摘要：Oral health-related quality of life (OHRQoL) is a multidimensional construct that measures well-being associated with the teeth, mouth, and face. This cross-sectional study examined OHRQoL, demographic data, and clinical indicators in 839 treatment-seeking youths with cleft from 6 geographically diverse cleft treatment centers. Individuals without health insurance and representing ethnic minorities had lower OHRQoL scores on the Child Oral Health Impact Profile and a higher rate of surgical recommendations. These findings imply a risk factor for reduced OHRQoL and unmet needs among vulnerable youths with clefts. In 2000, the US Surgeon General’s report, “The Face of the Child: Children and Oral Health,” highlighted the importance of children’s oral health to their overall health and well-being and the profound impact that oral health can have on the quality of children’s lives. 1 Although oral health-related quality of life (OHRQoL) has been investigated in adults, it has not been extensively investigated in children, largely because of the lack of developmentally appropriate, validated instruments. 2,3 The recently validated Child Oral Health Impact Profile (COHIP) is designed specifically to study impact in youths across oral health conditions for epidemiological studies as well as evaluative studies. 4 Children with cleft have lower OHRQoL than do pediatric samples and children seeking dental or orthodontic care. 4 According to a recent Centers for Disease Control and Prevention report, cleft lip and/or palate (CLP) is the second most common birth defect—occurring 1 in 575 live births. 5 Because it affects speech and language development, dental development, and facial appearance, individuals with cleft have been recognized as a special needs population by the Maternal and Child Health Bureau. 6 Clefting of the secondary palate is associated with hypernasality and speech intelligibility disorders as well as ear infections, liquid leaking from the nose, and hearing loss. Clefting of the primary palate (lip and alveolus) is associated with facial disfigurement (differences), dental anomalies, learning disabilities, and associated psychosocial issues (e.g., self-concept, anxiety, depression). Cleft and related craniofacial habilitation involves a lengthy process of evaluations and treatment by a multidisciplinary team of specialists. Treatment typically begins during the first year of life and terminates by late adolescence or early adulthood. Although the primary surgical interventions are usually completed during the first few years of life, a complex myriad of evaluations and interventions that address tooth development, speech, and facial appearance often ensue during the school-age years until the habilitation process is complete. Not surprisingly, cleft and craniofacial interventions are costly. 7 The number of interventions for individuals can vary from 3 or 4 to as many as 20 or more surgeries before the affected individual reaches early adulthood. The medical costs of habilitation average more than $100 000 per individual. 7,8 This figure does not measure other impacts such as psychosocial sequelae (e.g., teasing, missing school, multiple doctor visits by youths and their caregivers, lost wages). Currently, the debate in the United States over health insurance is mounting. It is estimated that in 2010, 44% or 81 million adults between 19 and 64 years of age were either uninsured or underinsured (an increase from 75 million in 2007 and 61 million in 2003). 9 The burden of care for people with cleft conditions without insurance is enormous in both emotional and economic terms. Drawing on data from the first phase of a multicenter longitudinal study investigating quality of life (QoL) and related outcomes among children undergoing secondary cleft surgery, we examined OHRQoL in a sample of treatment-seeking children with cleft using the COHIP. Specifically, we explored associations between OHRQoL and age, race/ethnicity, gender, and type of payor. COHIP scores were also examined comparing those who received a current surgery recommendation within the year and those without such a recommendation. Current recommendation may be a proxy for extent of defect and unmet needs. Means were compared using a general linear model; analyses were conducted using SAS version 9.2 (SAS Institute, Cary, NC). In short, the purpose of this investigation was to examine surgical needs and OHRQoL in youths with cleft conditions across sociodemographic variables often associated with health disparities.
