1
Introduction

The ranks of cancer survivors in the United States are 10 million strong and growing, in large part because of advances in early detection and cancer treatment. Some cancers that were once uniformly fatal, such as testicular cancer, are now cured in nearly all cases. And many of those who get common cancers—cancers of the breast, colon and rectum, and prostate—become long-term survivors. Other people may be living with a cancer such as lymphoma that is controlled with ongoing or periodic treatment, but not cured. All of these individuals can be considered survivors of their disease, and also of their treatment. All major forms of treatment—surgery, chemotherapy, hormone therapy, and radiation therapy—can have unwanted, long-term effects on tissues and organ systems that impair a person’s health and quality of life in small and large ways. Increasing the risks of these late effects are the use of multiagent and intensive administrations of therapies that improve survival, but are more toxic. Some anticancer drugs are taken for extended periods—years instead of months—obscuring the delineation of the end of cancer treatment.

Each phase of survivorship brings different concerns to the fore. For many of the 1.4 million individuals diagnosed with cancer each year, resuming the routines of work and family life after completing active treatment may be especially difficult.1 Anxiety over the possibility of cancer recurrence may dominate at this time. Questions also arise about next steps

1  

All cancer statistics presented in this report exclude non-melanoma skin cancers.



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From Cancer Patient to Cancer Survivor: Lost in Transition 1 Introduction The ranks of cancer survivors in the United States are 10 million strong and growing, in large part because of advances in early detection and cancer treatment. Some cancers that were once uniformly fatal, such as testicular cancer, are now cured in nearly all cases. And many of those who get common cancers—cancers of the breast, colon and rectum, and prostate—become long-term survivors. Other people may be living with a cancer such as lymphoma that is controlled with ongoing or periodic treatment, but not cured. All of these individuals can be considered survivors of their disease, and also of their treatment. All major forms of treatment—surgery, chemotherapy, hormone therapy, and radiation therapy—can have unwanted, long-term effects on tissues and organ systems that impair a person’s health and quality of life in small and large ways. Increasing the risks of these late effects are the use of multiagent and intensive administrations of therapies that improve survival, but are more toxic. Some anticancer drugs are taken for extended periods—years instead of months—obscuring the delineation of the end of cancer treatment. Each phase of survivorship brings different concerns to the fore. For many of the 1.4 million individuals diagnosed with cancer each year, resuming the routines of work and family life after completing active treatment may be especially difficult.1 Anxiety over the possibility of cancer recurrence may dominate at this time. Questions also arise about next steps 1   All cancer statistics presented in this report exclude non-melanoma skin cancers.

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From Cancer Patient to Cancer Survivor: Lost in Transition to care: Who should I see? What tests should I have? How can I manage my cancer- and treatment-related symptoms? What services are available to help me and my family cope? Half of all men and one-third of women in the United States will develop cancer in their lifetime, so these are questions many of us will face. Today, 1 in 30 Americans has a history of cancer, and among those 65 and older, the figure is 1 in 7. A new paradigm of survivorship is emerging that addresses the needs of this group and the issues that face society in providing for them—for us, in the greater sense. This Institute of Medicine (IOM) report explores this new territory and offers a plan for moving ahead. The committee’s report focuses on adult survivors of cancer during the phase of care that follows primary treatment and (1) examines the medical and psychosocial consequences of cancer and its treatment; (2) defines quality care for cancer survivors and strategies to achieve it; (3) explores social and economic hardships facing cancer survivors related to, for example, problems in insurance coverage and employment discrimination, and proposes policies to ameliorate such problems; and (4) describes how we can improve what we know about the quality of care and quality of life for cancer survivors and their families. This study could hardly be better timed to ensure both public and policy attention. The committee’s report builds on a significant body of work. In particular, the President’s Cancer Panel concluded a series of public meetings and in June 2004 released its report, Living Beyond Cancer, with policy recommendations for consideration (President’s Cancer Panel, 2004). In addition, in April 2004 the Centers for Disease Control and Prevention (CDC) and the Lance Armstrong Foundation released A National Action Plan for Cancer Survivorship to advance public health strategies (CDC and LAF, 2004). Cancer has recently overtaken heart disease as the leading cause of death in the United States among those under age 85 (Jemal et al., 2005), and the public views cancer as the most important health problem facing the nation (Blendon et al., 2001). Consumer advocacy organizations have long been interested in improving the care provided to cancer patients and survivors (NCCS, 1996). ORIGINS OF THE STUDY The idea to embark on a major study of cancer survivorship within the National Academies originated with the National Cancer Policy Board (NCPB). The NCPB was established in 1997 in the IOM and the National Research Council’s Division of Earth and Life Studies at the request of the National Cancer Institute (NCI), the National Institutes of Health, and the President’s Cancer Panel. The NCPB identified emerging policy issues in the nation’s effort to combat cancer, and prepared reports that address those

