Abstract
PURPOSE: We assess parent-child agreement regarding child's health-related quality of life (HRQoL) in children operated for congenital glaucoma (CG). METHODS: A total of 121 children aged 8 to 18 years (mean age, 11.8 years) operated for CG (mean duration since surgery, 10.2 years) and their parents (mean age, 36.5 years) completed the child and parent versions of the Kidscreen-27 questionnaire, respectively. Psychometric properties of Kidscreen-27 were assessed using Rasch analysis, and child-parent agreement regarding child's HRQoL was investigated using the Bland-Altman limits of agreement (LoA) method. RESULTS: Minor modifications in the rating scale and deletion of few misfitting items resulted in a psychometrically robust Kidscreen-23 questionnaire. Average parental HRQoL score was higher than the child's own ratings, with a significant difference between their scores (mean ± standard deviation [SD] difference = 0.53 ± 2.58 logits, P = 0.02; lower LoA [95% CI], -4.52 [-5.31 to -3.72] and upper LoA [95% CI], 5.58 [4.79-6.38]). The range of child-parent agreement was wide and bidirectional, with parents tending to underestimate and overestimate their child's HRQoL. Younger children and girls showed greater discordance in their HRQoL with parental reports than adolescents and boys, respectively. CONCLUSIONS: Discordance between CG child's self-report of HRQoL and parent's report indicate that both groups perceive the broader impact of living with CG very differently. TRANSLATIONAL RELEVANCE: The HRQoL as reported by the child with CG and by his/her parent should be viewed as being complementary, rather than interchangeable. Both assessments should be taken into account in clinical practice and research studies.