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The more than two-thirds of childhood cancer survivors who experience late effects -- that is, complications, disabilities, or adverse outcomes -- as a result of their disease, its treatment, or both, are the focus of this report which outlines a comprehensive policy agenda that links improved health care delivery and follow-up, investments in education and training for health care providers, and expanded research to improve the long-term outlook for this growing population now exceeding 270,000 Americans.
IMPROVING CARE AND QUALITY OF LIFE
Copyright © 2003 National Academy of Sciences
All right reserved.
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 survivorsexperiencing 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 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 psychosocial 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 guidelines 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 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 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 alternate 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 Prevention (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 implications 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 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 regarding late effects and their management for both specialty and primary 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).
Excerpted from CHILDHOOD CANCER SURVIVORSHIP Copyright © 2003 by National Academy of Sciences. Excerpted by permission.
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|2||The Epidemiology of Childhood Cancer||20|
|3||The Trajectory of Childhood Cancer Care||37|
|4||Late Effects of Childhood Cancer||49|
|5||Delivering Survivorship Care||90|
|6||Assuring Appropriate Educational Support Services||128|
|7||Employment, Insurance, and Economic Issues||140|
|9||Findings and Recommendations||188|