Burden of Orofacial Clefting in India, 2016: A Global Burden of Disease Approach

BACKGROUND: In the recent past, there have been inconsistent reports of India witnessing a decreasing trend in the incidence of orofacial clefts (OFC). To date, little comprehensive evidence has been published. To identify the prevalence, associated burden in terms of epidemiological parameters and to estimate the “unmet” OFC treatment needs, the present study was undertaken. MATERIALS AND METHODS: Using the Global Burden of Diseases 2016 approach and its assumptions, an attempt was made to estimate the prevalence to quantify the burden of OFC in India as disability-adjusted life years (DALYs), years of life lost (YLL), and years lived with disability (YLD) as well as death due to OFC. The results from such an approach are presented. Using previous estimates of “unmet” OFC treatment needs, an attempt was made to estimate the current volume of “unmet” OFC treatment needs. RESULTS: In the present study, it was estimated that a total of 0.033% of all Indian population suffers from OFC. In 2016, the estimated prevalence rate/100,000 was 33.27 for males, 31.01 for females, and 32.18 combined for both genders. It was estimated that for all ages, the DALYs lost were 2.05 for 100,000 males, 2.66 for females and 2.34 for both sexes. The OFC birth prevalence model revealed that the birth prevalence (as a proportion) in 2016 in India showed an odds ratio of 0.48 (1.56–1.65) and fixed factor of nonrecording 0.83 (0.15–6.63), underreporting 0.97 (0.88–1), gender 1.09 (1.02–1.16), chromosomal diagnoses included 1.22 (1.22–1.22), and stillbirth 1.22 (1.22–1.22). The total unmet cleft treatment need was estimated at 79,430 or 18.76% of the total Indian cleft population with OFC. CONCLUSIONS: Within the constraints of the mathematical modeling and based on all available surveys, literature, and reported data, the overall birth prevalence and the prevalence of OFC in India are presented. Till reliable data emerges, the present estimates could serve as a robust estimate of the prevalence and burden of OFC in India. The present enterprise highlights the need for well-designed, high-quality Pan-India, community-based, observational studies to accurately estimate the burden of OFC in India.