4
Resources for Completing the Care Plan

INTRODUCTION

Moderator: Ms. Ellen Stovall


This second day of the workshop is devoted to implementation issues. Kevin Oeffinger and Charles Shapiro will provide an overview of the status of survivorship guidelines. Diane Blum will then discuss appropriate use of available psychosocial support services. Recommendations for healthy lifestyle behaviors will be reviewed by Wendy Demark-Wahnefried. Information technology is critical to the success of survivorship care planning, and David Poplack, Mark Horowitz, and Michael Fordis will demonstrate its promise with an introduction to the Passport for Health program for survivors of childhood cancer. Lawrence Shulman will then reflect on the state of information technology as it pertains to survivorship care planning. Finally, Tim Byers will discuss regional approaches to cancer survivorship planning.

SURVIVORSHIP GUIDELINES

Two Perspectives

Presenter: Dr. Kevin Oeffinger


I would like to share some guideline-related lessons learned from two perspectives: (1) from working with the Children’s Oncology Group’s Late



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary 4 Resources for Completing the Care Plan INTRODUCTION Moderator: Ms. Ellen Stovall This second day of the workshop is devoted to implementation issues. Kevin Oeffinger and Charles Shapiro will provide an overview of the status of survivorship guidelines. Diane Blum will then discuss appropriate use of available psychosocial support services. Recommendations for healthy lifestyle behaviors will be reviewed by Wendy Demark-Wahnefried. Information technology is critical to the success of survivorship care planning, and David Poplack, Mark Horowitz, and Michael Fordis will demonstrate its promise with an introduction to the Passport for Health program for survivors of childhood cancer. Lawrence Shulman will then reflect on the state of information technology as it pertains to survivorship care planning. Finally, Tim Byers will discuss regional approaches to cancer survivorship planning. SURVIVORSHIP GUIDELINES Two Perspectives Presenter: Dr. Kevin Oeffinger I would like to share some guideline-related lessons learned from two perspectives: (1) from working with the Children’s Oncology Group’s Late

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary Effects Steering Committee to disseminate and implement follow-up guidelines, and (2) from sitting on the American Academy of Family Physicians’ Commission on Clinical Policy and Research, the body that reviews and collaboratively develops guidelines that are adopted by members of the American Academy of Family Physicians. Evidence-based guidelines are useful in promoting high-quality care, standardizing and facilitating the care of complex patients, and providing a rubric or a set of accepted measures for process evaluation. While they are valuable, there are some pitfalls associated with the use of guidelines. First, the large number of published guidelines may overwhelm and confuse practicing physicians. Second, some physicians reject guidelines because they may not take into consideration the complexities facing their patients. Guidelines may also be perceived to be dictating clinical decisions. The Children’s Oncology Group (COG) long-term follow-up guidelines were developed by a late effects committee cochaired by Melissa Hudson and Wendy Landier over the course of several years. COG is a 244-institution clinical trial consortium. The pediatric community has over the past 15 years wrestled with the issues under discussion at this workshop. Much has been learned from the pediatric experience, and it would be unfortunate if this experience were not applied productively to the challenges ahead in the adult survivor arena. The goal of the COG guideline effort was to standardize and enhance follow-up care throughout the life span of the survivor. The focus has been on screening for late effects rather than screening for relapse or recurrence, as these were already embedded in ongoing protocols. The COG guidelines start to apply at 2 years following the completion of cancer therapy. The intended users of the guidelines are clinicians who provide health care for pediatric cancer survivors regardless of their age and their care setting. To develop the guidelines, more than a year was spent conducting in-depth literature reviews, synthesizing the literature, achieving multidisciplinary group consensus, and submitting the guidelines to external review. Some refinements have been made following their initial dissemination in September 2003. A hybrid approach was used in guideline development. The large body of evidence linking therapeutic exposures and late effects was reviewed and scored according to quality. There are very few studies that examine how surveillance affects outcomes, in part because of the relatively small numbers of pediatric cancer survivors. Consequently, expert clinical experience and principles of screening in the general population and other high-risk groups was relied on for the aspects of care considered as part of the guideline development process. Version 2.0 of the long-term follow-up guidelines is available online at www.survivorshipguidelines.org. The guidelines are based on therapeutic

