Summary

The treatment of childhood cancer is one of oncology’s great success stories. Most children and young adults under age 20 diagnosed with cancer prior to 1970 had little hope of being cured. Since then, cure rates, as measured in five-year survival, have increased to 78 percent (Ries et al., 2002). Consequently, the size of the population of survivors of childhood cancer has grown dramatically—to 270,000 individuals of all ages as of 1997. This translates into about 1 in 640 adults ages 20 to 39 who have such a history.

Not widely recognized are the unintended consequences of this success. Along with the impressive gains in survival have come “late effects,” which may impair some survivors’ health and quality of life. These late effects include complications, disabilities, or adverse outcomes that are the result of the disease process, the treatment, or both. Patterns of late effects have emerged among subgroups of childhood cancer survivors that have contributed to an appreciation of cancer as a chronic disease with implications for continuing care.

As many as two-thirds of childhood cancer survivors are likely to experience at least one late effect, with perhaps one-fourth of survivors experiencing a late effect that is severe or life threatening. The most common late effects of childhood cancer are neurocognitive and psychological, cardiopulmonary, endocrine (e.g., those affecting growth and fertility), musculoskeletal, and second malignancies. The emergence of late effects depends on many factors, including age at diagnosis and treatment, exposures to chemotherapy and radiation used during treatment (doses and parts of



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Summary The treatment of childhood cancer is one of oncology’s great success stories. Most children and young adults under age 20 diagnosed with cancer prior to 1970 had little hope of being cured. Since then, cure rates, as measured in five-year survival, have increased to 78 percent (Ries et al., 2002). Consequently, the size of the population of survivors of childhood cancer has grown dramatically—to 270,000 individuals of all ages as of 1997. This translates into about 1 in 640 adults ages 20 to 39 who have such a history. Not widely recognized are the unintended consequences of this success. Along with the impressive gains in survival have come “late effects,” which may impair some survivors’ health and quality of life. These late effects include complications, disabilities, or adverse outcomes that are the result of the disease process, the treatment, or both. Patterns of late effects have emerged among subgroups of childhood cancer survivors that have contributed to an appreciation of cancer as a chronic disease with implications for continuing care. As many as two-thirds of childhood cancer survivors are likely to experience at least one late effect, with perhaps one-fourth of survivors experiencing a late effect that is severe or life threatening. The most common late effects of childhood cancer are neurocognitive and psychological, cardiopulmonary, endocrine (e.g., those affecting growth and fertility), musculoskeletal, and second malignancies. The emergence of late effects depends on many factors, including age at diagnosis and treatment, exposures to chemotherapy and radiation used during treatment (doses and parts of

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body exposed), and the severity of initial disease. Complicating the management of late effects is their variable nature. Some late effects are identified early in follow-up—during childhood or adolescent years—and resolve without consequence. Others may persist or develop in adulthood to become chronic problems or influence the progression of other diseases associated with aging. Understanding late effects is further complicated by the constant evolution of treatments. Cohorts of patients, representing different treatment eras, may experience unique sets of late effects. Some survivors of childhood cancer have positive psychosocial outcomes and there is a growing interest in better understanding resiliency among survivors. There has been no systematic review of the policy implications of this relatively new era of childhood cancer survivorship. In this report, the National Cancer Policy Board proposes a comprehensive policy agenda that links improved health care delivery, investments in education and training, and expanded research to improve the long-term outlook for survivors of childhood cancer. In its deliberations, the Board has applied the definition of cancer survivorship used by the National Cancer Institute’s (NCI) 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, focused on the experience of childhood cancer survivors following treatment, is the first of a series of reports concerning cancer survivorship. Forthcoming is a companion report on survivors of adult cancer. The distinct biology of childhood cancers, the consequences to development of children of early onset disease, and the separate care systems associated with pediatric and adult cancer contributed to the Board’s decision to issue separate reports. FINDINGS AND RECOMMENDATIONS Developing Guidelines for Care Recognizing the serious consequences of late effects, professional organizations and advocacy groups have recommended that an organized system of care be in place to address them. While there is general agreement that survivors of childhood cancer should be systematically followed up, there is no consensus regarding where such care should take place, who should provide it, and what its components should be. Some aspects of follow-up care are understood to be necessary, though they may not be implemented. These include surveillance for recurrence of the original cancer or the development of a new cancer, assessing the psy-

