Journal article
A Multisite Study Investigating Child and Parent Proxy Reported Quality of Life in Children With Cleft Lip and/or Palate
The Cleft palate-craniofacial journal, Vol.60(11), pp.1474-1483
11/2023
DOI: 10.1177/10556656221105766
PMID: 35675171
Abstract
This observational, multisite cohort study explored health-related quality of life (HRQoL) in children with cleft lip and/or palate (CL/P), including interrater agreement and ratings for this group relative to clinical cutoff scores and published means for healthy and chronically ill children.
Participants (338 children ages 8-10 years, 45.9% male and their parents, 82.0% female) across 6 sites completed the Pediatric Quality of Life Inventory Generic Core Scales (PedsQL).
Intraclass correlation revealed poor interrater agreement for most HRQoL domains. Although ratings were generally higher than those expected for children with a chronic illness, child ratings were below healthy means for school functioning, and parent proxy ratings were below healthy means for all domains except physical functioning. Lower ratings consistent with chronic illness means were found for self-reported emotional and psychosocial functioning in children with cleft lip and palate (CLP), as well as parent proxy-reported emotional, school, and psychosocial functioning for children with cleft palate (CP). Scores were most likely to be in the clinical range for children with CP for social, school, and total functioning.
Although parent proxy report provides important information about observed functioning, poor interrater agreement indicates that both child and parent proxy reported HRQoL should be included in outcomes assessment for CL/P. HRQoL ratings may be higher for children with CL/P compared to youth with other chronic illnesses, but psychosocial functioning may be negatively impacted when compared with healthy youth, particularly for emotional, social, and school functioning in children with CLP or CP.
Details
- Title: Subtitle
- A Multisite Study Investigating Child and Parent Proxy Reported Quality of Life in Children With Cleft Lip and/or Palate
- Creators
- Celia E Heppner - Fogelson Plastic and Craniofacial Surgery Center, Children's Health/Children's Medical Center, Dallas, TX, USACanice E Crerand - The Ohio State UniversityClaudia Crilly Bellucci - Shriners Hospitals for Children - ChicagoFarah Sheikh - Division of Plastic and Reconstructive Surgery, The Hospital for Sick Children, Toronto, Ontario, CanadaSuzanne Woodard - Lancaster Cleft Palate Clinic, Lancaster, PA, USAMeredith Albert - University of Illinois ChicagoAmy L Conrad - Division of Developmental and Behavioral Pediatrics, The Stead Family Department of Pediatrics, 4083University of Iowa Carver College of Medicine, Iowa City, IA, USAKathleen A Kapp-Simon - Shriners Hospitals for Children - Chicago
- Resource Type
- Journal article
- Publication Details
- The Cleft palate-craniofacial journal, Vol.60(11), pp.1474-1483
- DOI
- 10.1177/10556656221105766
- PMID
- 35675171
- NLM abbreviation
- Cleft Palate Craniofac J
- eISSN
- 1545-1569
- Grant note
- DOI: 10.13039/100003690, name: Cleft Palate Foundation
- Language
- English
- Electronic publication date
- 06/08/2022
- Date published
- 11/2023
- Academic Unit
- Pediatric Psychology; Stead Family Department of Pediatrics; Iowa Neuroscience Institute; Craniofacial Anomalies Research Center
- Record Identifier
- 9984267657902771
Metrics
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