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary exposures rather than on cancer type. Shown in Figure 4-1 are some of the late effects of alkylating agents, associated risk factors, recommendations for follow-up and health counseling, and references to the literature. Throughout the guideline development process, dissemination efforts have been a priority. A methods paper was published in the Journal of Clinical Oncology in 20041 and general review articles have subsequently been published. Presentations have been made at specialty and primary care conferences. Having the guidelines posted online permits wide accessibility. A computer-based Passport for Care has been developed to tailor the guidelines to individual patients. This effort will be described by David Poplack and colleagues later in this session. Maintenance of the guidelines depends on 18 multidisciplinary task forces that include pediatric oncologists, radiation oncologists, surgeons, cardiologists, organ-specific specialists, primary care physicians, nurse practitioners, social workers, and psychologists. These groups review the literature, develop and recommend revisions to the guidelines, and engage in dissemination activities. A publications committee was established through the COG late effects committee to review all concept proposals for literature that would reflect on the COG guidelines. Two types of publications are highlighted: (1) detailed and in-depth systematic reviews on focused topics such as chest radiation and its relationship with breast cancer development; and (2) general reviews that are geared more toward the practicing primary physician and the community-based pediatric oncologist. Relationships with professional societies have been developed and endorsements, or what one might call “seals of approval” of the guidelines, have been sought. The guidelines are included in the National Guideline Clearinghouse™ (http://www.guideline.gov/). The backbone of dissemination efforts is through long-term follow-up programs. These programs are generally based at children’s hospitals or cancer centers at which a team approach is taken, with physicians working with survivors, nurse practitioners, social workers, and psychologists. There is also a multidisciplinary network of adult and pediatric-based subspecialists. The three core components of the long-term follow-up programs are: (1) a cancer summary and treatment plan that are discussed with the patient; (2) the COG long-term follow-up guidelines; and (3) delivery of risk-based survivorship care. Long-term follow-up is not uniformly available across the 244 COG institutions. Although more than half of these institutions have a mechanism for long-term follow-up care, only one-quarter of them have a pro- 1 Landier W et al., 2004. Journal of Clinical Oncology 24:4979-4990.

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary FIGURE 4-1 Example of COG guidelines related to chemotherapy late effects. SOURCE: Oeffinger, 2006.

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary FIGURE 4-2 Cancer center visits and late effects: Results from the Childhood Cancer Survivor Study. NOTE: Top line represents percent of survivors with incidences of late effects; bottom line represents percent of survivors seen during cancer center visits. SOURCE: Oeffinger, 2006. gram that provides comprehensive long-term follow-up care, and only one-tenth of these institutions can follow adult survivors of pediatric cancer. The proportion of survivors of childhood cancer with a cancer center visit within the past 2 years is about 35 percent at 7 years after cancer therapy or from the cancer diagnosis, according to results from the Childhood Cancer Survivor Study published a few years ago.2 As the bottom line on Figure 4-2 illustrates, the further survivors are from their cancer diagnosis, the less likely they are to have been seen at a cancer center. These results are based on patients who were treated from 1970 to 1986. When the cumulative incidence of late effects is superimposed, as shown in the top line on Figure 4-2, a very significant gap becomes evident as they are 15, 20, 2 See Oeffinger KC, Mertens AC, Hudson MM, Gurney JG, Casillas J, Chen H, Whitton J, Yeazel M, Yasui Y, Robison LL. 2004. Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Annals of Family Medicine 2(1):61-70.