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chosocial needs of survivors and their families, monitoring growth and maturation, counseling regarding preventive health, and testing for specific risk factors (e.g., exposure to hepatitis C following blood transfusions) or late effects (e.g., heart abnormalities, cognitive dysfunction, fertility impairment). Not well understood, however, is the optimal periodicity of follow-up contact, the value of specific screening/monitoring tests, and the effectiveness of interventions to ameliorate some late effects. Follow-up protocols are available, but they have generally been developed by individual institutions and vary in their recommendations. The lack of clarity regarding the effectiveness of interventions contributes to problems with health insurance reimbursement. Recommendation 1: Develop evidence-based clinical practice guide lines for the care of survivors of childhood cancer. The National Cancer Institute should convene an expert group of consumers, providers, and researchers to review available clinical practice guidelines and agree upon an evidence-based standard for current practice. For areas where bodies of evidence have not been rigorously evaluated, the Agency for Healthcare Research and Quality (AHRQ) Evidence Practice Centers (EPCs) should be charged to review the evidence. When evidence upon which to make recommendations is not available, the expert group should identify areas in need of research. Designing Systems of Care Responsive to Survivors’ Health Care Needs In some ways, the follow-up of childhood cancer survivors is made easier by the extent to which children with cancer are treated in specialized centers of care. As many as 50 to 60 percent of children with cancer are initially treated in specialized cancer centers, but only an estimated 40 to 45 percent are receiving follow-up care in specialized clinics (Oeffinger, 2002). Institutions that are members of the National Cancer Institute-funded pediatric cooperative group, the Children’s Oncology Group (COG), are required to have on-site follow-up programs, but relatively few of them appear to have comprehensive, multidisciplinary programs. The Board has developed a description of the functions of an ideal follow-up system for survivors of childhood cancer (Box S.1), but a minimum set of standards is needed to guide institutions in their development of programs to meet the wide-ranging needs of childhood cancer survivors. According to the Board’s review, four supportive care components are especially important in follow-up programs: 1) services to address the psychological implications of cancer for survivors and their families; 2) educational support through school transition programs; 3) personnel to assist

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Box S.1 Functions of an Ideal Follow-Up System for Survivors of Childhood Cancer Provide services Identify late effects (or the risk of late effects) Review prior disease history and treatments Conduct clinical examinations and tests Evaluate symptoms Develop plan for long-term surveillance Coordinate specialists involved in diagnosis and treatment of late effects (e.g, cardiologists, neurologists) Ameliorate late effects through rehabilitation services (e.g. physical therapy, occupational therapy) Provide psychosocial support Counsel regarding educational and occupational issues Counsel regarding disease prevention, health promotion Refer to clinical trial or other research initiative Provide care coordination/case management (including the transition from pediatric to adult care) Provide family-based care and education and outreach to survivors and their families in the community Educate and train professionals Consult with primary care providers Consult with schools and educators Provide long-term perspective to oncology care providers Alert providers and researchers to new late effects Train primary care and oncology care providers Conduct research Measure prevalence of late effects Identify etiology of late effects Evaluate effectiveness of interventions to ameliorate late effects Evaluate and modify treatment approaches to minimize late effects Develop standards of follow-up care with issues related to insurance and employment problems; and 4) a plan to facilitate the transition of grown survivors of childhood cancer into adult systems of care. A number of approaches have been proposed to address the needs of childhood cancer survivors, from follow-up clinics located in cancer centers to a national virtual consultation service organized through the internet. For many survivors and their families, geographic distance from a cancer center precludes easy access to follow-up. Most survivors are in contact with primary care providers, but the extent to which cancer-related issues

