Problems Linger for Pediatric Brain Cancer Survivors

They struggle with social, emotional and physical difficulties, study finds

THURSDAY, Aug. 18, 2005 (HealthDay News) -- As if the diagnosis and treatment of a brain tumor during childhood isn't hardship enough, a new study finds that many who live through the trauma suffer social, emotional and physical difficulties in the aftermath.

"After therapy for cancer, society often assumes that children can get back to life as before, but this is simply wrong," said study author Dr. Paul Fisher, an associate professor in neurology, pediatrics and neurosurgery at Stanford University in Palo Alto, Calif..

According to his findings, published in the Aug. 20 issue of the Journal of Clinical Oncology, almost one-third of survivors needed special-education services. Many had to rely on medication for chronic headaches, bouts of nausea, pain and seizures. And only half of those eligible to drive a car did so, the study found.

Children treated with radiation therapy suffered more than those treated with surgery, the researchers noted.

Using chemotherapy in addition to radiation made no difference when it came to future disabilities, suggesting that lower doses of radiation with chemotherapy may be preferable to higher doses of radiation without chemotherapy, the researchers said.

When deciding which treatment to use, doctors look at a child's age, overall health and the specific type and size of the tumor. In some cases, surgery can remove the tumor. But if the tumor can't be removed completely, radiation and/or chemotherapy may be used.

In general, about 80 percent of patients receive surgery, 60 percent receive radiation therapy and 40 percent to 45 percent receive chemotherapy, a breakdown that is similar to the sample in the study, Fisher said.

Almost 70 percent of children diagnosed with brain cancer survive treatment these days, a statistic that calls into focus the need to look at a child's quality of life in the years following treatment, the researchers said.

"It's not OK to just measure disease control and survival. We need to know what children's lives will be like after therapies," Fisher said.

His team surveyed 134 former patients treated for various types of brain tumors at Stanford's Lucile Packard Children's Hospital, and their parents. The survey addressed the quality of life of the patients, whose mean age was just over 11 years. The researchers wanted to determine if the children had problems with everyday activities like running or bathing, if they had trouble sleeping or worried about the future, whether other children teased them and whether they had problems with their schoolwork, among other concerns.

The researchers used a simple questionnaire that took into account all aspects related to quality of life and compared the responses of the former patients to those of healthy children. Children as young as 5 years and those with special-education needs were able to answer the questions.

The study revealed that children with more aggressive or larger tumors were more impaired overall, possibly due to higher doses of radiation or to the fact that a larger area of the brain was being treated. The study also suggested that the older children were more aware of differences in their appearance, making them more socially isolated.

The findings support the results of previous studies showing that survivors of childhood brain tumors have more quality-of-life-related problems as they grow older. These earlier reports, however, had smaller sample sizes and looked only at a specific aspect of a quality of life, the researchers said.

Still, questions remain, said Dr. Sharon Gardner, an assistant professor of pediatrics at New York University Medical Center and director of the pediatric stem cell transplant program run by the medical center and Mount Sinai Hospital. She said future studies should address how quality of life changes over a longer period of time, and look at different groups of patients.

However, she added, the Stanford study is an important one because it points to the importance of considering quality of life now that so many children are surviving brain tumors.

Fisher said that designing studies that look at patients' quality of life after treatment for cancer "is a priority. We need to know what children's lives will be like after therapies. We need to research what therapies protect better the quality of life, as viewed from the patient and parents -- not just the doctor."

More information

For more on childhood brain tumors, visit the National Library of Medicine.

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