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary and 25 years from their cancer therapy. By this time, they are experiencing their highest rate of morbidity but are not being seen at a cancer center. Some barriers to comprehensive survivorship care extend beyond the reach of long-term follow-up programs. Primary care physicians are not familiar with pediatric cancer survivors, which is not unexpected because, on average, a general internist or a family physician has three to five pediatric cancer survivors in their practice. One of these patients might be a leukemia survivor, one a Hodgkin’s disease survivor, and one a brain tumor survivor. Primary care physicians cannot be expected to keep up with this complex and rapidly evolving area of medicine, when it so rarely relates to their practices. Insurance-related barriers are very significant for survivors of childhood cancer. Many are uninsured, and if insured, their coverage may not adequately cover components of follow-up care, or it may exclude specialized care entirely if the long-term follow-up program is not a designated part of their health care network. There are no survivor-based delivery models in health maintenance organizations or U.S.-based single-payer systems. Efforts to improve survivor health care have focused on increasing the number and the quality of long-term follow-up programs in COG. Innovative tools, such as the Passport for Care to be demonstrated at the workshop, will facilitate improvements in care not only at cancer centers but also in community-based oncology practices. Work is also under way with insurance companies to develop cost-effective models of survivorship care. Other efforts are aimed at bridging the gap as patients age and transition from pediatric to adult care and transition from specialty to primary care. Engaging primary care physicians in survivorship care is key to improved care. If current practice is to change, efforts must extend beyond the dissemination efforts described. It is important to note some key differences between pediatric and adult cancer survivors. First, pediatric cancer is rare and, as mentioned, it is not a commonly encountered problem in primary care. In contrast, primary care physicians in the adult arena are engaged in cancer prevention efforts as well as care for the over 10 million survivors of adult cancer. Pediatric cancer survivors, especially as they age, do not maintain strong ties with oncologists, whereas adults survivors, as we learned from the Institute of Medicine (IOM) focus groups, tend to be “followed for life” by their oncologist. These features of pediatric and adult survivorship suggest different approaches to knowledge transfer. Primary care physicians encountering a pediatric cancer survivor in their practice need a single national site or source of information. In contrast, primary care providers caring for adult cancer survivors usually have a local source of information, the community-based oncologist. In both cases, translating knowledge goes

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary well beyond simply providing follow-up guidelines. Primary care providers need contact with expertise and avenues for continued communication. Disseminating clinical practice guidelines through journals, continuing medical education opportunities, and postings on websites is insufficient to change practice behavior. What will change practice behaviors? Some recent research conducted at the University of Toronto has provided some clues to effective knowledge translation and subsequent transfer of that knowledge.3 These investigators have defined knowledge translation as the “exchange, synthesis, and ethically sound application of researcher findings within a complex system of relationships among researchers and knowledge users.” To improve knowledge translation and transfer, mechanisms must be developed to “strengthen relationships among health researchers and users of health knowledge, enhance capacity for knowledge uptake, and accelerate the flow of knowledge into beneficial health applications.” In the context of survivorship care, components needed for knowledge transfer include: a user-friendly version of survivorship guidelines; a patient version of the treatment summary and care plan; training to prepare practices for guideline adoption (both the office staff and the clinicians); facilitated communication (e.g., between nurse managers, oncologists, and primary care physicians); and innovative technology (e.g., cross-platform electronic health records or tools such as the Passport for Care). In terms of models of care, Eva Grunfeld’s series of randomized clinical trials illustrates how follow-up care for breast cancer survivors can be accomplished in the primary care community.4 The shared care model can be stratified by risk. Some high-risk survivors will need continued follow-up with their oncologist. Lower-risk patients may not need the resources of 3 Information about this program is available at http://www.ktp.utoronto.ca/index.htm. 4 Grunfeld E. et al., 2006. Randomized trial of long-term follow-up for early-stage breast cancer: a comparison of family physician versus specialist care. Journal of Clinical Oncology 24(6):848-55. Grunfeld E. et al., 1999. Comparison of breast cancer patient satisfaction with follow-up in primary care versus 2specialist care: Results from a randomized controlled trial. British Journal of General Practice 49(446):705-710. Grunfeld E. et al., 1999. Follow-up of breast cancer in primary care vs specialist care: Results of an ecomonic evaluation. British Journal of General Practice 79(7-8):1227-1233. Grunfeld E. et al., 1995. Evaluating primary care follow-up of breast cancer: Methods and preliminary results of three studies. Annals of Oncology 6(Suppl 2):47-52.

