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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,