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are addressed in this context is not known. Few examples of collaborative practice, an approach that relies on a planned working together of oncology providers and primary care physicians, have been described. Such a model could facilitate the necessary transition from pediatric-based care to adult care as childhood cancer survivors mature into adulthood. Cancer survivors, while having some unique needs, are similar to survivors of other chronic illness. There are likely opportunities to develop efficient systems of care to address at least some of the needs of individuals with a broad range of chronic illnesses and conditions. Survivors of childhood cancer with neurocognitive impairment, for example, share medical and long-term care needs with children who have brain injuries and other neurologic conditions. Such children may be followed by a neurologist, but often do not have easy access to support services needed to accommodate adjustment to school, work, or independent living. Recommendation 2: Define a minimum set of standards for systems of comprehensive, multidisciplinary follow-up care that link specialty and primary care providers, ensure the presence of such a system within institutions treating children with cancer, and evaluate alter nate models of delivery of survivorship care. The National Cancer Institute should convene an expert group of consumers, providers, and health services researchers to define essential components of a follow-up system and propose alternative ways to deliver care. Consideration could be given to long-term follow-up clinics, collaborative practices between oncology and primary care physicians, and other models that might be dictated by local practices and resources, patient and family preferences, geography, and other considerations. Any system that is developed should assure linkages between specialty and primary care providers. A set of minimal standards for designation as a late-effects clinic should be endorsed and adopted by relevant bodies such as COG, the American Society of Pediatric Hematology/Oncology, the American Academy of Pediatrics, the American Society of Clinical Oncology, the American College of Surgeons’ Commission on Cancer, and NCI in its requirements for approval for comprehensive cancer centers. COG members and other institutions treating children with cancer should ensure that a comprehensive, multidisciplinary system of follow-up care is in place to serve the needs of patients and their families discharged from their care. State comprehensive cancer control plans being developed and implemented with support from the Centers for Disease Control and Preven-

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tion (CDC) should include provisions to ensure appropriate follow-up care for cancer survivors and their families. Grant programs of the Health Resources and Services Administration (e.g., Special Projects of Regional and National Significance [SPRANS]) should support demonstration programs to test alternate delivery systems (e.g., telemedicine, outreach programs) to ensure that the needs of different populations are met (e.g., ethnic or minority groups, rural residents, and individuals living far from specialized late-effects clinics). Needed also are evaluations to determine which models of care confer benefits in terms of preventing or ameliorating late effects and improving quality of life, and which models survivors and their families prefer. Raising Survivors’ Awareness of Late Effects Recent research shows that the majority of cancer survivors are unaware of their risk for late effects or the need for follow-up care. They also lack specific information regarding their disease history and treatment that would be needed by a clinician to provide appropriate follow-up care. Effective interventions are available to prevent or ameliorate some late effects and a failure to receive appropriate follow-up care can be life threatening and compromise quality of life. Recommendation 3: Improve awareness of late effects and their impli cations for long-term health among childhood cancer survivors and their families. Clinicians providing pediatric cancer care should provide survivors and their families written information regarding the specific nature of their cancer and its treatment, the risks of late effects, and a plan (and when appropriate, referrals) for follow-up. Discussion about late effects should begin with diagnosis. Public and private sponsors of health education (e.g., NCI, American Cancer Society) should launch informational campaigns and provide support to survivorship groups that have effective outreach programs. Augmenting Professional Education and Training If survivorship care is to expand and improve, additional professional education and training opportunities will be needed. Advanced practice pediatric oncology nurses have provided leadership in establishing and managing survivorship clinics, but there are relatively few such trained

