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.