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Comparing oral health-related quality of life (OHRQoL) measures can facilitate selecting the most appropriate one for a particular research question/setting. Three child OHRQoL measures Child Perceptions Questionnaire (CPQ_11⁻14), the Child Oral Health Impact Profile (COHIP) and the Caries Impacts and Experiences Questionnaire for Children (CARIES-QC) were used with 335 10- to 13-year-old participants in a supervised tooth-brushing programme in New Zealand. The use of global questions enabled their validity to be examined. Assessments were conducted at baseline and after 12 months. All three measures had acceptable internal consistency reliability. There were moderate, positive correlations among their scores, and all showed differences in the impact of dental caries on OHRQoL, with children with the highest caries experience having the highest scale scores. Effect sizes were used to assess meaningful change. The CPQ_11⁻14 and the CARIES-QC showed meaningful change. The COHIP-SF score showed no meaningful change. Among children reporting improved OHRQoL, baseline and follow-up scores differed significantly for the CPQ_11⁻14 and CARIES-QC measures, although not for the COHIP-SF. The three scales were broadly similar in their conceptual basis, reliability and validity, but responsiveness of the COHIP-SF was questionable, and the need to compute two different scores for the CARIES-QC meant that its administrative burden was considerably greater than for the other two measures. Replication and use of alternative approaches to measuring meaningful change are suggested.

This article describes child oral health-related quality of life measures and provides some examples of their use in determining the effect of clinical interventions, such as dental treatment under general anesthesia, orthodontic treatment, and treatment of orofacial clefting.

Background/Purpose: Quality of life (QoL) is an integral parameter in understanding, assessing, and improving children's well-being across health conditions. Assessing oral health-related quality of life (OHRQoL) is crucial to evaluating patient well-being and measuring treatment efficacy in those with oral-facial conditions. The Child Oral Health Impact Profile (COHIP) is a validated instrument created to measure the OHRQoL of school-aged children (ages 8-18), yet no measure of OHRQoL exists for preschool children. The purpose of this study was to develop and validate a preschool version of the COHIP (COHIP-PS) for children aged 2 to 5. Methods/Description: A standard multistage process consisting of item selection, face validity testing, item impact testing, reliability and validity testing, and confirmatory factor analysis was used to develop the COHIP-PS. A cross-sectional convenience sample of caregivers with children 2 to 5 years old from 4 groups at varying locations completed the item clarity and impact forms. Groups were recruited from pediatric health clinics or preschools/day care centers, speech clinics, dental clinics, or cleft/craniofacial centers. Participants' children had a variety of oral health-related conditions, including caries, cleft lip and/or palate, or speech/language disorders.
Result(s): A total of 327 caregivers were included in the sample. Participants included caregivers from the cleft group (n = 81), speech group (n = 69), community group (n = 75), and dental group (n = 102). Approximately 84% of the overall caregiver sample were female, whereas 48% of the children were female. For children, 43% were white, followed by 33% Latino, 11% black, 7% Pacific Islander, 4.7% Other, and 1.5% Indian. For the cleft sample, children had cleft lip and palate (62%), cleft palate only (29%), or cleft lip only (9%). The COHIP-PS was found to have acceptable internal validity (= 0.71) and high test-retest reliability (0.87). Although discriminant validity results indicated significant differences across study groups, the overall magnitude of differences was modest. Results from confirmatory factor analyses support the use of a 4-factor model consisting of 12 items across oral health, functional well-being, socialemotional well-being, and self-image domains.
Conclusion(s): QoL is integral factor in understanding and assessing children's well-being. The COHIP-PS is a validated OHRQoL measure for preschool children with cleft or other oral conditions