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary a cancer center or an oncologist and may be best seen by a primary care physician. There is a unique opportunity to develop and test models of care through partnerships of cancer centers, Community Clinical Oncology Practices (CCOPs), and practice-based research networks supported by the federal Agency for Healthcare Research and Quality (AHRQ). An example of such a network is the Federation of Practice-Based Research Networks, which was established in 1997. There are 50 different networks involving over 6,000 primary care clinicians, over 5 million patients, and 24 million patient encounters a year. There are over 100 active research studies through these networks. There are opportunities for cancer centers and CCOPs to collaborate with these practice-based research networks to develop and test survivorship care models and then disseminate successful models for adoption. In engaging primary care providers in survivorship care, it is important to remember that effective strategies tend to work from the bottom up, not from the top down. Involving primary care physicians in the process at the outset is critical. The American Academy of Family Physicians, the American College of Physicians, and the American Academy of Pediatrics have been integrally involved in developing and disseminating guidelines for many years and have an established process and experience working with other professional societies. Some guideline strategies fail if: (1) there is a “top-down” mentality; (2) guidelines are based on consensus rather than good evidence; and (3) the focus is on who should do it, rather than what should be done. To bring primary care providers and other constituencies into the dialogue, a summit meeting could be held on collaborative approaches to survivorship care. Survivorship researchers have examined issues related to quality of life, late effects, and health outcomes, but what is needed now are research initiatives to test models of care. A program announcement that established a common set of outcomes, including measures for adherence to guidelines, would allow the research community to test stratified risk models of care and alternative methods to collaborate with primary care providers. A funding mechanism is needed to encourage the development and testing of innovative technology. Support could be used to explore the potential for exciting technologies, like the Passport for Care and electronic health records to further survivorship health care. Additional research is also needed to better understand the survivorship care paradigm. Cancer survivors are being characterized as having a chronic condition, but cancer is quite distinct from cardiovascular disease and diabetes. Cancer survivors may have a late effect that becomes a chronic health problem, but often it is their risk for developing new problems that presents a different paradigm.

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary ASCO INITIATIVE Presenter: Dr. Charles Shapiro The American Society of Clinical Oncology’s (ASCO) initiative is to develop long-term medical care guidelines for adult cancer survivors. The effort began in 2005, and its purpose is to provide health care professionals with the knowledge and expertise to decrease morbidity and to improve the quality of life for adult cancer survivors. The initial audience for the guidelines is health care providers, but the effort could be expanded to include companion patient-friendly survivorship guidelines. The ASCO guidelines will address issues arising during the posttreatment phase of the cancer trajectory. In contrast to pediatrics, there are few guidelines for adult survivorship care. A limited evidence base has impeded guideline development. The ASCO initiative will be key to highlighting what is known and not known for this phase of cancer care and suggesting critical areas for future survivorship research. In contrast to the treatment modality approach taken in pediatrics, the ASCO guidelines will be developed using a symptom or organ site paradigm. For many aspects of survivorship care there is limited clinical trial-based evidence, and generalizations about care from cancer registries are difficult because registries do not capture complete information on treatment and late effects. Furthermore, adult cancer survivors often have comorbid conditions that can confound interpretation of outcomes by researchers as they attempt to establish relationships among treatments, late effects, and health outcomes. It has been difficult, for example, to clearly establish the link between doxorubicin and cardiac problems because heart disease increases naturally as patients age. There is also a dependence on surrogate endpoints, for example, using bone mineral density in research on the effects of various treatments on fractures. The more clinically relevant endpoint, fractures, has not been well studied because follow-up periods have not been long enough. Another challenge facing clinicians as they attempt to use evidence to guide their practice is that data from long-term follow-up studies may reflect outmoded treatment techniques. For example, 30 years ago, radiation techniques were very different from what they are today. These older techniques were associated with an increased incidence of cardiovascular effects that presented in the second decade. With more modern techniques, the latest data show a markedly reduced incidence of cardiac effects. With treatments advancing rapidly, evaluation of late effects of treatments becomes a moving target. It is axiomatic that new therapies will be adopted into standard practice based on short-term improvements in efficacy. For

