Clinical profile and treatment status of subjects with cleft lip and palate anomaly in India: Preliminary report of a three-center study

Context: Treatment of patients with cleft lip and palate (CLP) anomaly requires a multidisciplinary approach from birth until adulthood. Many children with cleft anomaly are born in rural areas where resources for treatment and awareness on cleft care are limited. Consequently, many patients may receive limited or suboptimal care due to multitudes of reasons. Aims: The current study was aimed to record the baseline data on the spectrum of clinical profile of cleft patients, treatment protocols, quality of treatment and the residual treatment needs of patients with CLP anomaly visiting three major hospitals across Delhi and National Capital Region (NCR). The experience gained from the three-center study would be used to lay a framework to conduct a nationwide multicenter study in terms of logistics, feasibility and difficulties. Materials and Methods: The study titled "CLP anomaly in India: Clinical profile Risk factors and current status of treatment: A hospital based study" was started in 2010 as a Task Force project of Indian Council of Medical Research. The Pilot phase, which started in 2012, encompassed three cleft centers across Delhi and NCR, namely, All India Institute of Medical Sciences, Safdarjang Hospital and Medanta - The Medicity. Data for 126 non-syndromic CLP subjects was recorded on a specially designed performa. Each case was evaluated by a team of specialists comprising of a Plastic Surgeon, an Orthodontist, ENT Surgeon, Dental Surgeon, Speech therapist and an Audiologist. Clinical records included profile and intraoral photos, dental study models, audiometric and speech evaluation data. The current paper attempts to highlights a few of relevant observations of the pooled data from three centers. Results and Conclusions: The results indicate a lack of uniform protocol followed in providing care to cleft patients. A great variation was found in the quality of treatment received by many of the patients.