Oral health-related quality of life in youth receiving cleft-related surgery: self-report and proxy ratings
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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.
KeywordsOral health-related quality of life Cleft lip/palate Longitudinal Patient-reported outcomes Caregiver (proxy) ratings
The authors recognize and thank the National Institutes of Health/National Institute for Dental and Craniofacial Research for supporting this research project, Quality of Life in Children with Cleft—DE018729 (H.L. Broder, PI). We appreciate the participation of the patients and their caregivers at the research sites. Lastly, we thank our research and clinical collaborators at New York University Langone Medical Center (R. Flores, PI), Children’s Hospital of Philadelphia (C. Crerand, D. Sarwer, PIs), Children’s Healthcare of Atlanta (J. Riski, PI), University of North Carolina, (M. Stein, PI); and University of Illinois at Chicago, (J. Rosenberg, PI).
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
Informed consent/assent was obtained from all individual participants included in the study.
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