The Americleft Project: Burden of Care from Secondary Surgery.

Background: The burden of care for children with cleft lip and palate extends beyond primary repair. Children may undergo multiple secondary surgeries to improve appearance or speech. The purpose of this study was to compare the use of secondary surgery between cleft centers.

Methods: This retrospective cohort study included 130 children with complete unilateral cleft lip and palate treated consecutively at 4 cleft centers in North America. Data were collected on all lip, palate, and nasal surgeries. Nasolabial appearance was rated by a panel of judges using the Asher-McDade scale. Risk of secondary surgery was compared between centers using the log-rank test, and hazard ratios estimated with a Cox proportional hazards model.

Results: Median follow-up was 18 years (interquartile range, 15-19). There were significant differences among centers in the risks of secondary lip surgery (P < 0.001) and secondary rhinoplasty (P < 0.001). The cumulative risk of secondary lip surgery by 10 years of age ranged from 5% to 60% among centers. The cumulative risk of secondary rhinoplasty by 20 years of age ranged from 47% to 79% among centers. No significant differences in nasolabial appearance were found between children who underwent secondary lip or nasal surgery and children who underwent only primary surgery (P > 0.10).

Conclusions: Although some cleft centers were significantly more likely to perform secondary surgery, the use of secondary surgery did not achieve significantly better nasolabial appearance than what was achieved by children who underwent only primary surgery.