trials? What do you know about medical research? What would cause you to not want to participate? And what would cause you to want to participate?” So, the generalizability of this study is the process that we’re using and just describing this model and how another research nurse could take that into her community and use some of the same principles.  Locally, we also are taking the findings and we’re applying them, we’re giving, feeding this information back to our researchers to say, “If you are wanting to solve the issues and study the problems in this community, here are some things you have to consider.” So, barriers, clearly, were ‘mistrust of the healthcare system’ and ‘fear’; so you have to address that up front.  So, we use that in, when we present a clinical trial to a patient, one of the first things we’ll say is, “Have you participated in research? Do you know anyone who has? Do you have fears or concerns that we should talk about before we even talk about this specific research study?”  The other part that I’m actually more excited about is that our community’s given us a lot of information about what would help them.  One of the things is, of course, education; and they said, “Bring the education out to us”. So we now have a related project where we trained community members to deliver a clinical trial message and they are out in their community, whatever group they’re comfortable with, with a set message about ‘cancer clinical trial participation’ and ‘for more information here’s the number to call.’

Selma R. Schimmel:

So, if you can just briefly, what are some of the points that would increase their desire, patient’s desire to participate versus those issues that would not compel them to participate?

Debra M. Wujcik:

Specifically, they said, they’ve told us compensation for our time.  For a cancer treatment trial we don’t necessarily give an incentive for that but if there was additional research, such as a quality of life component that took extra time we might consider providing some kind of incentive, a gift card, or something that says ‘we value the additional time that you’ve given us’.  They’ve told us that communicating with younger members of their community is a good idea.  The older persons that we had in our focus group said, “We’re pretty set in our ways. We are having a hard time with some of the modern things that are being done in healthcare but we trust our younger generation.” So that was interesting for us to target, maybe, a younger group about clinical trial participation even though cancer isn’t necessarily as high of an incidence in that age-group.  But they’re giving the information to their parents and their grandparents.  And another thing that they also said was to let them partner with us; that they really appreciate being able to give us feedback about the type of research that we do and that that helps when they feel part of it to then take that message back to their community as well.  So we’re learning some specific strategies that we believe is going to increase participation in our community; not just cancer clinical trials, but maybe trials for diabetes or trials for hypertension.

Selma R. Schimmel:

So Debra, in closing, obviously clinical trials is very high on the Oncology Nursing Society, the ONS agenda, just summarize that a little bit.  It’s such an important commitment of the society.

Debra M. Wujcik:

Well, the society again, is committed to research nurses; so these are nurses who are participating in research as well as for this conference, definitely supporting the nurse researchers and helping promote the issues, that we can make a difference, helping us to disseminate the results of our research so that others can learn from it.

Selma R. Schimmel:

With the shortage of nurses in the United States, what can we tell viewers who may be thinking of nursing as a career, what does it take to rise to the ranks?  Because this is a very, very specialized and senior area of oncology, nurses on the research level.

Debra M. Wujcik:

Well, it takes a passion and a commitment.  I wish we had longer to talk because I think nursing is just an absolutely wonderful profession for anyone to go into these days as our population ages there’s going to be more and more people that need care and so there will always be jobs for nurses.  But as a profession, nursing allows you to practice in many different ways.  And so, you can be at the bedside, you can be teaching, you can be conducting research, you can be participating in research.  There’s just so many avenues open.

Selma R. Schimmel:

How far along… you know, you may have a bachelors in nursing, but you have a PhD in nursing… how, what academic background is required to move into the role of actual oncology nurse research?

Debra M. Wujcik:

Usually an advanced practice degree, so a master’s degree really prepares you to understand the components of research.  At all levels of nursing you can participate in research, for sure but to be more directing that research and having your own research projects, asking the questions and designing the trials, it’s a master’s level is the minimum and then a doctorate really prepares you to lead a program of research.

Selma R. Schimmel:

Thank you.  I just wanted to sort of demonstrate just how far the field of nursing has come.

Debra M. Wujcik:

Thank you.  We appreciate you endorsing that.

Selma R. Schimmel:

Well, and I appreciate what you’re doing on behalf of clinical trials.  Debra Wujcik, thanks again.

Debra M. Wujcik:

Thank you for having me today.

Selma R. Schimmel:

Pleasure.

END OF VIDEO

Linda P. Sarna, DNS, RN, FAAN
UCLA School of Nursing, Los Angeles
Past-ONS Distinguished Researcher Recipient
This interview discusses the benefits associated with oncology nurse run telephone quitlines in helping smokers to quit, and gives an overview of various modalities and approaches now used to help people overcome this powerful addiction.

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 Oncology Nursing Society, ONS, eleventh research conference, and our discussions continue.  Now I’m joined by, actually an old from the group- oncology nurse, Linda Sarna.  How are you, Linda?

Linda P. Sarna, DNS, RN, FAAN, UCLA School of Nursing, Los Angeles

I’m delighted to be here.

