Caregiver stress from a childs diagnosis impacts a caregivers ability to participate in treatment decisions, comply, and manage long-term illness. We aim to compare caregiver stress in children with craniosynostosis at diagnosis and post-operatively.Methods: This prospective study includes caregivers of pediatric craniosynostosis patients receiving operative intervention. Demographics and Parenting Stress Index (PSI)/Pediatric Inventory for Parents (PIP) surveys at baseline (pre-op), 3-months post-op, and 6-months post-op were completed. PSI scores between 15-80 are considered normal, with >85 being clinically significant and requiring follow-up. Larger PIP scores represent increased frequency and difficulty of stressful events due to the childs illness. Pairwise comparisons were performed with the Wilcoxon Rank-Sum test. Multivariate analysis was performed to assess for PSI and PIP predictors.
Of 107 caregiver (83% Caucasian), there were 62 mothers and 40 fathers. There were 68 and 45 responses at 3-months and 6-months post-op, respectively. Regarding the baseline group, over 80% were 20-40 years old; 58% had < 2 years of college education. Median household income ranged from $45-60,000. There was no significant difference between median baseline PSI percentile (28%, IQR 12-56) compared to 3-months and 6-months. Both median PIP frequency (89 vs. 74, p=0.006) and difficulty (79 vs. 71, p=0.007) were lower at 3-months; no significant difference was seen at 6-months (frequency: 95 vs. 91, p=0.667; difficulty: 82 vs. 80, p=0.335). Female caregivers experienced significantly higher PIP frequency (91 vs. 79, p=0.043) but not difficulty (83 vs. 71, p=0.068). Open-repair was associated with higher caregiver PIP frequency (102 vs. 82, p < 0.001) and difficulty (95 vs. 75, p=0.006) than endoscopic repair.
Stress levels range from normal to clinically significant in our caregivers, with gender and open-repair predicting higher stress. Stress decreased at 3-months post-op before increasing at 6-months. Intervention targeting caregiver stress should be explored to maintain lower stress observed at 3-months after surgery.