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5 Afternoon Breakout Sessions with Invited Speakers
Pages 97-167

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From page 97...
... Our first speaker is Steve Woolf, a member of our committee who is a primary care physician in Virginia. Steven Woolf, Virginia Commonwealth University I am a family physician in the Department of Family Medicine at Virginia Commonwealth University.
From page 98...
... In the management of coronary artery disease, primary care physicians and cardiologists work together regularly in well-coordinated systems. There are lots of exceptions, and I
From page 99...
... The primary care provider's responsibility is to deal not just with the specific condition, but the totality of conditions, both physical and emotional that the patient is facing. In the context of cancer survivorship it is not just taking care of their cancer needs, and the late effects, and other consequences of their cancer treatment.
From page 100...
... The details of how primary care physicians partner with specialists to manage other conditions are probably too elaborate to go into in just a few minutes. Infrastructure and good models do exist for other conditions, though.
From page 101...
... Dr. Noreen Aziz, National Cancer Institute, Office of Cancer Survivorship: Thank you for an excellent presentation.
From page 102...
... , or exertional chest pain from their angina, most primary care physicians are pretty clear when it is time to engage the cardiologist, and when it is time to pick up the phone and make a call. In the case of cancer survivorship, there is a lack of guidelines.
From page 103...
... Finally, we plan to serve as a model for other survivorship programs in the country. Our program is an adult cancer survivorship program, with a focus on clinical care, research, and education.
From page 104...
... We are using this model with testicular cancer survivors and survivors of childhood cancers. With such a large population of cancer survivors at our institution, we discovered that we cannot see everyone in the clinic.
From page 105...
... Personnel-wise this can be very expensive, and we do not have designated oncologists who are going to practice exclusively with cancer survivors. Instead we have collaborative practices at Penn that are oncology and nurse practitioner partnerships.
From page 106...
... We have had patients come to us, for example some testicular cancer survivors, who say that their oncologists discharged them from care. They have not seen an oncologist in two years.
From page 107...
... I have a question about your consultative model and its potential for expansion. In the future, how do you see the communication with the oncologists who are continuing to see these patients, but also with the primary care physicians?
From page 108...
... I am speaking in the place of Craig Earle, the medical director of the Lance Armstrong Foundation Clinic for Adult Cancer Survivors, who could not make it today. In the spirit of full disclosure I am a pediatric oncologist and run our pediatric survivor program, but I will try to do justice to the adult survivor program.
From page 109...
... We have two nurse practitioners who provide a written treatment summary to patients, a comprehensive overview of their expectations, and risk-based recommendations. We have conceptualized survivor care as unique and decided to provide our clinical care separate from acute care.
From page 110...
... As Dr. Woolf mentioned earlier, oncologists may think that primary care providers do not really know how to take care of cancer survivors.
From page 111...
... Because we are a center where new clinical trials are often being developed, I think it is important to understand the late effects of those clinical trials, and using what we understand about late effects to develop new clinical trials. That is where we see ourselves.
From page 112...
... Kym Martin, National Coalition for Cancer Survivorship: I am a 22-year Hodgkin's survivor. Dana-Farber was one of my stops along the way.
From page 113...
... I am going to present to you today a program of research that I have conducted over the past 15 or so years that attempts to test the basic hypothesis that the family physician can provide routine follow-up care to breast cancer patients, which is equivalent to specialist follow-up care. It is a pretty provocative hypothesis.
From page 114...
... We included medical oncologists, radiation oncologists, and surgeons who are major players in the follow-up care of breast cancer patients. We asked them mirror image questions about what they considered to be important about follow-up, and the results of those two surveys were very revealing.
From page 115...
... That is important, because in that interval the majority of recurrences will be diagnosed. We had almost 1,000 patients in the study, and they were randomized to receive follow-up with a primary care physician or a specialist.
From page 116...
... Therefore, we defined as primary outcome any one of a series of serious clinical events, which were pathological fracture, spinal cord compressions, hypercalcemia, and uncontrolled local recurrence. For patients who did not develop recurrence, we identified the fact that quality of life was the most important outcome.
From page 117...
... In terms of primary care physicians, 83 percent of family physicians agreed to provide follow-up care to their patients with breast cancer. Our conclusion from these studies is, first of all, that primary care follow-up of breast cancer patients is a safe and acceptable alternative.
From page 118...
... Next, Rodger Winn from the National Quality Forum will discuss quality indicators and their relationship to guidelines and quality improvement. We will wrap up with LuAnn Wilkerson from UCLA, who will describe a new model for educating medical students about cancer survivorship.
From page 119...
... The most mature data on late effects come from clinical trials conducted 20 to 25 years ago. The techniques and treatments in these trials differ greatly from treatments we use today.
From page 120...
... The ASCO guidelines effort is focused on four areas: cardiovascular late effects; neurocognitive and psychosocial late effects; endocrine disorders; and second cancers. The task force felt that these four areas cover most of the problems of cancer survivors, irrespective of cancer site.