Selma R. Schimmel:

And you are a woman of distinction here at ONS.  You are the past ONS distinguished researcher and you have an expertise in lung cancer and smoking prevention and cessation.

Linda P. Sarna:

That’s right.  It’s interesting, this is the eleventh meeting.  They meet about every two years and I was at the very first meeting.  And my research there was on people dying with lung cancer and at the later part of my career I focused on quality of life issues of people living with lung cancer, in particular.  And I couldn’t ignore the tobacco issue and actually how continued tobacco use also complicated their treatment and their recovery and even end of life care.  So with this conference I’m talking about some of the research that we’re doing to try to translate evidence into practice and really help nurses with patients quitting smoking in the hospital.

Selma R. Schimmel:

Let’s talk about some of the cessation programs and let’s begin with the telephone quit line.

Linda P. Sarna:

Yes.  One of the… here we’re presenting some data for a study funded by the Centers for Disease Control called Helping Smokers Quit.  What we wanted to do was to translate the evidence-based practice, Tobacco Dependence Treatment Guideline, into the hospital setting so that every smoker who interacted with a nurse was able to get the resources to quit.  Now we know from our studies that, from the research that people will make quit attempts in the hospital, because you can’t smoke anymore, and they may be smoke-free, but when they go home it’s very difficult and they can lapse back into their addiction.  And so, we know that one of the things that needs to happen is that there needs to be some follow-up.  Now with our healthcare situation the way it is, it’s hard for the nurse or the doctor, anyone to give that call, “how are you doing?” However, the telephone quit line 1-800-QUIT-NOW is a free resource for smokers throughout the country.  They can call up the quit line, every single state, they can get print material and they’ll also be able to speak with the trained counselor who will ask them about their history with smoking.  Most smokers have tried to quit before, what they’ve used and explore with them different options.  And we know that the gold standard right now is providing people with counseling and support, and also using some of the FDA approved medications.  So in our study, what we wanted to do, this is the base-line information; we decided to go to three states.  We went to nurses in California, nurses in Indiana and nurses in West Virginia.  Obviously, in California we have the second to the lowest smoking prevalence in the state but still, in LA County alone we have over a million smokers.  West Virginia, Indiana, very high smoking prevalence.  We wanted to see if there was a difference in the culture of interventions by the nurses.  What we found was not surprising.  It was that overall we’ve done much better with asking about tobacco use and very poor about intervening to actually help people quit.  And very, very few nurses actually refer smokers to the quit line.  They don’t know about this resource, and that’s the goal of this research; eventually, is to make sure everyone is aware.

Selma R. Schimmel:

When someone calls the quit line, will the nurse then work with the caller to ensure that they get into the proper physician or program to help if they should need one of these FDA approved drugs to help them through the process, or whatever modality they choose.  Is there that kind of follow-up support?

Linda P. Sarna:

Well, each state operates a little bit differently.  In California, for example, if a smoker calls the quit line, they must initiate the call.  In other states, they can fax a referral to the quit line so that the nurse actually… and the quit line calls the patient.  Many quit lines do have a procedure, a format to give feedback to physicians.  Some quit lines also are able to provide pharmacotherapy, especially for low income or Medicare patients, but not all.  So it is a little different state by state.

Selma R. Schimmel:

If you’re able to overcome the urge, the craving, what’s going on with you physiologically as you eliminate that nicotine from your system and your ability to sustain a smoke-free life?

Linda P. Sarna:

So, let me approach this from a couple of ways.  First of all, the craving, unfortunately, can last for years.  It’s a funny kind of thing because tobacco, nicotine addiction is really a brain disease.  You have receptors in your brain, which we didn’t appreciate until really recently, that when you get that hit from a cigarette it takes about nine to eleven seconds to go directly to your brain and it lights up those nicotine receptors and it feels good.  And when those nicotine receptors don’t get the nicotine, they feel bad and you get the withdrawal.  What happens when you quit smoking is that the nicotine receptors sort of quiet down, they get used to not being fed the nicotine.  If you’re on the nicotine replacement, most of the over-the-counter medicine lasts about three months.

Selma R. Schimmel:

The nicotine replacement, does it stimulate the same brain receptors?

Linda P. Sarna:

Yes, it sort of helps blunt the withdrawal.  It doesn’t get the same high as a cigarette.  Now there are some other medications that don’t replace nicotine but they decrease your desire for smoking.  So they’re, they also influence the brain and you’re just not as interested.  So those are very important medications too.  And generally, people take those a little longer.  They also, usually, need a loading dose until you have a level and then you can start; whereas the nicotine replacement medications, you put out that cigarette and then you start.  And that’s why it’s so important in the hospital because when people go into the hospital, smoker or not, they’re going to be in a force-quit attempt when they’re in an environment where you cannot smoke, inside hospitals.

