9
Findings and Recommendations

In this report, the Board has attempted to characterize the medical and psychosocial consequences of surviving childhood cancer, identify essential elements of quality care, explore some of the social and economic consequences facing cancer survivors such as under-insurance and employment discrimination, assess the status of applied clinical and health services research, and propose policies to improve the quality of care and quality of life for childhood cancer survivors and their families. This chapter summarizes the report’s findings and presents recommendations (in order of their priority) to improve the health care and quality of life of survivors of childhood cancer.

Childhood cancer is rare, but with improvements in treatment over the past four decades, the size of the survivor population has grown dramatically. Five-year survival rates vary by type of childhood cancer, but overall, 78 percent of children diagnosed with cancer can expect to be alive in 5 years (Ries et al., 2002). In 1997, there were an estimated 270,000 survivors of childhood cancer, 95,000 of whom were under age 20 with the remainder being adults. This means that 1 in 810 individuals under age 20 have a history of cancer, and that 1 in 640 adults age 20 to 39 also have a history of childhood cancer.

Childhood cancers are a diverse set of diseases and the treatment of different types of cancer varies considerably. And within each type of cancer, the intensity and approach of treatment may differ depending on the child’s age, general health, and characteristics of the cancer. The mainstays of cancer treatment are chemotherapy, radiation, and surgery. Most



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9 Findings and Recommendations In this report, the Board has attempted to characterize the medical and psychosocial consequences of surviving childhood cancer, identify essential elements of quality care, explore some of the social and economic consequences facing cancer survivors such as under-insurance and employment discrimination, assess the status of applied clinical and health services research, and propose policies to improve the quality of care and quality of life for childhood cancer survivors and their families. This chapter summarizes the report’s findings and presents recommendations (in order of their priority) to improve the health care and quality of life of survivors of childhood cancer. Childhood cancer is rare, but with improvements in treatment over the past four decades, the size of the survivor population has grown dramatically. Five-year survival rates vary by type of childhood cancer, but overall, 78 percent of children diagnosed with cancer can expect to be alive in 5 years (Ries et al., 2002). In 1997, there were an estimated 270,000 survivors of childhood cancer, 95,000 of whom were under age 20 with the remainder being adults. This means that 1 in 810 individuals under age 20 have a history of cancer, and that 1 in 640 adults age 20 to 39 also have a history of childhood cancer. Childhood cancers are a diverse set of diseases and the treatment of different types of cancer varies considerably. And within each type of cancer, the intensity and approach of treatment may differ depending on the child’s age, general health, and characteristics of the cancer. The mainstays of cancer treatment are chemotherapy, radiation, and surgery. Most

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children are treated with two or three of these modalities, each of which can result in treatment-related health problems. Treatment of childhood cancer often occurs during important periods of physical, developmental, and psychological development. Complications, disabilities, or adverse outcomes that are the result of the disease process, the treatment, or both, are generally referred to as “late effects.” Patterns of late effects have emerged among subgroups of childhood cancer survivors, which has contributed to an appreciation of cancer as a chronic disease with implications for long-term 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 related to second malignancies. The emergence of late effects depends on many factors, including age at diagnosis and treatment, exposures to chemotherapy and radiation during treatment (doses and parts of body exposed), and the severity of 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. 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 systematic follow-up should occur, there is no consensus regarding where such care should take place, who should provide it, its duration, and what the actual components of care should be. Some aspects of follow-up care are understood to be necessary in most cases, 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,

