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 Table of Contents  
Year : 2018  |  Volume : 52  |  Issue : 6  |  Page : 97-100

Cleft care in India: What is missing?

1 MDS (Lucknow), M Orth RCS (Edinburgh), M Med (Dundee), FDS RCS (Edinburgh) Hon, FAMS, Division of Orthodontics and Dentofacial Deformities, Centre for Dental Education and Research, All India Institute of Medical Sciences, New Delhi, India
2 Fellow, Cleft and Craniofacial Orthodontics, Division of Orthodontics and Dentofacial Deformities, Centre for Dental Education and Research, All India Institute of Medical Sciences, New Delhi, India

Date of Web Publication7-Dec-2018

Correspondence Address:
Prof. Om P Kharbanda
Centre for Dental Education and Research, All India Institute of Medical Sciences, New Delhi - 110 029
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/jios.jios_69_18

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Dr. Om P. Kharabanda's particular field of interest in orthodontics is related to the comprehensive care of Cleft lip and palate. He has made a significant national and International contribution to the development of interdisciplinary cleft care and has lectured extensively on the subject across the globe. He is the past President of the Indian Society of the Cleft Lip and Palate and Co-Chairman of the Global task force 2017.

Keywords: Cleft lip, cleft Palate, cleft care protocols

How to cite this article:
Kharbanda OP, Monga N. Cleft care in India: What is missing?. J Indian Orthod Soc 2018;52, Suppl S2:97-100

How to cite this URL:
Kharbanda OP, Monga N. Cleft care in India: What is missing?. J Indian Orthod Soc [serial online] 2018 [cited 2019 Apr 25];52, Suppl S2:97-100. Available from: http://www.jios.in/text.asp?2018/52/6/97/247062

India is a vast country with a population of around 1.4 billion people and with approximately 35,000 cleft patients being born every year.[1] However, still, we lack in building an organized setup and providing optimal care to the cleft patients with the cumulative burden of care for cleft patients being huge. We think the time has come when we should start thinking of a national registry of cleft patients and formulating national guidelines for cleft care for our country.

The American Cleft Palate Association guidelines published in cleft palate and craniofacial journal in January this year has some salient features which are lacking in our system and should be imbibed. The first and foremost is the ominous requisite of interdisciplinary team care enabling quality of care, long-term follow-up, and management of patients. The second is increasing the patient awareness as well as facilitating financial and emotional support to parents and their families. The last and the most important is the quality management which is perhaps the most lacking in our system.[2]

In India, majority of cleft patients are unable to follow the protocol of cleft care due to lack of proper feeding advice, leading to feeding difficulties and poor nutrition resulting in delayed primary surgeries since most of them are unfit for surgery. Associated ailments and syndromes with the cleft are another constraints resulting in delayed treatment. Lack of awareness and logistics issues for the parents of a cleft child is also a major bounding factor for inability to pursue the protocol in India since most of the cleft patients and their families are uneducated and poor coming from remote areas of the country. In addition, treatment is being done by multidisciplinary teams in most hospitals which include individual consultations by various specialists at multiple time points, leading to failure on the part of patients to follow the protocol. We still lack in constitution of interdisciplinary teams for cleft care in which there are single-time point face-to-face consultations by various specialists for cleft care at most of the hospitals.[3],[4] Apart from this, we lack a complete protocol which encompasses all the aspects of interdisciplinary cleft care in Indian scenario. Various protocols have been followed throughout the country/centers, which covers only a part of the cleft management based on the infrastructures/workforce availability. Singh et al. proposed a guideline considering the unique circumstances and limitations of cleft care providers in India.[5] Although this guideline covered major part of the cleft management, still it did not include early speech assessment and orthodontic management. Keeping this in mind, the holistic approach for the management of cleft lip and palate was developed at All India Institute of Medical Sciences (AIIMS), New Delhi, which encompasses all the aspects of cleft management suitable for a country like India.

It took nearly 40 years for cleft care center at AIIMS, New Delhi, to establish a protocol for cleft care since AIIMS being a tertiary care center; we receive cleft patients with a wide range of age and stage with some reporting at initial stage as neonates while others reporting at various age groups and stages for first time (unoperated) or referred from other hospitals with having undergone multiple surgeries.[6] Hence, we have established a protocol for cleft care which can accommodate both type of patients, those reporting at initial visit at earlier stage and those reporting at later stages referred from other hospitals [Box 1].

Prenatal counseling is being done by the team leader or coordinating member of the interdisciplinary team which happens to be an orthodontist at AIIMS, New Delhi, for the parents to be of the cleft child when detected on ultrasound. It is of paramount importance that a patient information booklet be provided to the patient at the initial visit providing an outline of management of the cleft patient.[7]

For patients reporting within first few weeks after birth, lip taping and presurgical orthopedics and nasoalveolar molding are being done in cases where it is required.

Fistula closure should be done along with secondary alveolar bone grafting surgery wherever it is possible. By expanding the maxillary arch before secondary alveolar bone grafting, any resulting fistulas can be repaired at the time of bone grafting itself, thereby reducing the need for an additional surgery for fistula closure. With proper prospective coordination and team planning between the orthodontist and surgeons plans, procedures and appliances can be devised by allowing the orthodontist to retain the expansion achieved presurgically while at the same time allowing the surgeon proper accessibility to the operative field for bone grafting and fistula repair.

The dentoalveolar maxillary expansion is done by nitinol palatal expander, quadhelix, or trihelix which are considered to be an effective modality for expansion in cleft cases. Rapid maxillary expansion if undertaken should be done carefully in cleft patients due to the presence of scarring and tendency for tissue rupture and fistula formation.