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From Cancer Patient to Cancer Survivor: Lost in Transition issues, including a series of reports on topics ranging from cancer prevention to end-of-life care. The Board’s first major report, Ensuring Quality Cancer Care (IOM, 1999), recommended strategies to promote evidenced-based, comprehensive, compassionate, and coordinated care throughout the cancer care trajectory, but its focus was on primary treatment and it did not directly address the quality of care for cancer survivors. However, it noted that such issues needed attention. This report, then, is part of a Board initiative to address quality concerns for cancer survivors with an emphasis on what happens following the primary treatment of cancer. The Board report, Improving Palliative Care for Cancer (IOM, 2001), addressed the need for quality care at the end of life for those who die from cancer and symptom management throughout the care trajectory. The NCPB decided to separate its exploration of cancer survivorship into three reports. The first report examined childhood cancer survivorship (IOM, 2003a). Some policy issues are common to both children and adults who have survived cancer (e.g., insurance and employment concerns); however, unique features of pediatric treatment and health care delivery systems led to the decision to pursue childhood and adult cancer survivorship issues independently. The second report addressed one particular aspect of survivorship, focusing on psychosocial needs of survivors, using female breast cancer as the best studied example (IOM, 2004). This third report is intended as a comprehensive look at the current status and future requirements of the large and growing cohort of adult survivors. The first two reports were carried out by the NCPB itself, but the Board decided to establish a separate and independent committee for this third report in order to assemble the large number of experts needed to consider the variety and importance of issues relevant to the diverse body of adult survivors who are increasingly coming to the attention of the public, cancer care providers, and policy makers. In its deliberations, the committee has adopted the definition of cancer survivor used by NCI’s Office of Cancer Survivorship, “An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition” (NCI, 2004). In applying this definition, however, the committee decided to focus its attention on a relatively neglected phase of the cancer care trajectory, the period following first diagnosis and treatment and prior to the development of a recurrence of the initial cancer or death. The committee identified several areas of concern for individuals during this monitoring/surveillance period, for example, the lack of clear evidence on recommended follow-up care and the unique psychosocial needs of cancer survivors following treatment, a time when frequent contact with

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From Cancer Patient to Cancer Survivor: Lost in Transition cancer care providers often abruptly ceases. This particular phase of care has been relatively unexamined. The committee also addressed the needs of those individuals with cancer living with disease on an intermittent or chronic basis. Given prior work of the IOM on palliative care (IOM, 2001) and care at the end of life (IOM, 1997, 2003b), the committee decided to exclude these broad areas from their consideration for the purposes of this report. Also, information on the impact of cancer survivorship on family members is just beginning to emerge and consequently this report focuses more on the experience of individuals with a history of cancer. FRAMEWORK OF THE REPORT This report considers cancer survivorship as a medical and social condition with major economic implications, and as such it examines the long-term medical and social consequences of cancer treatment and survival and assesses the quality of care provided to cancer survivors, individuals living beyond their primary cancer treatment. Chapter 2 characterizes adult survivors of cancer and the trends in cancer incidence and mortality that have contributed to the growth of this population. Chapter 3 reviews the long-term consequences of cancer and its treatment, and the need for services following treatment for cancer (includes recommendations 1, 2, and 3). Chapter 4 defines optimal care for cancer survivors; identifies barriers to the delivery of such care; describes alternative models for the delivery of comprehensive, coordinated post-treatment care; reviews what is known about the existing U.S. infrastructure for delivering survivorship care; and proposes steps to improve the delivery of survivorship care (includes recomendations 4, 5, and 6). Chapter 5 discusses the adequacy of professional education and training on cancer survivorship (includes recommendation 7). Chapter 6 reviews employment, insurance, and economic issues of relevance to cancer survivors (includes recommendations 8 and 9). Chapter 7 surveys ongoing clinical and health services research aimed at improving care and outlines research strategies to prevent and ameliorate the consequences of the late effects of cancer and its treatment (includes recommendation 10). The committee met and deliberated at three meetings—in Woods Hole, MA (July 28 and 29, 2004), Irvine, CA (October 27, 28, and 29, 2004), and Washington, DC (March 24 and 25, 2005). The committee benefited from presentations from the following individuals at their meetings:

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From Cancer Patient to Cancer Survivor: Lost in Transition Karen Antman, Deputy Director for Translational and Clinical Sciences, NCI Noreen Aziz, Program Director, Office of Cancer Survivorship, NCI Peter Bach, Senior Adviser, Office of the Administrator, Centers for Medicare and Medicaid Services Kevin Brady, Acting Director, Division of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health Promotion, CDC Mark Clanton, Deputy Director, NCI Robert Hiatt, Director of Population Science and Deputy Director of the University of California-San Franscisco (UCSF) Comprehensive Cancer Center Margaret Kripke, member, President’s Cancer Panel member and Chief Academic Officer, M.D. Anderson Cancer Center Julia Rowland, Director, Office of Cancer Survivorship, NCI Jerome Yates, National Vice President for Research, American Cancer Society The committee benefited from estimates of conditional survival produced by Eric Feurer and colleagues at the National Cancer Institute. The committee also benefited from analyses completed by Robert Friedland and colleagues at the Georgetown Center on an Aging Society on cancer-related medical expenditures as reported in the Medical Expenditure Panel Survey (see Chapter 6). REFERENCES Blendon RJ, Scoles K, DesRoches C, Young JT, Herrmann MJ, Schmidt JL, Kim M. 2001. Americans’ health priorities: Curing cancer and controlling costs. Health Aff (Millwood) 20(6):222–232. CDC and LAF (Centers for Disease Control and Prevention and the Lance Armstrong Foundation). 2004. A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies. Atlanta, GA: CDC. IOM (Institute of Medicine). 1997. Approaching Death: Improving Care at the End of Life. Field MJ, Cassell CK, eds. Washington, DC: National Academy Press. IOM. 1999. Ensuring Quality Cancer Care. Hewitt M, Simone JV, eds. Washington, DC: National Academy Press. IOM. 2001. Improving Palliative Care for Cancer. Foley KM, Gelband H, eds. Washington, DC: National Academy Press. IOM. 2003a. Childhood Cancer Survivorship: Improving Care and Quality of Life. Hewitt M, Weiner SL, Simone JV, eds. Washington, DC: The National Academies Press. IOM. 2003b. Describing Death in America: What We Need to Know. Lunney JR, Foley KM, Smith TJ, Gelband H, eds. Washington, DC: The National Academies Press. IOM. 2004. Meeting Psychosocial Needs of Women with Breast Cancer. Hewitt M, Herdman R, Holland J, eds. Washington, DC: The National Academies Press.

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From Cancer Patient to Cancer Survivor: Lost in Transition Jemal A, Murray T, Ward E, Samuels A, Tiwari RC, Ghafoor A, Feuer EJ, Thun MJ. 2005. Cancer statistics, 2005. CA Cancer J Clin 55(1):10–30. NCCS (National Coalition for Cancer Survivorship). 1996. Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability. Clark EJ, Stovall EL, Leigh S, Siu AL, Austin DK, Rowland JH. Silver Spring, MD: NCCS. NCI (National Cancer Institute). 2004. About Survivorship Research: Survivorship Definitions. [Online]. Available: http://dccps.nci.nih.gov/ocs/definitions.html [accessed April 9, 2004]. President’s Cancer Panel. 2004. Living Beyond Cancer: Finding a New Balance. Bethesda, MD: National Cancer Institute.