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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. Clinical practice guidelines are “systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances” (Institute of Medicine, 1992). The foundation of clinical practice guidelines is a systematic review of available evidence—a scientific investigation that synthesizes the results of multiple primary investigations. Conducting a systematic review to answer a specific clinical questions general involves four steps (Cook et al., 1997; Institute of Medicine 2001): a comprehensive search of potentially relevant articles using explicit, reproducible criteria in the selection of articles for review, a critical appraisal of the scientific soundness of the research designs of the primary studies, synthesis of data, and interpretation of results. To conduct systematic reviews, the Agency for Healthcare Research and Quality (AHRQ) supports 13 Evidence-Based Practice Centers (EPCs) in partnership with private-sector organizations (http://www.ahcpr.gov/clinic/epcII.htm, accessed March 17, 2003). Since 1997, the EPCs have completed 64 evidence reports, but none of them directly address issues related to survivors of childhood cancer.1 The Late Effects Committee of the Children’s Oncology Group (COG) has taken steps to develop guidelines for the follow-up of childhood cancer survivors (Melissa Hudson, St. Jude Children’s Research Hospital, personal communication to Maria Hewitt, December 20, 2002). Guideline development requires considerable resources for conducting systematic reviews and for the full complement of needed expertise (e.g., health care providers, methodologists, consumers). The development and dissemination of guidelines alone has minimal effect on clinical practice, but a growing body of evidence indicates that guidelines implemented with systems in place to give providers information about 1   One EPC report reviews evidence regarding the management of cancer-related pain, depression, and fatigue (http://www.ahcpr.gov/clinic/epcsums/csympsum.htm).

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their practice and remind them of the guidelines can improve the quality of care. Up-front involvement of leaders from the health professions and representatives of patients in the guideline development process is also essential to guideline implementation (Institute of Medicine, 2001). 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 survivors of childhood cancer 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. Institutions that are members of the National Cancer Institute-funded pediatric cooperative group, the 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 (see Chapter 5, Box 5.5), 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 to address in follow-up programs: 1) services to address the psychological implications of cancer to survivors and their families; 2) educational support through school transition programs; 3) personnel available 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.

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Psychosocial Services Despite periods of intense stress, most survivors achieve normal levels of psychological and social functioning, and families adapt well. All survivors, however, even those apparently doing quite well, experience at least occasional problems in social adjustment and continue to be concerned about their medical and social futures. In addition, there is a small but significant minority of survivors who remain seriously troubled and are impaired by their psychological problems. Some studies have demonstrated symptoms of post- traumatic stress disorder (PTSD) among survivors of childhood cancer, their siblings, and their parents, which signals a need to address the needs of entire families. Other research suggests that depression and anxiety may develop in response to poor academic achievement, secondary to late effects. Psychosocial interventions to address these concerns can include psychological, emotional, peer, or education support; social skills training; adjustment counseling; family counseling; therapeutic play; cognitive-behavioral interventions; and group or individual psychoteherapy (Cohen and Walco, 1999; Kazak et al., 1999; Schwartz et al., 1999; Van Dongen-Melman, 2000; Walker, 1989). Personnel who can conduct routine assessments of need for these services and who are able to provide care or make appropriate referrals for care should be integral members of a follow-up system. At the same time, applied research is needed to better identify those survivors and their families who are most likely to benefit from psychosocial services, and the relative success of different types of interventions in improving quality of life. Some survivors cope well following their cancer treatment and report positive outcomes such as an increased appreciation of life. An improved understanding of how individuals and families adapt and remain resilient in the face of adversity can inform programs aimed at helping those individuals who are distressed. Educational Services School-related disabilities among survivors of childhood cancer may include learning disabilities and functional limitations. There are no good estimates of how many childhood cancer survivors need accommodations at school, but among certain groups of survivors, the need appears to be very high. There is, for example, a three- to fourfold increase in use of special education services among survivors of acute lymphocytic leukemia (ALL). Survivors of CNS tumors also are at very high risk of neurocognitive late effects and learning problems. Even if survivors are asymptomatic at school re-entry, they may require monitoring for long-term neurocognitive deficits that can arise in the years following treatment. More needs to be

