Survivors of childhood central nervous system tumors are known to be at an increased risk of long-term morbidity, mortality, neurocognitive impairment, psychological distress, stroke, and other adverse outcomes that persist across their lifespans. Now a new study reveals how those diagnoses affect specific "real-life outcomes" for those survivors in terms of education, employment, and income into adulthood (Cancer 2019; doi.org/10.1002/cncr.32186).
Researchers looked at a group of 181 adult survivors of pediatric low-grade gliomas who were part of the Childhood Cancer Survivor Study and compared outcomes to a group of matched controls. Factors considered were standardized neuropsychological tests, IQ tests, educational attainment, occupation, and income.
The data showed that, decades after treatment, the glioma survivors had poorer neuropsychological scores, as well as having lower levels of education, employment, and income compared with the matched control group.
"Lifelong surveillance of survivors of pediatric low-grade gliomas may be warranted as life events, stages, and transitions (employment, family, and aging) present new challenges and risks," the study authors noted in the paper.
In an interview with Oncology Times, here's what else lead study author, M. Douglas Ris, PhD, Professor in the Section of Psychology in the Department of Pediatrics at Baylor College of Medicine and a clinical neuropsychologist at Texas Children's Hospital in Houston, said about the work.
1 Why was looking at these outcomes important when considering late effects for individuals with these childhood cancers?
"There is a fair amount of research on the neurocognitive effects (typically in the form of IQ) seen in children treated for cancer in general-and pediatric brain tumors, in particular. There is much less research on the late effects for non-malignant brain tumors and even less on effects extending into adulthood.
"While this research with neurocognitive measures is very important, you cannot assume that these effects translate directly into 'real-life' effects. Measures of socioeconomic status (educational attainment, occupation, income) help us to understand how these neurocognitive liabilities translate into, or become, real-life challenges. This then helps us to develop better tracking and surveillance programs that could also inform better and earlier interventions to improve the quality of life of survivors.
"The key findings were that, even in the most benign brain tumors (low-grade glioma) that were treated with the least toxic treatments available at the time, neuropsychological effects extend well into adulthood and, moreover, these effects are associated with real-life consequence in the form of lower educational attainment, lower occupational status, and lower income. This study has now documented these effects on cognition and socioeconomic status in far greater detail than was available previously thus highlighting the need for continued long-term surveillance of these survivors."
2 The study would seem to have a small sample, but you used a matching technique with a control group. Why?
"One-to-one matching of each survivor with his or her own sibling was not feasible. But, the Childhood Cancer Survivor Study has a cohort of siblings of childhood cancer survivors from which we selected a comparison group that was not significantly different from the sample of survivors in various demographic characteristics, such as age, gender, socioeconomic status of the family of origin, etc.
"Compared to epidemiologic research, the sample size was small. However, such research is typically based on available survey data or questionnaires mailed to participants. While this type of research provides breadth, it does not provide the depth that we were interested in.
"By bringing participants into 14 testing centers in the U.S. and Canada, we were able to conduct highly detailed testing over the course of 2-3 hours, thus providing an unprecedented level of detail about the neuropsychological effects in these survivors. The sibling comparison group also allowed greater precision in estimating effects late into adulthood."
3 What is the bottom-line, takeaway message about your research?
"A history of pediatric brain tumor has ongoing implications for the health and adjustment of adult patients of all ages. Methods for following these patients as they transition from pediatric to adult health care can be improved.
"A chronic illness model of care is most appropriate even for diseases considered 'benign' that were successfully treated in childhood and adolescence. Finally, when you study these survivors in detail, you come away with a better appreciation that their stories are not just of ongoing risk, but also of resilience in overcoming endless obstacles to lead full and rewarding lives.
"The results of this study highlight the urgency in continuing to develop effective treatments for pediatric brain tumors that mitigate untoward, downstream effects on the development of these children. Important also is the increased awareness that 'late effects' don't end in childhood and adolescence, but extend throughout the lives of survivors with real-life consequences."