1
Introduction

Most children and young adults diagnosed with cancer prior to 1970 had little hope of being cured (Smith and Ries, 2002). By 1997, cure rates, as measured in 5-year survival, had risen to 78 percent (Ries et al., 2002), largely as a result of the development of intensive multimodal treatments. Most patients who survive cancer have been exposed to combinations of two or three of the mainstays of cancer treatment: chemotherapy, radiation therapy, and surgery. Although impressive gains in survival have been achieved, late effects of treatment often impair survivors’ health and quality of life. Success in treating disease has been tempered by the knowledge that the cure has often came at a price, which may not be manifest until many years after completion of therapy.

Survivors of the modern era of childhood cancer therapy are beginning to enter their fourth decade of life and significant consequences of their treatment have already been observed. Among the well-documented late effects are impairments in learning, growth and maturation, and cardiac function. As this cohort of children and young adults ages, it is likely that additional late effects will arise. And as treatments change, so too will their sequelae, so that ongoing surveillance will be needed to link childhood treatments to adult onset late effects. Models of health care delivery, surveillance, and research are beginning to take shape, but to date there has been no systematic review of the policy implications of this relatively new era of childhood cancer survivorship.



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1 Introduction Most children and young adults diagnosed with cancer prior to 1970 had little hope of being cured (Smith and Ries, 2002). By 1997, cure rates, as measured in 5-year survival, had risen to 78 percent (Ries et al., 2002), largely as a result of the development of intensive multimodal treatments. Most patients who survive cancer have been exposed to combinations of two or three of the mainstays of cancer treatment: chemotherapy, radiation therapy, and surgery. Although impressive gains in survival have been achieved, late effects of treatment often impair survivors’ health and quality of life. Success in treating disease has been tempered by the knowledge that the cure has often came at a price, which may not be manifest until many years after completion of therapy. Survivors of the modern era of childhood cancer therapy are beginning to enter their fourth decade of life and significant consequences of their treatment have already been observed. Among the well-documented late effects are impairments in learning, growth and maturation, and cardiac function. As this cohort of children and young adults ages, it is likely that additional late effects will arise. And as treatments change, so too will their sequelae, so that ongoing surveillance will be needed to link childhood treatments to adult onset late effects. Models of health care delivery, surveillance, and research are beginning to take shape, but to date there has been no systematic review of the policy implications of this relatively new era of childhood cancer survivorship.

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ROLE OF THE NATIONAL CANCER POLICY BOARD The National Cancer Policy Board (the Board) was established in March 1997 at the Institute of Medicine (IOM) and National Research Council to address issues that arise in the prevention, control, diagnosis, treatment, and palliation of cancer. The 21-member board includes health care consumers, providers, and investigators in several disciplines (see membership roster). This report is part of a Board initiative to address issues of concern for cancer survivors with an emphasis on what happens following the primary treatment of cancer. The Board’s 1999 report, Ensuring Quality Cancer Care (Institute of Medicine, 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 issues related to the delivery of cancer care to children. In its deliberations, the Board has applied the definition of cancer survivorship used by the National Cancer Institute’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.” (http://dccps.nci.nih.gov/ocs/definitions.html, accessed March 7, 2003). This report, which focuses on childhood cancer survivors and their care after primary treatment,1 will be followed by a companion report addressing issues of relevance to survivors of adult cancer. Some policy issues are common to both groups (e.g., insurance and employment concerns); however, unique features of pediatric treatment and health care delivery systems led to the decision to publish separate reports on childhood and adult cancer survivorship. The Board report Improving Palliative Care for Cancer (Institute of Medicine, 2001), addressed the need for quality care at the end of life for those who die from cancer, including children. A recent IOM report, When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, further examines policies to improve care (Institute of Medicine, 2002). A Board report related to survivorship will be issued later in 2003 based, in part, on a two-day IOM workshop held October 28-29, 2002, “Meeting Psychosocial Needs of Women With Breast Cancer,” with support from the Longaberger Company through the American Cancer Society. Several background papers commissioned by the Board were essential to this report:2 1   In this report, childhood refers to individuals under age 20. 2   These papers are available at www.IOM.edu/ncpb.

