Lacey Sischo

Oral Health-related Quality of Life: What, Why, How, and Future Implications

Despite its relatively recent emergence over the past few decades, oral health-related quality of life (OHRQoL) has important implications for the clinical practice of dentistry and dental research. OHRQoL is a multidimensional construct that includes a subjective evaluation of the individual’s oral health, functional well-being, emotional well-being, expectations and satisfaction with care, and sense of self. It has wide-reaching applications in survey and clinical research. OHRQoL is an integral part of general health and well-being. In fact, it is recognized by the World Health Organization (WHO) as an important segment of the Global Oral Health Program (2003). This paper identifies the what, why, and how of OHRQoL and presents an oral health theoretical model. The relevance of OHRQoL for dental practitioners and patients in community-based dental practices is presented. Implications for health policy and related oral health disparities are also discussed. A supplemental Appendix contains a Medline and ProQuest literature search regarding OHRQoL research from 1990-2010 by discipline and research design (e.g., descriptive, longitudinal, clinical trial, etc.). The search identified 300 articles with a notable surge in OHRQoL research in pediatrics and orthodontics in recent years.

Health Disparities Among Children With Cleft

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.

Nasoalveolar molding: prevalence of cleft centers offering NAM and who seeks it.

Introduction Nasoalveolar molding (NAM) is a treatment option available for early cleft care. Despite the growing debate about the efficacy of nasoalveolar molding, questions remain regarding its prevalence and the demographic characteristics of families undergoing this technique prior to traditional cleft surgery. Objectives To determine the number of teams currently offering nasoalveolar molding and to identify salient clinical and sociodemographic variables in infants and families who choose nasoalveolar molding compared with those who choose traditional cleft care across three well-established cleft centers. Results Via phone surveys, 89% of the U.S. cleft teams contacted revealed that nasoalveolar molding is available at 37% of these centers. Chart reviews and phone correspondence with caregivers indicate that the average distance to the cleft center was 65.5 miles and caregiver age averaged 30.9 ± 5.7 years. Of families who chose nasoalveolar molding, 85% received total or partial insurance coverage. No difference in caregiver education, income, or distance to the clinic between treatment groups was found. On average, infants receiving nasoalveolar molding and cleft surgery had larger clefts and had more clinic visits than infants receiving traditional cleft surgery. Infants who were firstborn and those who did not have other siblings were more likely to receive nasoalveolar molding than were infants who were residing with other siblings. Conclusions Currently more than one-third of U.S. cleft centers offer nasoalveolar molding. Although the cleft size was larger in the nasoalveolar molding group, no treatment group differences in education, income, and distance to the clinic were found.

Examination of a Theoretical Model for Oral Health–Related Quality of Life Among Youths With Cleft

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.

An Overview of Children's Oral Health-Related Quality of Life Assessment: From Scale Development to Measuring Outcomes

The objectives of this paper are to present an overview of childrens oral health-related quality of life and include specific applications for using quality of life assessment in dental research. The process of developing pediatric oral health- related quality of life measures, in particular the Child Oral Health Impact Profile, is outlined. Examples of childrens oral health-related quality of life measurement in caries research are also provided. Quality of life outcomes are presented and discussed in the context of caries research. Lastly, the relevance of measuring clinically meaningful difference in the context of measuring outcomes research is highlighted with recommendations for future research.

Examining factors associated with oral health-related quality of life for youth with cleft.

Background: Patient-reported quality-of-life outcomes in cleft lip–cleft palate treatment are critical for evidence-based care. Scant data exist analyzing treatment from the patient’s perspective. The authors examined the interrelationship among variables associated with oral health–related quality of life among youth with cleft. Methods: As part of an ongoing longitudinal study, clinical evaluations and research questionnaire packets were completed before surgical recommendations were made (baseline). Participants completed the Child Oral Health Impact Profile, a validated oral health–related quality-of-life measure for children with cleft. During the baseline clinical evaluations, plastic surgeons determined whether surgical interventions were recommended within the year (expert determination represents a greater degree of current clinical need). General linear models incorporating surgical recommendation, gender, and age were fit for each subscale of and for the total Child Oral Health Impact Profile. Significant interaction terms were evaluated for their effect on the subscale. Results: Baseline assessments were obtained from 1200 participants (mean, 11.8 years; 57 percent male). Participants with a surgical recommendation had lower quality of life on all but the self-esteem subscale compared with those without a surgical recommendation (p < 0.002). Two subscales had statistically significant age-sex interactions (p < 0.003), whereas another subscale had a statistically significant surgery by sex interaction term (p = 0.027). Conclusions: Overall, youth for whom surgery is currently recommended had lower oral health–related quality-of-life scores on the Child Oral Health Impact Profile Total scale than those with no surgical recommendation; older female subjects had lower quality-of-life scores than male subjects. CLINICAL QUESTION/LEVEL OF EVIDENCE: Risk, II.

