From Cancer Patient to Cancer Survivor: Lost in Transition An American Society of Clinical Oncology and Institute of Medicine Symposium (2006) / Chapter Skim
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2 Plenary Session
2 Plenary Session
Pages 7-55
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From page 7... ...
I am president of the National Coalition for Cancer Survivorship (NCCS) and one of the editors of this wonderful report that we are here today to celebrate.
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From page 8... ...
Our educational sessions at the 2006 meeting will include among others, Dr. Ganz talking about the development of a survivorship care plan and Dr.
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From page 9... ...
In the area of communications ASCO sponsored a Meet the Expert media event in December of the past year, and held a press conference in May that was dedicated to cancer survivorship and the research presented at the 2005 annual meeting of the society. The coverage, both press and national broadcast media, on survivorship research presented at our last annual meeting was extensive.
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From page 10... ...
It is as if we had invented sophisticated techniques to save people from drowning, but once they had been pulled from the water, we leave them on the dock to cough and splutter on their own in the belief that we have done all that we can." And then later on, "Survivorship should be studied as a phenomenon in itself, rather than as a byproduct or afterthought of basic research on cancer treatment." And I really am delighted that the work of this committee, and the work in this report, has raised those concerns to a new level and given them a new poignancy. And this isn't to say that in between 1985 and 2005, there hasn't been a great deal of accomplishment in this area, but today's report is really a high-water mark for that.
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From page 11... ...
The survivorship care plan concept, an individualized roadmap for each survivor, ought to be part of what we do clinically, and what people into survivorship encounter. It is terribly important.
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From page 12... ...
But the notion that Peter Jennings and every one of us ought to have a survivorship care plan I think is just a terrific idea. Survivorship research is a "gimme" in IOM reports -- they always say there should be more research, and once again, we have said that.
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From page 13... ...
And certainly, from the perspective of cancer patients, that is a real issue. Cancer patients whatever their views are -- right, left, or center; Democrat or Republican -- when they get diagnosed and do not have health insurance coverage, have a huge problem.
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From page 14... ...
Today, thankfully, it is a term of science. In 1989, Natalie Davis Spingarn, one of the early founders of the NCCS, crafted the Cancer Survivor Bill of Rights, which laid forth many of the principles that are embodied in this report, including the survivorship care plan.
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From page 15... ...
. Among the report's many findings was that "for many types of cancer, answers to basic questions are not yet available, for example, how frequently patients should be evaluated following their primary cancer therapy, what tests should be included in the follow-up regimen, and who should provide follow-up care." The 1999 quality report spawned several other reports: a 2003 report, Childhood Cancer Survivorship: Improving Care and Quality of Life (IOM, 2003)
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From page 16... ...
The committee made ten recommendations. Simply and most importantly, we recommended that awareness of the needs of cancer survivors be raised; that cancer survivorship be established as a distinct phase of cancer care; and that responsible parties act to ensure the delivery of appropriate survivorship care.
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From page 17... ...
The report's sixth recommendation calls for congressional support for the Centers for Disease Control and Prevention and states to develop, implement, and evaluate comprehensive cancer control plans that include consideration of survivorship care. Recommendation number seven calls for the NCI, professional associations, and voluntary organizations to expand and coordinate their efforts to provide educational opportunities to healthcare providers to equip them to address the health and quality-of-life issues facing cancer survivors.
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From page 18... ...
Instead of joyous, I felt lonely, abandoned, and terrified. This was the rocky begin ning of cancer survivorship for me.
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From page 19... ...
IMPLEMENTING THE CANCER SURVIVORSHIP CARE PLAN AND COORDINATING CARE Patricia Ganz, Director, UCLA Division of Cancer Control, Jonsson Comprehensive Cancer Center My name is Patti Ganz. I am a medical oncologist.
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From page 20... ...
There was mounting clinical evidence by two large trials, one done in Europe and one done in the United States, that breast-conserving surgery (lumpectomy and radiation therapy) was equivalent to mastectomy, and lo and behold, there began a revolution in the primary treatment of breast cancer.
