From Severity to Surgical Load: Long-Term Burden of Care in Cleft Lip Patients

Background: Cleft lip with or without cleft palate (CL ± P) is a common congenital anomaly requiring a multidisciplinary team approach from birth into adulthood. Many patients undergo multiple secondary procedures on the lip, nose, and alveolus, representing a substantial long-term "burden of care" for families and health systems. The relationship between preoperative cleft severity and the cumulative number of surgical interventions into late adolescence remains insufficiently characterized. Methods: A retrospective cohort study was conducted on 166 patients with cleft lip ± cleft palate treated at a single tertiary cleft center. All patients underwent primary cheiloplasty, with or without concomitant gingivoperiosteoplasty (GPP), and had follow-up extending to a mean age of 18 years. Preoperative nasolabial deformity was graded into four categories (mild, moderate, severe, and very severe) using standardized photographic assessment. The primary outcome was the total number of cleft-related surgical interventions on the lip, nose, and alveolus, including the primary operation and all subsequent corrective procedures. Associations between preoperative severity and surgery counts were analyzed using the Kruskal-Wallis test and Bonferroni-adjusted pairwise comparisons. Results: All 166 patients underwent a primary procedure, either cheiloplasty alone (n = 86; 51.8%) or cheiloplasty combined with GPP (n = 80; 48.2%). A second surgical intervention was performed in 111 patients (66.8%), yielding 138 procedures, most commonly GPP with bone grafting (n = 54), corrective cheiloplasty (n = 48), GPP without graft (n = 23), and rhinoplasty (n = 12). A third intervention was performed in 48 patients (28.9%; 70 procedures), predominantly rhinoplasty and additional cheiloplasties, and a fourth intervention in 13 patients (7.8%; 17 procedures), mostly staged rhinoplasty and lip revisions. Overall, 56 patients (33.7%) had only one (primary) operation, 50 (30.1%) had two, 27 (16.3%) had three, 18 (10.8%) had four, 13 (7.8%) had five, and one patient (0.6%) had six surgical interventions. The total number of operations differed significantly across severity grades (Kruskal-Wallis p < 0.001). Patients with mild and moderate severity had significantly fewer surgeries than those with severe or very severe deformities (all p ≤ 0.023), whereas differences between mild vs. moderate and severe vs. very severe were not significant. Conclusions: In this cohort of patients with cleft lip followed to a mean age of 18 years, two-thirds required at least one secondary procedure, and nearly one-fifth underwent four or more surgeries. Higher preoperative severity was strongly associated with greater surgical burden, particularly when comparing mild or moderate deformities to severe and very severe clefts. These findings underline the importance of preoperative severity assessment for family counseling, expectation management, and the design of treatment protocols aimed at minimizing the long-term burden of care while preserving functional and esthetic outcomes.