Standard of Care for Patients With Cleft Lip and Palate in India—A Questionnaire-Based Study

Abstract

A national survey of cleft teams was undertaken to evaluate the current standard of care for patients with cleft lip and palate (CLP) in India as a part of Cleft Care India study. This was a cross-sectional questionnaire-based study. Cleft teams across India attending the 19th Annual Conference of the Indian Society of Cleft Lip and Palate were invited to complete the questionnaire. The questionnaire consisted of 18 questions that included demographics, institutional details, patient protocols, surgical technique, rehabilitation facilities, and accessibility. The data are descriptively reported. A total of 112 centers completed the survey. Nongovernment organizations funded 87% of the cleft centers and 8% did not receive any funding. Only 39% of the centers had centralized cleft services providing multidisciplinary care. Speech therapy was provided either onsite or through referral at 90% of the centers, whereas audiology was provided only at 4% of centers. Feeding advice was routinely provided in 52% of centers. Millard technique was the most preferred technique for unilateral cleft lip repair (66%). The 2-flap technique (37%) and pharyngeal flap (48%) were the most common surgeries for cleft palate and pharyngoplasty, respectively. Although 54% of centers reported their patients to be interested in comprehensive care, 43% reported that their patients only wanted surgical correction. There is wide diversity in access to cleft care and clinical practices across centers in India. Further work is needed to evaluate the quality of care by assessing outcomes of centers treating patients with CLP.