Incidence of Symptomatic Submucous Cleft Palate in the Netherlands: A Retrospective Cohort Study Over a Period of 22 Years

Objective: To analyze the incidence of submucous cleft palate (SMCP) in a large national database and raise awareness among referring providers: pediatricians, speech pathologists, and dentists to minimize delay in diagnosis. Design: Retrospective cohort study. Setting: Tertiary setting. Patients: Patients were extracted from the “Dutch Association for Cleft and Craniofacial Anomalies” database. A total of 6916 patients were included from 1997 until 2018 and divided into 2 groups (ie, SMCP versus cleft palate [CP]). Patients born before 1997 and adopted patients were excluded. Interventions: Clefts were classified as either hard of soft palatal involvement based on anatomical landmarks at first consultation. Main Outcome Measures: Primary outcomes were the patient characteristics in both groups (ie, gender, birth weight, gestational age, and additional anomalies). Secondary outcome was the time of diagnosis among subgroups. Results: In total, 532 patients were diagnosed with SMCP (7.7%). Birth weight, gestational age, and additional anomalies did not differ between subgroups, but there were more males in the SMCP group (P <.001). The median age of diagnosis of the SMCP group was significantly higher than of the CP group (987 vs 27 days; P <.001). Over the course of 22 years, the time of diagnosis for SMCP did not decrease. Conclusion: Submucous cleft palate represents <10% of the Dutch cleft population and 19.4% of all CP. Time of diagnosis for SMCP is significantly longer when compared with time of diagnosis of CP, and this has not changed over the study period of 22 years.