Nearly one-third of former brain tumor patients require special education services

Aug 22 2005

Children who survive brain cancer struggle for years with the malevolent echo of the disease and its treatment, according to a new study from the Stanford University School of Medicine and Lucile Packard Children's Hospital. Nearly one-third of former brain tumor patients require special education services, and many suffer from chronic headaches, nausea and seizures. Only about half of those old enough to drive do so.

Those who received radiation to cure their cancers fared worse than those who had only surgery. Adding chemotherapy to radiation, a common therapeutic strategy, didn't worsen the outcome. The finding, published in the Aug. 20 issue of the Journal of Clinical Oncology, lends credence to an ongoing Stanford/Packard study in which lower doses of radiation are supplemented by additional rounds of chemotherapy to help reduce the cognitive and emotional problems that are the side effect of successful treatment.

"We've been very focused on curing brain cancer, which we now do in about 68 percent of the kids," said pediatric neurologist Paul Fisher, MD. "Now we're asking, 'OK, but what are the kids like? We're curing them, but at what cost?'"

The findings validate long-standing concerns about radiation in children's developing brains. Although physicians have known that brain cancer - and the surgery and radiation used to treat it - can cause long-term physical, learning and emotional deficits, the study marks the first time anyone has directly compared the health-related quality of life of former patients to that of healthy children. The hope is that the simple survey will gain widespread use as a way of evaluating the effects of potential new treatments for the condition.

Fisher and his colleagues surveyed 134 former patients returning to Packard Children's Hospital for routine follow-up visits. The survey, known as the Pediatric Quality of Life Inventory 4.0, was previously validated as a reliable way to measure quality of life in children, but no one had used it in brain tumor patients.

"Parents often come into the clinic and ask us, 'What's my child going to be like five and 10 years from now?'" said Fisher. "We're always interested in improving their outcome, but until now we've not been able to assess what their life is really like years after their diagnosis. Do the older children have a checkbook? Can they manage money? We don't know."

The survey asks children and their parents whether the kids have problems with common activities such as running or bathing themselves, if they have trouble sleeping or worry about their future, whether other children tease them and whether they have problems with their schoolwork. The researchers also asked a few additional questions about medications the children were taking; whether the children require special education services, hearing aids or glasses; and whether they could carry out normal daily activities, such as making breakfast, counting change and driving. Answering all the questions took about 20 minutes.

The patients' median age was 11.3 years, and it had been about three years since their diagnoses. They had all types of brain tumors and various combinations of surgery, radiation and chemotherapy. The researchers found that although children who had received radiation to combat their cancer had a poorer quality of life than those who had only surgery, adding chemotherapy to radiation therapy didn't make things worse.

Children with more aggressive or larger tumors were more impaired overall. Alarmingly, the study suggested that as former brain tumor patients grow older, they become more aware of their differences and grow increasingly socially isolated.

"The longer it's been since their diagnosis, the more reluctant the kids are to talk about it," said Fisher. "They know they're not the same person they were before, and it's very upsetting for them."

Although the study showed that radiation has the strongest effect on quality of life, there were not enough participants to compare low vs. high doses. The researchers will continue to amass data to compare outcomes in children with varying doses of radiation, as well as assessing the effect of the specific type and location of the tumor.

"Brain tumor patients tend to suffer a lot of cancer symptoms even after therapy," said Fisher. "They often still have headaches, pain and nausea. Even though they may have a normal lifespan, their symptoms don't get better. But most people think, 'OK, they're fine now. Everything should be back to normal.'"

Fisher and his colleagues hope the current study will propel the field to the discovery of newer, more effective but less damaging treatments of brain tumors. "This study is the first to demonstrate that it's relatively easy and quick to assess a former patient's quality of life during a normal clinic visit," he said. "We can get good data that can be used to improve treatment."

Fisher's Stanford colleagues in the study include medical students Sundeep Bhat, Tress Goodwin and Meagan Lansdale; as well as faculty members Gary Dahl, MD; Stephen Huhn, MD; Iris Gibbs, MD; and Sarah Donaldson, MD.