A Model of the Unmet Need for Cleft Lip and Palate Surgery in Low- and Middle-Income Countries.

BACKGROUND: There is a significant unmet need for the cleft lip and/or palate (CL/P) care in low- and middle-income countries (LMICs) ; however, country-level estimates that can be used to inform local and international cleft care program strategies are lacking.

METHODS: Using data from Operation Smile surgical programs in twelve LMICs and country-level indicators from the World Health Organization and World Bank, we developed a model to estimate the proportion of individuals with CL/Ps older than respective surgery age targets for cleft lip and cleft palate surgery (1 and 2 years, respectively). After extrapolating this model to other LMICs with available indicator data, we combined these findings with estimates of CL/P prevalence among live births to estimate the total number of unrepaired CL/P cases in LMICs worldwide.

RESULTS: The models were constructed from a total of 887 cases of cleft palate and 576 cases of cleft lip across the twelve countries. From these, we estimated that there are 616,655 cases of unrepaired CL/P (95 % CI 564,893-678,503) in the 113 countries with available data for extrapolation. The rate of unrepaired CL/Ps ranged from 2.5 per 100,000 population in Romania to 28.5 per 100,000 in Cambodia, respectively (median rate 10.7 per 100,000 population).

CONCLUSIONS: Our model provides marked insight into the global surgical backlog due to cleft lip and palate. While the most populated LMICs have the largest number of unrepaired CL/Ps, low-income countries with relatively less healthcare infrastructure have exceptionally high rates (e.g., Cambodia, Afghanistan, and Nepal). These estimates can be used by local and international cleft care organizations to set program priorities, estimate resource requirements, and inform strategies to support cleft care.