BACKGROUND: Childhood brain tumor diagnoses are stressful for families. Children 
diagnosed with craniopharyngioma (Cp) present with particularly challenging 
medical and cognitive problems due to tumor location and associated 
biophysiologic comorbidities. This study examined parental distress in a sample 
of families of patients with Cp treated with proton beam therapy to identify 
factors for targeting psychological intervention.
PROCEDURE: Prior to (n = 96) and 1 year after (n = 73) proton therapy, parents 
of children diagnosed with Cp (9.81 ± 4.42 years at baseline; 49% male) 
completed a self-report measure of distress, the Brief Symptom Inventory (BSI). 
Children completed cognitive assessment measures at baseline; medical variables 
were extracted from the study database.
RESULTS: At baseline, t-tests revealed parents reported higher levels of 
distress than normative expectations on Anxiety, Depression, Global Severity, 
and Positive Symptom Distress BSI scales (P < 0.05). Linear mixed effects models 
revealed parent report measures of child executive dysfunction and behavioral 
issues were more predictive of parental distress than patients' cognitive 
performance or medical status (P < 0.05). Models also revealed a significant 
reduction only in Anxiety over time (t = -2.19, P < 0.05). Extensive 
hypothalamic involvement at baseline predicted this reduction (P < 0.05).
CONCLUSION: Parents experience significant distress before their child begins 
adjuvant therapy for Cp, though parental distress appears largely unrelated to 
medical complications and more related to parent perceptions of child cognitive 
difficulties (vs. child performance). Importantly, this may be explained by a 
negative parent reporting style among distressed parents. Knowledge of 
socio-emotional functioning in parents related to patient characteristics is 
important for optimization of psychological intervention.