Childhood Cancer Survivorship Improving Care and Quality of Life (2003) / Chapter Skim
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9. Findings and Recommendations
9. Findings and Recommendations
Pages 188-206
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From page 188... ...
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.
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From page 189... ...
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 longterm 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.
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From page 190... ...
Since 1997, the EPCs have completed 64 evidence reports, but none of them directly address issues related to survivors of childhood cancer.) The Late Effects Committee of the Children's Oncology Group (COG)
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From page 191... ...
, 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)
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From page 192... ...
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.
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From page 193... ...
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.
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From page 194... ...
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.
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From page 195... ...
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.
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From page 196... ...
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.
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From page 197... ...
Recommendation 3: Improve awareness of late effects and their implications to long-ter~n 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)
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From page 198... ...
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.
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From page 199... ...
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.
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From page 200... ...
include: The public programs available to help accomplish these important goals 1. The Maternal and Child Health Block Grant and its program for Children with Special Health Care Needs (DHHS/HRSA)
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From page 201... ...
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.
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From page 202... ...
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)
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From page 203... ...
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.
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From page 204... ...
· 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 205... ...
2001. Achieving Success for All Children and Youth With Special Health Care Needs: A 10-Year Action Plan to Accompany Healthy People 2010.
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From page 206... ...
2002. Health care transition: destinations unknown.
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