Oral health-related quality of life in youth receiving cleft-related surgery: self-report and proxy ratings

Hillary L. Broder, Maureen Wilson-Genderson, Lacey Sischo

Research output: Contribution to journalArticlepeer-review


Purpose: This paper evaluated the impact of cleft-related surgery on the oral health-related quality of life (OHRQoL) of youth with cleft over time. Methods: 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. Results: 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. Conclusions: 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.

Original languageEnglish (US)
Pages (from-to)859-867
Number of pages9
JournalQuality of Life Research
Issue number4
StatePublished - Apr 1 2017


  • Caregiver (proxy) ratings
  • Cleft lip/palate
  • Longitudinal
  • Oral health-related quality of life
  • Patient-reported outcomes

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health


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