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nurses and the oncology content in most nursing training programs is limited. Oncologists who completed their training more than a decade ago may not be familiar with the full scope of late effects now recognized, and given the cursory coverage of survivorship issues in medical texts and curricula, there is a need for continuing medical education and other educational opportunities for oncologists. Similarly, shortcomings in training of other personnel who might practice within a follow-up care system (e.g., psychologists, oncology social workers) need to be addressed. As the number of childhood cancer survivors increases, primary care providers will encounter childhood cancer survivors in their practices more often. However, these providers may miss opportunities to intervene and to ameliorate late effects because they have little experience with childhood cancer survivors and lack training. Recommendation 4: Improve professional education and training re garding late effects and their management for both specialty and pri mary care providers. Professional societies should act to improve primary care providers’ awareness through professional journals, meetings, and continuing education opportunities. Primary care training programs should include information about the late effects of cancer in their curricula. NCI should provide easy-to-find information on late effects of childhood cancer on its website (e.g., through the Physician Data Query [PDQ], which provides up-to-date information on cancer prevention, treatment, and supportive care). Oncology training programs should organize coursework, clinical practicum, and continuing education programs on late effects of cancer treatment for physicians, nurses, social workers, and other providers. Oncology professional organizations should, if they have not done so already, organize committees or subcommittees dedicated to issues related to late effects. Oncology Board examinations should include questions related to late effects of cancer treatment. Interdisciplinary professional meetings that focus on the management of late effects should be supported to raise awareness of late effects among providers who may encounter childhood cancer survivors in their practices (e.g., cardiologists, neurologists, fertility specialists, psychologists).

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Strengthening Public Programs Serving Childhood Cancer Survivors Some of the concerns of childhood cancer survivors are unique to their cancer and its treatment. However, many survivors experiencing late effects have concerns that are shared by children and young adults with other chronic illnesses and disabling conditions. Several of the key public programs that serve such children could be strengthened to assure that cancer survivors receive supportive care. These programs are housed in the U.S. Department of Health and Human Services (DHHS) and in the U.S. Department of Education (DOE). Coordination among public programs serving children and young adults is generally poor. There are differing eligibility criteria, covered services, and relationships among federal, state, and local partners. No one program has a specific mission to address the special needs of survivors of childhood cancers or to provide the full spectrum of services these children need. An initiative aimed at improving services for children with special health care needs, if successfully implemented, could address some of these outstanding problems. The Maternal and Child Health Bureau within the Health Resources and Services Administration (HRSA) and key partners (e.g., provider and consumer groups), as part of the DHHS Healthy People 2010 initiative, have launched an effort to assure that the needs of families with children with special health care needs are met. Progress toward meeting these needs is being measured according to the following set of program objectives (Department of Health and Human Services, 2001): All children with special health care needs will receive coordinated, ongoing comprehensive care within a medical home. All families of children with special health care needs will have adequate private and/or public insurance to pay for the services they need. All children will be screened early and continuously for special health care needs. Families of children with special health care needs will partner in decision making at all levels and will be satisfied with the services they receive. Community-based service systems will be organized so families can use them easily. All youth with special health care needs will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence. The public programs available to help accomplish these important goals include:

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The Maternal and Child Health Block Grant and its program for Children with Special Health Care Needs (DHHS/HRSA); The Medicaid Program (DHHS/Centers for Medicare and Medicaid Services [CMS]); The State Children’s Health Insurance Program (S-CHIP) (DHHS/ CMS); The Bureau of Primary Health Care, its network of community health centers, and its supported health care professional workforce (DHHS/ HRSA); The Early Intervention Program (DOE); Special Education Programs for Individuals with Disabilities (DOE). All of these federal programs operate in partnership with state and local governments. Each program has its own eligibility requirements, which may be based on health-related criteria and/or income and assets. Each state has a program for Children with Special Health Care Needs (CSHCN), funded in part through the Maternal and Child Health Block Grant. The program provides health and support services to children “who have, or are at increased risk for, chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally” (http://www.mchb.hrsa.gov/, accessed March 7, 2003). In 1989, Congress amended the Maternal and Child Health Block Grant authorization to require state CSHCN programs “to provide and to promote family-centered, community-based, coordinated care (including care coordination services…) for children with special health care needs…” and to “facilitate the development of community-based systems of services for such children and their families” (Gittler, undated). State CSHCN programs now offer training, finance community support organizations, and promote policies to further coordination of care and communication. These safety net programs have the potential to extend supportive services to survivors of childhood cancer and to provide links between highly specialized care and primary care for these children. State programs, however, currently provide an inconsistent level of services and have varying eligibility criteria that may exclude survivors of childhood cancer. States coordinate their CSHCN, Medicaid, and S-CHIP programs, but the degree and purposes of coordination differ. Medical and support services should be coordinated among federal, state and local programs. To meet the goals of continual monitoring for special health care needs, and particularly to ensure that survivors of childhood cancer have a medical home, much stronger systems of care are needed. Community-based primary care providers and cancer center-based specialists must be edu