One thing we know from the surgeon general report though, is that there is no such thing as a safe cigarette and there’s no such thing as a safe level of smoking.  It’s sort of like if you look at just a little bit of heroin, just a little bit of arsenic, it still does many, many damaging things to many parts of your body.  And again, as an oncology nurse we know it’s associated with thirty percent of all cancer deaths.  Thirty-percent.  Not just lung cancer- cervical cancer, leukemias, colon cancer, pancreatic cancer, head and neck cancers, esophageal cancer, bladder cancer… I could go on and people aren’t as aware of all of those other cancers.

Selma R. Schimmel:

When you look at everything that’s out there, what is sort of the pecking order of the easiest cessation product for the consumer?

Linda P. Sarna:

Well, first of all, there is no single best product, it’s the best product for that person.  And many smokers will have had experience with different types of products and they may have, they can be exposed to a variety of these things.  And again, they’re over-the-counter.  The nicotine gum is something that you can do in a social setting.

The nicotine patch is something that is sort of a continuous release over time, people aren’t aware.  For some people they like that hand to mouth, so the inhaler that kind of looks like a cigarette is good.  The lozenge works for other people.  There are lots of choices.

Selma R. Schimmel:

Now I know of some on the oral derivatives that you are able to, and initially still smoke a little bit to begin to wean off but on the over-the-counter ones, I believe, there are warnings that say, ‘do not smoke’.

Linda P. Sarna:

Right, if it says, ‘nicotine replacement’ you need to put out that cigarette.

Selma R. Schimmel:

What happens to the person that will take a drag on a cigarette while they’ve got one of these on?

Linda P. Sarna:

Heart race, blood pressure goes up… you’re getting double nicotine.

Selma R. Schimmel:

Alright, so we talked about the quit line program, what about some of the other ONS-related cessation activities that you’re involved with?

Linda P. Sarna:

Well, another one of our papers at this conference has to do with smoke-free environments.  Now, since the mid-nineteen-nineties hospitals have been smoke free, but not the grounds.  And now we’re seeing a movement across the United States to really make the grounds smoke-free.  Now, the good thing about having any workplace go smoke-free, and the grounds, is it makes it more difficult to smoke, and people quit.  It’s annoying, it’s hard to go outside, downstairs, two blocks down, go into your car and take that cigarette.  Now if you want it you can still do it but the smoke-free environment really enhances quit efforts.  So this is something else that the Oncology Nursing Society, I think, has been very involved in, is looking at tobacco control, not just for all the resources to help smokers quit, but also the smoke-free environment.  And then the advocacy efforts in terms of policy are huge as you may know.  There are some new packaging that’s going to come out with cigarettes.  They’re going to look pretty different next year because they’re going to have ugly pictures of what really happens to your body when you smoke; scary pictures, poignant pictures about loved ones that are affected by smoking.

Selma R. Schimmel:

So, as a take-away message for viewers, say you have a loved one who’s a smoker, say you’re on the fence thinking, ‘you know, I really do need to quit’, what is your take-away message.  Give us again the quit line phone number and also the initial things a person can do to make it easier to really commit to life and health.

Linda P. Sarna:

Healthcare providers really can make a difference here.  1-800-QUIT-NOW is the national quit line, available for free for every smoker in the United States.  Quitting is tough.  It takes several times before you’re able to be smoke-free.  The gold-standard, the most effective way is to both have counseling, social support and also use medications as prescribed by the FDA.  So any smoker who is trying to seriously think about a quit attempt, good for you.  Don’t get discouraged, relapse is part of the quitting process.  Tell your family and friends that you’re quitting, clear out your house of tobacco products, discuss with your healthcare provider, your pharmacist about the different medications to see if that will help with nicotine withdrawal, consider calling the quit line or being involved in others, so a type of social support, know that the moment that you quit you’re going to get immediate health benefits cardiovascular and peripheral vascular disease particularly.

Selma R. Schimmel:

Linda, I failed to mention that you come to us from the UCLA School of Nursing where you are professor and Lulu Wolf Hassenplug Endowed Chair.  So you have really gone to the highest level that an oncology nurse can go to.  You’re both professor and…

Linda P. Sarna:

Well, it’s been my privilege really, to have an impact on the profession, to raise awareness about the issues facing people, patients and family members who are living with lung cancer, and also the power of the individual nurse to make a difference in terms of tobacco control.

Selma R. Schimmel:

Thank you for all the work you’re doing and I hope that the next time we meet you’ll give me really great new stats.

Linda P. Sarna:

Me too.

Selma R. Schimmel:

Okay, great.  Thank you.

Linda P. Sarna:

Thanks a lot.

END OF VIDEO

Rebecca Crane-Okada, PhD, RN, CNS, AOCN
Asst. Professor, Division of Nursing Research and Education
Department of Population Sciences
City of Hope National Medical Center

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 Oncology Nursing Society, eleventh research conference,a nd we’re to continue on our discussion.  We are now joined by Rebecca Crane-Okada.

