6
Reports from Breakout Session

Dr. Greenfield: We are going to start with the reports from the breakout groups. I and the other moderators will briefly summarize what happened during their sessions.

IMPLEMENTING THE CANCER SURVIVORSHIP CARE PLAN AND COORDINATING CARE

Moderator: Sheldon Greenfield, University of California, Irvine

There were four speakers during our breakout session. Deborah Schrag talked about developing a strategy for putting the survivorship care plan together, favoring in her case that it be completed by the oncologist for other doctors, not necessarily for the patient, at least at first. She proposed key elements of treatment to be included. She emphasized the need to streamline the burden of documentation amongst patients, oncologists, and other care providers. There were some critical questions asked from the floor such as who is the plan actually written for? Is it for the doctors? Is it for the patients? Should it be in the language that primary care doctors can interpret? What are we going to do about legal issues? Such issues may be raised if something is proposed that other doctors disagree with, or if a patient does not get what is recommended and they go to court. Another issue relates to timing. Not everybody wants the care plan at the same time. And what happens if patients do not pay any attention. The provider gives them the plan, and they do not seek recommended care.



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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium 6 Reports from Breakout Session Dr. Greenfield: We are going to start with the reports from the breakout groups. I and the other moderators will briefly summarize what happened during their sessions. IMPLEMENTING THE CANCER SURVIVORSHIP CARE PLAN AND COORDINATING CARE Moderator: Sheldon Greenfield, University of California, Irvine There were four speakers during our breakout session. Deborah Schrag talked about developing a strategy for putting the survivorship care plan together, favoring in her case that it be completed by the oncologist for other doctors, not necessarily for the patient, at least at first. She proposed key elements of treatment to be included. She emphasized the need to streamline the burden of documentation amongst patients, oncologists, and other care providers. There were some critical questions asked from the floor such as who is the plan actually written for? Is it for the doctors? Is it for the patients? Should it be in the language that primary care doctors can interpret? What are we going to do about legal issues? Such issues may be raised if something is proposed that other doctors disagree with, or if a patient does not get what is recommended and they go to court. Another issue relates to timing. Not everybody wants the care plan at the same time. And what happens if patients do not pay any attention. The provider gives them the plan, and they do not seek recommended care.

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium Peter Bach talked about the CMS Oncology Demonstration Project, and said that in this next year they will be asking oncologists to submit information on three things. One is explaining the primary purpose of the visit. Good luck on that. You can always make up something, so I guess it is not that hard. Second, whether they are following evidence-based practice guidelines. Good luck on that one too. And number three, clarifying the patient disease status according to specifications. Phyllis Torda talked about the NCQA quality initiatives and noted that the survivorship care plan could be incorporated into several of their initiatives such as efforts to identify high risk patients and ASCO’s Quality Oncology Practice Initiative. A question asked for all the panelists was, “Who is going to be responsible for implementing the plan?” Finally, Doug Ulman discussed empowering the patient with information and education, providing electronic records, and coordinating the care infrastructure. During this session, the role that nurses may be able to play in the delivery of the care plans was emphasized. And that was pretty much it for this session. BUILDING BRIDGES BETWEEN ONCOLOGY AND PRIMARY CARE PROVIDERS Moderator: Steven Wolff, Virginia Commonwealth University Reported by: Regina Benjamin, Bayou La Batre Rural Health Clinic Kevin Oeffinger began our session by giving us a nice overview of the rationale for the shared care model. Pat Legant then talked about clear communication, how important it was, and the fluidity of specialty versus primary care roles, and how responsibility goes back and forth from one provider to the other, and waxes and wanes over time. Importantly, the patient has to be part of that care team. Ann Partridge discussed the fragmented nature of the healthcare system. She pointed out that we need a clear, direct definition of who is going to do what, and in what setting. Dr Partridge also discussed some of the psychosocial concerns of cancer survivors. Then I talked about how important it is, as is highlighted in the IOM report, that awareness be raised of the needs of the cancer survivors. Speaking as a primary care physician, it is often the case that cancer patients lose touch with me as their provider. I will diagnose a patient with cancer, for example, and send them to a surgeon, and the surgeon will take care of them. Then the surgeon calls the oncologist, and I am left out of the loop and lose the patient over time. It may be a year or two before I get that patient back unless the family calls and says, “You know what those surgeons want to do?” Primary care physicians need not get left out of that

