|Year : 2022 | Volume
| Issue : 1 | Page : 3-6
Cleft leadership center: Building equity in cleft care
Krishnamurthy Bonanthaya1, Jazna Jalil2
1 Smile Train Cleft Leadership Centre; Department of Oral and Maxillofacial Surgery, Bhagwan Mahaveer Jain Hospital, Bengaluru, Karnataka, India
2 Department of Oral and Maxillofacial Surgery, Bhagwan Mahaveer Jain Hospital, Bengaluru, Karnataka, India
|Date of Submission||02-Nov-2021|
|Date of Acceptance||10-Nov-2021|
|Date of Web Publication||01-Jan-2022|
Dr. Jazna Jalil
Department of Oral and Maxillofacial Surgery, Bhagwan Mahaveer Jain Hospital, No. 17, Millers Road, Vasanthnagar, Bengaluru - 560 052, Karnataka
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Bonanthaya K, Jalil J. Cleft leadership center: Building equity in cleft care. J Cleft Lip Palate Craniofac Anomal 2022;9:3-6
|How to cite this URL:|
Bonanthaya K, Jalil J. Cleft leadership center: Building equity in cleft care. J Cleft Lip Palate Craniofac Anomal [serial online] 2022 [cited 2022 Dec 8];9:3-6. Available from: https://www.jclpca.org/text.asp?2022/9/1/3/333652
The management of cleft lip and palate anomalies has been a nonpriority in the public healthcare agenda of most low- and middle-income countries including our own.,, Therefore, for many years now, the onus of mobilizing treatment for these conditions has primarily been taken up by nongovernmental organizations and charities. Based on the philosophy of empowerment of local resources, the New York headquartered, cleft-focused Smile Train has been a game-changer in this regard., This has led to a paradigm shift in the management of cleft deformities in the last two decades., So how has the game changed in the last two decades in the management of cleft lip and palate?
A lot has changed. Surgical facilities are now available closer to home, in far-flung nooks and corners of the world. Unlike before, a majority of children are receiving primary surgeries at an appropriate time. It is now rare to find an adult patient with an unoperated cleft of the lip and/or palate. The natural question at this point then is-is everything as it should be, have we achieved our goals of providing optimal care for all patients?
Unfortunately, timely primary surgery alone does not constitute the entirety of cleft rehabilitation. An optimum level of comprehensive management of these deformities necessarily involves the following [Figure 1]:
|Figure 1: Comprehensive Cleft Care involves a lot more than just timely primary surgery|
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- Nutritional assessment and growth monitoring at infancy
- Recognition of other congenital anomalies and necessary counseling/interventions as needed when these are present
- Outcome assessment of primary surgeries
- Speech and language development and interventions, including speech therapy
- The management of Velopharyngeal deficiencies (VPD) that may arise after the primary palate surgery
- Hearing assessment and necessary interventions, if any
- Management of complications/inappropriate treatment in the past; in the form of revision surgeries for the lip, palate, and nose
- Multidisciplinary management of consequences of early primary surgery including that of cleft maxillary hypoplasia
- Psychosocial support for both parents and growing children with these deformities even when primary treatment has been successfully carried out.
To this day, even with timely primary surgical management, many of these components of care are not within the reach of a majority of patients. In addition to lack of access to comprehensive care, a number of issues hinder the ability to provide a holistic care. These include:
- Lack of adequate human resources including surgeons trained in secondary surgeries, trained speech-language pathologists, orthodontists, psychologists, etc.
- Stigma associated with the condition
- Lack of awareness of the need and the availability of comprehensive care even among educated parents
- Lack of awareness amongst the primary health care providers about the timelines for cleft care and ignorance regarding the existing protocols.
Keeping the above issues in mind NGOs such as Smile Train have broadened their horizon and have exponentially increased the number of comprehensive cleft care (CCC) treatment partners around the world. Their new initiative, the funding and founding of Cleft Leadership Centers (CLC) in countries such as India, Chile. Brazil, Mexico, Ghana, Vietnam, and the Philippines-is a natural progression in optimizing and providing full-scope cleft care and rehabilitation. We are indeed proud and fortunate to have been considered for such an enterprise. The setting-up of the first Smile Train CLC in India has been a challenging, lengthy, yet invigorating process. In July 2021, at Bhagwan Mahaveer Jain Hospital, Bengaluru; we opened our doors, not only as a unit that trains cleft care professionals and provides comprehensive care to patients but as a “Smile Train CLC”– a first of a kind institution that aspires to provide top-notch, multi-faceted care and support to patients from the womb to adulthood; their financial or social conditions being no barrier in receiving such care. Services provided range from formal psychological prenatal counseling, familial psychosocial support, nutritional therapy and assistance, infant orthopedics, full gamut of primary and secondary cleft procedures, specialist pediatric dental care and interventions, orthodontic and esthetic rehabilitation, and comprehensive speech-related guidance, assessment and corrective therapy-all under-one-roof [Figure 2]. The aim of setting up such units is to primarily improve global health equity and promote access to safe, free, quality, and CCC across continents, and to serve as a regional hub for advanced care, training, and research.
