Parent-reported social outcomes after treatment for pediatric embryonal tumors: a prospective longitudinal study

Abstract

Purpose: To examine longitudinal parent-reported social outcomes for children treated for pediatric embryonal brain tumors.

Patients and methods: Patients (N=220) were enrolled onto a multisite clinical treatment protocol. Parents completed the Child Behavior Checklist/6-18 at the time of their child's diagnosis and yearly thereafter. A generalized linear mixed effects model regression approach was used to examine longitudinal changes in parent ratings of social competence, social problems, and withdrawn/depressed behaviors with demographic and treatment factors as covariates.

Results: During the 5-year period following diagnosis and treatment, few patients were reported to have clinically elevated scores on measures of social functioning. Mean scores differed significantly from population norms, yet remained within the average range. Several factors associated with unfavorable patterns of change in social functioning were identified. Patients with high-risk treatment status had a greater increase in parent-reported social problems (P=.001) and withdrawn/depressed behaviors (P=.01) over time compared with average-risk patients. Patients with posterior fossa syndrome had greater parent-reported social problems over time (P=.03). Female patients showed higher withdrawn/depressed scores over time compared with male patients (P<.001). Patient intelligence, age at diagnosis, and parent education level also contributed to parent report of social functioning.

Conclusion: Results of this study largely suggest positive social adjustment several years after diagnosis and treatment of a pediatric embryonal tumor. However, several factors, including treatment risk status and posterior fossa syndrome, may be important precursors of long-term social outcomes. Future research is needed to elucidate the trajectory of social functioning as these patients transition into adulthood.

Fig 1.

Flow diagram of study participation. CBCL, Child Behavior Checklist.

Fig 2.

Patient risk status and parent-reported social problems over time (T scores: mean, 50; standard deviation, 10). Lower social problems scores reflect better functioning. Solid gold line indicates average risk; dashed gold lines indicate 95% CI. Solid blue line indicates high risk; dashed blue lines indicate 95% CI.

Fig 3.

Patient risk status and parent-reported social competence before and after mean time until first follow-up (0.86 years) using a discontinuous-slope generalized linear mixed effects model (T scores: mean, 50; standard deviation, 10). Higher social competence scores reflect better functioning. Solid blue line indicates high risk; dashed blue lines indicate 95% CI. Solid gold line indicates average risk; dashed gold lines indicate 95% CI.