Predictive Factors for Velopharyngeal Insufficiency Following Primary Cleft Palate Repair.

OBJECTIVE: Velopharyngeal insufficiency (VPI) remains a known complication of primary palatoplasty. We sought to identify factors associated with the incidence of VPI and create a predictive model for VPI development in our population. DESIGN: A single-institution, retrospective review. SETTING: Multidisciplinary clinic in a tertiary academic institution. PATIENTS: A total of 453 consecutive patients undergoing primary palatoplasty from 1999 to 2016 were reviewed. Inclusion required follow-up past age 5. Patients who were non-verbal, and thus unable to undergo speech evaluation, were excluded. MAIN OUTCOME MEASURES: Primary outcome was VPI, defined as revision palatoplasty or recommendation by speech-language pathology. RESULTS: Of 318 patients included, 179 (56%) were male. Median age at primary repair was 1.0 years (0.9-1.1) with a median age of 8.8 years at last follow-up. One hundred nineteen (37%) patients developed VPI at a median age of 5.0 years (3.8-6.5). Higher rates were seen with posterior fistula (65% vs 14%, P <.01) and straight-line repair (41% vs 9%, P <.01), with lower rates in patients with Veau I clefts (22% vs 39%, P <.05). Patients with VPI were older at last follow-up. Following multivariate regression, factors remaining significant were posterior fistula (odds ratio [OR]: 11.3, 95% CI: 6.1-22.0), primary Furlow repair (OR: 0.18, 95% CI: 0.03-0.68), genetic diagnoses (OR: 2.92, 95% CI: 1.1-7.9), and age at last follow-up (OR: 1.11, 95% CI: 1.01-1.2). CONCLUSIONS: Length of follow-up, posterior fistulae, and genetic diagnoses are associated with VPI formation. Furlow repair may protect against formation of VPI. Use of allograft, Veau class, birth type, birth weight, and race are not independently associated with VPI formation.

Assessing Burden of Care in the Patient With Cleft Lip and Palate: Factors Influencing Completion and Noncompletion of Nasoalveolar Molding.

OBJECTIVE: Evaluate the factors that influence caregiver-reported completion of nasoalveolar molding (NAM) therapy for patients with cleft lip and palate. DESIGN: An IRB-approved 30-question survey. SETTING: Outpatient clinic for patients with cleft lip. PATIENTS: Patients with unilateral or bilateral cleft lip treated with NAM therapy. INTERVENTIONS: Survey of previous experiences. MAIN OUTCOME MEASURE(S): Rate of noncompletion for patients initiating NAM therapy and identifiable causes. RESULTS: Of 94 patients who underwent NAM, 13 (13.8%) failed to complete NAM therapy. Reasons for incomplete treatment included: obstructive sleep apnea, device intolerance, tape issues, and lack of support. Patients who did not complete NAM therapy were less likely to have primary caregivers >30-year old (P = .045) and more likely to be the first child for the family (P = .021) and have a bilateral cleft (P = .03). Caregivers of NAM patients were less satisfied with the outcome (P < .001) when they did not complete therapy. CONCLUSION: This study shows that a high number of parents fail to complete this therapy for many reasons, personal and medical. More data are needed to elucidate true prevalence of NAM noncompletion and to establish evidence-based guidelines to reduce barriers to care for completing NAM treatment.

Survey of Parent Experiences in Prenatal Visits for Infants With Cleft Lip and Palate.

OBJECTIVE: The purpose of this study was to identify the factors that influence the parent's choice of cleft team/surgeon. DESIGN: A 10-question survey was used to elucidate factors that influenced parents in choosing their cleft surgeon. No identifiers of the origin of the study were used to improve parent objectivity. SETTING: The setting for this study was an online survey. PARTICIPANTS: Participants in this study were the parents of children who were born with cleft lip and/or palate. INTERVENTIONS: Parents were contacted anonymously via national, established social media websites that were independently run by the parents themselves. MAIN OUTCOME MEASURES: The main outcome measures were information regarding choice of cleft team/surgeon, source of patient referrals, and use of online media in decision making. RESULTS: A total of 112 responses were received. Of the parents, 77% sought prenatal evaluation with at least one cleft surgeon. Maternal-fetal medicine specialists were the most frequent (42%) referral source, followed by primary obstetricians (14%) and pediatricians (12%). The surgeon/cleft team's experience level and overall personality were ranked as the most important, whereas the least important was distance traveled. Of the parents, 95% used the Internet or social media for research prior to their prenatal visit; 96% of the parents found the prenatal visit helpful, and the most useful topics discussed were treatments (surgical, nonsurgical) and feeding techniques. CONCLUSION: This study identifies factors used to choose a cleft team/surgeon. Parents are more concerned with the experience level, reputation, and environment of the cleft team/surgeon than the distance traveled to get to the center.