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cated about the programs and services available to meet the needs of these individuals and their families. Simpler communication systems that assure prompt information-sharing among all those caring for these children and young adults must be established and supported, and must be responsive to family concerns and preferences. Eligibility and program requirements that create gaps in services and restrict access to appropriate care and support services by survivors of childhood cancer must be changed. Capacity building that emphasizes the medical home, communication among primary care providers and specialists caring for and monitoring survivors of childhood cancer, and adequate support and educational services for these children is essential. Recommendation 5: The Health Resources and Services Admini stration’s Maternal and Child Health Bureau and its partners should be fully supported in implementing the Healthy People 2010 goals for Children with Special Health Care Needs. These efforts include a national communication strategy, efforts at capacity building, setting standards, and establishing accountability. Improving Access to Health Care Services Ideally, all Americans, regardless of medical history or employment status, would have health insurance coverage and access to affordable, quality medical care. Broad-based national health insurance reform is unlikely to take place in the near future. Instead, cancer survivors’ best hope for significant insurance reform rests with federal and state legislation that targets specific issues. Because federal legislation generally covers only federal programs, such as Medicare and Medicaid, many insurance reforms must be addressed at the state level. States could, for example, expand access to health insurance through increased support of state high-risk insurance pools. Such insurance pools provide coverage to individuals who have been denied private health insurance in the individual market. Roughly half of states have such programs and among those that do, the pools have had a limited impact in making insurance available and affordable to otherwise uninsurable individuals because of high premiums, deductibles, and copayments, and restricted annual and lifetime benefits (Achman and Chollet, 2001). A recent federal initiative helps states create high-risk pools to increase access to health coverage (DHHS press release, 2002). In the absence of major changes in the delivery and financing of U.S. health care, incremental reforms regarding particular benefits or improved patient protections must be considered carefully because when reforms increase the costs of insurance products, they can unintentionally increase rates of

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uninsurance. The IOM’s Committee on the Consequences of Uninsurance will consider selected programs and proposals involving insurance-based strategies to expand health insurance coverage (www.iom.edu) in the sixth in a series of reports that address problems related to uninsurance. Despite state efforts to reduce the number of uninsured children through S-CHIP, often through expansions of state Medicaid programs, many children remain uninsured. The Medicaid Program and S-CHIP insure more than one-quarter of American children, all of them living in families with low incomes. Many of the post-treatment services needed by survivors of childhood cancer with Medicaid coverage would be available through the Early and Periodic Screening, Diagnosis and Treatment (EPSDT) program. These Medicaid services are dictated by federal statute and include “diagnostic, screening, preventive, and rehabilitative services, including medical or remedial services recommended for the maximum reduction of physical or mental disability and restoration of an individual to the best possible functional level (in facility, home, or other setting)” (http://www.healthlaw.org/pubs/19990323epsdtfact.html, accessed March 9, 2003). In practice, several barriers to EPSDT have limited use of services, including a shortage of providers participating in the Medicaid program, beneficiaries not being informed of the program and its benefits, and issues related to cost. Many individuals insured privately or through the Medicaid program are enrolled in fully capitated managed care arrangements. Managed care plans may control the use of specialists, especially those practicing outside of their plans’ networks. Some research suggests that the services and specialists needed by children with special health care needs are not always available within plans and their networks. Contracts between insurance purchasers (e.g., employers, state Medicaid officials) and health plans should ensure an appropriate complement of services and range of providers to meet the needs of children and young adults with special health care needs. These requirements should be based on evidence of the effectiveness of services. For individuals with inadequate insurance and financial resources, there is a patchwork of public and private programs for primary care. Full support of federally supported Community and Migrant Health Centers and other programs aimed at underserved groups enhances the nation’s health care safety net. Recommendation 6: Federal, state, and private efforts are needed to optimize childhood cancer survivors’ access to appropriate resources and delivery systems through both health insurance reforms and sup port of safety net programs such as the Health Resources and Services Administration’s Community and Migrant Health Centers.