Rebecca Crane-Okada, PhD, RN, CNS, AOCN, City of Hope National Medical Center

Thank you.

Selma R. Schimmel:

How are you?

Rebecca Crane-Okada:

Good, thank you.

Selma R. Schimmel:

So, what is neurosensory and functional recover?  What does that mean?

Rebecca Crane-Okada:

Well, in technical medical terms we often call them parasthesias and complications as a result of breast cancer treatment.  Neurosensory, in the way I’m defining it and have studied it, is looking at patterns of numbness, tingling, strange sensations in the arm or the breast or the chest after surgery and radiation and chemotherapy and arm swelling as self-reported and measured, which we, by diagnostic terms, would call lymphedema.

Selma R. Schimmel:

Now, in your research it says that the study participants completed questionnaires about their upper arm use, symptoms in the arm, shoulder and chest or breast before surgery, I would imagine?

Rebecca Crane-Okada:

Correct.

Selma R. Schimmel, Founder:

That baseline information is extremely important.

Rebecca Crane-Okada:

It is.

Selma R. Schimmel:

What would be your approach with someone who is newly diagnosed and post-op if you were the one counseling the patient? …for the viewers listening now.

Rebecca Crane-Okada:

Well, I think a lot depends on the actual procedure they’re going to have done.  A woman who’s having breast conservation surgery with a sentinel node biopsy alone is much different from a woman who’s having a mastectomy with reconstruction, and so those instructions for self-care would need to be tailored to the procedure they’re going to have done.  I think it’s critical to do some type of an assessment, that would be my preference, before surgery and that would be an assessment of shoulder movement, finding out if the woman has or man has any limitations of movement and potentially getting a referral to physical or occupational therapy for evaluation before surgery so that any limitations could begin to be addressed before surgery.  After surgery, again, it depends on the practice.  In the practices I’ve worked with with surgeons, we tend to mobilize women earlier than later and there’s a lot of controversy about when to mobilize if one has a drainage tube after surgery.  But I would begin a simple movements in this range right after surgery and simple movements that involve flexibility of the elbow but don’t require full extension of the shoulder.  But the real experts at this are the physical and occupational therapists who see these patients and making sure that people get referrals for a program of rehabilitation after surgery.

Selma R. Schimmel:

Do you think it would be advisable mirroring what you’ve done in your own study with the analysis about evaluating a patient, their upper arm, their chest and breast area, all of that prior to surgery, would there be benefit?  Especially if someone has any kind of pre-existing issues that they share this information or have any kind of extra evaluation as far as their range of motion and mobility even prior to having surgery?

Rebecca Crane-Okada:

Absolutely.  Absolutely, I think people who have any pre-existing problems, if they’ve had shoulder problems with rotator cuff, carpel tunnel problems in their hands, previous trauma and they have any limitations, I think, seeing someone before surgery would be a very good preventative measure.

Selma R. Schimmel:

What are the discussions a woman needs to have with her doctor prior to going into surgery, the key questions she needs to ask prior to having a lymph node dissection?

Rebecca Crane-Okada:

Besides what are you going to do, how are you going to it, in terms of, “What are you removing? What do you expect the potential complications to be right after surgery or long term? And, should I have any problems, who will you be referring me to to help me in that recovery?” And then even before that I would say, “What can I do for myself to recover full function of my arm and shoulder after surgery? After radiation? During treatment?”

Selma R. Schimmel:

Let’s review the warning signs for a patient who is in recovery and begins to note whether she’s got the numbness or tingling or swelling or edema beginning to develop perhaps in her wrist or her hand.

Rebecca Crane-Okada:

I think the first thing I try to tell women and encourage them to do is if they have a new symptom, no matter what it is, to trust their gut and if they feel that it is something new or different for them, and even if they think it’s a silly question, go ahead and make that contact to their provider to find out if this is a normal response or it needs to be evaluated.  A lot of these evaluations cannot be done easily over the phone, the eyes need to see and sometimes we need to do some further physical assessment.  Any sign of swelling, a new onset of swelling should not be ignored and the sooner one gets in for treatment, if it is lymphedema, the sooner that can be stopped or reversed.

Selma R. Schimmel:

What is your ultimate goal with the research because as you gather more information all of this really does impact and can make the direction shift in standard of care?

Rebecca Crane-Okada:

Correct, and I think we were discussing in our recent panel just this morning that we need stronger standards and there are coming out new standards for lymphedema teaching, education of patients and care in referrals in breast centers.  And I would hope that one of the studies that needs to be done is looking at potential immune or inflammatory markers and lymphedema risk and different patterns.  We’re seeing that lymphedema sometimes is episodic and may or may not be related to the actual treatment, but it needs to be diagnosed and treated.  But we still don’t understand why some women or men develop lymphedema and some don’t.  And we don’t understand why some develop it early and some develop it later.  And we don’t understand yet why some… I had one patient who had it just right around the wrist, some develop it in the entire arm, some develop it very localized.  We still don’t understand any of that.

