Childhood Brain Tumors Survivors Left with Life-long Impairments


Childhood brain tumors cast long shadows on survivors. These shadows are in the form of ongoing cognitive problems which affect the survivors level of education, employment and income, all in a negative way.

These findings are part of a massive Childhood Cancer Survivor Study conducted by nine major medical centers. Leah Ellenberg, PhD, a clinical faculty member of the David Geffen School of Medicine at the University of California, Los Angeles was the lead researcher. Their report has been published in the November issue of the journal Neuropsychology by the American Psychological Association.

Cancers of the central nervous system (CNS) are the most common solid malignancies in childhood. Approximately 2,200 children and adolescents in the United States are diagnosed with a brain tumor each year. Currently, more than half of all children diagnosed with a brain tumor will be cured of the disease.

These survivors are left with the shadows left by the tumors and the treatments. Given the risks now seen to confront survivors of CNS cancer, programs to support their transition to independent adult life are essential.

Ellenberg and colleagues sent a 25-item neurocognitive questionnaire to cancer survivors at least 16 years after a cancer diagnosis. Some 785 CNS cancer survivors; 5,870 survivors of non-CNS cancers such as leukemia, Hodgkin's disease, and bone tumors; and 379 siblings of CNS cancer survivors returned enough information to analyze. The researchers noted, “In a significant minority of cases, someone else responded for CNS cancer survivors, an informal sign of the difficulties some may be having.”


The study's four main hypotheses were all supported:

  • CNS cancer survivors reported significantly greater neurocognitive dysfunction than their siblings and than survivors of other types of cancer.
  • Although the greatest reported problems were in memory and task efficiency (highly rating such items as 'I forget what I am doing in the middle of things' and 'I am slower than others when completing my work'), all aspects of cognition surveyed were affected, including emotional regulation and organization. More than half the CNS cancer survivors reported significant problems with at least one task efficiency item, more than three times as many as among the sibling group.
  • The greatest neurocognitive problems were reported by CNS cancer survivors who had significant motor or sensory problems after treatment, who were treated with radiation to their brains, and who had tumors in the brain cortex rather than lower brain regions.
  • Those neurocognitive problems were linked to significantly poorer adaptation to adult life, as shown by lower achievement in education and in full-time employment and income, as well as less chance of being married.

Researchers also noted that medical complications such as stroke, paralysis, hearing impairment, and fluid buildup that required a shunt were more likely to cause problems across all cognitive functions.

Brain irradiation in particular affected task efficiency and memory. This was found to be dose related. Those who received more irradiation had more impairment.

Even low-risk brain tumor patients who had surgery but no radiation were impaired compared to other cancer survivors as a group.

The authors conclude, "It will be important to investigate the benefits of early and consistent use of compensatory strategies, including assistive technology, transitional facilities to promote independent living, and job placement and coaching, to enhance functional outcomes."

American Psychological Association Press Release
Neurocognitive Status in Long-Term Survivors of Childhood CNS Malignancies: A Report From the Childhood Cancer Survivor Study; Neuropsychology, Vol. 23, No. 6; Leah Ellenberg et al. (full text of article, pdf file)
National Institute of Health