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Childhood cancer survivors experience long term side effects

BMJ 2003; 327 doi: (Published 04 September 2003) Cite this as: BMJ 2003;327:522
  1. Charles Marwick
  1. Washington, DC

    Nearly four out of five people who have a diagnosis of cancer in childhood are surviving nowadays. But later in life they are likely to experience some side effects from the disease, its treatment, or both, according to a new report from the US Institute of Medicine.

    Before 1970, people under 20 years of age who were given a diagnosis of cancer had little hope of being cured, says the report. But by 1997 an estimated 270 000 people in the United States with a history of childhood or adolescent cancer have now survived well beyond the traditional five years. “It is one of oncology's great success stories,” says the report.

    However, it warns, these survivors may have late side effects, disabilities, or other adverse outcomes. Impairments in learning, growth and maturation, and cardiac function between the ages of 20 and 39 years are well documented. As many as two thirds of survivors of childhood cancer are likely to experience one or more such late effects, and perhaps a quarter of the effects are liable to be severe or life threatening. And, as the survivors age, it is likely that additional effects will turn up, the report says.

    No systematic review of the implications has been done, and the report calls for the development of a comprehensive policy to deal with this relatively new group of patients.

    “The focus has for so long been on saving lives that children have essentially been rotated out of the world of the paediatric oncologists, who believe, in a sense, that their job is done. That there are effects occurring 10-15 years later is really a surprise and not good news,” said Dr Susan Weiner, a member of the board that wrote the report. Dr Weiner is founder of a cancer education and advocacy organisation called the Children's Cause.

    The report makes seven recommendations. They include the development, under the aegis of the National Cancer Institute, of evidence based guidelines on clinical practice to improve the follow up and care of people with a history of childhood cancer; defining a minimum set of standards for systematic follow up care; linking primary providers with oncologists and the institutions that treat children with cancer; evaluating the methods of delivery of care to these survivors; and improving access to healthcare services in general for these people.

    Most cancer survivors are not aware of their risk, says the report. There is a need to alert them to the likelihood of these late effects and their implications and also to alert doctors—specialists and primary care providers—about the effects and their management. Also, research needs to be supported so as to develop programmes that might prevent or minimise the consequences of childhood cancer.

    The report was prepared by the institute's cancer policy board and is the first of a series on cancer survivorship. A future report will deal with survivors of cancer in adulthood.

    A summary of the report, Childhood Cancer Survivorship, is available at

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