And until we have better evidence I think it just makes common sense to avoid unnecessary trauma.  And the evidence we’re getting now is going to help us understand, with exercise, what that means in terms of safety, repetitive movement, weight lifting, some of those things that we’ve been in the grey zone.

Selma R. Schimmel:

I appreciate what you’re doing because you’re also validating an area of medicine as it relates to breast cancer that may not seem as significant because it isn’t the core of what is life threatening but it really is the core of our ability to function and feel like we have the ability to use our bodies in the way we were meant to use them.

Rebecca Crane-Okada:

Absolutely.  Absolutely.

Selma R. Schimmel:

Thank you, Rebecca Crane-Okada.

Rebecca Crane-Okada:

My pleasure.  Thank you.

Selma R. Schimmel:

Pleasure back.

END OF VIDEO

Ann M. Berger, PhD, RN, CNS, AOCN, FAAN
University of Nebraska Medical Center

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.  We are at the Oncology Nursing Society, eleventh research conference where our discussion continues with senior oncology nurses here that are presenting their research data, talking about areas of interest, as we are doing with you, Ann Berger- professor, Dorothy Hodges-Olsen Endowed Chair in Nursing.  You’re the Director of the PhD Program at the College of Nursing, Advanced Practice Nurse in Oncology at the University of Nebraska Medical Center.

Ann M. Berger, PhD, RN, CNS, AOCN, FAAN, University of Nebraska Medical Center

That’s right.

Selma R. Schimmel:

So let’s talk about what does it mean, those words, ‘cancer related fatigue’, by definition?

Ann M. Berger:

Right.  So, one of the important things to determine when someone talks about fatigue and in the clinics all over the United States today we hope that every patient at every encounter is asked, just like they are with pain, can you rate your fatigue; zero being no fatigue, ten being the worst fatigue you can imagine.  And when someone scores four or higher that indicates to us that there is a need for intervention.  And we can go ahead and ask them then, for example, if they have comorbidities or other illnesses, which they often do.  We determine to make sure, for example that the heart disease or the lung disease is under good control because the fatigue may be coming from those other comorbidities.  But is this a fatigue that is new to you since you were diagnosed with cancer and let’s talk about how it’s playing out.

Selma R. Schimmel:

What about the cancer types?  Do you see cancer related fatigue more dominant with certain cancers related to the treatment that are used for those diseases?

Ann M. Berger:

Well, it’s interesting because most of the research began in cancer related fatigue with women with breast cancer.  Number one, it’s very prevalent and number one, a lot of women have daughters that they’re concerned about someday.  And when you say we want to try to study this so that people that come behind you can have a better experience than you’re having, they tend to sign up for studies.  And so, we really have had the most success in working with women with breast cancer.  But then, you may recall, there was a period of time when women got very aggressive breast cancer treatment, actually bone marrow transplants and they’re not doing that any longer, and we did some studies at that time and found out that just because you got more aggressive treatment did not necessarily equate with higher levels of fatigue.  So there’s factors within the individual in addition to what chemotherapy or what other treatments they might get that seem to play out.

Selma R. Schimmel:

Why don’t we understand more about the root of cancer related fatigue?

Ann M. Berger:

That’s a really good question and actually, there’s many presentations at this conference.  I just came from one that demonstrated that there are genetic alterations, so perhaps there’s things about us from our genetics that make us more likely to have high fatigue versus slow fatigue.  But it’s a very elusive symptom because when a person has cancer, obviously their body is going through lots of changes.  We call it inflammation and we give them treatment and then there’s more inflammation.  And then these cytokines, these cells that are supposed to be on guard for when the body is attacked, they say, “oh, I better go out there and try to figure out what the attack is”.  And so those cytokines cause a general fatigue that kind of masks what might be their true mechanism deeper down.

Selma R. Schimmel:

And also, I would imagine if one is dealing with depression, which can accompany the cancer experience, and that can provoke fatigue, it’s very hard to tell what is the real core source.  Where is this fatigue coming from?

Ann M. Berger:

That’s right, but we do know that almost 100% of people that are depressed talk about that they have fatigue but not all cancer patients with fatigue are depressed.  And one of the first things to do, when I talked about ruling out comorbidities, I talked about heart disease or lung disease, but depression is right up there at the top.  They tend to travel together and so that’s a really important thing to rule out, to seek treatment for.

Selma R. Schimmel:

Let’s talk about what patients need to know going into therapy, how they should communicate their symptoms of fatigue with their doctors and most importantly with their oncology nurses.  Because, while patients tend to think that it’s the doctor that really stays on top of everything that’s going on, I think it’s the oncology nurse that has more time to spend with the patient and begin to put the pieces together and then may be your best advocate in communicating really what’s going on with you to the doctor.