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium loop in the early stages of cancer care. The cancer survivorship care plan as well as the clinical guidelines could really help primary care physicians treat their cancer patients a lot better. When available, they will be great tools. During our discussion, members of the audience talked about case management and how the burden of the decision regarding management is often handled by the family. Family members may be put in that position, but this gatekeeper role may, or may not, be appropriate. Sometimes patient loyalty steps in. A patient may feel guilty for going to get another opinion, or going to another physician. And we need to keep these responses in mind when we are building any kind of model. We also discussed communication issues and the need for both professional education and training and guidelines to improve knowledge of survivorship amongst physicians. Ultimately, we need relevant care available at the time people need it, and when they need it. The shared care model was discussed and I would like to say that in family medicine particularly, and most of primary care, we have used that model for a long time, but we just haven’t called it shared care. When I have a patient that has a heart attack, I send him to a cardiologist. He is not the cardiologist’s patient, and I do not lose my patient. We both treat that patient. If the patient subsequently has chest pain or has other symptoms in a year, I send the patient back to the cardiologist. So, the shared care model exists, we just need to use it a lot more. And in the research arena, we really should be looking at the intersection of primary care and oncology care. In summary, as oncologists and as primary care physicians we have to provide better care and support for our patients. Oncologists can not do it alone, and primary care physicians can not do it alone. And we owe it to our patients to improve communications and our care. Dr. Greenfield: Thank you, Regina. And thank you again for leaving your busy practice to join us today. Dr. Ganz, will you discuss your first breakout session on testing models of survivorship care? DEVELOPING AND TESTING MODELS OF SURVIVORSHIP CARE Moderator: Patricia Ganz, University of California, Los Angeles During our session, Steven Woolf discussed the shared care model, and Regina Benjamin did a very nice job covering that topic, so I will not spend more time on that. We had presentations from Linda Jacobs, who is the director of the Living Well After Cancer Program at the University of Pennsylvania Abramson Cancer Center. This program was established about five years ago so it is the oldest contemporary cancer survivor clinic. Several different strategies for incorporating survivorship care into patient

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium care were pilot tested at their cancer center. They have identified two models that seem to work best. One is a practice model where survivors are followed on a regular basis in their clinic. This approach has been used primarily with the adult survivors of childhood cancer who transition into their care from the children’s hospital. This model of care is also used with their testicular cancer patients, who after two years of routine follow-up with their oncologist then come in for regular follow-up in the survivorship program. For other types of cancer, cancer center treating oncologists tend to want to continue to follow their patients, and the survivorship clinic staff have developed a team approach. Here survivorship clinic nurse practitioners and oncologists collect data and may see patients as they are being seen in their treating oncologists’ practice, and are also available to see patients for a consultation, education, and information. The survivorship clinic has had to be flexible in terms of the environment in which they are working. These cancer center oncologists seem to be motivated to follow their patients in continuity. There was an interesting question about how much would it cost if I referred somebody, or if I wanted to be seen at the survivorship clinic. Linda had difficulty describing what that fee would be. Essentially, those visits are billed as if they were regular oncology visits for a new consultation, or for a follow-up visit for surveillance. The program is actively engaged in research. Lisa Diller described the survivorship program at the Dana-Farber Cancer Institute, filling in for Craig Earle, who opened this clinic for adult survivors last February. They have a nurse practitioner-type model in terms of the delivery of care and have had to adapt to the environment of a comprehensive cancer center. They are focusing on clinical care, research and programs, and developing education and support programs for patients. They have also been able to identify subspecialists who are interested in survivorship in each of the disease-oriented disciplines. And as was the case at the University of Pennsylvania, this program has taken a flexible approach, adapting their practices depending on the targeted disease and the local practice patterns. Lisa did mention that there are survivors who call Dana-Farber who have not had any long-term follow-up, or may have relocated to the Boston area and want to be followed. Some of these individuals are being referred de novo into their survivorship clinic. Lisa mentioned that they initially had four patients the first month they were open, and last month had 75 visits. Their program is accelerating, and they are doing some process evaluations. They have a lot of philanthropic support, and this is part of the institutional strategic plan, so this obviously helped them in terms of getting their program going. Eva Grunfeld gave us a very nice presentation describing several randomized trials that she has conducted over a series of years, both in the U.K. and in Canada, really looking at perceptions and needs of care as

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium expressed by survivors themselves, survivors of breast cancer, and also primary care physicians and specialists. She showed the nice statistic: that about 69 percent of the primary care physicians wanted to follow the survivors, and thought they could do it; and 70 percent of the oncology specialists thought that they could follow the breast cancer survivors. So, you can see that there is a lack of equipoise here. She was able to randomize patients and did a number of trials looking at survivorship care. The most recent one in Canada randomized nearly 1,000 patients to either follow-up by specialists or primary care. Dr. Grunfeld showed that there was equivalency in terms of the outcomes, in terms of serious events, a very low event rate, 3.5 percent of individuals having severe complications at follow-up to about four or five years, and good quality of life in both groups. And this was facilitated by a one-page guideline that was given to the primary care physician, saying this is what needs to be done. Clearly, more research needs to be done in this area. We did not have a lot of time, but we did have some discussion. There were a number of survivors in the audience who really felt patient-survivor involvement in these clinical programs would be very important in terms of informing them as to what would be best. Dr. Greenfield: Thanks very much. I just want to add one note to that, which is to reiterate what Eva Grunfeld and others have said in the context of cancer and other diseases as well. One of the tricks between the primary care doctors and the subspecialists is to decide what is commoditizable. That is, what is surveillance that they can do perfectly well, versus things that need highly specialized knowledge with a lot of experience. People conflate the two, and assume on the one hand, that only I can do that, because I have all this knowledge. Well, that is where the issues lie, and that is why your clinical trials have been so successful. You are not asking the primary care doctor to be an oncologist. That is not what they are. Rodger, will you summarize the guidelines and education session? DEVELOPING GUIDELINES, INSTITUTING QUALITY IMPROVEMENT, AND STRENGTHENING PROFESSIONAL EDUCATION PROGRAMS Moderator: John Ayanian, Harvard Medical School Reported by: Rodger Winn, National Quality Forum Our session was oriented towards the areas of education, guidelines, and measures. We looked at programs that were getting off the ground as examples of directions that we might go. LuAnn Wilkerson from UCLA presented information on the survivorship education program that has been

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium initiated at the medical school. It is supported through an R25 grant from the NCI. In principle, the earlier you can educate students, the more you are likely to imprint it on their mind and have them carry it forward. So, rather than try to get the gray-haired oncologists to learn what survivorship is, they have gone to the medical school students who are about to graduate, and put survivorship in their curriculum in an effort to educate them on all of the aspects of survivorship. They are taking a very scientific approach to the development of this curriculum. They have 17 experts coming in to inform the content, and they have catalogued many survivorship issues. They are then trying to prioritize what they will teach. They are pulling in the full range and array of educational tools at this point, including video-taped interviews with patients that can then be rated, and tests that go along with it. I think that this is an approach that, if it spread, would really take survivorship and teach the next generation of professionals how this should go forward. The next two presentations had to do with clinical practice guidelines. Melissa Hudson from St. Jude Children’s Research Hospital talked about the long-term follow-up guidelines for pediatric cancer. Obviously, there are some advantages there: smaller numbers of patients who are somewhat homogeneous; a fair number of diseases; but most importantly, a commitment of the treating and research establishment to follow these patients long-term, and to look at what are the long-term effects. What was interesting to me as a guideline person is that one of the things that is often overlooked, is that there is more to guidelines than presenting evidence for various clinical practices. There is a whole other dimension to guidelines. Which is that guidelines are there to guide clinical decision-making. Therefore, part of the guideline is to lay out what clinical decisions have to be made. I would call that the logic of the guideline. The pediatric community has based their guidelines on a risk-based and exposure-based conceptualization of how you arrive at decisions. In other words, “What was your tumor? How long have you had it? What drugs did you have?” And that is what informs the decisions that you make going forward. I think pediatric guidelines have a very real conceptual underpinning. Pediatricians run into a little problem, they admit, when there is this interface between pediatrics and adult tumors. And having developed the guidelines, the real issue now becomes one of implementation. The guidelines are out there and are available, but they really do not have good data yet as to how they are being used, how reliably they are being used, or how much they are being used. But certainly, they are the tools to move forward. Charles Shapiro described an ASCO initiative he is heading, the creation of a set of survivorship guidelines for the adult population. It is a somewhat more difficult task than the pediatric guideline effort, given the greater heterogeneity of cancers. But the effort is to look at long-term

