Tackling kids' post-cancer 'price of survival' issues

Psychologists help prevent and manage learning difficulties brought on by cancer treatments.

By Rebecca A. Clay

A cancer diagnosis used to be a child's death sentence. Today, new treatment techniques have boosted survival rates but have brought with them a whole new problem.

"The good news is that children are surviving," says Steven Simms, PhD, a staff psychologist in the oncology division at Children's Hospital in Phila- delphia. "The bad news is that these children are showing signs of significant learning disabilities."

Now Simms and other psychologists are trying to change that. They're helping oncologists reduce treatment's toxicity while still maintaining its effectiveness. And they're working with schools to help children overcome the difficulties that were once the price of their survival.

Worrying about treatment-related learning disabilities is a relatively recent luxury, says Simms, who is also a clinical assistant professor of pediatrics at the University of Pennsylvania's School of Medicine.

In the 1970s, researchers discovered that chemotherapy was effective in curing some forms of childhood cancer. Unfortunately, for children with leukemia, some of the cancer cells were protected from the chemotherapy by the blood-brain barrier, and a number of children experienced a relapse of the cancer. To reach those cells, physicians started treating the central nervous system with combinations of brain and spine radiation along with chemotherapy injected directly into the spinal fluid. What the physicians didn't realize was the often devastating effect radiation could have on children's developing brains. As a result of treatment, many children survived but suffered so-called "late effects," such as declines in I.Q., impaired short-term memory and other cognitive problems.

Thanks to research by Simms and other psychologists, oncologists are rethinking their use of radiation and other toxic treatments. They're finding that they can reduce or eliminate radiation--and reduce the chances of cognitive damage--without reducing survival rates, says Simms, whose own work focuses on bone-marrow transplantation. In fact, many cancer centers now restrict the use of radiation to high-risk children.

Age, gender and other variables all play a key role in late effects, she has found. Children under 3 are most vulnerable to radiation, she says. Girls are much more likely to suffer late effects, for reasons still unknown. And the effects of radiation often depend on what drugs are given with it. Girls who are given high doses of one standard chemotherapy drug, for instance, suffer greater adverse outcomes from the radiation; cutting back on the drug mitigates the radiation's effects.

"You have to pay attention to differences like these," says Debra P. Waber, PhD, a senior associate in psychology at Children's Hospital in Boston and associate professor of psychiatry at Harvard Medical School. "You don't want to take away curative treatment from children who could benefit from it just because some other children would have bad late effects."

Helping children who already have treatment-related problems is another priority for psychologists. Children's Hospital in Philadelphia, for example, holds twice-yearly workshops to help teachers, school nurses and other school personnel learn more about helping children with cancer cope with school.

Ronald T. Brown, PhD, works with schools throughout the year. Although the bulk of his time is spent investigating chemotherapy's impact on cognition, he also goes into schools to explain children's situations to teachers, educate classmates and arrange special services when needed. He has even thought about ways to help preschoolers prepare for school.

"If you have children who have been treated with radiation or chemotherapy at a young age, you could do for them what you would do for disadvantaged children," suggests Brown, a professor of pediatrics at the Medical University of South Carolina in Charleston. "You could enroll them in enrichment programs like Head Start to see if that would retard the development of problems."

Daniel Armstrong, PhD, is already investigating a more elaborate intervention model.

The project arose out of Armstrong's research into the nature of cognitive late effects. Believing that IQ scores aren't the best gauge of treatment's impact, he has found that children's declines in nonverbal abilities and language skills are far more important.

"These types of acquired brain injuries don't fit teachers' standard understanding of learning problems," explains Armstrong, director of the Mailman Center for Child Development at the University of Miami School of Medicine. "We'll often see kids with above-average intelligence carrying on fluent conversations with adults, then be unable to perform on tests because they have trouble reading. Teachers look at them and say, 'What is going on here?'"

Now Armstrong is helping children overcome those deficits through individual education plans coordinated with schools. The plans call for eliminating time limits for school assignments, for instance. Some children take tests orally and substitute books on tape for reading, since their processing of visual material is so slow their reading comprehension suffers. Some use tape recorders to dictate assignments that will later be transcribed by family members, a technique that helps them avoid losing good ideas as they struggle with handwriting.

"For too long, we've had to say to parents, 'Sorry, this is the price of your child being alive.' Now we're able to say, 'Well, maybe we can do something.'"