Faculty Bibliography

BACKGROUND: The 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. METHODS: Data 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. RESULTS: Based 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. CONCLUSION: The minimally important difference of the Child Oral Health Impact Profile is recommended for interpreting clinically meaningful change in patients with cleft lip/palate.

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 (beta = -1.48, 95% CI = -2.91, -0.05) and mastery (beta = -1.32, 95% CI = -2.49, -0.15) scores, although overall scores appeared to increase over time. Surgery was not related to anxiety (beta = -0.15, 95% CI = -1.08, 0.79), depression (beta = 0.18, 95% CI = -0.65, 1.01), and self-concept (beta = -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.

Background/Purpose: This study sought to understand caregivers' (CGs') responses to early cleft lip/palate care for their infants receiving traditional cleft surgery or Nasoalveolar Molding (NAM) and traditional cleft surgery. Given the controversy around caregiver burden, the research questions included: 1) Are there treatment group differences in CGs' psychosocial adjustment over time?, 2) How do CGs cope with their infant's cleft and cleft treatment during the first year of life?, and 3) How do resources and demands affect family adaptation among CGs of infants with cleft over time? Methods/Descriptions: A prospective, mixed methods multicenter longitudinal study was conducted among CGs (N=118) seeking treatment for their infants' cleft lip and palate at one of six cleft treatment centers in the U.S. Participants were in one of two treatment groups: traditional cleft surgery only or NAM plus traditional cleft surgery. The CGs completed semi-structured interviews and standardized questionnaires (Parent Stress Index, Family Environment Scale, Coping Health Inventory for Parents, Generalized Anxiety Disorder scale, and the Patient Health Questionnaire) assessing psychosocial well-being and family impact at three time points: the beginning of treatment (~1 month of age), pre-lip surgery (~3-5 months of age), and post-palate surgery (~12-13 months of age). Multi-level modeling was used to longitudinally assess CGs' psychosocial outcomes. Results: While the first year was demanding for all CGs, NAM onset and the child's lip surgery were particularly stressful times. CGs used optimism, problem-solving behavior, and social support to cope with this stress. Qualitatively, CGs' ability to balance cleft treatment demands with their psychosocial resources and coping strategies influenced family adaptation. Questionnaire results indicated that the NAM treatment group experienced more rapid declines in the likelihood of anxiety and depressive symptoms between the first and second visits coupled with more rapid declines in anxiety and depressive symptoms over time when compared to those in the traditional cleft surgery group (p<0.05). The groups did not differ in stress levels at baseline, and both groups' stress decreased over time, though the NAM group reported lower levels of stress over time (p<0.05). The NAM treatment group reported significantly improved coping at pre-lip surgery and at post palate visits compared to CGs in the traditional treatment group. Conclusions: CGs of NAM-treated infants experienced more positive psychosocial outcomes than CGs whose infants had traditional cleft surgery. Results from the mixed methods support the Family Adjustment and Adaptation Response Model as used in pediatric chronic condition research

OBJECTIVE: This study sought to understand caregivers' (CGs') responses to early cleft lip/palate care for their infants. METHOD: A prospective, mixed methods multicenter longitudinal study was conducted among CGs (N = 118) seeking treatment for their infants' cleft lip and palate or cleft lip only at 1 of 6 cleft treatment centers in the United States. Participants were in 1 of 2 treatment groups: traditional care only or nasoalveolar molding (NAM) plus traditional care. The CGs completed semistructured interviews and standardized questionnaires assessing psychosocial well-being and family impact at 3 time points: the beginning of treatment ( approximately 1 month of age), prelip surgery ( approximately 3-5 months of age), and postpalate surgery ( approximately 12-13 months of age). Multilevel modeling was used to longitudinally assess CGs' psychosocial outcomes. RESULTS: Although the first year was demanding for all CGs, NAM onset and the child's lip surgery were particularly stressful times. CGs used optimism, problem-solving behavior, and social support to cope with this stress. Qualitatively, CGs' ability to balance cleft treatment demands with their psychosocial resources and coping strategies influenced family adaptation. Qualitative and quantitative results indicated CGs of NAM-treated infants experienced more rapid declines in anxiety and depressive symptoms and better coping skills over time than CGs whose infants had traditional care. CONCLUSION: CGs of NAM-treated infants experienced more positive psychosocial outcomes than CGs whose infants had traditional care. Results from the mixed model support the family adjustment and adaptation response model as used in pediatric chronic condition research. (PsycINFO Database Record

