NEWS

Long-Term Effects of Childhood Cancer Need To Be Documented, Board Says

Charles Marwick

The success of treating childhood cancer is presenting new challenges as these young patients enter adulthood, and minimizing late and chronic effects of childhood cancer should be made a priority, according to the National Cancer Policy Board in its latest report, Childhood Cancer Survivorship: Improving Care and Quality of Life.

Prior to 1970, most children and young adults under 20 years of age diagnosed with cancer had little hope of being cured. Mortality rates have dropped from 4.9 per 100,000 children to 2.5 per 100,000 from 1975 to 2000. However, this success comes at a price. There are complications, disabilities, and adverse outcomes associated with the diseases and their treatments, and the majority of cancer survivors are unaware of this risk, the report stated.

There are now well-documented impairments in learning, growth and maturation, and cardiac function in such individuals between the ages of 20 and 39 years, noted the report. As many as two-thirds of childhood cancer survivors may experience one or more such late effects, and perhaps one-fourth are likely to be severe or life threatening. And, as this cohort ages, it is likely that additional effects will turn up, the report added.

The report’s authors pointed out that there has been no systematic review of the implications of these late effects, and they call for the development of a comprehensive policy to deal with them. There is a need to alert physicians, both specialists and primary care providers, to the likelihood of these late effects and their implications. "This report tells [physicians] that they have got to keep an eye on those who had cancer in their childhood," said Susan Weiner, Ph.D., president of the Children’s Cause, an educational and advocacy group for children with cancer in Silver Spring, Md.

"It has long been recognized that very few, if any, of our modern medicines are free of side effects, so there was always the chance there would be late effects," noted Julia Rowland, Ph.D., director of the National Cancer Institute’s Office of Cancer Survivorship. At the same time, she added, "it is fair to say that the pediatric oncologists have always known about them, have been on the lookout for chronic and late effects, and have been very responsive to modifying treatments and to minimizing them."

The report makes seven recommendations. They include developing evidence-based clinical practice guidelines to improve the follow-up and care of those with a history of childhood cancer; defining a minimum set of standards for systematic follow-up care; evaluating methods of delivery of care to these survivors; and improving access to health care services in general. Finally, there needs to be increased support for research to develop programs that might prevent or minimize the consequences of childhood malignancy.

The report also noted that medical practitioners outside of the cancer community need to be made aware of what the likely late effects are, who is at risk for them, how to monitor them, and whether some adverse effects can be prevented, Rowland said.

One step is to alert primary care practitioners, or whoever takes care of these young adult cancer survivors, to be aware of their treatment history. "That has not been done systematically, and it’s an interesting proposition for the pediatric oncology community that, when they complete treatment, they probably should be giving to each child or the family documentation of those treatments because we know that down the road we’re going to see late consequences," Rowland said.

Because the management of childhood cancer has changed over the years, survivorship characteristics are likely to keep changing and need to be studied, Rowland noted. The implication is that the long-term effects seen today may well differ from the effects likely to occur in childhood cancer survivors that physicians may see 10 or more years from now.

This report is the first of a series on cancer survivorship. A future report will deal with adult cancer survivors.



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