Congruence of Parent-Report, Self-Report, and Performance-Based Neuropsychological Functioning in Pediatric Acute Lymphoblastic Leukemia Survivors
Acute Lymphoblastic Leukemia (ALL) is thought to have long-term cognitive effects, and clinicians often rely on parent report to screen for cognitive impairment during survivorship, despite limited congruence with neuropsychological performance and susceptibility to parental factors such as stress. This study was the first to investigate the moderating effect of parental stress on the congruence between reported child functioning and neuropsychological performance in pediatric ALL.
Based on prior literature, performance-based, parent-report, and self-report measures were expected to show significantly worse child functioning compared to norms, with parents expected to report elevated stress compared to norms. Parental stress was expected to moderate the congruence between parent report and neuropsychological performance or self-report, with more stressed parents overestimating child impairment.
A relatively large (N=107) sample of pediatric ALL survivors treated on chemotherapy-only protocols completed neuropsychological screening and standardized questionnaires on cognitive, behavioral, and emotional functioning at an annual follow-up visit (minimum six months post-treatment completion). Parents completed standardized questionnaires on child cognitive, behavioral, and emotional functioning; and parental stress and mood.
Independent t-tests showed average overall cognitive functioning compared with normative data, but higher-than-expected frequencies of impairment (≤ 2nd percentile) in attention and executive functioning. ANOVA/ANCOVA analyses showed greater methotrexate exposure and younger age of diagnosis are associated with worse attention and processing speed performances. Parental stress and depression were lower than expected, likely indicating good parental adjustment.
Correlation analyses revealed low to moderate (r = .21 - .41) congruence between parent report and neuropsychological performance; parent- and self-reported behavioral/emotional functioning were weakly associated. Moderation analyses indicated ratings of parents reporting mild stress were more congruent with neuropsychological performance than ratings of parents reporting no stress (ΔR2 = .05, p < .05), suggesting parents reporting at least some stress are more attuned to subtle aspects of child functioning.
Contemporary treatment protocols show generally intact child cognitive functioning, though some are vulnerable to late effects. Parental psychological factors may steer clinicians toward performance-based methods of child assessment. Longitudinal studies with healthy and matched controls are necessary to fully understand the variable course and expression of late cognitive effects in pediatric leukemia survivors.