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary FIGURE 4-3 ASCO’s cardiopulmonary guidelines. SOURCE: Shapiro, 2006. example, trastuzumab (Herceptin) is markedly beneficial in the early stage of breast cancer according to clinical trials, but the median follow-up period in these trials is 2 to 3 years. It has become the standard of care for women with breast cancer who overexpress the growth factor protein HER2. What is known of trastuzumab cardiotoxicity is reassuring, but absent are long-term follow-up studies and information on interactions between radiation and trastuzumab or anthracyclines and trastuzumab. This represents another kind of moving target that necessitates a continuous reexamination of guidelines after they are created. The ASCO guidelines will focus on five areas in the following order: cardiopulmonary late effects; bone health; second cancers; hormone deficiency; and anxiety and depression. The guideline development process is moving forward very quickly, and the first guideline is already being reviewed by the ASCO board. Many people have volunteered to expedite the guidelines process. The focus of the guidelines is on screening questions, for example, whether asymptomatic adult survivors should be screened for pulmonary

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary dysfunction or cardiac disease (Figure 4-3), and if so, when should such screening begin, and at what interval should it be repeated? One of the recommendations included in the ASCO cardiopulmonary guideline was based on consensus and may be considered controversial. The ASCO guideline suggests screening of asymptomatic high-risk survivors every 5 years and treatment for asymptomatic left ventricular (LV) systolic or diastolic dysfunction based on recommendations of the American College of Cardiology, the American Heart Association, and the Heart Failure Society. Survivors are considered to be at high risk if they have one of the following: age less than 18 years at exposure; prior cardiac disease; greater than 300 mg/m2 of doxorubicin; or mediastinal radiation. This consensus-based recommendation seems to be reasonable, at least as a starting point. In terms of challenges and implementation barriers, the first is the paradigm shift to thinking of cancer as a chronic condition. It will be important to raise awareness that people live a long time with cancer and that there are long-term consequences of treatment. A second issue relates to the major legal and financial implications of guidelines. ASCO’s consensus guideline states that it is reasonable to screen for cardiac dysfunction in women who have had greater than 300 mg/m2 doxorubicin or who had breast radiation that involved the chest wall. Such screening is not now part of standard breast cancer follow-up. Physicians are being asked to consider screening for cardiac dysfunction when they have not routinely done so and when there is only consensus among experts to back up the recommendation. Another challenge in issuing guidelines is establishing who is to accept responsibility for providing guideline-recommended care. ASCO originally viewed this as a responsibility of the oncology community, but more recently, and certainly at this meeting, primary care providers and survivors themselves should be considered as potential constituents for taking action based on the guidelines. Publishing the guidelines is a starting point, and it may ultimately have the most value in identifying gaps in knowledge and setting the research agenda. The ASCO guideline effort is also an opportunity to link academic and community centers to collaborate on research interventions, education, and information dissemination. The Lance Armstrong Foundation Centers of Excellence, to be described later today, are a model that needs to be developed to fulfill its potential of driving the agenda for research and improvements in survivorship care. The Quality Oncology Practice Initiative (QOPI) is a potential mechanism to assess compliance with the ASCO guidelines. The ASCO guideline initiative will attempt to learn from the experiences of other clinical practice guideline efforts, such as those of the National Comprehensive Cancer Network (NCCN). We need to under-

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary Dr. Shulman presented slides showing a pilot tool being developed at the Dana-Farber Cancer Institute. It represents a simple approach and a place to start in adult survivorship care. The first slide shows the entry of the diagnosis of Hodgkin’s lymphoma (Figure 4-9). Once the diagnosis is entered, the chemotherapy page pulls up the specific chemotherapies that are used for that cancer (Figure 4-10). The provider can check the agents and then enter the total doses. The radiation page profiles what the Hodgkin’s lymphoma patient is likely to have gotten, and the provider specifies the doses and the dates (Figure 4-11). The information provided on chemotherapy and radiation therapy is summarized on a treatment summary page (Figure 4-12). An assessment/problem list is then generated based on the patient’s age, sex, and treatments (Figure 4-13). The provider can then go down the list and check risks—for example, in this case, azoospermia, cardiomyopathy, coronary artery disease, depression and anxiety, and risk of second cancers. The provider can indicate that the patient’s risk has been ruled out or that the patient has the listed problem. Once the provider has identified the pertinent risk factors, information and recommendations can be generated in a bulleted format (the information shown in the figure is in draft form and is shown only to illustrate how the system might work) (Figure 4-14). A patient summary can be generated and printed. This draft example is written in patient-friendly language and is called an oncology long-term follow-up summary (Figure 4-15). It instructs the survivor to share the summary the doctors and to keep it in their personal files. FIGURE 4-9 Diagnosis entry. SOURCE: Shulman, 2006.