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learned of the educational needs of other groups of childhood cancer survivors and of the effectiveness of interventions designed to ameliorate the late effects of cancer and its treatment. Federal laws protect the educational rights of individuals with disabilities (i.e., the Individuals with Disabilities Education Act, the Rehabilitation Act of 1973, and the Americans with Disabilites Act). While legal protections appear to be comprehensive, procedures are implemented and laws are interpreted locally. Among parents, satisfaction with accommodations at schools varies depending on the school’s level of cooperation, awareness of cognitive impairment in children with cancer, and resources available to provide the necessary interventions. Given the central importance that school plays in a child’s life, systems must be in place to assure an appropriate education following cancer treatment. Many cancer centers have transition programs to ease the return of childhood cancer survivors to school following their treatment. Ideally, planning for school re-entry begins at diagnosis and involves a school liaison to ensure that educational environments are supportive and can accommodate any late effects. School systems are generally not familiar with the particular needs of cancer survivors and may not support all services needed by childhood cancer survivors returning (or going) to school. Repeated neuropsychologic assessments may, for example, be necessary to gauge educational needs and progress, and yet are routinely excluded from coverage by federally mandated special education programs. Such testing may also be difficult to obtain through private insurance plans (see Chapter 7). A cancer center-based school liaison can play an important role in advocating for children as they re-enter school and can monitor the educational progress of survivors through transitions to college, employment, or vocational programs. Employment- and Insurance-Related Protections Significant progress has been made since the early 1990s to improve the employment opportunities of cancer survivors. With the passage of federal laws such as the Americans with Disabilities Act and the Family and Medical Leave Act, as well as the expansion of many state laws, cancer survivors have gained new legal rights and remedies. Additionally, the rise of cancer survivorship advocacy has helped dispel the myths that fuel survivors’ employment problems. While employment discrimination has declined over time, problems appear to have persisted for some survivors of childhood cancer. Providing better information to survivors regarding employment rights may lessen the effects of cancer on employment opportunities. All working-aged (or near working-age) survivors should receive from their cancer

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center and/or oncologist information about their legal rights, including information on how to avoid employment problems and how to respond to employment discrimination. Additionally, everyone who provides psychosocial support (such as oncology nurses, social workers, psychologists, counselors, and peer support organizations) should be familiar with cancer survivors’ rights. Health care providers can further help their patients avoid job problems by educating employers about their patients’ prognoses, abilities, and limitations and assist in the identification of reasonable accommodations. Transition from Pediatric to Adult Systems of Care Roughly one-third of newly diagnosed children with cancer are adolescents age 15 to 19. While most adolescents are treated by pediatric oncologists, they likely transition to adult care providers within a few years of completing therapy. Those under age 15 would be expected to remain in pediatric care for a longer period, but they and their families would need to have a plan for continued care as young adults. The American Academy of Pediatrics and the American Academy of Family Physicians, the American College of Physicians, and the American Society of Internal Medicine have addressed the issue of transition care for young adults with special health care needs and have recommended several steps to achieve appropriate transition from pediatric health care to adults health care (Box 9.1) (American Academy of Pediatrics, 2002; Kelly et al., 2002; Reiss and Gibson, 2002; Scal, 2002). The Board considered these recommendations relevant to pediatric oncology providers and endorses them. Of particular interest to the Board was the concept of partnership and the comanagement of care for a period of time. As applied in the context of survivorship care, this would allow pediatric oncologists to work with adult primary care practitioners, allowing them to become familiar with issues of late effects and their management while at the same time assuring continuity of care. A portable and accessible medical summary that can provide a common knowledge base for collaboration among health care providers is also critical to a successful transition to adult 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

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Box 9.1 Critical First Steps to Ensuring Successful Transitioning to Adult-Oriented Health Care Ensure that all young people with special health care needs have an identified health care professional who attends to the unique challenges of transition and assumes responsibility for current health care, care coordination, and future health care planning. This responsibility is executed in partnership with other child and adult health care professionals, the young person, and his or her family. It is intended to ensure that as transitions occur, all young people have uninterrupted, comprehensive, and accessible care within their community. Identify the core knowledge and skills required to provide developmentally appropriate health care transition services to young people with special health care needs and make them part of training and certification requirements for primary care residents and physicians in practice. Prepare and maintain an up-to-date medical summary that is portable and accessible. This information is critical for successful health care transition and provides the common knowledge base for collaboration among health care professionals. Create a written health care transition plan by age 14 together with the young person and family. At a minimum, this plan should include what services need to be provided, who will provide them, and how they will be financed. This plan should be reviewed and updated annually and whenever there is a transfer of care. Apply the same guidelines for primary and preventive care for all adolescents and young adults, including those with special health care needs, recognizing that young people with special health care needs may require more resources and services than do other young people to optimize their health. Ensure affordable, continuous health insurance coverage for all young people with special health care needs throughout adolescence and adulthood. This insurance should cover appropriate compensation for 1) health care transition planning for all young people with special health care needs, and 2) care coordination for those who have complex medical conditions. SOURCE: American Academy of Pediatrics, 2002. 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

