Health-Related Quality of Life in Children with Hemifacial Microsomia: Parent and Child Perspectives

作者：Khetani Mary A; Collett Brent R; Speltz Matthew L; Werler Martha M^*

来源：Journal of Developmental and Behavioral Pediatrics, 2013, 34(9): 661-668.

DOI：10.1097/DBP.0000000000000006

• health
• well-being
• subjective
• parent-report
• child-report
• craniofacial

Purpose: To compare health-related quality of life (HRQOL) among children with and without hemifacial microsomia (HFM) as assessed by parents and the children themselves during the elementary school years. Methods: One hundred thirty-six children with HFM (49 females, mean age = 6 years, 11.9 months, SD = 1.004) were compared with 568 matched controls (285 females, mean age = 6 years, 10.2 months, SD = 0.998) for parent and child responses on the PedsQL Version 4.0. Results: After adjustment for sociodemographic factors, parent-reported summary scores were worse for affected children than control group children for physical (effect sizes [ES] = 0.26, p = .004), social (ES = 0.34, p = .001), and school (ES = 0.32, p = .001) functioning. There were no significant mean differences in summary scores based on children%26apos;s self-reported functioning. Conclusions: Case-control mean differences in HRQOL were more apparent based on parent report, but not child self-report. Summary score findings suggest that case parents have concerns about their child%26apos;s HRQOL, particularly with respect to their child%26apos;s physical, social, and school functioning. Additionally, our findings highlight the potential differences between child and parent perspectives and the importance of collecting data from multiple reporters.

• 出版日期2013-12