Ann M. Berger:

That’s right.  So let’s start at the beginning, you said what patients need to know at the beginning.  I’ve actually enrolled many women in studies, maybe four-hundred women in studies, and if we approach them before they’ve ever first had chemo and say, “fatigue is going to be a problem that the majority of patients, like ninety-five percent of patients experience it, we have an intervention for you that we would like to get started right away before you start treatment”.  We had a refusal rate maybe twenty, twenty-five percent, “oh, I’m not fatigued. I don’t need your study.”  So I think the part of people understanding that fatigue is something that comes along with the treatment for almost everybody, so that’s an important thing to know.  And the important thing to know too is that we have ways of assessing and trying to intervene right away.  Actually several studies have been published in the last year that shows that when people report a score before they’ve had treatment, so let’s say someone reported a fatigue score of five on that zero-to-ten, that is the strongest predictor of how they’re going to feel like at three months and six months.  So the ones that say one or two, maybe just a little bit of education; the ones that say five, we need to talk about physical activity from the very beginning and not dropping that out of their lifestyle even though they’re getting cancer treatment.

Selma R. Schimmel:

What is the role of one’s hemoglobin when it comes to fatigue?

Ann M. Berger:

Well, there’s also been a lot of research done because of the many products that are used to raise hemoglobin in addition to transfusions.  And actually, the human body is such an interesting specimen, I guess we’ll call it.  We know there is a role and when people reach, what we’ll call it, again, moderate to severe anemia, almost exclusively people report being tired.  But just as in how people can have a variety of hemoglobin levels and it’s not necessarily attached to their feeling of fatigue because it’s such a perception as opposed to a biological measure.  So we would say it’s non-conclusive.

Selma R. Schimmel:

What are the tricks or helpful hints?  I’ve heard frequent, small meals; things like that that we can help our viewers understand if they’re going through cancer treatment, how they can help manage and maybe minimize the feelings of fatigue.

Ann M. Berger:

Well, what we can tell you now at the beginning of twenty-eleven is that as never before we have had many studies now that have come to the conclusion that physical activity and the American Cancer Society and the American College of Sports Medicine published a paper in twenty-ten that said, ‘cancer patients should strive for the same physical activity pattern that healthy Americans should’.  And so, that means depending on their level, up to one-hundred fifty minutes per week is our goal.  So five days a week, thirty minutes.  Now there’s obviously many people that can’t do that but obviously women with breast cancer or early stage breast cancer often can.  And so, whether it would be small bouts of ten or fifteen minutes just working up by week, by week to try to build up that stamina and not to have those long stretches of time like when women get chemotherapy for six or eight months where they’re not active.  So that’s the number one.  And the other one is, depending on the psychological coping, feelings of loss of control, feeling irritable, anxious, depressed… there’s a variety of psycho-social interventions such as yoga is showing a lot of evidence, massage therapy, which many people like, support group, perhaps individual counseling.  But the most important thing is to find the type of psycho-social support that will work for you and then use it throughout treatment.

Selma R. Schimmel:

What about the rule of nutrition?

Ann M. Berger:

Okay, so a lot depends on the type of cancer.  I worked with people, for example, that have had a loss of seventy-five pounds before they’ve come to the doctor, who have maybe had a neck cancer, and nutrition is huge there, isn’t it.  I mean, you just imagine back to doing blood work, you do a lab report and everything about their body is really stressed.  So that becomes number one then, it’s more important than physical activity really, or psycho-social.  But in general, many cancer patients are actually well-nourished if not over-nourished or obese or overweight in today’s society.  And so, in general when you were talking about the important thing is to maintain a diet that is just what we’re all supposed to be striving for, and that would be healthy amounts of calories that are a balance of protein and fats and carbohydrates.  We find that when people are nauseas they tend to eat, like when you always think about getting soda crackers if you’re nauseas, that many people that are nauseas have a variety of carbohydrates all day and don’t have any protein.  They don’t lose weight, so it doesn’t look like they’re malnourished, but actually they’re not giving their body the protein it needs.

Selma R. Schimmel:

Yea, they’re not getting the nutrients.

Ann M. Berger:

At the same time they’re getting treatments that break down the muscle mass of their body.  So they need the protein.

Selma R. Schimmel:

Would you think it would be helpful for patients to keep a journal, also, of sort of be able to make notations of when they feel their fatigue peaks or any factors that would help you as an oncology nurse, not only in the research setting but when your patients come to the office that they could report to the nurse?

Ann M. Berger:

So, we’ve actually instituted something like that at the University of Nebraska.  We call it their diary and it’s a little card that they can open up that has the month and then they can fold it back up and put it in their wallet.  They can just write down a fatigue score, like in general my fatigue today was four or six or one.  But, even through the National Comprehensive Cancer Network I’m the team captain for cancer related fatigue and we really don’t want people to think about the fatigue every day if they don’t have to.  So kind of journaling and putting down the daily score… it might be good to just say, “I think about it in terms of a week and if I haven’t even thought about it for a day or two or three, that’s good.”  And then the other part about that, journaling is one of the psycho-social interventions, so many people feel that’s helpful, other people just don’t seem to benefit from it.