BACKGROUND: Despite the increasing use of nasoalveolar molding in early cleft treatment, questions remain about its effectiveness. This study examines clinician and caregiver appraisals of primary cleft lip and nasal reconstruction with and without nasoalveolar molding in a nonrandomized, prospective, multicenter study. METHODS: Participants were 110 infants with cleft lip/palate (62 treated with and 48 treated without nasoalveolar molding) and their caregivers seeking treatment at one of six high-volume cleft centers. Using the Extent of Difference Scale, standard photographs for a randomized subset of 54 infants were rated before treatment and after surgery by an expert clinician blinded to treatment group. Standard blocked and cropped photographs included frontal, basal, left, and right views of the infants. Using the same scale, caregivers rated their infants' lip, nose, and facial appearance compared with the general population of infants without clefts before treatment and after surgery. Multilevel modeling was used to model change in ratings of infants' appearance before treatment and after surgery. RESULTS: The expert clinician ratings indicated that nasoalveolar molding-treated infants had more severe clefts before treatment, yet both groups were rated equally after surgery. Nasoalveolar molding caregivers reported better postsurgery outcomes compared with no-nasoalveolar molding caregivers (p < 0.05), particularly in relation to the appearance of the nose. CONCLUSIONS: Despite having a more severe cleft before treatment, infants who underwent nasoalveolar molding were found by clinician ratings to have results comparable to those who underwent lip repair alone. Infants who underwent nasoalveolar molding were perceived by caregivers to have better treatment outcomes than those who underwent lip repair without nasoalveolar molding. CLINICAL QUESTION/LEVEL OF EVIDENCE: Therapeutic, II.

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 child's 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 child's 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 child's cleft. Completing nasoalveolar molding was often associated with positive factors such as increased empowerment, self-esteem, and bonding with their infant.

Objective : To examine family functioning related to sociodemographic and clinical characteristics in youth with cleft lip and/or palate (CL/P). Design : Cross-sectional, multisite investigation. Setting : Six U.S. cleft centers. Patients/Participants : A diverse sample of 1200 children with CL/P and their parents. Main Outcome Measure : Parents completed the Family Environment Scale (FES), which assesses three domains of family functioning: cohesion (or closeness), expressiveness (open expression of feelings), and conflict. Demographic and clinical characteristics were also assessed including race, ethnicity, type of insurance, and surgical recommendations. Results : The FES scores for families seeking team evaluations for their youth with CL/P (mean age = 11.6 years) fall within the average range compared with normative samples. Families receiving surgical recommendations for their youth also had FES scores in the average range, yet families of children recommended for functional surgery reported greater cohesion, expressiveness, and less conflict compared with those recommended for aesthetic surgery (P < .05). For cohesion and expressiveness, significant main effects for race (P = .012, P < .0001, respectively) and ethnicity (P = .004, P < .0001, respectively) were found but not for their interaction. No significant differences were found on the conflict domain. Families with private insurance reported significantly greater cohesion (P < .001) and expressiveness (P < .001) than did families with public insurance. Conclusions : Family functioning across domains was in the average range. However, observed differences by race, ethnicity, type of insurance, and surgical recommendation may warrant consideration in clinical management for patients and families.

Previous studies have shown that a communications program using patient instructors (PIs) facilitates data-gathering and interpersonal skills of third-year dental students. The aim of this study was to address the question of whether those skills are retained into the students' fourth year and generalized from the classroom to the clinic. In the formative training phase, three cohorts of D3 students (N=1,038) at one dental school received instruction regarding effective patient-doctor communication; interviewed three PIs and received PI feedback; and participated in a reflective seminar with a behavioral science instructor. In the follow-up competency phase, fourth-year students performed two new patient interviews in the clinic that were observed and evaluated by clinical dental faculty members trained in communications. Mean scores on a standardized communications rating scale and data-gathering assessment were compared over training and follow-up sessions and between cohorts with a linear mixed model. The analysis showed that the third-year students' mean communication and data-gathering scores increased with each additional encounter with a PI (p<0.05) and that communication scores were not only maintained but increased during the fourth-year follow-up competency evaluations (p<0.05). Based on changes in the communications curriculum, prior instruction facilitated the students' clinical communication performance at baseline (p<0.05). This study suggests that the current Clinical Communications program improved students' data-gathering and interpersonal skills. Those skills were maintained and generalized through completion of the D4 students' summative competency performance in a clinical setting.

Obtaining an esthetic and functional primary surgical repair in patients with complete cleft lip and palate (CLP) can be challenging because of tissue deficiencies and alveolar ridge displacement. This study aimed to describe surgeons' assessments of presurgical deformity and predicted surgical outcomes in patients with complete unilateral and bilateral CLP (UCLP and BCLP, respectively) treated with and without nasoalveolar molding (NAM). Cleft surgeon members of the American Cleft Palate-Craniofacial Association completed online surveys to evaluate 20 presurgical photograph sets (frontal and basal views) of patients with UCLP (n = 10) and BCLP (n = 10) for severity of cleft deformity, quality of predicted surgical outcome, and likelihood of early surgical revision. Five patients in each group (UCLP and BCLP) received NAM, and 5 patients did not receive NAM. Surgeons were masked to patient group. Twenty-four percent (176/731) of surgeons with valid e-mail addresses responded to the survey. For patients with UCLP, surgeons reported that, for NAM-prepared patients, 53.3% had minimum severity clefts, 58.9% were anticipated to be among their best surgical outcomes, and 82.9% were unlikely to need revision surgery. For patients with BCLP, these percentages were 29.8%, 38.6%, and 59.9%, respectively. Comparing NAM-prepared with non-NAM-prepared patients showed statistically significant differences (P < 0.001), favoring NAM-prepared patients. This study suggests that cleft surgeons assess NAM-prepared patients as more likely to have less severe clefts, to be among the best of their surgical outcomes, and to be less likely to need revision surgery when compared with patients not prepared with NAM.