Only 40% of Pediatric CNS Cancer Survivors Achieve Full Independence as Adults


Sixty percent of adult survivors of pediatric CNS tumors do not achieve full functional and social independence, according to results from a study conducted by researchers at St. Jude Children’s Research Hospital and the University of Tennessee Health Science Center.

Tara Brinkman, PhD

Tara Brinkman, PhD

Tara Brinkman, PhD

Sixty percent of adult survivors of pediatric CNS tumors do not achieve full functional and social independence, according to results from a study conducted by researchers at St. Jude Children’s Research Hospital and the University of Tennessee Health Science Center.1

Investigators assessed 306 adult survivors who completed baseline evaluations as part of the St. Jude Lifetime Cohort Study. The study evaluated several indicators of independence, including living independently, employment, assistance with personal care and/or routine needs, marital status, and possession of a driver’s license. Participants were also evaluated for physical performance impairment, which was defined as scores <10th percentile for aerobic capacity, adaptive function, balance, flexibility, strength, and mobility.

Forty percent of adult survivors were deemed independent, 34% were moderately independent, and 26% were nonindependent. Independent patients had achieved “independence consistent with societal expectations.” Moderately independent patients are not fully independent, but can do some of the things expected of an adult.

Nonindependent survivors (27%) were more likely (P <.001) to need assistance with personal care compared with independent (1%) and moderately independent (2%) survivors, and were less likely (P <.001) to have a driver’s license (95% vs 13% vs 8%, respectively). Nonindependent survivors (78%) were also significantly more likely (P <.001) to require help with routine needs compared with the independent (11%) and moderately independent (4%) cohorts.

Rates of full-time employment (62% vs 47%), driving (87% vs 92%), and needing assistance with routine (11% vs 4%) or personal needs (1% vs 2%) were comparable between the independent and moderately independent groups. However, the moderately independent cohort was significantly less likely to live independently (99% vs 6%; P <.001) or to have a history of marriage (60% vs 11%; P <.001).

“Survival rates have improved dramatically over the past several decades,” first author Tara Brinkman, PhD, an assistant member of the St. Jude Department of Epidemiology and Cancer Control and the Department of Psychology, said in a press release. “Unfortunately, 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.”

According to the National Cancer Institute’s SEER database, 5-year relative survival for patients aged 0 to 19 years diagnosed with brain and other CNS tumors increased from 66.5% from 1990 to 1992 to 75.5% from 2008 to 2014.2

The median patient age in the St. Jude study was 25.3 years (range, 18.9-53.1), 82.3% of participants were white, and 56.9% were male. Astrocytoma (42.5%) was the most common diagnosis, followed by medulloblastoma (25.2%), and ependymoma (11.8%). The median age at diagnosis was 8.6 years (range, 0.1-22.7) and the median interval since diagnosis was 16.8 years (range, 10.6-41.8). Roughly 66% of patients received cranial radiation therapy. Overall, 33.7% of all participants received focal irradiation and 32.7% received craniospinal (CSI) irradiation.

After adjusting for concurrent chronic health conditions and intellectual impairment, investigators assessed multivariable models that took associations between physical performance and failure to achieve independence into account. Adaptive physical function (odds ratio [OR], 11.54; 95% CI, 3.57-37.27), aerobic capacity (OR, 5.47; 95% CI, 1.78-16.76), flexibility (OR, 3.66; 95% CI, 1.11-12.03), and leg strength (OR, 15.28; 95% CI, 2.61-89.56) were associated with increased risk for nonindependence.

The strongest predictor for nonindependence was cognitive impairment. Brinkman et al found that nonindependent survivors were more likely to have severe impairment in attention, memory, and executive function.

Patients who received CSI had a 4.2-fold greater risk for nonindependence (OR, 4.20; 95% CI, 1.69-10.44) on multivariate analysis. Younger age at diagnosis (OR, 1.24; 95% CI, 1.14-1.35) and shunting for hydrocephalus (OR, 2.57; 95% CI, 1.31-5.05) were also associated with an increased risk for nonindependence.

Investigators found an association between functional independence and health-related quality of life (HRQOL), but not between emotional distress symptoms and HRQOL. Nonindepenent survivors experienced reduced physical HRQOL compared with independent survivors, though that was not the case for physical function (P <.001) or role limitations as a result of general health (P <.001)

Brinkman said in the press release that improvements in 5- and 10-year survival mean that physicians can focus more on improving patient quality of life. She suggested that earlier interventions may help survivors achieve independence.

“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,” she said. “Identifying survivors at-risk early on would then allow us to intervene and potentially mitigate the adverse outcomes in adulthood.”


  1. Brinkman TM, Ness KK, Li Z, et al. Attainment of functional and social independence in adult survivors of pediatric CNS tumors: a report from the St Jude Lifetime Cohort Study [published online August 9, 2018]. J Clin Oncol. doi: 10.1200/JCO.2018.77.9454.
  2. National Cancer Institute SEER Cancer Statistics Review, 1975-2015. Published April 2018. Accessed August 14, 2018.
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