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Increasing Research on Childhood Cancer Survivorship There is a growing recognition that only continued, systematic follow-up of large cohorts of survivors can reveal the full extent of late effects. Amelioration of these late effects will require investments in intervention research. Ultimately, clinical research to find targeted therapies that maximize survival while minimizing late effects will likely improve the outlook for future generations of childhood cancer survivors. In the meantime, research is needed to optimize the recovery of cancer survivors and to test ways of delivering appropriate clinical and supportive care services. This underrecognized area of research needs new support. Several ongoing research activities will answer many outstanding questions about late effects among childhood cancer survivors. In particular, the Childhood Cancer Survivor Study, a large retrospective cohort study, will provide many opportunities for researchers. Relatively little multi-institutional survivorship research has taken place within the member institutions of the Children’s Oncology Group, even though the majority of children with cancer receive their care in these settings. A renewed commitment to such research, along with investments in infrastructure to improve the ability to systematically identify and follow patients, would greatly improve the capacity and opportunities for survivorship research. While clinical, epidemiologic, and behavioral research in childhood survivorship has emerged to provide insights into childhood cancer survivorship, there appears to have been relatively little health services research to understand the health care experience and needs of childhood cancer survivors and their families. The need for survivorship follow-up care is widely acknowledged and general recommendations for such care are available to clinicians, survivors, and their families. An active research program is needed to address the many outstanding questions regarding the necessary components of follow-up care in the identification, prevention, and amelioration of specific late effects. The Board outlines specific research priorities in Chapter 8 of this report. Recommendation 7: Public and private research organizations (e.g., National Cancer Institute, National Institute of Nursing Research, American Cancer Society) should increase support for research to pre vent or ameliorate the long-term consequences of childhood cancer. Priority areas of research include assessing the prevalence and etiol ogy of late effects; testing methods that may reduce late effects during treatment; developing interventions to prevent or reduce late effects after treatment; and furthering improvements in quality of care to ameliorate the consequences of late effects on individuals and fami lies.

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Both prospective and retrospective studies are needed to quantify the incidence and prevalence of adverse sequelae in representative cohorts of survivors. Establishing a population-based surveillance system for childhood cancer would facilitate population-based research efforts. Studies are needed of new treatments to reduce the occurrence of late effects among childhood cancer survivors and of interventions designed to prevent or ameliorate the consequences of late effects associated with current treatments. Research is needed on the long-term social, economic, and quality of life implications of cancer on survivors and their families. The COG should be supported in adding long-term follow-up to its clinical trials. There is an obligation to evaluate late effects of therapeutic interventions under study. Prospective clinical assessments are needed to learn about late effects. The Childhood Cancer Survivor Study should be fully supported and researchers encouraged to use data that have been collected. Resources are needed to assure completeness of follow-up of survivors and to conduct methodologic studies (e.g., assessment of the adequacy of sibling controls for psychosocial and health outcomes). Opportunities to study late effects within systems of care that have a medical record system that captures primary and specialty care should be explored (e.g., through the health maintenance organization [HMO] network, an NCI-supported research consortium of HMOs with population-based research program). As evidence emerges regarding late effects, research institutions should have systems in place to disseminate information to survivors who remain under their care, and to providers of follow-up care, in both specialty and primary care settings. The Board has proposed this set of recommendations in the hopes of improving the outlook and quality of life of the estimated 270,000 Americans who have survived childhood cancer. Adoption of these recommendations would be responsive to the concerns of the 178,000 individuals estimated to be experiencing late effects of their disease and treatment as well as the many survivors who remain at risk for such effects. The Board has concluded that the oncology and larger health care community is not yet fully prepared to address the unique health and psychosocial needs of this population. Recommended improvements in health care delivery, education and training, and research could help complete the triumph of the success of childhood cancer treatment and extend the horizon of success beyond 5-year survival to a life free of disability and disease.

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