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have easy access to support services needed to accommodate adjustment to school, work, or independent living. There is little evidence to suggest that any particular mechanism is optimal for delivering follow-up care to survivors of childhood cancer. Rather than recommending any one approach, the Board felt that agreement is needed on what constitutes the essential elements of follow-up care. Demonstration programs with rigorous evaluations are then needed to test the merits of alternative methods to deliver these elements of care. 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 (NCI) 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 CDC support 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., rural residents or those

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living far from specialized late-effects clinics, ethnic and minority groups). 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 appear to be 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. The reasons why survivors lack knowledge about late effects is not known. In the case of older survivors, this lack of knowledge could be explained if care was completed before the full scope of late effects associated with their cancer and its treatment were known. If parents of survivors treated at very young ages had received information on late effects, they may not have retained or effectively communicated that information to their child. Parents of low socioeconomic status, who do not speak English, or who face cultural barriers, may have greater difficulty in this regard. Anecdotal evidence from parents and survivors suggests that late effects have not been routinely addressed by pediatric oncologists (Nancy Keene, personal communication to Maria Hewitt, December 21, 2001) 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 to 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. Discussions of 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.

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AUGMENTING PROFESSIONAL EDUCATION AND TRAINING If survivorship care is to expand and improve, additional professional education and training opportunities will be needed. Advance 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 (Ettinger, 2002). 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. A model for continuing education for primary care providers is a home study self-assessment monograph developed by the American Academy of Family Physicians on adult survivorship issues (Hamblin, 2002). Shortcomings in training of other personnel who might practice within a follow-up care system (e.g., psychologists, oncology social workers) also need to be addressed. About 1 in 300 ambulatory care visits among children and adolescents is cancer related. 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 to ameliorate late effects because they have little experience with childhood cancer survivors and lack training. Primary care providers learn about cancer in their training and in their practice, and that knowledge should be extended to include late effects. Knowing who to contact for assistance when questions arise regarding the management of the late effects of cancer and its treatment is also valuable. Recommendation 4: Improve professional education and training regarding late effects of childhood cancer 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 curriculum. 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

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practicums, 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 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). STRENGTHENING PUBLIC PROGRAMS SERVING CHILDHOOD CANCER SURVIVORS Some of the concerns of childhood cancer survivors are unique to their cancer and its treatment. However, the concerns of many survivors experiencing late effects 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. As part of the DHHS Healthy People 2010 initiative, the Maternal and Child Health Bureau in the Health Resources and Services Administration (HRSA) and key partners (e.g., provider and consumer groups) have launched an effort to assure that the needs of families across the nation are met. Progress toward meeting the needs of children with special health care need is being measured with the following set of core 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.

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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 system 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: 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” (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

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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 continuous 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. Education of both community-based primary care providers and cancer center-based specialists about the needs of these children and their families is essential. Simpler communication systems that assure prompt information-sharing among all those caring for these children 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. Meeting these goals will benefit survivors of childhood cancer and other children with special health care needs. 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

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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 uninsuredness. 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 who are not 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 and young adults 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 necessary to meet the needs of children with special

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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 support of safety net programs such as the Health Resources and Services Administration’s Community and Migrant Health Centers. INCREASING RESEARCH ON CHILDHOOD CANCER SURVIVORSHIP Recognition is growing 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. The Childhood Cancer Survivor Study, in particular, 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, survi-

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vors, and their families. An active research program is needed to address the many questions regarding the necessary components of follow-up care in the identification, prevention, and amelioration of specific late effects. The Board recognized the following areas for needed research. (Detailed research priorities are outlined in Chapter 8.) Recommendation 7: Public and private research organizations (e.g., NCI, National Institute of Nursing Research, American Cancer Society) should increase support for research to prevent or ameliorate the long-term consequences of childhood cancer. Priority areas of research include assessing the prevalence and etiology 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 families. 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 CCSS cohort 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 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.

