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

Khetani, Mary A. ScD*; Collett, Brent R. PhD; Speltz, Matthew L. PhD; Werler, Martha M. ScD

Journal of Developmental & Behavioral Pediatrics: November/December 2013 - Volume 34 - Issue 9 - p 661–668
doi: 10.1097/DBP.0000000000000006
Original Articles
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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’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's HRQOL, particularly with respect to their child'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.

*Department of Occupational Therapy, Colorado State University, Fort Collins, MA;

Slone Epidemiology Center at Boston University, Boston, MA;

Department of Psychiatry and Behavioral Sciences, University of Washington School of Medicine, Seattle, WA.

Address for reprints: Martha M. Werler, ScD, Slone Epidemiology Center, 1010 Commonwealth Avenue, 4th Floor, Boston, MA 02215; e-mail: werler@bu.edu.

Supported by funds from the National Institute for Dental and Craniofacial Research Grant R01 DE 11939-0.

Disclosure: The authors declare no conflict of interest.

Received October , 2012

Accepted August , 2013

© 2013 by Lippincott Williams & Wilkins