Adult survivors of childhood brain tumours may struggle to live independently

Adults who had brain cancer as children may have a harder time living independently and having rich professional and personal lives than people who didn’t have these tumours in childhood, a U.S. study suggests.

The 306 childhood brain tumour survivors in the study were 26 years old on average and had typically been diagnosed with cancer about 18 years earlier. Overall, 40 percent had achieved levels of independence similar to what might be seen in 20-somethings without a history of cancer, managing things like a home of their own, a job, a driver’s license, and a romantic relationship or marriage.

However, 34 percent were only moderately independent, meaning they accomplished some but not all milestones typical of early adulthood. Another 26 percent were nonindependent, meaning they needed assistance with personal care and navigating daily life.

Radiation therapy appeared to influence independence. Approximately one-third of the participants were treated with cranial radiation; these young adults were four times more likely to be nonindependent than childhood cancer survivors who didn’t get radiation.

“Unfortunately, historical or conventional approaches to delivering cranial radiation often exposed significant amounts of healthy brain tissue to radiation,” said lead study author Tara Brinkman of St. Jude Children’s Research Hospital in Memphis, Tennessee.

“In children, this results in cell and tissue damage to areas of the brain that are important for physical, cognitive, and emotional development,” Brinkman said by email. “This damage often leaves survivors with long-term cognitive (i.e. problems with memory and problem solving) and physical impairments (i.e. muscle weakness, difficulties with balance and mobility) that impact their ability to become independent.”

The good news for children being treated for tumors today is that newer approaches and types of radiation spare healthy tissue surrounding the brain tumor, Brinkman said. Sparing healthy tissue should result in fewer long-term problems for cancer survivors.

“In fact, we found that survivors who were treated in more recent decades were more likely to be independent as adults than survivors who were treated in earlier decades,” Brinkman added.

All of the participants in the study had been diagnosed with brain cancer at least a decade earlier.

Cancer survivors were less likely to live independently if they were diagnosed earlier in childhood, researchers report in the Journal of Clinical Oncology.

The study wasn’t a controlled experiment designed to prove whether or how a diagnosis of brain cancer or treatment for tumors might directly impact independence levels in adulthood, however.

Even so, the results build on previous research showing that childhood brain cancer survivors are more likely to be unemployed, unmarried, not college graduates, an unable to handle personal care without help, said Dr. Karen Effinger, a researcher at Emory University School of Medicine in Atlanta who wasn’t involved in the study.

“In patients with brain tumors, the tumor location itself may lead to long-term disabilities,” Effinger said by email. “Since the brain is the central processing area, the tumor pressing on the brain may lead to problems with movement, cause seizures, change personality, or lead to learning disabilities.”

Patients and families should recognize the risk of physical and mental health challenges down the line and take steps to address this during childhood when possible, Effinger said.

“It is important for patients and their families to work with their treating team to get early rehabilitation services (physical, occupational, speech therapy) to try to limit some of the longer effects from treatment,” Brinkman advised. “It is also important for these survivors and their families to work with education specialists to help them achieve in school and learn adaptive skills that may aid in independence, and programs like vocational rehabilitation can help survivors with job assistance.”