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The National Cancer Policy Board has proposed a comprehensive policy agenda that links expansions in research, improvements in health care delivery, infrastructure development, survivor education, professional education and training, and assurances of coverage under federal insurance and service programs to improve the long-term outlook for the growing population of childhood cancer survivors.2 REFERENCES Achman L, Chollet D. 2001. Insuring the Uninsurable: An Overview of State High-Risk Health Insurance Pools. Mathematica Policy Research, Inc. Princeton NJ (http://www.mathematica-mpr.com/3rdlevel/uninsurablehot.htm. Last accessed March 21, 2003). American Academy of Pediatrics. 2002. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 110(6 Pt 2):1304-6. Cohen SO, Walco GA. 1999. Dance/Movement therapy for children and adolescents with cancer. Cancer Pract 7(1):34-42. Cook DJ, Mulrow CD, Haynes RB. 1997. Systematic reviews: synthesis of best evidence for clinical decisions. Ann Intern Med 126(5):376-80. Department of Health and Human Services, Health Resources and Services Administration. 2001. Achieving Success for All Children and Youth With Special Health Care Needs: A 10-Year Action Plan to Accompany Healthy People 2010. Washington DC: US DHHS. Department of Health and Human Services, CMS. 2002. HHS to Help States Create High-Risk Pools to Increase Access to Health Coverage. Press release, November 26, 2002. (www.hhs.gov/news/press/2002pres/20021126a.html, last accessed January 31, 2003). Ettinger A. 2002. Long-Term Survivor Programs: A Paradigm for the Advanced Practice Nurse. NCPB Commissioned Paper. Hamblin J.E., Schifeling D.E. 2002. Cancer Survivors (Monograph 264). American Academy of Family Practice. Institute of Medicine, Committee on Clinical Practice Guidelines. 1992. Field MJ, Lohr KN. Guidelines for Clinical Practice : From Development to Use. Washington, D.C.: National Academy Press. Institute of Medicine, Committee on Quality of Health Care in America. 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, D.C.: National Academy Press. Kazak AE, Simms S, Barakat L, Hobbie W, Foley B, Golomb V, Best M. 1999. Surviving cancer competently intervention program (SCCIP): a cognitive- behavioral and family therapy intervention for adolescent survivors of childhood cancer and their families. Fam Process 38(2):175-91. Kelly AM, Kratz B, Bielski M, Rinehart PM. 2002. Implementing transitions for youth with complex chronic conditions using the medical home model. Pediatrics 110(6 Pt 2): 1322-7. Meadows AT, Black B, Nesbit ME Jr, Strong LC, Nicholson HS, Green DM, Hays DM, Lozowski SL. 1993. Long-term survival. Clinical care, research, and education. Cancer 71(10 Suppl):3213-5. 2   The Board’s recommendations are consistent with those made by Meadows and colleagues following a workshop discussion on long-term survival in 1993.

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Reiss J, Gibson R. 2002. Health care transition: destinations unknown. Pediatrics 110(6 Pt 2):1307-14. 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. Scal P. 2002. Transition for youth with chronic conditions: primary care physicians’ approaches. Pediatrics 110(6 Pt 2):1315-21. Schwartz CE, Feinberg RG, Jilinskaia E, Applegate JC. 1999. An evaluation of a psychosocial intervention for survivors of childhood cancer: paradoxical effects of response shift over time. Psychooncology 8(4):344-54. Van Dongen-Melman JE. 2000. Developing psychosocial aftercare for children surviving cancer and their families. Acta Oncol 39(1):23-31. Walker C. 1989. Use of art and play therapy in pediatric oncology. J Pediatr Oncol Nurs 6(4):121-6.