Building smiles, bridging gaps – A chronicle of progress in cleft care in India

Reply

Sir, The scenario of cleft care in India is rapidly changing and has taken rapid strides forward in the last decade or so. Thanks to the role of many NGOs who have come forward to fund free cleft care for the children suffering from this affliction in the developing world. However, controversies abound in this field as far as cleft protocols, timing, and effectiveness of various procedures are concerned. This is true not only in the developing world but in the western world too where societies and organizations are trying to find common ground to recommend or refute definite timelines or procedures to the surgeons performing cleft surgeries. It is in this context that the Indian Society of Cleft Lip Palate and Craniofacial Anomalies (ISCLPCA) sought to flesh out a “Consensus in Cleft Care” and recommend the same (timelines and procedures) to the surgeons performing cleft surgeries in India. The panels which discussed the various issues in cleft care sought to temper the “ideal” with a practical knowledge of the ground realities in India and thus, recommend a protocol which, while being targeted toward delivering world class results, were practical enough to be easily followed by various cleft centers across our country. The recommendations took hours of deliberations and personal communications and some work, thereafter, before they could see the light of the day and be accepted for print in the official organ of the ISCLPCA. It is unfortunate that some typographical errors inadvertently crept into the manuscript and also as commented upon by my colleague in the previous letter, escaped the careful eye of authors, reviewers, and the editorial board. The mistakes have hence been promptly rectified in the online version of the article. The authors sincerely regret this unfortunate slip-up and hope that this would not distract the attention of the reader from the important message that the article carries. Another issue that my colleague has touched upon is the recommendation for the timing of the cleft lip surgery. However, the authors wish to remind the readers that this is the considered recommendation of the panel regarding the preferred age of lip repair and does not stop any person from operating upon a patient if he or she turns up late for lip repair. Furthermore, it has been noted by various authors that cleft surgeons in various centers across India catering to cleft patients are already operating the lip at 3-6 months of age [1] and that the percentage of patients presenting before 1 year of age is nearly 15% [2] and almost 43.62% of children are operated before 2 years of age. [3] This is amazing statistics compared to a decade ago when the proportion of children to adults was much less than it is today. Most smile train centers today are seeing a perceptible fall in the mean age of children reporting for cleft surgery. Thanks to the aggressive outreach programs of these centers and the various information campaigns that these centers run (Khanna V. 2013. Personal communication). Keeping this very encouraging trend in mind, the panelists have no hesitation in recommending the preferred age of lip repair in India (permeated as it is by centers running various charity programs funding cleft care) as between 3 and 6 months of age. It was our sincere hope that the recommendations would bring uniformity in cleft care across India and stimulate better results and better research.

Cleft Care in India: What is Missing?

An international group of craniofacial surgeons was consulted to identify means of providing care of consistent quality to children with craniofacial anomalies in India and subsequently use this as a model for delivering craniofacial care to children in need throughout the developing world. Three senior craniofacial surgeons were selected from the Medical Advisory Board of the World Craniofacial Foundation to evaluate eligible centers in India. A subcommittee of 10 surgeons from the World Craniofacial Foundation Medical Advisory Board was formed to help develop summary recommendations based on this site visit. These centers were selected after contacting plastic surgeons and orthodontists involved in craniofacial and cleft care throughout India and asking the director of each center to complete a questionnaire documenting their current level of activity. Based on these responses, 3 potential craniofacial centers in India were identified. These sites were selected as potential locations for the development of craniofacial centers that could provide free care to indigent patients who otherwise could not receive treatment. The sites chosen consisted of a private hospital (southern India), a state-run government hospital (central India), and a federal government hospital (northern India). After the site visits, the directors of each of the 3 potential craniofacial centers in India were asked to complete a questionnaire helping to further identify their specific needs. The subcommittee of the World Craniofacial Foundation Medical Advisory Board then developed a set of summary recommendations to help guide the development of regional craniofacial centers in India. We feel that this process will facilitate access to care to indigent children with craniofacial anomalies who would not otherwise be eligible to receive appropriate care.

Cleft Care in India: What is Missing?

Cleft care in India: Current scenario and future directions

Introduction: In India, approximately 35,000 new cleft patients are born every year. Many patients receive suboptimum, improper, little, or no treatment. The cumulative burden of cleft care is up to 1 million cases. The spectrum of problems is varied, the caseload is enormous, and the logistics of treatment delivery are complicated. The Indian Council of Medical Research (ICMR) task force project was launched in 2012 to evaluate the status of cleft care in India and develop strategies to provide comprehensive cleft care through a dynamic multidisciplinary and multidimensional tool. ICMR task force project (2012–14) was conducted in Delhi, and the National Capital Region reported that at least 50% of studied cases had complex and multiple treatment needs. The needs identified were related to surgical, orthodontic, dental, ENT and Speech, rehabilitation of mutilated dentition, and various psychological disturbances among patients with Cleft anomalies. Aim: The aim of this study was to develop and test web-based application to create a system for national data of patients with cleft anomalies and digitize the patient records in a standardized preagreed format. Methods and Results: Corresponding to contemporary digital technologies and evolutionary improvements in data collection, web-based data collection instrument, including text, photographs, X-rays, and audio files, was considered the most appropriate. The experts from varied domains in consultation with ICMR and National Informatics Centre evolved a web-based data collection instrument which is named the “IndiCleft tool.” The tool has been tested and used over the years and is presently being upgraded to dynamic version for a national data and patient care registry. Conclusion: The present article describes the process of the development of a “dynamic” web-based data collection instrument. The IndiCleft tool is the national resource on cleft data in India.

Though India has an estimated population of one million untreated cleft patients, facilities for its treatment have been limited and are not evenly distributed across the country. Furthermore, a paucity of committed cleft surgeons in fewer hospitals to provide quality surgical treatment to these patients, poverty, illiteracy, superstitions and poor connectivity in some remote regions severely limit the chances of an average cleft lip patient born in India from receiving rational and effective comprehensive treatment for his/her malady. The Smile Train Project with its singular focus on cleft patients started its philanthropic activities in India in the year 2000. It made hospitals and included clefts surgeon equal partners in this programme and helped them treat as many cleft patients as they possibly could. The Project encouraged improvement of the training and infrastructure in various centres across the length and breadth of the region. The Project received an unprecedented success in terms of growth of number of centres, cleft surgeons and quantum of cleft patients reporting for treatment. The G S Memorial Hospital is one such partner hospital. It started innovative outreach programmes and took a holistic view of the needs of these patients and their families. With the support of the Smile Train, it has not only succeeded in providing treatment to more than 14,500 patients in 5 years, but has also devised innovative outreach programmes and seamlessly incorporated salient changes in the hospital system to suit the needs of the target population.

ABSTRACTThough India has an estimated population of one million untreated cleft patients, facilities for its treatment have been limited and are not evenly distributed across the country. Furthermore, a paucity of committed cleft surgeons in fewer hospitals to provide quality surgical treatment to these patients, poverty, illiteracy, superstitions and poor connectivity in some remote regions severely limit the chances of an average cleft lip patient born in India from receiving rational and effective comprehensive treatment for his/her malady. The Smile Train Project with its singular focus on cleft patients started its philanthropic activities in India in the year 2000. It made hospitals and included clefts surgeon equal partners in this programme and helped them treat as many cleft patients as they possibly could. The Project encouraged improvement of the training and infrastructure in various centres across the length and breadth of the region. The Project received an unprecedented success in terms of growth of number of centres, cleft surgeons and quantum of cleft patients reporting for treatment. The G S Memorial Hospital is one such partner hospital. It started innovative outreach programmes and took a holistic view of the needs of these patients and their families. With the support of the Smile Train, it has not only succeeded in providing treatment to more than 14,500 patients in 5 years, but has also devised innovative outreach programmes and seamlessly incorporated salient changes in the hospital system to suit the needs of the target population.