Childhood Cancer Survivorship Improving Care and Quality of Life (2003) / Chapter Skim
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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)
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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.
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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~.
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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.
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Such a mode! could facilitate the necessary transition from pediatric-based care to adult care as childhood cancer survivors mature into adulthood.
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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-ter~n health among childhood cancer survivors and their families.
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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.
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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.
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These safety net programs have the potential to extend supportive services to survivors of chilclhooci 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 exclucle survivors of chilc~hooci cancer.
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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.
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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 undo delivery systems through both health insurance reforms undo support of safety net programs such as the Health Resources and Services Administration's Community undo Migrant Health Centers.
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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.
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· 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.
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From page 14... ...
Longitudinal Cancer-Related Health Care For Adult Survivors of Childhood Cancer (IOM commissioned background paper)
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