Our ongoing series, “Brain Tumor Facts & Figures,” provides information and data that can be used in your advocacy, fundraising, and awareness-raising efforts by presenting statistics that can help convey the difficult realities our community is up against. This info can help make a case for support to your members of Congress, state legislators, family, friends, co-workers, and other members of your community and network.
For a full breakdown of all the standard brain tumor statistics and facts, one can always view our Brain Tumors Quick Facts webpage.
For national Childhood Cancer Awareness Month (CCAM), we look at a new study out from St. Jude Children’s Research Hospital about the potential long-term impact of pediatric brain tumors – and their treatments – on survivors.
The research, which used data from St. Jude’s Life Time Cohort Study, assessed functional and social independence among 306 survivors of pediatric brain tumors. While the long-term negative effects of pediatric brain tumors and their treatments can have on a child’s developing brain have been well known, this is one of the first studies to explicitly quantify some of the ways those negative effects can ultimately impact how survivors are able to live their lives.
WHAT WAS MEASURED: This study assessed the level of independence achieved by adult survivors of pediatric brain tumors. The researchers collected data on survivors’ employment, living situation, assistance with personal care/routine activities, getting a driver’s license, marital status, and other factors to determine the level of independence the individuals had achieved. The team categorized adult survivors of pediatric brain tumors – based on these measures – as either: independent, moderately independent, or non-independent. Those assessed had to be at least 10-years post diagnosis (10-41 years, median of 17 years). Ages of study participants ranged from 18-53, with a median age of about 25. 103 of the survivors had been diagnosed with astrocytomas, 77 with medulloblastoma, 36 with ependymoma, and 63 with other tumor types.
WHAT IT FOUND: Many adult survivors of pediatric brain tumors do not achieve independence. The study found that only about 40% of survivors of pediatric brain tumors achieved complete independence. While only 40% were classified as independent, 34% were determined to be moderately independent, and 26% as non-independent. Factors that were indentified as increasing a survivor’s risk for non-independence were (in order of increased risk): Craniospinal radiation, hydrocephalus with shunting, and a younger age at diagnosis.
WHAT THEY ARE SAYING: “Unfortunetly, we know that survivors are not achieving personal and professional milestones consistent with what we would expect healthy young or middle-aged adults to attain,” said Dr. Tara Brinkman of St. Jude Children’s Research Hospital, who led the study.
SIGNIFICANCE: While there were a number of limitations to the study – and further research is needed to confirm these results – these data begin to paint a picture of the real-world impact pediatric brain tumors can have on adult survivors, even decades after their diagnosis and treatment. It is important to quantify these impacts in order to aid in the designing efforts that could ultimately reverse, prevent, or lessen the negative long-term impact a pediatric brain tumor can have on patients and survivors.
“Screening for cognitive and physical performance deficits earlier in the course of survivorship will help us identify patients who may be on this trajectory toward nonindependence,” Dr. Brinkman said. “Identifying survivors at risk early on would then allow us to intervene and potentially mitigate the adverse outcomes in adulthood.”
To support pediatric brain tumor patients, survivors, their families – and to honor those we’ve lost to this awful illness – please visit our main CCAM landing page to find ways you can take action: www.braintumor.org/take-action/ccam-2018.