Individuals with clefts have a myriad of special needs including speech and language problems, facial differences, atypical dental development, malocclusion, learning disabilities, chronic ear infections as well as associated psychosocial sequelae. Cleft habilitation is a lengthy process involving multiple evaluations and treatment by a team of specialists. This process is time-consuming and costly. The primary dental, speech and surgical evaluations/treatment start before age one and extend at least until 18 years of age. Many children/youth experience yearly evaluations and have secondary surgical interventions to improve their speech, appearance and dental development. The overall rationale for secondary interventions is to improve individuals'quality of life (QoL). To date, no systematic investigation has examined patient-oriented outcomes like QoL in school-aged children with cleft. This project will enroll children (ages 8-17) with cleft palate only (CPO) and cleft lip and palate and their caregivers who are evaluated at five renown craniofacial centers (two in the southeast and three in the northeast) in a large cross-sectional study (approximately 2,000). A sample of children who undergo secondary surgery (N=500) will be followed in an observational longitudinal study with evaluations at baseline, and {at one year and two years post surgery}. The surgery groups are youth: 1. receiving secondary palatal surgery for speech who have cleft lip and palate;2. receiving secondary palatal surgery for speech who have cleft palate;3. receiving secondary lip/nose revisions for facial appearance;and 4. receiving alveolar bone grafts for dental development. {Children who are not undergoing secondary surgical interventions will constitute two comparison groups: 1. those not receiving surgical recommendations (N=400);and those who reject the surgical recommendation (N<50)}. Data from the Children's Oral Health Impact Profile (COHIP), a recently validated culturally-relevant measure of oral health-related quality of life (OHRQoL), PedsQL, Beck's Anxiety, Depression, Self-concept Scales {and the Resilience Scales} will be collected to describe the children evaluated at baseline. These patient-oriented outcomes and psychological factors will be utilized in the longitudinal study. Additionally the interrelationships among QoL and biological (e.g., type/extent of defect), surgical history, demographic and {contextual factors} will be analyzed. Hierarchical linear modeling (HLM) will be used to detect statistically significant as well as clinically meaningful change over time. Given the disparities in health care utilization and the thrust to control costs, it is important not only to examine biological factors like type of cleft and extent of defect but {contextual factors like social class, family process}, payer source and demographic factors (i.e., ethnicity). The overall aim of the study is to improve our understanding of QoL and related issues among youth with cleft and examine clinically meaningful change in school-aged children undergoing secondary surgery. This study may provide insight into the efficaciousness of cleft habilitation with regards to improving OHRQoL and overall QoL and may identify subgroups where targeted interventions are most needed.
Individuals with clefts have multiple special needs including speech and language problems, facial differences, atypical dental development, malocclusion, learning disabilities, chronic ear infections as well as associated psychosocial sequelae. Although children with cleft lip and palate and cleft palate only have multiple evaluations and treatment before adulthood, it is undocumented whether these children's quality of life improves following secondary surgical interventions. The overall aim of this study is to increase our understanding of the patient-oriented outcomes like oral health-related quality of life and health-related quality of life in children between 8 and 18 years old with cleft lip and palate and cleft palate only.
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