Background/Purpose: Quality of life (QoL) data provide an assessment of treatment outcomes complementary to standard clinical measures. Yet, it is critical to consider time restraints when measuring QoL, especially for patients requiring multidisciplinary assessments. QoL instrument short forms are a preferred alternative to lengthy measures if they provide comparable, valid results. This study examined longitudinal oral health-related quality of life (OHRQoL) data among participants followed for cleft care using the long and short form of the Child Oral Health Impact Profile (COHIP). The objectives include: (1) reporting OHRQoL data over time; and (2) comparing the results from the validated, original long form of the COHIP to the validated COHIP-SF (short form). Methods/Description: Data were systematically and prospectively collected by 6 cleft teams representing geographically and ethnically diverse patients and their caregivers (CGs). CGs and their children independently completed the COHIP in conjunction with their team visits. The long form of the validated COHIP includes 34 items across 5 domains; the validated COHIP-SF includes 19 items from the original COHIP across 3 domains (Oral Health, Functional Well-being, and Socioemotional Well-being). The sample is composed of 1196 youth who averaged 12 years old at baseline. Team recommendations for surgery included: secondary palate or fistula, bone graft, lip and/or nose revisions, and orthognathic surgery. Forty-three percent (N= 514) had surgery over the course of the 6-year grant period. Individuals were followed at baseline, 1 and 2 years postsurgery, or 1 and 2 years postbaseline for those who did not have surgery.
Result(s): Children who had cleft-related surgery and their CGs had significantly lower self- and CG-rated COHIP scores (P < .01) at baseline and follow-up compared to children who did not have surgery and their CGs. The COHIP-SF provides comparable OHRQoL scores to the original COHIP for children with cleft (Pearson correlation = 0.96) and their CGs (Pearson correlation = 0.97) at each data collection point. Analyses also demonstrate that the original COHIP and COHIP-SF scores significantly improved (P < .01) among the surgical patients and their caregivers over time. In sum, the correlation between the short and long forms is uniformly high; the short form takes ~5 minutes to complete.
Conclusion(s): The results indicate that youth with a surgical recommendation and their CGs reported lower COHIP scores at baseline and postsurgery than individuals without a surgical recommendation. Significant improvement in OHRQoL was observed over time among those who had surgery. The COHIP-SF provides comparable OHRQoL scores to the original COHIP for children with cleft and their CGs

OBJECTIVE:To explore factors related to completion of surgery recommendations among children with cleft lip and palate (CLP) or cleft palate only (CPO). DESIGN/METHODS:Multicenter prospective longitudinal cohort study (2009-2015). SETTING/METHODS:Six cleft centers in the United States. PATIENTS/PARTICIPANTS/METHODS:A diverse sample of 1186 youth aged 7.5 to 18.5 years with CLP or CPO and a caregiver. RESULTS:Data were collected from child-caregiver dyads at baseline and up to 3 follow-up visits. Of the 765 surgeries recommended during the study period, 83 were postponed and 597 were completed; this represents a completion rate of 78%. There were multiple reasons identified by patients for why the remaining 85 recommended surgeries were not completed. Children with nonprivate insurance were more likely to postpone recommended surgeries. Hispanic/Latino and Asian children had fewer surgeries compared to whites/Caucasians. Greater severity in rated speech differences was associated with more surgeries. Among participants who had completed all recommended surgeries, providers rated over 86% as having normal or mildly different facial appearance and 83% as having a normal or mild speech intelligibility rating. Similarly, caregivers rated 80% of facial appearance and 78% of speech positively. Approximately 25% of children had an additional surgical recommendation at the end of the study. CONCLUSIONS:The majority of surgical recommendations were completed with positive outcomes in facial appearance and speech intelligibility by provider and caregiver ratings. Several factors contributed to surgical recommendations not being completed and the results underscore the importance of examining socioeconomic and demographic disparities in surgical care.

Quality of life is a valid patient-reported parameter that provides an assessment of treatment need or outcomes complementary to standard clinical measures. Such patient-reported assessments are particularly salient when examining chronic conditions with prolonged treatment trajectories, such as cleft lip and palate. This critical review identifies key questions related to ongoing research on the oral health-related quality of life (OHRQoL) in children with cleft and caregiver well-being. Details of the design and results from 2 longitudinal multicenter studies are presented. This article also provides an update on recent published reports regarding OHRQoL in individuals with cleft. Methodological issues in OHRQoL research are discussed, including condition-specific versus generic instruments, incorporating positive items in OHRQoL instruments, calculating minimally important differences in OHRQoL, implementing mixed methods design, and utilizing validated short assessment forms in OHRQoL research. Finally, new directions for research in cleft as a chronic condition are identified and discussed.

