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

Abstract

Background More than 100,000 cleft lip and palate patients have benefited from reconstructive surgeries in Africa as a result of surgical missions by non-governmental organisations 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 the east African patient registry data to evaluate and understand the clinical profiles of cleft lip and palate patients operated at Smile Train partner hospitals in East Africa. Method A retrospective database review was conducted from April to June 2022 in all East African cleft lip and palate surgeries registered in the Smile Train database from November 2001 to November 2019. Results 86,683 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%) and, alveolar bone grafts were the least common (0.8%). General anesthesia was used for 74.6 % (52847) of the procedures. Conclusion The study has highlighted the need for evidence-based collaborative initiatives to enhance cleft care in East Africa. The key areas of improvement include parental/caregiver education for early detection, and intervention, addressing gender disparities in care, early nutritional assessment and feeding counseling, undue attention to proper registration of anesthesia techniques, and inclusion of postoperative data in the Smile Train database.

Age at primary surgery among orofacial cleft individuals in Indonesia

“…This study is a cross-sectional study utilizing secondary data from the archive of Smile Train Express, a billing software for surgical treatments. Previous studies within the 5 years time-frame have explored the STX database to gain insight of OFC in multiple LMIC settings, 13,[23][24][25][26] or single LMIC settings such as Nigeria. 6 These studies have demonstrated the significant role of a humanitarian organization in enhancing access to care for those in need while also increasing research volume for treatment outcome and epidemiology fields.…”