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 participants: To 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 measures: Prevalent unmet need for CL/P repair.
Results: In 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 exceptionally high rates (eg, Bihar). These estimates are useful for informing international and national CL/P care strategies, allocating resources, and advocating for individuals and families affected by CL/P more broadly.
Level of evidence: NA.