From page 121...
... I think it is time now for adult survivorship guidelines to summarize the state-of-the-art of what we know and what we do not know in 2005. That will set the stage for future directions in survivorship research.
From page 122...
... I think that there are certainly instances of cancer-specific exposures that merit awareness, such as chemotherapy-induced menopause, androgen deprivation in prostate cancer survivors, and second cancers specific to exposure late effects. I would not be surprised if we come up with some overarching general principles applicable to all cancer survivors, and then specifically focus on the exposures or specific cancers that are related to the late effects.
From page 123...
... The main problem we have in providing survivorship care is the lack of familiarity and lack of comfort by providers, particularly community providers, in accepting these patients who move into their busy practices. Among pediatric oncology providers, the buzz words, when seeing cancer patients for long-term follow-up, is that they deserve "risk-based" care.
From page 124...
... After the childhood cancer survivorship report that came from the Institute of Medicine (IOM, 2003) a few years ago, the COG undertook a huge initiative to organize survivorship guidelines.
From page 125...
... It has not only their specific late effects, it has a problem list that is system-based, and then it has the recommendations for screening, along with our special concerns, whether it is increased risk of heart disease, infertility, et cetera. However,
From page 126...
... Rodger Winn from the National Quality Forum. Rodger Winn, National Quality Forum I would like to start by examining where we stand vis-à-vis a measure set that could realistically assess the quality of survivorship care.
From page 127...
... Efficiency -- a lot of what we look at in this area are measures of overutilization. An example of this might be, "Does your stage I breast cancer patient still get a bone scan and a liver scan?
From page 128...
... Did you have clinical practice guidelines in place? A process measure might be, "Were the guidelines implemented in your system?
From page 129...
... In the context of the primary care and oncology shared care models, we need to decide who would be responsible for follow-up care and how to make these decisions. Finally, we will have to risk adjust some of the measures to make sure that when you report these you are comparing providers taking into account the risk profiles of their patients, in other words comparing apples to apples.
From page 130...
... We are funded by the National Cancer Institute on an R25 grant to begin to develop educational tools for cancer survivorship. We invite you to help us
From page 131...
... This web site will also serve as a dissemination point for the video on cancer survivorship that was produced by the IOM committee. It is of wonderful quality, and has raised a lot of interest in the last few days at the Association of American Medical Colleges' (AAMC's)
From page 132...
... Considers general preventative issues as well as those related to cancer survivorship in cancer survivors Knowledge 1. Understands that all cancer survivors are at increased risk for other cancers as well as recurrence of the original cancer, and need to avoid tobacco, eat right, and use sunscreen 2.
From page 133...
... screening for colon cancer risks; (2) counseling for smoking cessation; (3)
From page 134...
... They discuss more broadly the limitations of the literature. For example, for the guideline about breast cancer surveillance in young women who have had chest radiation therapy, our guideline is comparable to the guidelines for other high-risk populations, such as the BRCApositive populations.
From page 135...
... What I related to most in the IOM report was Chapter 4, where it talks about delivering survivorship care. There is a whole section in that chapter about survivorship services in the community, where in fact most people with cancer are.
From page 136...
... This is funded by the Lance Armstrong Foundation. The LAF has gotten a lot of thanks today, and we extend our thanks to them as well.
From page 137...
... The cornerstones of our educational programs on survivorship are the Annual Cancer Survivorship Series, which is done in collaboration with the National Cancer Institute, the Office of Cancer Survivorship, the NCCS, and the LAF. This past spring we offered three of these programs.
From page 138...
... Diane, thanks for your presentation. As a long-time practitioner in the world of cancer survivorship, it is really a pleasure to hear you talk about CancerCare.
From page 139...
... Dr. Golant: At The Wellness Community we have done randomized clinical trials through the California Breast Cancer Research Program in order to look at the effectiveness of our programs.
From page 140...
... We have a number of relevant publications through our Health Promotions Department. They are not necessarily generated on a schedule or in response to certain time frames as would be the case with our guideline development, but these are focused on what we are hearing from cancer survivors as important issues.
From page 141...
... We also provide options for patients and survivors to communicate. We have had the Cancer Survivors Network online for some time.
From page 142...
... The program evaluation process is being formalized and built in as a combination of work from several different departments. Our Behavioral Research Center is in the process of hiring people who are used to doing program evaluation, our Health Promotions Department is coming up with ideas of ways that they would like to have more targeted interventions, and our Cancer Control Science Department is hoping to supply a non-stop service of information about the science.
From page 143...
... The CDC's role is to provide support for building an infrastructure for states, tribes and territories to form coalitions, to give guidance in comprehensive cancer control planning, and to assist coalitions in sharing approaches and strategies. Comprehensive cancer control plans are one outcome of these coalitions.
From page 144...