Selma R. Schimmel:

So, in closing, in today’s research compared to where we started out in this understanding of cancer related fatigue, what is the current research?  How are you conducting it as far as the changes to get better in understanding and enhance your knowledge?

Ann M. Berger:

Okay, so a real good take home message to everybody is, now we know physical activity probably works, we know that psycho-social interventions work, nutrition is a third major area, my major area is how to enhance sleep and sleep/wake/activity/rest.  So there’s all areas are being pursued but we don’t know- what works, -with whom, like what kind of cancer, what kind of treatment, -at what time, early in the treatment or wait till there’s a survivor, -and kind of, at what cost.  We’ve done a lot of research trying to deliver the Cadillac model but if we’re going to have so many cancer patients, we’re up to twelve-million survivors, we’ve got to come up with some cost effective interventions that are fairly efficient, too. That would involve three-to-five visits maybe, as opposed to twelve visits for some type of therapy.

Selma R. Schimmel:

Given your academic accomplishments, there were many areas of oncology that you could have invested in and as a survivor, thank you for taking the issue of cancer related fatigue on.

Ann M. Berger:

Thank you.  My mother passed away of cancer and that was a symptom that she had that I wanted to do something about.

Selma R. Schimmel:

You see, there’s always a private story.

Ann M. Berger:

That’s right.

Selma R. Schimmel:

And what motivates us and allows us to take a painful experience and make it better and hopefully make a difference for other people.

Ann M. Berger:

That’s right.

Selma R. Schimmel:

Thank you,

Ann M. Berger:

You bet.

Selma R. Schimmel:

Ann Berger.

END OF VIDEO

]]> http://thegrouproom.tv/what-we-continue-to-learn-about-cancer-related-fatigue-crf/2011/03/31/feed/ 0 http://thegrouproom.tv/the-dynamic-and-important-role-of-oncology-nurse-researchers/2011/03/31/ http://thegrouproom.tv/the-dynamic-and-important-role-of-oncology-nurse-researchers/2011/03/31/#comments Thu, 31 Mar 2011 04:43:27 +0000 thegrouproom http://thegrouproom.tv/?p=534

Kathleen Mooney, RN, PhD, FAAN
College of Nursing, University of Utah, Salt Lake City, UT

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 Oncology Nursing Society, eleventh research conference, and our discussion continues.  We are joined now by Kathy Mooney, an Oncology Nurse, Professor and Lewis S. Perry and Janet B. Peery Presidential Endowed Chair in Nursing at the College of Nursing at the University of Utah.  Hello.

Kathleen Mooney, RN, PhD, FAAN, College of Nursing, University of Utah

Hello.

Selma R. Schimmel:

Welcome to a change in climate.

Kathleen Mooney:

Oh, I’m enjoying it.

Selma R. Schimmel:

But, you know, we’ve been speaking with your colleagues throughout this meeting and we’ve been highlighting some of the very important areas of research that are being presented at this meeting and what is going to be interesting now with you is to really talk about the field of research amongst oncology nurses, also in the hopes that we can stimulate some of our viewers to consider nursing as a career because most all of you that I have spoken with today hold a PhD in nursing and a PhD allows you to emerge into some very dynamic areas of research and science.

Kathleen Mooney:

It is exciting.  I’ve had a long career and one of the great things in choosing this career is there are so many things you can do.  It’s meaningful work, it’s important work and one of them is to consider being a nurse scientist.

Selma R. Schimmel:

What does that mean?  How is a nurse scientist different from what people perceive a general nurse is?

Kathleen Mooney:

A nurse scientist takes some of the clinical problems that you see with patients in cancer – they’re fatigue, their nausea, whether they’re afraid to get screening, their fears about having cancer because their family member had cancer – and then really gets a chance to study it, to try to figure out how do we help people.  A clinical nurse taking care of our patients in that moment in time makes a difference in their lives, helps them through the day, helps them go home, helps them deal with their cancer, and a nurse scientist takes those very problems that patient is experiencing and says, ‘how can we impact that overall for all patients who are coming in’.

Selma R. Schimmel:

Do you have… outside of the clinical research setting, do you have contact with patients or are nurse scientists really working more behind the scenes with some patient interaction but mostly very scientific focus?

Kathleen Mooney:

The best way is to be partnered with people in clinical practice so that you hear the relevant problems that they see patients are facing and then you do go back and work on what are ways to approach, what are novel ways, what are new ways to address those problems and come up with more powerful interventions to help them with their problems.  So, do we spend time day-to-day in the infusion center or on the clinical unit? Not as much, except when we’re over recruiting patients and then you have a very intense one-on-one while you’re collecting data with them.

Selma R. Schimmel:

You gave a talk.  Your presentation really outlines effective program formulation in developing the study nurse research programs to really improve both the role and advance the goals of nurse scientists.  What are your key talking points to oncology nurses?

