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

Abstract

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.

Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries

“…The finding of lower scores in those who need cleft-related surgery is in line with a study of 1200 youth with cleft lip and/or palate, which showed that surgical candidates reported lower health-related quality of life than nonsurgical candidates. 37 Our findings are also in agreement with Ranganathan and colleagues, 38 who found lower health-related quality of life in 71 children who wanted cleft revision surgery.…”

Challenges in conducting multicentre, multidisciplinary, longitudinal studies in children with chronic conditions

“…During the course of the study, some participating children received secondary cleft‐related surgery, while others did not. Further details regarding the study protocol and procedures have been previously published …”

“…With respect to quality of life, surgical intervention for CL/P was associated with an improvement in OHRQoL over time. However, a higher number of previous surgical interventions was also associated with lower self‐ and caregiver‐rated OHRQoL scores . Additionally, minimally important differences (MID) for clinically meaningful change were calculated for the study sample using both the anchor‐based and distribution criteria method .…”

“…Further details regarding the study protocol and procedures have been previously published. [2][3][4][5] Over the 6-year course of the study, a total of 787 surgeries (43% of the participants) were performed across six cleft treatment centres. Approximately 90% of participants completed baseline and one follow-up visit, 60% completed the study protocol (two followup visits postsurgery or baseline), 15% had pending surgical recommendations, and 25% were lost to follow-up.…”

Management of rare diseases of the Head, Neck and Teeth: results of a French population-based prospective 8-year study

“…Many syndromes present facial anomalies. For some of these anomalies no treatment is required, for example hypertelorism, but for many others surgery is necessary to restore appearance and function [7,8]. Facial dismorphologies have repercussions for oral functions: breathing, chewing, deglutition, phonation, smiling, mimicking and facial expressions.…”