... More information about the CDC's Comprehensive Cancer Control Programs is available at our web site and through recent publications (Pollack et al., 2005; CDC, 2005a; 2005a,b)
From page 145...
... I am a principle investigator on a grant from the National Cancer Institute that is following a cohort of about 1,800 cancer survivors, looking particularly at the economic consequences of cancer survival. In our cohort, which is from a relatively high socioeconomic status, our focus has been not so much on insurance as it has been on employment.
From page 146...
... As we were reviewing what is known about employment and cancer survivorship, we wanted to bring out both the good news and the bad news. We wanted to emphasize that most cancer survivors continue working and remain productive after their treatment.
From page 147...
... We tried to point this out in our report. In this sense, while cancer survivors need healthcare financing reform and universal coverage or universal access to health insurance, I think perhaps that universal coverage and universal access may benefit from the political smarts and the political power of cancer survivors too.
From page 148...
... There are something like 1.6 million cancer survivors who are at risk for lymphedema, and when you consider that it is not being covered, that is a terrible situation. I urge you to consider setting up non-profit or lobbying organizations to do some grassroots work in getting legislation in the various states for insurance, and in the government for Medicare.
From page 149...
... Chapter 7 of the IOM report was entitled "Research," and in the last few pages the overall findings and recommendations were summarized. The section began, "Research is especially needed to improve understanding of mechanisms of late effects experienced by cancer survivors, how to identify and intervene to alleviate symptoms and improve function, and the prevalence and risk of late effects." Today I am going to focus on the first and third items, which relate to mechanisms and risks.
From page 150...
... is well established that radiation and chemotherapy are associated with late effects, however, numerous other factors can contribute to the development of late effects (Figure 5-3)
From page 151...
... As a foundation for future research in one area of cancer survivorship, the National Cancer Institute held a workshop last November on genetic susceptibility and second primary cancers. Over the last few decades, the number of second cancers has steadily increased.
From page 152...
... We also have a workshop on clinical trials for the community oncology team, which is in its second year. It is important that the community oncologist be involved, because a lot of survivorship research will need to be done in the community.
From page 153...
... I think this is extremely important as we think about both the therapy that we are delivering now, and how therapy may be changing by early assessment with biomarkers, imaging or both. Changes in therapies may translate into changes in late effects.
From page 154...
... The most significant of these being to grow, support, and shepherd the survivorship research arena. I want to also thank my predecessor and founder of the position as the director of the Office of Cancer Survivorship, Anna Meadows, for saying that despite being included as the last chapter in the report, it is all about the research.
From page 155...
... That is about the right portfolio mix, as we would like to see 40-50 percent at any given time. We know new treatments are going to have new late effects.
From page 156...
... Interestingly, we are seeing some of our cancer survivor population demanding and getting what we do not even provide for many individuals who do not have cancer, and that is preventive health, health promotion, and disease prevention. We do not have that as a standard model of care.
From page 157...
... We have cancer survivors in leadership positions (e.g., NCI, ASCO) , which is incredibly empowering.
From page 158...
... · Identification of evaluation metrics to assess our "success" in improving the health and care of cancer survivors and their families community, and as more people experience cancer as a chronic illness, caregivers and family members are going to be a key element in sustaining, supporting, providing interventions to, and altering outcomes for survivors. As a consequence they need to be a population that is targeted for research.
From page 159...
... Are cancer centers using them as delivery platforms for promoting cancer survivorship research or care? Does the research say how survivorship care should be delivered?
From page 160...
... We know that randomized clinical trials are feasible. They do change practice, and as evidence for this I cite the two Italian trials of breast cancer patient followup that were published over a decade ago (GIVIO, 1994)
From page 161...
... As I said, there have been a few adequately powered randomized clinical trials of cancer patient follow-up. The two breast cancer trials were done by Italian researchers.
From page 162...
... Making these investments in research is working towards a highly attainable and very obvious goal. It involves billions of dollars, because cancer patient follow-up testing, counseling, and administration of corrective actions is very expensive.
From page 163...
... It has been an uphill battle keeping it on the table as we vied for funds with the basic scientists. Frank, I would like to comment on your issue about the payback on clinical trials, on the cost of doing the clinical trials, and whether we actually see a cost savings from the results of those clinical trials.
From page 164...
... That is often the norm here, rather than a relationship that has been established. We would not even have a primary care physician (PCP)
From page 165...
... I was advised to check off the trials for which we could discontinue follow-up in five years. I do think we are missing opportunities to think about economies of scale in coordinating survivorship research with ongoing clinical trials intervention.
From page 166...
... It is possible to include basic scientists in our research, because we have ongoing a large international study of survivors of Hodgkin's, breast cancer, or testicular cancer. We are looking at second cancer risk in these patients, and have the basic scientists helping us in this new field of molecular epidemiology.
From page 167...
... There is a feeling that this is going to impact our understanding of how individuals handle different drugs. Cancer chemotherapeutic agents are going to be lead candidates for study.


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