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

• Published in: Quality of life research Vol. 26; no. 4; pp. 859 - 867
• Main Authors: Broder, Hillary L., Wilson-Genderson, Maureen, Sischo, Lacey
• Format: Journal Article
• Language: English
• Published: Cham Springer 01.04.2017; Springer International Publishing; Springer Nature B.V
• Subjects: Adolescent; Adult; Birth defects; Caregivers; Child; Child Health Services; Children & youth; Chronic illnesses; Cleft Palate - psychology; Cleft Palate - surgery; Female; Health care access; Humans; Intervention; Longitudinal Studies; Male; Maxillofacial surgery; Medicine; Medicine & Public Health; Oral Health; Oral hygiene; Patients; Prospective Studies; Proxy; PROXY RATINGS; Public Health; Quality of Life; Quality of Life Research; Ratings & rankings; Self Report; Sociology; Studies; Surgery; Surgical outcomes; United States; Longitudinal; Patient-reported outcomes; Caregiver (proxy) ratings; Oral health-related quality of life; Cleft lip/palate
• ISSN: 0962-9343; 1573-2649; 1573-2649
• DOI: 10.1007/s11136-016-1420-5

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 postbaseline 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 selfand 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.