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From page 21... ...
21 25 59 56 59 27 32 nodes 20 negative nodes reserved. 15 with Survival positive rights 10 Women with 218 216 209 120 115 All Overall Women 5 Society.
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From page 22... ...
In 1990, a consensus conference focused on the primary treatment of breast cancer, that is, the issue of mastectomy versus breast-conserving surgery. This conference recommended that all women be offered breast-conserving treatment if possible, and that the option of adjuvant therapy be discussed.
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From page 23... ...
So, again, this is a very long and complex road that a woman with breast cancer, who has an excellent survival, has to face in terms of the primary treatment of her disease. Table 2-1 shows statistics that document improvement in survival from the 1970s to the 1990s.
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From page 24... ...
24 of 2000 only years Tamoxifen 79 to node-positive Both 40 reserved. 1990 with age rights Year women of All years 1980 among only 69 Society.
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From page 25... ...
So, there is a natural isolation, because of the complexity of treatment. There are other challenges in survivorship care.
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From page 26... ...
The survivorship care plan is also needed to describe any known and potential late effects of cancer treatments, with the expected time course. There is a paucity of information on some late effects, but we do have information on some, and what we do know needs to be adequately communicated.
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From page 27... ...
The survivorship care plan is also needed to promote a healthy lifestyle to prevent recurrence and reduce the risk of other co-morbid conditions. Wendy Demark-Wahnefried, Julia Rowland, and others just wrote a wonderful article in the Journal of Clinical Oncology talking about the missed opportunities for prevention and healthy lifestyle promotion in survivors (Demark-Wahnefried et al., 2005)
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From page 28... ...
The other point that I would like to make is that the survivorship care plan is really a place to start in ensuring quality cancer care. We have paid a lot of lip service to this, and again, if we want to start somewhere, it may be somewhat simpler to address the quality of survivorship care than to address the quality of primary treatment for each of the different cancers.
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From page 29... ...
Patients, for example, sometimes receive blood transfusions during treatment which can pose risks for hepatitis and other infections that can have long-term health consequences. Other key elements of the survivorship care plan include the expected short- and long-term toxicities or late effects expected from the treatments and the kind of surveillance and monitoring needed both for these late effects, as well as for recurrence or second cancers.
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From page 30... ...
Figure 2-5 illustrates where a cancer survivorship care plan might fit in a chronic care model, where we have a proactive, prepared practice team, and we have an informed, activated patient. And again, I can think of nothing better than the survivorship care plan to be interdigitated in this interaction.
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From page 31... ...
The majority of cancer patients are Medicare beneficiaries, and with rapid expansion of this group over the next several decades because of the aging of the baby boom population, cancer survivorship should become a high priority on the policy agenda for
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From page 32... ...
32 ) VA, Employers Health Advocates CMS, Plans, Provider Organizations Survivors (Cancer 2004.
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From page 33... ...
I have kind of an education sheet that I actually go through. So, while I hate to say we need regulation and external reasons to do this, I think things that would facilitate survivorship care planning include the development of templates, a call to action that this is the expectation, and training medical oncology fellows, surgeons, and others who take care of cancer patients to consider this as an aspect of quality care.
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From page 34... ...
As Patti Ganz has already mentioned, I advocated to the IOM committee that we view cancer survivorship as a distinct phase of the cancer trajectory with a unique constellation of needs and problems requiring specific interventions. This conceptualization was, in part, inspired by the experience with end-of-life care.
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From page 35... ...
The question for us here today is where are we with survivorship? Survivorship care is incredibly comprehensive as reflected in its many domains (Box 2-3)
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From page 36... ...
, there is really virtually nothing on cancer survivorship. When I looked at the curriculum for clinical oncologists, survivorship content was lacking, but Dr.
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From page 37... ...
There was not much coverage of long-term effects, and really no articles that told providers how to monitor individuals with a history of cancer. It became clear from this review, that primary care providers need a cancer survivorship care plan because there are few readily available resources for them.
