Estimate of Unmet Need for Cleft Lip and/or Palate Surgery in India

Abstract

raniofacial cleft anomalies are common, affecting 1 in 600 live births annually. 1 However, cleft lip and/or palate (CL/P) disproportionately affects newborns in low-and middle-income countries (LMICs) owing to substandard nutrition and a lack of prenatal care. 2,3 Infants born with CL/P in LMICs face significant barriers to treatment, which often lead to prolonged disfigurement, social stigma, speech impairment, and feeding difficulty that may result in malnutrition and even death. [4][5][6] Although CL/P is a complex condition that benefits from comprehensive care, the provision of safe, timely, and effective surgery helps to achieve a successful outcome. 5,6 Like other LMICs, India lacks reliable documentation of birth anomalies 7 ; thus, accurate estimates of the burden of CL/P in India are few. 4 A multicenter hospital-based study of 94 610 births 8 reported that the incidence of CL/P was 9.3 per 10 000 births and the incidence of cleft palate was 1.7 per 10 000 births. Khajanchi et al 4 performed a populationbased assessment of the unmet need for CL/P treatment in a single district. They reported a CL/P incidence of 7.3 per 10 000 live births. With a crude birth rate of 200 per 10 000 population and 1.25 billion people, as many as 3 infants with CL/P are born in India every hour. The proportion of these cases that receive safe, timely, and effective surgical care IMPORTANCE The unmet need for cleft lip and/or palate (CL/P) care in India is significant. However, estimates required for CL/P care program planning are lacking.OBJECTIVE To estimate the unmet need for CL/P surgery in India at the state level. DESIGN, SETTING, AND PARTICIPANTSTo determine the proportion of individuals with CL/P who presented for care in India, data were used from patients who received care at Operation Smile programs in 12 low-and middle-income countries from June 1, 2013, to May 31, 2014. The resulting model describes the prevalent unmet need for cleft surgery in India by state and includes patients older than the surgery target ages of 1 and 2 years for cleft lip and cleft palate repair, respectively. Next, the total number of unrepaired CL/P cases in each state was estimated using state-level economic and health system indicators. MAIN OUTCOMES AND MEASURESPrevalent unmet need for CL/P repair. RESULTSIn the 28 states with available data, an estimated 72 637 cases of unrepaired CL/P (uncertainty interval, 58 644-97 870 cases) were detected. The percentage of individuals with unrepaired CL/P who were older than the respective target ages ranged from 37.0% (95% CI, 30.6%-43.8%) in Goa to 65.8% (95% CI, 60.3%-70.9%) in Bihar (median, 57.9%; interquartile range, 52.6%-63.4%). The rate of unrepaired CL/Ps ranged from less than 3.5 per 100 000 population in Kerala and Goa to 10.9 per 100 000 population in Bihar (median rate, 5.9 [interquartile range, 4.6-7.3] per 100 000 population).CONCLUSIONS AND RELEVANCE An estimated 72 000 cases of unrepaired CL/P are found in India. Poor states with less health care infrastructure have exception...

Burden of orofacial clefting in India, 2016: A global burden of disease approach

“…In reality, it is identified that 18.76% of Indian OFC are not treated. [ 20 ] From the result of this study and lancet commission report our estimate of about 79,430 people with OFC have or had no access to surgical care. This has to be addressed on a priority basis and appropriate care instituted.…”

“…The birth prevalence of OFC for India was collected. [ 18 ] From previously published literature,[ 20 ] the unmet treatment need for mid-year 2014 derived projections and added another 5% as per the methodology to compute the 2016 projection including untreated palate and lip OFC. This estimate was used to make the unmet surgical need of the population.…”

“…An estimated 72,637 cases of OFC were estimated to be living in India with unmet treatment in mid-2014. [ 20 ] Using the GBD 2016 approach,[ 21 ] the prevalence of >1 year in the remaining years was estimated. The prevalence of OFC in 2014 (below-1 year) was 15,700 in 2014, 15,141 in 2015, and 14,709 in 2016, totaling about 45,550.…”

Creation of the American Academy of Facial Plastic and Reconstructive Surgery FACE TO FACE Database

“…In addition, the database will be used to identify, monitor, and analyze clinical outcomes and epidemiologic trends in health care utilization, access, and quality; develop evidence-based practice guidelines; and support clinical research and education. [1][2][3][4][5][6] Information acquired from the database will serve as a foundation for submitting grants to outside organizations, allowing the AAFPRS to continue sustaining FACE TO FACE initiatives.…”

Understanding and prevention of orofacial clefting: A myth or possibility?

“…It is estimated that at least about 72,000 people still do not have access to surgery. [ 2 ] In spite of the best care, complications do arise after surgeries. [ 3 ]…”