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary FIGURE 4-10 Chemotherapy entry. SOURCE: Shulman, 2006. A summary suitable for distribution to the primary care provider can also be generated (Figure 4-16). Dr. Shulman raised several questions for the workshop participants to consider regarding implementation: Will physicians and nurses want to use such a tool? Will its potential value make them feel that its use is worthwhile? Will peer pressure motivate its use? Could the treatment summary become the equivalent of a clinic note or admission note and be considered a part of normal practice? Could the treatment summary be required by regulatory agencies such as the Joint Commission on the Accreditation of Healthcare Organizations? Could the use of this tool be tied to pay for performance and reimbursement to improve the quality and rationality of follow-up care? Payers and insurers want well-codified care plans. Could patients help push this as an expectation of their care? Dr. Shulman described mechanisms to encourage the development of information technology that will facilitate survivorship care. A centralized,

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary FIGURE 4-11 Radiation entry. SOURCE: Shulman, 2006. FIGURE 4-12 Treatment summary. SOURCE: Shulman, 2006. national effort, similar to the COG guideline development project, is needed in adult oncology. Teams will need to be assembled by cancer type to achieve consensus on the content of the care plan—for example, the chemotherapy and radiation therapy regimens that need to be included, the risks for late effects, and recommended follow-up. This collaborative effort might be similar to the NCCN’s efforts to develop guidelines. There is a need to start simply but on a platform that will facilitate enhancements with time.

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary FIGURE 4-13 Assessment/problem list. SOURCE: Shulman, 2006. FIGURE 4-14 Recommendations. SOURCE: Shulman, 2006.

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary FIGURE 4-15 Patient treatment summary. SOURCE: Shulman presentation, 2006. A central organization needs to be established to assume this task. It will need an administrative arm, clinical teams, and an information technology group that manages the development of the tool. Funding will have to support this effort—including the development, implementation, maintenance, and evaluation costs. REGIONAL APPROACHES TO CANCER SURVIVORSHIP PLANNING Presenter: Dr. Tim Byers As clinicians become engaged in survivorship care planning and as tools are developed to aid them, it is important to be thinking about the role of organizations and institutional systems at the state, regional, and local

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary FIGURE 4-16 Primary care provider (PCP) summary. SOURCE: Shulman, 2006. levels.15 These could be involved in both responding to and perhaps motivating national opportunities. A recent example of this interplay between local and national opportunities is the decision by the companies making Coca-Cola and Pepsi-Cola to remove high-calorie carbonated beverages from U.S. schools. This national solution was reached because of activities at the local level. It became clear to drink manufacturers that they were going to lose their access to schools city by city, and so a number of bottom-up efforts created a top-down solution. Both kinds of solutions will be necessary to improve U.S. cancer survivorship care. There are going to be national efforts, but also some state, regional, and local ideas and demonstration projects that will emerge. 15 For additional information on regional approaches to cancer survivorship planning, see the background paper prepared by Dr. Byers in Appendix D.4.

