{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T14:33:35Z","timestamp":1790174015810,"version":"4.1.0"},"reference-count":30,"publisher":"SAGE Publications","issue":"11","license":[{"start":{"date-parts":[[2022,6,8]],"date-time":"2022-06-08T00:00:00Z","timestamp":1654646400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100003690","name":"Cleft Palate Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100003690","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["The Cleft Palate Craniofacial Journal"],"published-print":{"date-parts":[[2023,11]]},"abstract":"<jats:sec>\n                    <jats:title\/>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title\/>\n                    <jats:p>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).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title\/>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title\/>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/10556656221105766","type":"journal-article","created":{"date-parts":[[2022,6,8]],"date-time":"2022-06-08T12:29:38Z","timestamp":1654691378000},"page":"1474-1483","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":5,"title":["A Multisite Study Investigating Child and Parent Proxy Reported Quality of Life in Children With Cleft Lip and\/or Palate"],"prefix":"10.1177","volume":"60","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0204-9583","authenticated-orcid":false,"given":"Celia E.","family":"Heppner","sequence":"first","affiliation":[{"name":"Department of Psychiatry at the University of Texas Southwestern Medical Center, Dallas, TX, USA"},{"name":"Fogelson Plastic and Craniofacial Surgery Center, Children's Health\/Children's Medical Center, Dallas, TX, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0040-6396","authenticated-orcid":false,"given":"Canice E.","family":"Crerand","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, The Ohio State University College of Medicine and Center for Biobehavioral Health, The Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH, USA"},{"name":"Department of Plastic Surgery, The Ohio State University College of Medicine and Center for Biobehavioral Health, The Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudia","family":"Crilly Bellucci","sequence":"additional","affiliation":[{"name":"Cleft-Craniofacial Clinic, Departments of Psychology and Pediatric Plastic Surgery, Shriners Hospitals for Children-Chicago, IL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Farah","family":"Sheikh","sequence":"additional","affiliation":[{"name":"Division of Plastic and Reconstructive Surgery, The Hospital for Sick Children, Toronto, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Suzanne","family":"Woodard","sequence":"additional","affiliation":[{"name":"Lancaster Cleft Palate Clinic, Lancaster, PA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meredith","family":"Albert","sequence":"additional","affiliation":[{"name":"Cleft-Craniofacial Clinic, Departments of Psychology and Pediatric Plastic Surgery, Shriners Hospitals for Children-Chicago, IL, USA"},{"name":"Craniofacial Center, Department of Surgery, University of Illinois at Chicago, Chicago, IL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5360-7517","authenticated-orcid":false,"given":"Amy L.","family":"Conrad","sequence":"additional","affiliation":[{"name":"Division of Developmental and Behavioral Pediatrics, The Stead Family Department of Pediatrics, University of Iowa Carver College of Medicine, Iowa City, IA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathleen A.","family":"Kapp-Simon","sequence":"additional","affiliation":[{"name":"Craniofacial Center, Department of Surgery, University of Illinois at Chicago, Chicago, IL, USA"},{"name":"Cleft-Craniofacial Clinic, Department of Research, Shriners Hospitals for Children-Chicago, Chicago, IL, 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