Coping With Cleft: A Conceptual Framework of Caregiver Responses to Nasoalveolar Molding

Objective To present a conceptual framework of caregiver coping and adaptation to early cleft care using nasoalveolar molding. Design In-depth interviews were conducted at three time points with caregivers of infants with cleft lip or cleft lip and palate whose children had nasoalveolar molding to treat their cleft. Qualitative data were analyzed using modified grounded theory. Results Most caregivers expressed initial apprehension and anxiety about the responsibilities of care associated with nasoalveolar molding (e.g., changing and positioning tapes, cleaning the appliance). In subsequent interviews, caregivers often reported positive feelings related to their active participation in their childs treatment for cleft. These positive feelings were associated with increased self-esteem and feelings of empowerment for the caregivers. Although caregivers also identified burdens associated with nasoalveolar molding (e.g., stress related to lip taping, concerns about the appliance causing sores in their childs mouth, travel to weekly appointments), they tended to minimize the impact of these issues in comparison with the perceived benefits of nasoalveolar molding. Conclusions Despite the increased burden of care, many caregivers of infants with cleft used nasoalveolar molding as a problem-focused coping strategy to deal with their childs cleft. Completing nasoalveolar molding was often associated with positive factors such as increased empowerment, self-esteem, and bonding with their infant.

Resiliency and socioemotional functioning in youth receiving surgery for orofacial anomalies

OBJECTIVES Restorative interventions for cleft lip and palate involve annual evaluations, adjunct treatment, and multiple surgeries. The purpose of this study was to investigate the longitudinal impact of cleft surgery on psychosocial functioning among youth with cleft. METHODS Data were derived from a 5-year, multicenter, prospective longitudinal study of children with cleft (N = 1196). Children completed psychological inventories for self-concept, anxiety, depression, mastery, and relatedness. Multilevel mixed-effects models were used to analyze the effects of craniofacial surgery for cleft on psychosocial outcomes over time. RESULTS There were 1196 participants at baseline, of whom 258 (27.5%) received a surgical intervention prior to their 1st follow-up visit. Approximately 78% of participants had cleft lip and palate, and 22% had cleft palate only. Surgery receipt was significantly associated with lower relatedness (β = -1.48, 95% CI = -2.91, -0.05) and mastery (β = -1.32, 95% CI = -2.49, -0.15) scores, although overall scores appeared to increase over time. Surgery was not related to anxiety (β = -0.15, 95% CI = -1.08, 0.79), depression (β = 0.18, 95% CI = -0.65, 1.01), and self-concept (β = -0.84, 95% CI = -1.83, 0.15). The treatment-time interaction was not significant. Significant differences in psychosocial functioning were found across sex, race/ethnicity, and age groups. CONCLUSIONS Surgery may have negative short-term impacts on psychosocial functioning, although effects may diminish over time. Given the limited postsurgical follow-up period, long-term change in psychological well-being and the moderating effects of surgery may not be fully realized. Further follow-up of children with cleft through adulthood to explore developmental trajectories of psychosocial functioning in more detail is recommended.

Minimally important difference of the Child Oral Health Impact Profile for children with orofacial anomalies

BackgroundThe Child Oral Health Impact Profile (COHIP) is an instrument designed to measure the self-reported oral health-related quality of life of children between the ages of 8 and 15, including domains for oral health, functional well-being, social-emotional well-being, school environment and self-image. The purpose of this study was to estimate the minimally important difference (MID) of the COHIP for patients with cleft lip/palate.MethodsData from a 6-year, prospective, longitudinal cohort study of children with cleft lip/palate were analyzed to estimate the MID. Analysis was restricted to patients with data at baseline and first follow-up and not receiving a surgical intervention in the intervening years (N = 281). MIDs were estimated via the anchor-based method, using the Global Assessment of Change, and the effect size distribution method.ResultsBased on the distributional method, the minimally important differences were 0.16 (oral health), 0.12 (functional), 0.22 (social-emotional), 0.21 (school environment) and 0.19 (self-image). MID anchor estimates for COHIP domains ranged from −0.32 to 0.84. The anchor-based and effect size MID estimates for the overall COHIP score were 2.95 and 0.25, respectively.ConclusionThe minimally important difference of the Child Oral Health Impact Profile is recommended for interpreting clinically meaningful change in patients with cleft lip/palate.

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