OBJECTIVE: The Child Oral Health Impact Profile (COHIP) is a validated instrument created to measure the oral health-related quality of life of school-aged children. The purpose of this study was to develop and validate a preschool version of the COHIP (COHIP-PS) for children aged 2-5. BASIC RESEARCH DESIGN: The COHIP-PS was developed and validated using a multi-stage process consisting of item selection, face validity testing, item impact testing, reliability and validity testing, and factor analysis. PARTICIPANTS: A cross-sectional convenience sample of caregivers having children 2-5 years old from four groups completed item clarity and impact forms. Groups were recruited from pediatric health clinics or preschools/daycare centers, speech clinics, dental clinics, or cleft/craniofacial centers. Participants had a variety of oral health-related conditions, including caries, congenital orofacial anomalies, and speech/language deficiencies such as articulation and language disorders. MAIN OUTCOME MEASURE: COHIP-PS. RESULTS: The COHIP-PS was found to have acceptable internal validity (a = 0.71) and high test-retest reliability (0.87), though internal validity was below the accepted threshold for the community sample. While discriminant validity results indicated significant differences across study groups, the overall magnitude of differences was modest. Results from confirmatory factor analyses support the use of a four-factor model consisting of 11 items across oral health, functional well-being, social-emotional well-being, and self-image domains. CONCLUSIONS: Quality of life is an integral factor in understanding and assessing children's well-being. The COHIP-PS is a validated oral health-related quality of life measure for preschool children with cleft or other oral conditions.

OBJECTIVES: Conducting longitudinal, multicentre, multidisciplinary research for individuals with chronic conditions can be challenging. Despite careful planning, investigative teams must adapt to foreseen and unforeseen problems. Our objective is to identify challenges encountered and solutions sought in a recently completed observational, longitudinal study of youth with cleft lip and palate as well as their caregivers. METHODS: Data for analysis were derived from a 6-year, multicentre, prospective, longitudinal study of youth with cleft conducted from 2009 to 2015 that examined oral health-related quality of life and other related clinical observations over time in youth who had cleft-related surgery compared to those who did not. Youth and their caregivers participating in this study were followed at one of six geographically diverse, multidisciplinary cleft treatment centres in the USA. RESULTS: Establishing effective communication, ensuring protocol adherence, safeguarding data quality, recognizing and managing differences across sites, maximizing participant retention, dealing with study personnel turnover, and balancing/addressing clinical and research tasks were particularly exigent issues that arose over the course of the study. Attending to process, ongoing communication within and across sites, and investigator and clinician commitment and flexibility were required to achieve the stated aims of the research. CONCLUSION: Studying children with cleft and their caregivers over time created both foreseen and unforeseen challenges. Solutions to these challenges are presented to aid in the design of future longitudinal research in individuals with chronic conditions.

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- (beta = -2.18, p < 0.05) and proxy-rated (beta = -2.92, p < 0.02) OHRQoL when compared to non-surgical self- and proxy-rated OHRQoL at baseline. Both surgical and non-surgical youth (beta = 3.73, p < 0.001) and caregiver (beta = 1.91, p < 0.05) ratings of OHRQoL improved over time. There was significant incremental improvement (time x surgery interaction) in self-reported OHRQoL for youth postsurgery (beta = 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.

OBJECTIVE: To report the associations of oro-nasal fistulae on the patient-centered outcomes oral health-related quality of life and self-reported speech outcomes in school aged-children. DESIGN: Prospective, nonrandomized multicenter design. SETTING: Six ACPA-accredited cleft centers. PARTICIPANTS: Patients with cleft palate at the age of mixed dentition. INTERVENTIONS: None. MAIN OUTCOME MEASURES: Prevalence of fistula and location of fistula (Pittsburgh Classification System). Patients were placed into one of three groups based on the following criteria: alveolar cleft present, no previous repair (Group 1); alveolar cleft present, previously repaired (Group 2); no congenital alveolar cleft (Group 3). Presence of fistula and subgroup classification were correlated to oral health-related quality of life (Child Oral Health Impact Profile [COHIP]) and perceived speech outcomes. RESULTS: The fistula rate was 5.52% (62 of 1198 patients). There was a significant difference in fistula rate between the three groups: Group 1 (11.15%), Group 2 (4.44%), Group 3 (1.90%). Patients with fistula had significantly lower COHIP scores (F1,1188 = 4.79; P = .03) and worse self-reported speech scores (F1,1197 = 4.27; P = .04). Group 1 patients with fistula had the lowest COHIP scores (F5,1188 = 4.78, P =.02) and the lowest speech scores (F5,1188 = 3.41, P = .003). CONCLUSIONS: Presence of palatal fistulas was associated with lower oral health-related quality of life and perceived speech among youth with cleft. The poorest outcomes were reported among those with the highest fistula rates, including an unrepaired alveolar cleft.