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Report Urges Better Follow-up for Childhood Cancer Survivors

Cancer specialists like to think of childhood cancer as one of their field's great success stories. Just a few decades ago, few children could be expected to survive this devastating diagnosis. Since that time, though, better treatments have raised the survival rate by almost 45%. Today, more than three-quarters of children who develop cancer survive five years or longer.

But as a new report by the Institute of Medicine (IOM) points out, their road isn't always free of obstacles. As many as two-thirds of childhood cancer survivors experience what doctors call "late effects" -- side effects of the disease or its treatment that don't become apparent until some time after the child is cured. These effects may be severe in up to one-quarter of the children affected, the report said.

Dealing with those late effects -- second cancers, heart damage, learning impairments, and stunted growth, among others -- is becoming an increasingly important part of cancer care.

"Cancer in children has largely become a chronic illness rather than an acute illness in which you live or die within a relatively short period of time, which is what it used to be," said Joseph Simone, MD, chairman of the National Cancer Policy Board, which prepared the report for the IOM. "We need to maintain responsibility for that child and eventual adult to try to mitigate the effects of the disease and treatment."

The report, Childhood Cancer Survivorship: Improving Care and Quality of Life, lays out steps for improving the follow-up care of children who beat cancer.

The number of people who could benefit from such improvements is large, and growing. As of 1997, there were 270,000 cancer survivors in the United States, the report said. Experts say the number is likely far greater today, though more current statistics are not available.

One of the most pressing needs is a standard set of guidelines for doctors who care for cancer survivors, Simone said. Although most doctors agree survivors need some type of follow-up, there is little information or agreement about what works best. Clinics across the country may have different programs for caring for survivors.

"The problem with that is, you can't learn anything from that if you're not collecting the same kind of information from a large number of patients," Simone said.

The report recommends that the National Cancer Institute convene an expert panel to review current practices and set standards based on the most effective strategies.

That would also help patients who have to change doctors when they move to another city, Simone said. "You'd like to have some kind of standard so they can take it with them and say 'Here's where I am in my follow-up and I'm due for blank.'"

Another critical issue, the report said, is raising awareness among survivors that they may experience some late effects, both physical and psychological.

Families often assume their child will return to normal once the immediate crisis of treating the cancer has passed, said Susan Weiner, PhD, president of The Children's Cause, an advocacy group for childhood cancer patients, and a member of the panel that prepared the report. Many families may not be prepared to deal with side effects that appear later.

"Part of what this report really outlines is the complexity of the problems that are emerging, how it varies both with the disease and with the treatment," Weiner said.

Children who have lost a limb to cancer, for instance, have different psychological needs than children who haven't. Likewise, different cancer treatments can cause different medical effects: radiation to the brain may lead to learning difficulties, while some types of chemotherapy may damage the heart and other organs.

Survivors and their families need to know what signs to watch out for, so any late effects can be dealt with promptly.

But doctors also need better knowledge of the potential problems, the report said. And it's not just cancer specialists who must be educated. As childhood survivors grow into adolescence and adulthood, they are likely to stop seeing their pediatrician or oncologist, and instead visit an internist, general practitioner, or other specialist. These doctors, too, must learn about late effects of cancer, how to uncover silent health problems, monitor and treat chronic conditions.

The report also recommends better coordination among cancer specialists and doctors of other specialties, to assure survivors get good follow-up care.

The IOM report also recommends strengthening federal, state and local programs that serve children with special health concerns, and improving insurance practices so that more survivors have access to the specialized care they may need.

The report also explores the need for more research about the late effects of childhood cancer. It calls on government and private health organizations to increase funding for such projects. In particular, the report says researchers should examine how frequently late effects occur, and what causes them, so methods can be developed to prevent them. Improved treatments are also crucial.