Clinical Profiles of children born with Orofacial Clefts: Results from Fourteen East African Countries.

BackgroundMore than 100,000 cleft lip and palate patients have benefited from reconstructive surgeries in Africa because of surgical support from non-governmental organizations such as Smile Train. The Smile Train Express is the largest cleft-centered patient registry with over a million records of clinical records, globally. In this study, we reviewed data from the east African patient registry to analyze and understand the clinical profiles of cleft lip and palate patients operated at Smile Train partner hospitals in East Africa. MethodA retrospective database review was conducted in all East African cleft lip and palate surgeries documented in the Smile Train database from November 2001 to November 2019. Results86,683 patient records from 14 East African countries were included in this study. The mean age was 9.1 years, the mean weight was 20.2kg and 19kg for males and females, respectively, and 61.8% of the surgeries were performed on male patients. Left cleft lip only (n=22,548, 28.4 %) and right cleft lip only (n=17862, 22.5%) were the most common types of clefts, with bilateral cleft lip only (n= 5712, 7.2%) being the least frequent. Complete right cleft lip with complete right alveolus was the most frequent cleft combination observed (n = 16,385) and Cleft lip to cleft lip and palate to cleft palate ratio (CL:CLP: CP) was 6.7:3.3:1. Unilateral primary lip-nose repairs were the most common surgeries (69%). General anesthesia was used for 74.6 % (52847) of the procedures. ConclusionMost children with cleft lip and/or palate were underweight, possibly due to malnutrition or related to socioeconomic status. There were more male patients compared to females, which could be related to gender disparities. Access to surgical care for children born with congenital defects needs to be improved, and inequities need to be addressed via more evidence-based collaborative intervention strategies. Highlights- More than 80,000 patient records from fourteen East African countries were analyzed in this study to describe orofacial clefts. - Orofacial clefts were found most commonly in males, accounting for over 62% of all cases. - To improve cleft care in East Africa, there is a greater need for evidence-based implementation of programs, research collaboration, and data-centric advocacy efforts.