摘要：Objectives. We evaluated relationships among physical and psychological indicators and oral health–related quality of life (OHRQOL) in youths with cleft. Methods. We recruited youths aged 7 to 18 years with cleft palate (n = 282) or cleft lip and palate (n = 918) and their caregivers into a 5-year observational investigation at 6 US treatment centers from 2009 to 2011. At baseline, youths completed surveys to assess psychological status. After clinical evaluation, 433 youths received a recommendation for surgery. We developed structural models from the baseline data incorporating age, gender, race, and cleft diagnosis to examine direct relationships between depressive symptoms and, in separate models, self-concept and sense of mastery and OHRQOL. Subsequent models examined the possible mediating effect of surgical recommendation. Results. Depressive symptoms were negatively and self-concept and self-efficacy were positively associated with OHRQOL. Surgical recommendation appeared to mediate the effect of psychological well-being, but not depression, on OHRQOL, even after adjustment for cleft diagnosis. In some models, individual-level characteristics were significant. Conclusions. Path analyses support the theoretical model and underscore the importance of examining positive psychosocial characteristics such as resiliency and self-concept in this patient population. Clefting is the second most common birth defect in the United States. 1 A cleft palate affects functional well-being through effects on speech, hearing, dental development, and eating; a cleft of the lip or primary palate also affects facial attractiveness. Such defects can influence youths' sense of self and well-being. We examined well-being and factors theoretically associated with quality of life (QOL) in youths with cleft conditions. Typically, individuals with cleft experience evaluations and treatment that begin in infancy and often last into young adulthood. Cleft defects are therefore considered chronic conditions that can affect QOL. 2,3 To date, numerous reports suggest that children with cleft have reduced self-concepts and are at risk for depression. 4 Such reports, however, are cross sectional, have small samples, deal with different age groupings, and often lack a conceptual framework. These reports also have inconclusive findings regarding the relationship of oral health–related QOL (OHRQOL) to gender and overall well-being in youths with cleft. The theoretical perspective underpinning our study is consonant with the World Health Organization’s definition of health as more than the absence of disease 5 and with its Quality of Life Group’s definition of QOL as an individual’s perceptions of his/her position in life in the context of culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns. 6 (pp1–2) Because QOL is now recognized as an essential in patient assessment in nearly every area of physical and mental health care, including oral health, 7 our goal was to adapt and evaluate a well-respected theoretical model by Wilson and Cleary 8 to examine QOL among youths with cleft. According to the Wilson and Cleary model, the determinants of QOL include biological–physiological factors, symptom and functional status, and general health perceptions within the context of individual and environmental characteristics. Our adaptation expanded the model to include OHRQOL. Specifically, our model examined how individual characteristics (e.g., age, race, gender), biological function (e.g., type of defect), psychological characteristics, and surgical recommendation (which represents an indicator of current clinical status) were linked to OHRQOL. Further, environmental or contextual factors related to caregiver characteristics (e.g., sociocultural factors) and access to care may also be linked because they may influence children’s oral health perceptions and related QOL. Our adaptation of the model allowed us to elaborate on psychosocial factors that are relevant among youths with cleft, who are at risk for negative psychosocial sequelae as a result of their condition. 4 Our model examined negative symptoms such as depression as well as positive psychological characteristics such as resiliency and self-concept, which have been shown to mediate the negative affect associated with a range of chronic conditions, including craniofacial conditions. 9 In sum, we expanded on Wilson and Cleary’s model to create a more comprehensive understanding of these complex interrelationships potentially associated with OHRQOL among this population seeking care. Health service researchers are designing studies to provide empirical data to support the use of this model in health 10–13 and oral health. 14–16 Over the past 2 decades, several OHRQOL tools have been developed for children and adults. 17–20 These measures broadly conceptualize oral health as a construct that encompasses general well-being and the ability to eat, speak, and socialize with confidence. Traditionally, such QOL measures have focused on measuring the negative impact of chronic conditions or disease. Although many studies that include psychological variables have exclusively examined negative affect such as anxiety and depression, social scientists are increasingly exploring positive factors such as resilience and self-efficacy as well. In fact, health-related QOL experts now recognize that such positive attributes are essential in QOL assessment 21–23 and warrant consideration during the development of models to examine health outcomes such as QOL.
