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

Abstract

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.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

The authors received no specific funding for this work.

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

Institutional Review Board (IRB) of Yekatit 12 Hospital Medical College in Addis Ababa under protocol number 60/20

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable.

Yes

Data Availability

Since it is patient data, Smile Train Inc. can provide the data upon request with appropriate ethical approval, but it is not publicly available.

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