Kathleen Mooney:

Well, that talk was centered on challenging nurse researchers to come up with really the cutting edge questions to ask and how to reformulate a problem that we’ve been studying over time and we’re making little progress but we really haven’t come up with effective new ways of addressing the problem; one example would be cancer related fatigue.  We know that exercise helps; it helps some people, it helps somewhat, but cancer patients are still fatigued.  So, how do we reformulate our questions we ask so that we develop a better understanding of the mechanisms and their [INAUDIBLE] and can come up with better interventions that really do improve people’s energy.

Selma R. Schimmel:

So, how does an oncology nurse researcher or scientist interface and work side-by-side with a, let’s say, physician researcher or scientist?

Kathleen Mooney:

One of the ways is that as a physician is looking – at the treatment of cancer, looking for curing cancer, looking for a new approach in chemotherapy, radiation, biotherapy, targeted therapies – is for the nurse scientist to say, ‘how does this impact a patient? What kind of side effects do they have? What do they have to deal with in order to stay compliant and participate in treatment?’  And so, companion studies, as you would say, that look at quality of life, look at side effects, are the kinds of contributions that a nurse scientist makes to an overall team trying to improve cancer care.

Selma R. Schimmel:

Well, obviously we are dealing with difficult economic times, limited federal budgets… How do we assure that there is funding available and how do we also inspire the private sector to contribute support to such science and research?

Kathleen Mooney:

Well, you bring up a really concerning problem, from my perspective.  Right now, with the economic status in the country, the congressional call to trim budgets; one of the budgets that is currently proposed for trimming is the National Institute of Health’s budget, of which cancer funding comes up.  We don’t know how it will turn out but a current proposal has cutting out a million dollars or a billion dollars, excuse me, a billion dollars this year out of that budget.  And that’s where research funding comes from cancer so we are at a crossroads of challenge to, ‘how do we keep funding going?’ and funding is competitive.  You have to have the cutting edge science.  That’s another one of the points in the talk that I made today is, we really have to come up with the compelling questions for which we want to invest in, and that is of concern.  Nurses have to work to get the message out that the science that they are pursuing is valuable and important, just as trying a new drug trial to slow down cancer growth, finding a treatment for the symptoms related to that that improve quality of life is important.  I like to say that the life you save has to be worth living.  And the nurse scientist comes in and tries to work in tandem to help that life be very valuable.

Selma R. Schimmel:

What do you think that patients need to understand, not only about the role of the oncology nurse, but what can we do as patients and consumers, medical consumers, to really help support the nurse scientist/researcher agenda?  What can we do at large to support your efforts?

Kathleen Mooney:

Well, I think patients, family members, the public has to say the research is valuable, that the experience of being a family member with people dealing with cancer, that research that focuses on symptom improvement, quality of life, is essential.

Selma R. Schimmel:

So, that said, if you could give, a retrospective overview of what do you think were some of the benchmark, most important, key studies that you know that oncology nurses have made a real impression with?

Kathleen Mooney:

Oncology nurses were early in the attention to symptoms.  Now that goes way back a number of years, a study that showed that fatigue was the most important symptom associated with radiation.  Radiation oncologists didn’t even believe patients had fatigue and when you’d talk to them about it they’d say, ‘well, what do you mean by radiation fatigue?’  And so, just surfacing that symptoms were a tremendous issue for patients to deal with has been a contribution really started by nursing.

Selma R. Schimmel:

And I imagine that when you look at the different nursing specialties across disease types, oncology probably represents one of the most vital and expansive areas where nurse scientists and researchers have been able to make a big difference.

Kathleen Mooney:

I’m proud to say that I think oncology nursing has the best nurse scientists, has made the greatest impact, has kind of shown the way for other specialties on how to pursue that.  Even the Oncology Nursing Society, the foundation, and their seeding of pilot funds has been really remarkable and a leader in nursing in the specialty community.

Selma R. Schimmel:

I’m smiling because I think about going back many, many generations prior to us, how proud Florence Nightingale would have been to see the days when she could recognize like the importance of just having a sterile environment to today.

Kathleen Mooney:

She was the first nurse scientist, you know.  And she was the first statistician and she observed.  She observed and she was shot down many times by the medical community and she pursued by force of her personality.

Selma R. Schimmel:

I’m glad we brought her into this conversation because it’s even emotional, really, I think, as I’m not a nurse.  But when you think about, also, how you’ve all broken through the glass ceiling, and also people perceive nurses in one way and now you see men that are nurses and nurses are really dominating a profession and reshaping it and molding it in ways that will not only impact oncology, but will affect all of the other nursing disciplines, too.  So, thank you so much.

Kathleen Mooney:

Thank you for having me.

Selma R. Schimmel:

Kathy Mooney, from the University of Utah, the College of Nursing.

END OF VIDEO

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