title: Oral health-related quality of life in youth receiving cleft-related surgery: self-report and proxy ratings.
abstract: This paper evaluated the impact of cleft-related surgery on the oral health-related quality of life (OHRQoL) of youth with cleft over time.
  
  
  
  Data were derived from a 5-year, multi-center, prospective, longitudinal study of 1196 youth with cleft lip and/or palate and their caregivers. Eligible youth were between 7.5 and 18.5 years old, spoke English or Spanish, and were non-syndromic. During each observational period, which included baseline, and 1- and 2-year post-baseline follow-up visits, youths and their caregivers completed the Child Oral Health Impact Profile, a validated measure of OHRQoL. Multilevel mixed-effects models were used to analyze the effects of receipt of craniofacial surgery on OHRQoL over time.
  
  
  
  During the course of this study a total of 516 patients (43 %) received at least one surgery. Youth in the surgery recommendation group had lower self- (β = -2.18, p < 0.05) and proxy-rated (β = -2.92, p < 0.02) OHRQoL when compared to non-surgical self- and proxy-rated OHRQoL at baseline. Both surgical and non-surgical youth (β = 3.73, p < 0.001) and caregiver (β = 1.91, p < 0.05) ratings of OHRQoL improved over time. There was significant incremental improvement (time × surgery interaction) in self-reported OHRQoL for youth postsurgery (β = 1.04, p < 0.05), but this postsurgery increment was not seen in the caregiver proxy ratings.
  
  
  
  Surgical intervention impacts OHRQoL among youth with cleft. Youth who were surgical candidates had lower baseline self- and caregiver-rated OHRQoL when compared to non-surgical youth. Youth who underwent cleft-related surgery had significant incremental improvements in self-rated but not caregiver (proxy)-rated OHRQoL after surgery.
authors.affiliation: Department of Cariology and Comprehensive Care, New York University College of Dentistry, 137 E. 25th Street, 5th Floor, New York, NY, 10010, USA. hillary.broder@nyu.edu.
authors.forename: Hillary L
authors.initials: HL
authors.lastname: Broder
authors.affiliation: Department of Public Health, Temple University, Philadelphia, PA, USA.
authors.forename: Maureen
authors.initials: M
authors.lastname: Wilson-Genderson
authors.affiliation: Department of Cariology and Comprehensive Care, New York University College of Dentistry, 137 E. 25th Street, 5th Floor, New York, NY, 10010, USA.
authors.forename: Lacey
authors.initials: L
authors.lastname: Sischo
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002662:Child Health Services; D002972:Cleft Palate / Q000523:psychology / Q000601:surgery*; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D009909:Oral Health; D011446:Prospective Studies; D019727:Proxy; D011788:Quality of Life; D057566:Self Report; D014481:United States
keywords: Caregiver (proxy) ratings; Cleft lip/palate; Longitudinal; Oral health-related quality of life; Patient-reported outcomes