Mind the gap: Informant discrepancies across domains of the Pediatric Quality of Life Index for intensive outpatient youth mental health care

Abstract Purpose To explore the relationships between youth and caregiver scores on the Pediatric Quality of Life Inventory (PedsQL) in an intensive outpatient youth mental health services setting. Methods This is a secondary analysis of routinely collected PedsQL data. Informant discrepancies between youth self-report and caregiver proxy-report were described. Differences across domains scores, and gender impacts on discrepancies were examined using Intra-Class Correlations and repeated measures ANOVA. The associations between age and discrepancies were examined using Spearman’s rho. A hypothesis testing approach was used to assess the validity of interpreting discrepancies between scores. Results 205 youth-caregiver dyads met eligibility criteria. The mean age was 14.8 +/- 1.7 and participants identified as boys (25.9%), girls (65.4%), and gender diverse (8.6%). ICC point estimates indicated poor agreement for all domains and global scores (0.378–0.487). Average absolute discrepancies varied from 12.0-17.3 across domains. There was a significant main effect of domain (p = 0.018) on discrepancies, but post-hoc tests were not significant. Age was significantly negatively associated with emotional and social domain discrepancies ( ρ =-0.187,-0.123, respectively), and gender had no significant effect on discrepancies (p = 0.867). For construct validity, our hypotheses were supported by the data. Conclusion Youth and caregiver PedsQL scores show poor agreement. Informant discrepancies are highly variable across dyads, but do not show a bias towards youth or caregivers consistently under- or over-reporting quality of life. Age appears to influence discrepancies, but the impact of gender is unclear. The validity of interpreting informant discrepancies is supported; however, more research is needed to guide clinical interpretation.