Variation in the Desire for Cleft Revision Surgery among Children, Caregivers, and Surgeons

Background: Although revision surgery is part of the reconstructive process for children with cleft lip and/or cleft palate, the indications for revision vary, and the extent to which surgeons and families agree on appearance is unclear. The authors sought to understand the extent to which children with cleft lip and/or cleft palate, surgeons, caregivers, and control observers agree on satisfaction with appearance and the desire for revision. Methods: Children with cleft lip and/or cleft palate (n = 100) and their caregivers (n = 100) were surveyed regarding satisfaction with appearance using the Cleft Evaluation Profile. Surgeons (n = 10) and control observers (n = 10) rated photographs of these children using questions analogous to the Cleft Evaluation Profile. General linear model repeated measures analysis of variance were used to detect significant differences between raters, with an alpha of 0.05. Results: The children reported greater satisfaction with appearance across all domains compared with surgeons (nose, 7.77 versus 5.51, p < 0.001; lip, 7.94 versus 5.90, p < 0.001; maxilla, 8.16 versus 6.56, p < 0.001) and general observers (nose, 7.78 versus 6.00, p < 0.001; lip, 7.80 versus 6.12, p < 0.001; maxilla, 8.16 versus 7.40, p < 0.001). Children and caregivers expressed similar degrees of satisfaction with appearance of the lip (5.48 ± 1.69 versus 5.6 ± 1.49, p > 0.5) and maxilla (6.08 ± 1.1 versus 5.8 ± 1.2, p = 0.07). There was no significant relationship between children and surgeons in terms of the desire for revision surgery (p = 0.44). Conclusions: All groups expressed differing levels of satisfaction with cleft-specific aspects of appearance. Importantly, children were more satisfied than all other groups. Care must be taken to evaluate perceptions of all stakeholders before moving forward with cleft revision surgery.