Most of the cases of cleft lip and palate have a missing lateral incisor; the management of this space is done either by maintaining the space and placement of osseointegrated implants into the bone if bone is available and is of adequate density followed by crown buildup. Consolidation of space for lateral incisor is another viable option when the occlusion demands and in cases when the patient cannot afford implant and fixed prosthesis.

Majority of cases of cleft have midfacial deficiency due to the inhibited growth of maxilla in both sagittal and transverse directions. If the patient reports in early mixed dentition stage, then growth modulation can be done via facemask which can be tooth anchored or bone anchored. If the patient reports late with midface deficiency or has still remaining midface deficiency after growth modulation, then maxillary distraction is another viable option for correction of midface deficiency.[8]

A joint orthodontic surgical consultation should be done for adult cleft cases categorised as Goslon 4 and Goslon 5 for in detail planning of presurgical orthodontics, splint fabrication, type of orthognathic surgery, and postsurgical orthodontic management. In case of patients with a facial cleft, a joint consultation is required between orthodontist, oral surgeon, and plastic surgeon. Cone-beam computed tomography should be done for the cleft patient only where it is required and not as a routine procedure.

For enabling quality of care to cleft patients, it is of paramount importance that all team members of the interdisciplinary team not only possess appropriate and current credentials but also have requisite experience in evaluation and treatment of patients with craniofacial differences. Since the consequences of uncoordinated procedures carried out by isolated individual specialists with limited expertise and experience in cleft patients result in facial deformity, speech impairment, dental disaster, and psychosocial dysfunction increasing the burden of care for the patient as well as the society. The team holds the responsibility to provide integrated case management to assure quality and continuity of patient care and longitudinal follow-up. It should maintain centralized and comprehensive records of each patient, designate a coordinator of the team, chart longitudinal treatment plan for each patient, and evaluate the patients at regularly scheduled face-to-face meetings with periodic surveys of patient satisfaction. It is important to provide educational information about craniofacial differences and related disorders and communicate the treatment recommendations to each patient and family in the written form as well as in face-to-face discussion with sensitivity and flexibility for linguistic, cultural, and ethnic diversity since many patients come from remote areas, are uneducated, and are unaware of the complexity of the problem. We should also assist families in locating resources for financial assistance since many patients are poor. We should also conduct educational programs for hospital personnel and primary care providers by addressing feeding and other critical aspects of early health care for children with craniofacial differences. Further, we should weigh all treatment decisions against the expected outcomes.

Quality management should be done by longitudinal assessments of the outcomes of treatment, periodic team review of the clinical outcome data, and team adaptation of treatment procedures when clinical outcome assessments do not reach referenced criteria.

There is appalling requisite for national programs on cleft lip and palate and craniofacial anomalies with the support of Ministry of Health and Family Welfare. At present, an initiative has been taken by AIIMS, New Delhi, by conducting a nationwide multicenter study on clinical profile, risk factors, and treatment outcome of cleft lip and palate in India being funded by ICMR.[3] With the incorporation of fellowship training programs in cleft, we can build trained manpower skill for cleft care and thereby enhancing quality of cleft care. One such fellowship program has been started in AIIMS, New Delhi, in Cleft and Craniofacial Orthodontics since January 2017. Furthermore, incorporation of CollabDDS for national awareness programs and diagnosis and management of such birth defects, especially in remote areas, can be extremely beneficial in such a vast country.[9] We also envision the formation of cleft care centers in the country in the near future.

We hope that this brief review will help care providers dealing with cleft patients and facing similar problems an instant “road map” for instituting steps required to deal such a complex problem. With this note, we would like to end that together, we can and we should make a difference in the smile of cleft patients.

  References Top

Kharbanda OP. Abstract Book 11th Post Graduate Convention of the Indian Orthodontic Society. New Delhi: All India Institute of Medical Sciences; 2007.  Back to cited text no. 1
Parameters for the Evaluation and Treatment of Patients with Cleft Lip/Palate or Other Craniofacial Anomalies. American cleft palate-craniofacial association. Cleft Palate Craniofac J 2018;55:137-56.  Back to cited text no. 2
Kharbanda OP, Agrawal K, Khazanchi R, Sharma SC, Sagar S, Singhal M, et al. Clinical profile and treatment status of subjects with cleft lip and palate anomaly in India: Preliminary report of a three-center study. J Cleft Lip Palate Craniofac Anomal 2014;1:26-33.  Back to cited text no. 3
  [Full text]  
Long RE Jr., Kharbanda OP. Improving treatment outcomes for patients with cleft lip and palate – An historical perspective of the team concept. J Indian Orthodont Soc 1999;32:1-4.  Back to cited text no. 4
Singh AK, Upadhyaya DN, Kumar V, Mishra B, Prasad V. Evolving consensus in cleft care guidelines: Proceedings of the 13th Annual Conference of the Indian society of cleft lip palate and craniofacial anomalies. J Cleft Lip Palate Craniofac Anomal 2014;1:88-92.  Back to cited text no. 5
  [Full text]  
Bhateja A, Kharbanda OP, Duggal R, Deka RC, Parkash H. Evaluation of the surgical timings and treatment needs of operated UCLP patients in Delhi. Ind J Pedo Prev Dent 2001;19:10-7.  Back to cited text no. 6
Kharbanda OP. Patient Education Book: Cleft Lip and Palate. 1st ed. 2010. p. 1-30.  Back to cited text no. 7
Kharbanda OP, editor. Inter-disciplinary management of cleft lip and palate. In: Orthodontics: Diagnosis and Management of Malocclusion and Dentofacial Deformities. 2nd ed. New Delhi: Elsevier India; 2013. p. 685.  Back to cited text no. 8
CollabDDS. Available from: https://www.collabdds.gov.in/. [Last accesses on 2018 Apr 09, 10 am].  Back to cited text no. 9


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