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Many adult survivors of pediatric CNS tumors do not achieve independence
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Only 40% of survivors of pediatric central nervous system tumors achieved complete independence, according to results from a single institution cohort study.
Certain treatment regimens and declines in physical function increased survivors’ risk for nonindependence.
“Survival rates have improved dramatically over the past several decades,” Tara M. Brinkman, PhD, assistant faculty member in the department of epidemiology and cancer control at St. Jude Children's Research Hospital, 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.”
Using data from the St. Jude Lifetime Cohort Study, Brinkman and colleagues assessed functional and social independence among 306 survivors (median age at time of study, 25.3 years; range, 18.9-53.1) of CNS tumors, including 130 with astrocytoma, 77 with medulloblastoma, 36 with ependymoma and 63 with other CNS tumors.
The median time since diagnosis was 16.8 years (range, 10.6 to 41.8 years).
To determine independence, researchers collected data on employment, living independently, assistance with personal care/routine activities, obtaining a driver’s license and marital status.
Researchers categorized 40% of survivors as independent, 34% as moderately independent and 26% nonindependent.
About one-third of patients received craniospinal irradiation and about one-third received focal irradiation.
Results showed craniospinal irradiation increased risk for nonindependence fourfold (OR = 4.2; 95% CI, 1.69-10.44). Hydrocephalus with shunting (OR = 2.57; 95% CI, 1.31-5.05) and younger age at diagnosis (OR = 1.24; 95% CI, 1.14-1.35) also increased risk for nonindependence.
The investigators defined physical performance impairments based on scores in the lower 10th percentile for measures of aerobic capacity, strength, flexibility, balance, mobility and adaptive function.
Limitations in aerobic physical function (OR = 5.47; 95% CI, 1.78-16.76), flexibility (OR = 3.66; 95% CI, 1.11-12.03) and adaptive function (OR = 11.54; 95% CI, 3.57-37.27) increased risk for nonindependence.
Nonindependent survivors reported reduced physical-related quality of life compared with independent survivors. However, they did not report reduced mental health-related quality of life.
“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,” Brinkman said in the release. “Identifying survivors at risk early on would then allow us to intervene and potentially mitigate the adverse outcomes in adulthood."
The main limitation of the study was the inclusion of a nonparticipant cohort. Survivors of medulloblastoma, the group most likely to receive craniospinal irradiation, appeared more likely to be participants than nonparticipants. In addition, nonparticipants may not have been able to return to the treating hospital for follow-up due to nonindependence, which may have led to underestimation of the prevalence of nonindependence.
“Future research is needed to understand the longitudinal trajectory of independence in survivors as well as the effect of changes in frontline therapies on degree of independence,” the researchers wrote.
“Because survivors in this sample were a mean age of 26 years, they may acquire greater independence from their primary caregivers as they continue to transition through adulthood; however, with the heighten risk of developing chronic health conditions and frailty, survivors’ independence also may be compromised as they age,” they added. – by Cassie Homer
Disclosures: Brinkman reports no relevant financial disclosures. Please see the study for all other authors’ relevant financial disclosures.
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