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary State-level cancer control efforts are beginning to focus on cancer survivorship. Across the country there are 44 states with comprehensive cancer control plans. The CDC has a strategy to capitalize on their state-based investments in epidemiologic surveillance, tobacco control, and breast and cervical cancer screening. They are providing support to states to help them coordinate these varied efforts into cohesive and comprehensive cancer control programs. States have received assistance for planning, but they now face the challenge of implementing their plans with limited support. Most have specified that they want to cut cancer death rates, decrease smoking, address the problems of obesity and physical inactivity, and increase screening for cervical and breast cancer. Without the necessary federal support, the 44 states that are implementing their plans are trying to identify new sources of support and partners. In response to a question that Dr. Byers posed to the audience about involvement with state plans, about 10 percent of the workshop participants indicated that they were well engaged with their state’s cancer control program, two-thirds indicated that they were unfamiliar with their state’s plan, and the balance fell somewhere in between. Dr. Byers introduced Dr. Loria Pollack, a medical officer at CDC, and asked her about its vision for state cancer programs over the next 5 years. Dr. Pollack indicated that CDC sees itself as providing an impetus, guidance, and expertise to states as they design their own plans. CDC does not want to dictate how states create their plans or what goes into them. CDC has provided guidance to address the entire continuum along the cancer trajectory, from prevention and early detection to palliative and end-of-life care. The budget for comprehensive cancer control planning has gone up, but more and more states, tribes, and territories are getting this support. CDC encourages states to create coalitions of clinicians, public health departments, businesses, and advocacy organizations. The comprehensive cancer control plan is an impetus to bring these divergent groups together. CDC expects the partners to also provide some funding. In Georgia, tobacco settlement money has gone into the planning efforts. In Connecticut, $6 million has been directed to cancer planning from the state budget, the hospital fund, and other sources. CDC takes a background role as these coalitions take ownership of the cancer control plan to serve their own communities. Dr. Byers noted the existence of a wide gap between public health and clinical care in the United States, resulting in some state coalitions lacking the necessary clinical partners. Most of the systems involved in care for cancer patients are not represented in the cancer coalitions. Creative ways to engage clinicians are needed. The cancer plans, in order to be considered comprehensive, need to diversify to include clinical perspectives. A content

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary analysis of the 44 state plans shows that tobacco control, epidemiologic surveillance, and cancer screening goals are all well represented. There is very little coverage of clinical issues. There is an enormous opportunity to use the state cancer planning groups and the state cancer coalitions to move survivorship care planning forward into demonstration projects. Every one of the 44 state cancer plans mentions cancer survivorship as an important issue. Most of these plans mention survivorship only briefly. There are at least two states, Oregon and Minnesota, that have some focus on cancer survivorship planning. All of the states recognize that they need to do more to address the needs of cancer survivors, and they are looking for something specific to do. Including survivorship care issues in the state plans may engage some of the clinical partners who have not yet come to the table, especially if they can participate in a specific demonstration project. Survivorship as a public health issue is something that both NCI and CDC have been talking about, and the LAF is now joining with both of those organizations to try to move this forward. There are opportunities in the short term to have demonstration projects in partnership with public health agencies and some of the NCI-supported cancer centers. There are 39 comprehensive cancer centers around the United States whose primary mission is cancer research. Each one of them has an unfunded mandate to earn that adjective “comprehensive” in its name and provide community service through education and outreach. In the short term, NCI-designated comprehensive cancer centers, CCOPs, and other cancer care systems could take a look at their clinical trials and examine the opportunities to answer questions related to cancer survivorship. Dr. Raich, asked to comment on this suggestion, pointed out that few adult cancer patients participate in clinical trials and that relatively few trials have been designed with survivorship issues in mind. Nevertheless, these programs could provide excellent settings for doing pilot studies in cancer survivorship care planning. The big obstacle is funding such demonstration projects. CCOPs can receive “cancer control credits” for conducting this kind of research, and this may represent a small motivator for them to get involved. Dr. Byers mentioned that many patients leaving clinical trials are not given a Survivorship Care Plan at the conclusion of their treatment, and they probably should have such a plan. This could be a good place to pilot test paper- or Web-based versions that have been discussed. Cancer centers are supposed to be innovative and cutting edge, and the treatment provided as part of any trial is very well defined. This and the fact that quality-of-life outcomes are often measured as part of trials would seem to make this an ideal place to start.