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From page 38... ...
There is an excellent AAFP resource that I would like to call to your attention. The AAFP published a comprehensive, 60-page monograph on cancer survivorship which covers all the major areas including risk of recurrence, follow-up, late effects of treatment, psychosocial issues, sexuality, health behaviors, alternative medicine, disability, and discrimination.
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From page 39... ...
Let me move on to guidelines. Recommendation three in the IOM report states that "health care providers should use systematically developed, evidence-based clinical practice guidelines, assessment tools, and screening instruments to help identify and manage late effects of cancer and its treatment.
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From page 40... ...
The IOM recommendation calls for the development of screening and risk assessment tools which are consistent with this paradigm for guideline development. The IOM committee attempted to assess the status of survivorship guidelines and reviewed 24 guidelines for breast cancer, 15 for colorectal cancer, 4 for prostate cancer, and 2 for Hodgkin's disease.
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From page 41... ...
The ESMO recommends no imaging studies for rectal cancer survivors. Cancer Care Ontario (CCO)
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From page 42... ...
The IOM committee also recommended that a set of survivorship care measures be developed. Quality measures fit well into a mechanism for trying to improve care.
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From page 43... ...
ADDRESSING GAPS AND NEW PRIORITIES IN CANCER SURVIVORSHIP RESEARCH John Z Ayanian, Associate Professor of Medicine and Health Care Policy, Department of Health Care Policy, Harvard Medical School and Brigham and Women's Hospital Thank you, Shelly and Ellen.
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From page 44... ...
In addition to addressing research gaps, I will be focusing on new priorities in cancer survivorship research. Looking at research gaps is really an observational experience.
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From page 45... ...
And this draws on three other recommendations in our report addressing the survivorship care plans that Dr. Ganz has discussed, the quality indicators that Dr.
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From page 46... ...
And we need to understand how those legal protections are working for cancer survivors. What are some mechanisms to expand survivorship research?
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From page 47... ...
We also have practice-based research networks supported by the Agency for Healthcare Research and Quality that typically involve networks of primary care practices around the country that are willing participants in research. These networks are advantageous because they have a connection to the community and could move cancer survivorship, which is now largely in the domain of comprehensive cancer centers, out to a broader array of delivery settings, all of which have a very important role to play.
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From page 48... ...
I only wish the research chapter had come at the beginning of the report, because I think everything follows from that. I have been doing research in cancer survivorship for 30 years, and I was a part of the Childhood Cancer Survivor Study
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From page 49... ...
And because they are divided, then you have to look at your own choices, and look for resources to make a choice. Having the information that you would get from the cancer survivorship research focus would really help newly diagnosed patients make that choice, because there would be that longitudinal information to help them look at what happens if I do nothing,
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From page 50... ...
Dr. Archie Bleyer of Cure Search, the LIVESTRONGTM Young Adult Alliance, and the Children's Oncology Group: The survivorship care plan is a place to start.
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From page 51... ...
Is the "hand off," the term used in the video, too abrupt, too definite? Will we use the survivorship care plan as oncologists to close the book, as Patti put it, write the final chapter, and turn the patient over to that shaded box?
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From page 52... ...
And the NCCS made a decision to sponsor a workshop next spring to show what it would take to bring people together to implement this care plan and answer a lot of the questions that have been raised. There are a lot of recommendations that are intended to take ideas and flesh them out.
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From page 53... ...
I did a little back-of-the-envelope study on cancer patient follow-up for a breast cancer doctor who treats half his patients with adjuvant chemotherapy, and where they do beautifully and they live. Five years down the road, 26 percent of your practice is going to be those survivors, and 10 years down the road 40 percent of your practice is going to be delivering survivorship care.
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From page 54... ...
I would like to know whether you would be willing to address the question of transition to adult care for childhood cancer survivors either in one of the breakout sessions or in whatever follow-up activities there are?
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From page 55... ...
But certainly, the issue was addressed, and what it really did is bring the two participants to the table, because that is the only way that this is all going to move forward.
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