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium effects of treatment, and specifically how you manage long-term effects in the face of what may be co-morbidity and aging of the population. They will be concentrated on four areas: cardiac, endocrine, psychological, and cognitive, and then secondary and primary tumors. Joan McClure from the NCCN, one of the reactants, asked whether the guidelines would be generic and overarching, or instead be disease-specific. She also wondered how the ASCO survivorship guidelines would relate to the NCCN guidelines, which is the other companion set of guidelines in the country. And the answer is, “We do not know.” Dr. Shapiro reported that the effort has just gotten underway, but that initially there will be a focus on these four overarching areas, and then as it develops, see how it goes. Perhaps for the first time, you actually had guideline people talking to each other at the beginning of the process on how to work going forward. So, that may be the real seed that is being planted here. Finally, I presented where we stand vis-à-vis quality measures. My presentation was more conceptual than practical in that I just pointed out that we really do not have a good set of quality measures yet. We do not have the evidence to derive them, and we do not have the clinical practice guidelines to derive the aspects of quality we should be looking at. I talked about the pressure towards accountability and public reporting that is on us. And therefore, we do not have the luxury of saying let’s wait for the clinical trials for 10 years, and then we will do our public reporting. I think we are going to have to sit back, think about parsimonious ways to get some measures out there, and move ahead. Dr. Greenfield: Thanks very much. Ellen, could you tell us about your session? MAKING BETTER USE OF PSYCHOSOCIAL AND COMMUNITY SUPPORT SERVICES; ADDRESSING EMPLOYMENT AND INSURANCE ISSUES Moderator: Ellen Stovall, National Coalition for Cancer Survivors Our group dealt with some very practical issues, how to make better use of psychosocial and community support services, and also to address issues of employment and insurance. We had an outstanding panel: Diane Blum from CancerCare; Bonnie Teschendorf from the American Cancer Society; Pam Short from Penn State; and Loria Pollack from the CDC. Diane presented a wonderful overview of 61 years of CancerCare’s delivery of direct services to people and communities, communities today being able to be both virtual and teleconferenced, and not only storefront delivery of services. And as she said, the organization has gradually evolved

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium to meet the needs of extended survivorship over many, many years. When CancerCare first came into existence their staff were focused on helping people who were dying of cancer, and now she is faced with “mission creep” and the new challenge of meeting the needs of 10 million survivors. Luckily in the room were people from The Wellness Community, the Lung Cancer Alliance, Cancer Planet, the Lance Armstrong Foundation, the NCCS, and many other groups who can sustain and support and amplify the wonderful work going on at places like CancerCare. As Diane pointed out, they are only one organization. But the real question is, “How are they and all of us going to meet the needs that this report has so eloquently stated?” Groups like CancerCare provide a lot of financial assistance to people in need: co-payments for drugs, neuropsychosocial assessments, and unreimbursed medical needs, as well as transportation. The American Cancer Society, the Leukemia and Lymphoma Society, have been doing this for years and years as well, but again, it is important to emphasize the need for direct support for people in communities where they live. And as Diane and I have often said over the years, we have lamented the fact that if we all waited for the evidence to show that support was worthwhile, literally hundreds of thousands of people would not have benefited from these wonderful services that clearly help people. In reaction to Diane’s comments, Mitch Golant from The Wellness Community, pointed out that for all of us doing this very important work in these support programs, there is an opportunity for collaborative research that would take all these wonderful cohorts of people that have come to these organizations, and begin to use science to better understand how to meet the needs of people. This was a nice lead in for Bonnie Teschendorf’s presentation in which she illustrated how the ACS was really strategically looking at this as an issue within the society, particularly with regard to three recommendations in the report. How are we going to translate all of this into real practice? How are we going to be able to anticipate the needs of survivors? And these are the questions that the ACS is looking to with their call center open 24 hours, 7 days a week, being a listening post to what is going on out there in the community, and what the stories are that people are telling them. They are trying to identify new delivery methods to meet the needs of these individuals. The ACS will use science to drive the delivery of services of cancer survivors, including she said, detailing physicians’ offices. Similar to what pharmaceutical company representatives do, visits will be made to doctors’ offices in a very hands-on way, to see exactly what the needs are there. Loria Pollack from the CDC very nicely showed us what state cancer control plans look like. These plans exist in over 40 states, 2 tribes, and 2 territories, but not all of them are consistent in the way in which they