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary Other opportunities for demonstration programs at the state or regional level may be through the Centers for Medicare and Medicaid Services’ (CMS) quality improvement organizations (QIOs). QIOs may examine claims data to identify problems and work in concert with providers to improve care. Some cancer quality programs have been undertaken, but most of the successful efforts have been in the area of cardiovascular disease and diabetes management. A QIO-run demonstration project would be very natural because they already work closely with providers to monitor and evaluate care. A joint project could be undertaken by two or three of them around the country. If the demonstration project were successful, both operationally and in terms of improved outcomes, then it would be expected to become a standard of care. Once a program was established in Medicare, other payers would be likely to come on board. Sometimes local health care systems can have an enormous impact. For example, if the Mayo Clinic adopts a new policy, then southern Minnesota is affected as a region. When the Marshfield Clinic moves ahead with a new program, then central Wisconsin is affected as a region. This is also the case with large managed care programs such as Kaiser Permanente. In summary, in terms of the various organizations that can affect state and regional approaches to survivorship care planning, state public health departments have a key role to play. They are the conveners of the state-level cancer control programs. The state public health agencies will have to learn how to accommodate multisectorial involvement, especially private-sector involvement and leadership in improving the cancer situation in states. State health agencies must be active partners in the process, but they will need to step aside to let others move the process forward. Comprehensive cancer centers have an important role to play, but they will need to avoid ivory tower approaches and design demonstrations projects that have a business model for the private sector so that they can be sustainable. QIOs have statewide reach. They are generally not active partners in state cancer programs, but there is an immediate opportunity for CMS to conduct demonstration projects and affect state-level practice along these lines. Health professional societies tend to be more national than local, but in some areas there are some active local health professional societies that might come to bear on this. To move the agenda forward, cancer survivorship planning should be a key element in every state comprehensive cancer control plan. Inclusion in the plan does not ensure its implementation. However, if there are actionable items in the plans, and if there is interest in the community, then putting some specific goals and objectives into plans for cancer survivorship care planning could be very helpful. Should the plan say that, statewide, by the year 2010 everybody is going to have a care plan? That might be a long-term vision, but the most

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary useful action item for the next 2 to 3 years would be to conduct some demonstration projects, evaluate them, publicize the results, and then move toward standardizing the practice. It may be the case that the imperative for care planning will be established nationally in the next two to three years, but it is also likely that local initiatives will be needed to motivate change at the national level. As demonstrations are proceeding, business models must be developed to sustain survivorship care planning. Dr. Demark-Wahnefried suggested that for states to take an active role, CDC will have to encourage demonstration projects on survivorship. Dr. Pollack said that while CDC is very interested in this area, they have no dedicated funds for survivorship projects. Dr. Byers pointed out that CDC does not have the resources for 98 percent of the items that are in cancer plans. This is why diversification is necessary. Dedicated tobacco tax revenues, the private sector, and nongovernmental organizations can be mobilized to support the implementation of these plans. Dr. William Kraybill identified another potential partner in state or regional cancer control, the American College of Surgeons’ Commission on Cancer (ACS-COC). Most large and small cancer programs around the country are organized in a multidisciplinary fashion and abide by a set of standards promulgated by the ACS-COC. They are partially funded by the American Cancer Society and are likely to be enthusiastic about moving survivorship forward. Dr. Byers agreed and suggested that the combination of the American Cancer Society, the ACS-COC, and the state tumor registries represent a potentially powerful triad that has not been fully taken advantage of. Dr. James Talcott characterized survivorship as crosscutting and mentioned organizational barriers that make it difficult to cut across disease entities. Academic medicine is often organized by disease, and often, one must duplicate effort for breast cancer, prostate cancer, lymphoma, and every other oncology subspecialty. It is sometimes hard to engage in activities that cut across diagnoses. There are almost no opportunities for researchers to work with other investigators who are doing the same thing “one disease over.” Finally, Dr. Byers discussed how the traditional public health role of surveillance could be enhanced to further survivorship care planning. Perhaps methods could be devised to routinely monitor outcomes of confusion, anxiety, fatigue, dissatisfaction with care, and poor quality care. Survivorship-related quality-of-care measures could include those related to poor transitions in care or underuse of tamoxifen among women with breast cancer who were prescribed the medication. Cancer registries could be monitoring outcomes after cancer apart from death and (in some) recurrence. Demonstration projects on enhanced cancer registration to capture

OCR for page 64
Implementing Cancer Survivorship Care Planning: Workshop Summary some of these data elements could be considered. Extending cancer registration into these areas on a fairly routine basis would help to shine a light on the problem. In summary, Dr. Byers reiterated the value of working with state cancer programs to build survivorship issues into the comprehensive cancer control plans. This planning effort should be moved out of public health agencies, so that public health is a partner but not a convener of these plans. Extending the public health function of surveillance to include cancer outcomes that are common and important to cancer survivors should be considered and tested. Demonstration projects could be initiated soon to begin to test these ideas and processes and to move them forward.