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Pediatric Cancer Survivors: Past History and Future Challenges, Anna T. Meadows Late Effects of Treatment for Cancer During Childhood and Adolescence, Daniel Green Neurocognitive Late Effects in Pediatric Cancer, Raymond Mulhern Quality of Life Issues and Cancer Survivorship, Brad Zebrack and Lonnie Zeltzer Research Involving Long Term Survivors of Childhood and Adolescent Cancer: Methodologic Considerations, Leslie Robison Cancer Survivorship: Issues Impacting Design and Conduct of Clinical Trials, Sharon Murphy Longitudinal Cancer-Related Health Care for Adult Survivors of Childhood Cancer, Kevin Oeffinger Cognitive Late Effects of Childhood Cancer and Treatment: Issues for Survivors, F. Daniel Armstrong, Long-term Survivor Programs: A Paradigm for the Advanced Practice Nurse, Alice G. Ettinger The Board heard from the following cancer survivorship specialists and representatives of federal agencies at the Board’s quarterly meeting in July 2001: Anna T. Meadows, MD, The Children’s Hospital of Philadelphia, provided an overview of childhood cancer survival; Daniel Green, MD, Roswell Park Cancer Institute, discussed late effects of treatment for childhood cancer; Raymond Mulhern, PhD, St. Jude Children’s Research Hospital, described neurocognitive late effects in pediatric cancer; Leslie Robison, PhD, University of Minnesota Cancer Center, described epidemiologic and research issues; Sharon Murphy, MD, Children’s Memorial Hospital, Chicago, reviewed clinical trial issues in survivorship research; Lonnie Zeltzer, MD, David Geffen School of Medicine at UCLA discussed psychosocial and behavioral outcomes in childhood cancer; and Julia Rowland, PhD, Director of the National Cancer Institute Office of Cancer Survivorship discussed federal research initiatives in childhood survivorship. Perspectives on health care delivery were discussed at the January 2002 meeting where the Board heard from: Kathy Ruble, RN, and Cindy Schwartz, MD, of the Johns Hopkins Pediatric Oncology Program;

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Smita Bhatia, MD, representing the Children’s Oncology Group; Mark Greenberg, MD, from the Pediatric Oncology Group of Ontario (POGO); and Merle McPherson, MD, MPH, from the Health Services and Resources Administration (HRSA), Maternal and Child Health Bureau, Division of Services for Children With Special Health Needs. Margaret McManus of the Maternal & Child Health Policy Research Center addressed the Board at its July 2002 meeting regarding the financing and delivery of care to children with special health care needs. Eric Trabert, a student at the University of Michigan School of Public Health, completed a review of programs providing follow-up care to cancer survivors in the summer of 2001 (see Chapter 5). Invaluable insights of cancer survivors and their families were solicited through the internet by Nancy Keene (Keene, 2002), the co-author of Childhood Cancer Survivors: A Practical Guide to Your Future (Keene et al., 2000). Concerns related to cancer survivorship of consumers, health care providers, administrators, and others were also identified through a two-page inquiry placed in magazines and journals with a wide circulation (i.e., In Touch and Oncology News International, both published by PRR, Inc.). FRAMEWORK OF THE REPORT The purpose of this report is to 1) characterize the medical and psychosocial consequences of surviving childhood cancer; 2) identify essential elements of quality care; 3) explore some of the social and economic consequences facing cancer survivors such as under-insurance and employment discrimination; 4) assess the status of applied clinical and health services research; and 5) propose policies to improve the quality of care and quality of life for childhood cancer survivors and their families. Chapter 2 characterizes the many types of childhood cancer, the frequency with which they occur, the likelihood that treatment will result in survival at five years, and the prevalence of cancer survivors in the general population. Chapter 3 describes the trajectory of cancer care and provides an overview of the treatments of childhood cancer that are associated with late effects. Chapter 4 discusses late effects of treatment and disease that can affect survivors of childhood cancer into adulthood. Chapter 5 defines appropriate care for survivors of childhood cancer and characterizes the cancer care infrastructure, including sites and providers of care.

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Chapter 6 reviews educational services appropriate for childhood cancer survivors. Chapter 7 discusses two potential social consequences of cancer survivorship—insurance and employment discrimination. Chapter 8 surveys ongoing clinical and health services research aimed at improving care and outlines research strategies to prevent and ameliorate the consequences of late effects of childhood cancer. Chapter 9 summarizes key findings and presents the Board’s recommendations for action by Congress, health care purchasers, health plans, health care providers, individual consumers, and health services researcher. REFERENCES Institute of Medicine. 1999. Ensuring Quality Cancer Care. Washington, DC: National Academy Press. Institute of Medicine. 2001. Improving Palliative Care for Cancer. Washington, DC: National Academy Press. Institute of Medicine. 2002. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: National Academy Press. Keene N. 2002. Solicitation of concerns of cancer survivors and their family through survivorship listserv and provided to the National Cancer Policy Board. Keene N, Hobbie W, Ruccione K. 2000. Childhood Cancer Survivors: A Practical Guide to Your Future. Sebastopol, CA: O’Reilly and Associates, Inc. Ries LAG, Eisner MP, Kosary CL, Hankey BF, Miller BA, Clegg L, Edwards BK, Editors. 2002. SEER Cancer Statistics Review, 1973-1999. Bethesda, MD: National Cancer Institute. Smith MA, Ries LAG. 2002. Childhood Cancer: Incidence, Survival, and Mortality. Pizzo PA, Poplack DG, Eds. In: Principles and Practice of Pediatric Oncology. 4th ed. Philadelphia: Lippincott Williams & Wilkins.