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium address survivorship issues. Most of them recognize the need for it. The CDC plans to hold a large conference in 2006 for those involved in these plans, and survivorship will be one of their points of focus. This is an example of how state cancer control programs and survivorship groups can work together to maximize the opportunities in this area. Pam Short, an expert on employment and insurance issues who was on the IOM committee, pointed out in her presentation that the IOM report supported a good news/bad news scenario for people with cancer. The good news is you are alive and you are well and you are living, but you may not be living as well as you did before your cancer, particularly when it comes to your employability and your insurability. Most survivors continue to work, but their workplace accommodations do not always address the disabilities that they have and that may affect them at work. A job, for many people, is more than just a paycheck. It can be an important part of one’s personal identity and a place where survivors can socially integrate back into a life that they once had. It is unclear whether survivors who continue to work following their cancer treatment are working because they want to work, or alternatively, that they have no choice but to work because they need employer-based health insurance. Without employment, many individuals find themselves underinsured to meet their needs as cancer survivors. I can tell you that employers are looking at these issues, and experience rating people in their self-insured plans, which is quite disturbing to those of us who do have cancer as part of our health history. Pam, as an economist, also pointed out that all cancer survivors live with economic risk. She reminded us of that in very subtle but important ways, for example, the risk is not just with health insurance, cancer also affects the ability to obtain life insurance. These products are not as accessible, available, and affordable to all of us as we would like. And that is a very important note to end on and brings us back to the message that Dr. Mullan started us with this morning, the need for universal health insurance coverage. Pam reminded us that universal coverage is not about them out there, it is about all of us. And I extrapolated that to mean that a shared care model is needed for a survivorship care plan, a shared model for assuring that all people in this country have equity and access to affordable cancer survivorship care. Dr. Greenfield: Thank you, Ellen. Dr. Ganz, could you next tell us about your session on research?

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium INVESTING IN SURVIVORSHIP RESEARCH Moderator: Patricia Ganz, University of California, Los Angeles Our group heard from Lois Travis, who provided us with a very informative presentation illustrating the fact that survivors of cancer treatment have a very high risk of second malignant neoplasms. Perhaps 1 of every 6 new cancers are from people who have been previously treated with chemotherapy or radiation. It is therefore very important that we view this group as high risk. She called for much more collaborative research with basic scientists, looking at the genetics of risk, so we could find out who is predisposed for second cancer. She called for a national infrastructure to support the conduct of this type of research, which would include storage of specimens and characterization of cohorts, and specific guidelines for follow-up. Sandra Horning talked to us about ASCO’s activities. I think we heard about many of these in her introductory remarks. There are broad areas of work that ASCO is working on, including research methods, policy, development of guidelines, and communications, with its web site peoplelivingwithcancer.org, as an example. It is important as a resource. Another ASCO survivorship activity pertains to the scientific education at the annual meeting, which again, hopefully will help to educate oncologists about the shared model of care. We hope to have a session on this model at the 2006 Spring meeting. Julia Rowland from the Office of Cancer Survivorship talked to us about the many dilemmas associated with trying to find survivors and follow them to evaluate their very long-term effects, those experienced more than five years after diagnosis. Most of the studies that have been done, have been done in the shorter-term. She also discussed the need for tools to actually measure survivorship outcomes, and also the need for transdisciplinary efforts. There were some comments on the panel from Dr. Horning and others that maybe if we can get colleagues in the basic sciences involved in this transdisciplinary effort, that the field will be seen as high profile, high value, and will achieve a number of our goals. Two of the research areas that Dr. Rowland thought were very important from her office were the role of basic and biomedical aspects of survivorship problems or challenges. There is a real paucity of research in this area. Likewise, the impact of cancer and survivorship on family members and caregivers is distinctly understudied. Also discussed, was the idea of trying to build survivorship relevant metrics and benchmarks into our studies as we go forward, linking into some of the topics such as guidelines and quality measures that Rodger Winn talked about. I think if we are going to make progress in these areas, we need to measure it, and that was eloquently discussed.

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From Cancer Patient to Cancer Survivor-Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium Finally, Frank Johnson quite persuasively discussed the need for better evidence in terms of long-term follow-up. We now have a very limited data set to direct clinicians in terms of what follow-up strategies they should use. Randomized trials are needed, and these may turn out to be very cost saving if we found out that we did not need to do as much testing and evaluation. His call to action is that we need support for these kind of trials. Jerry Yates from the ACS made an interesting and important point that with the low event rates in Eva Grunfeld’s trial (3.5 percent of women with breast cancer had any kind of serious event in their prospective follow-up) it is very, very hard, even in a very reasonably large randomized trial, to see anything meaningful. He proposed as potentially useful using administrative databases to obtain exposure information associated with treatment, and then look at outcomes across large populations. Another idea is to conduct focused studies on groups with high-risk exposures. Sandra Horning, again made a very important plea for the value of linking these kinds of research studies to clinical trial populations, where again, we know exactly what the treatment exposures are, and then looking at them long-term, particularly if we could have biological specimens to look at risk and genetic DNA repair of genes, and so forth in terms of subgroups of individuals who may be at risk for late effects. And again, these are all issues I think that we feel passionately about. The real challenge for all of us is finding the resources, perhaps again, collaborative work, trying to work together, dealing with existing cohorts, existing opportunities, and finding ways to leverage them. Thank you. Dr. Greenfield: Thank you to all of our moderators, and thank you all. The meeting is adjourned.