STANFORD, Calif. - Children who survive brain cancer struggle for yearswith the malevolent echo of the disease and its treatment, according toa new study from the Stanford University School of Medicine and LucilePackard Children's Hospital. Nearly one-third of former brain tumorpatients require special education services, and many suffer fromchronic headaches, nausea and seizures. Only about half of those oldenough to drive do so.
Those who received radiation to cure their cancers fared worse thanthose who had only surgery. Adding chemotherapy to radiation, a commontherapeutic strategy, didn't worsen the outcome. The finding, publishedin the Aug. 20 issue of the Journal of Clinical Oncology, lendscredence to an ongoing Stanford/Packard study in which lower doses ofradiation are supplemented by additional rounds of chemotherapy to helpreduce the cognitive and emotional problems that are the side effect ofsuccessful treatment.
"We've been very focused on curing brain cancer, which we nowdo in about 68 percent of the kids," said pediatric neurologist PaulFisher, MD. "Now we're asking, 'OK, but what are the kids like? We'recuring them, but at what cost?'"
The findings validate long-standing concerns about radiation inchildren's developing brains. Although physicians have known that braincancer - and the surgery and radiation used to treat it - can causelong-term physical, learning and emotional deficits, the study marksthe first time anyone has directly compared the health-related qualityof life of former patients to that of healthy children. The hope isthat the simple survey will gain widespread use as a way of evaluatingthe effects of potential new treatments for the condition.
Fisher and his colleagues surveyed 134 former patientsreturning to Packard Children's Hospital for routine follow-up visits.The survey, known as the Pediatric Quality of Life Inventory 4.0, waspreviously validated as a reliable way to measure quality of life inchildren, but no one had used it in brain tumor patients.
"Parents often come into the clinic and ask us, 'What's mychild going to be like five and 10 years from now?'" said Fisher."We're always interested in improving their outcome, but until nowwe've not been able to assess what their life is really like yearsafter their diagnosis. Do the older children have a checkbook? Can theymanage money? We don't know."
The survey asks children and their parents whether the kidshave problems with common activities such as running or bathingthemselves, if they have trouble sleeping or worry about their future,whether other children tease them and whether they have problems withtheir schoolwork. The researchers also asked a few additional questionsabout medications the children were taking; whether the childrenrequire special education services, hearing aids or glasses; andwhether they could carry out normal daily activities, such as makingbreakfast, counting change and driving. Answering all the questionstook about 20 minutes.
The patients' median age was 11.3 years, and it had been aboutthree years since their diagnoses. They had all types of brain tumorsand various combinations of surgery, radiation and chemotherapy. Theresearchers found that although children who had received radiation tocombat their cancer had a poorer quality of life than those who hadonly surgery, adding chemotherapy to radiation therapy didn't makethings worse.
Children with more aggressive or larger tumors were moreimpaired overall. Alarmingly, the study suggested that as former braintumor patients grow older, they become more aware of their differencesand grow increasingly socially isolated.
"The longer it's been since their diagnosis, the more reluctantthe kids are to talk about it," said Fisher. "They know they're not thesame person they were before, and it's very upsetting for them."
Although the study showed that radiation has the strongesteffect on quality of life, there were not enough participants tocompare low vs. high doses. The researchers will continue to amass datato compare outcomes in children with varying doses of radiation, aswell as assessing the effect of the specific type and location of thetumor.
"Brain tumor patients tend to suffer a lot of cancer symptomseven after therapy," said Fisher. "They often still have headaches,pain and nausea. Even though they may have a normal lifespan, theirsymptoms don't get better. But most people think, 'OK, they're finenow. Everything should be back to normal.'"
Fisher and his colleagues hope the current study will propelthe field to the discovery of newer, more effective but less damagingtreatments of brain tumors. "This study is the first to demonstratethat it's relatively easy and quick to assess a former patient'squality of life during a normal clinic visit," he said. "We can getgood data that can be used to improve treatment."
Fisher's Stanford colleagues in the study include medicalstudents Sundeep Bhat, Tress Goodwin and Meagan Lansdale; as well asfaculty members Gary Dahl, MD; Stephen Huhn, MD; Iris Gibbs, MD; andSarah Donaldson, MD.
Cite This Page: