Global perspectives in orofacial cleft management and research

Abstract

Orofacial clefts (OFCs) refer to clefts of the lip and palate, a heterogeneous group of relatively common congenital conditions that can cause mortality and significant disability if untreated, and residual morbidity even when treated with multidisciplinary care. Contemporary challenges in the field include: lack of awareness of OFCs in remote, rural and impoverished populations; uncertainties due to lack of surveillance and data gathering infrastructure; inequitable access to care in some parts of the world; and lack of political will combined with lack of capacity to prioritise research.OFCs present clinically as either syndromic or non-syndromic, with the latter either being isolated or in conjunction with other malformations; however, many registries still do not differentiate between these fundamentally different entities and lump a spectrum of cleft types and sub-phenotypes together. This has implications for treatment, research and ultimately, quality improvement.This paper deals with the challenges in contemporary management in terms of care and the prospects and possibilities for primary prevention of non-syndromic clefts. In terms of management and optimal care, there are also challenges in the provision of multi-disciplinary treatment and management of the consequences of being born with OFCs, such as dental caries, malocclusion and psychosocial adjustment.