|Figure 2: The team at the Smile Train Cleft Leadership Centre at Bhagwan Mahaveer Jain Hospital, Bangalore|
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Someone visiting the unit today may be surprised to hear of our humble beginnings. As a fledgling Smile Train partner, over 16 years ago, our department consisted of two surgeons. Both with prior experience working with clefts and Smile Train, at Mangalore and Dharwad respectively. The initial years were spent operating about 50 odd patients every month and doing virtually nothing else with regard to supportive or comprehensive care. Speech services consisted of a referral to a nearby center. In time though, we were able to formalize speech therapy services at this “nearby center” (which was the S R Chandrashekar Institute for Speech and Hearing!), thanks to the efforts of Dr. Roopa Nagarajan. Similarly for orthodontic care. Most, if not all our patients, needed orthodontic care at some point in their lives, and all we could do at that time, was refer them to wherever they could afford. A few years on, things improved when orthodontic grants allowed us to get visiting orthodontists once a week. And thus a rudimentary unit offering “comprehensive services” started to emerge.
First orthodontics, then speech therapy; both went on to become full time on-site services. This significantly improved the scope and quality of services that we were able to provide. Meanwhile, we were accredited by the Rajiv Gandhi University of Health Sciences (RGUHS) through the Bangalore Institute of Dental Sciences for conducting a 1-year fellowship program in Cleft Lip and Palate Surgery. Since 2010, more than 20 fellows have been trained and a number of them are now directing Smile Train treatment partnerships in various parts of the country including Muzaffarpur, Thanjavur, Indore, Vapi, Murshidabad, Moradabad, with new centers in Trivandrum, Calicut, and others in the offing soon.
Needless to say, none of this would be possible without the excellent support from our team of pediatric anesthesiologists, (which incidentally for a period included Prof Rebecca Jacob, who is the anesthesiologist with the Smile Train India Medical Advisory Council), as well as the department of pediatrics, and allied specialties such as pediatric cardiology and ear, nose and throat services.
Being recognized now as the first Smile Train CLC we have moved along in the direction of our mission of “interdisciplinary care from cradle to adulthood” quite a bit. The vision for this center was simple and a no brainer. “The Patient comes First.” In whatever activities we carry out clinical or otherwise all team members are advised to keep this very simple thing in mind and are asked to question themselves whether they are doing justice to this vision from time to time.
Some much needed office and waiting space has been added. We have in fact moved to a new planned location in the hospital. Much needed services that we have added include (again full time and on-site) nutritional, psychosocial, and dental which were hitherto done by amateurs and also sporadically. We are in the process of firming up workable protocols for all these services and will also monitor outcomes as we go along.
As part of Smile Train supported services, we also have been providing orthognathic and distraction procedures for more than a decade. With the addition of a third surgeon, who incidentally was our 2nd fellow, and has trained extensively in orthognathic and craniofacial surgery at Melbourne and Oxford respectively, we hope to further expand our scope of procedures. Furthermore, a new dimension has been added in the form of virtual surgical planning and execution to refine our results. A 2nd orthodontist is now part of our team helping us in this regard. State of the art technology is also being utilized, with a top of the range CBCT machine being installed. Plans to acquire definitive software for planning these surgeries and also to 3D print the splints, etc., are far-along in the pipeline and this furthers our vision of being completely self-sufficient in-house.
With all these facilities under one roof and with generous support for travel being provided to the patient; in a vast and populous country like ours, we are still unable to provide comprehensive care to all, i.e., universality of care is lacking and will always be a serious impediment to achieving our goals. In this regard, and fueled by the recent pandemic, we have started remote-care access and tele/web services. Serendipity may have been the mother of this initiative, but we hope to nurture this resource with focus and drive. The next logical step to this effort will be mobile health services. A mobile cleft health clinic that will regularly and frequently travel to all places that our patient population comes from seems to be the solution. This clinic will offer on-site speech assessment and therapies, dental checkups, surgical follow up as well as patient education. This service will kick off in early 2022. How effective such an endeavor will be in providing comprehensive care on a universal basis remains to be seen, but as a team ably advised by the Smile Train management, we are cautiously optimistic.
The aspect of training in the form of RGUHS surgical fellowships has already been mentioned. In addition, we are also accredited by the International Association of Oral and Maxillofacial Surgeons (The IAOMS) and train a fellow partially for 6 months (the entire duration being 1 year and the fellow being trained at another site for 6 months). Candidates from around the world selected by the IAOMS, travel to India for this purpose. This year, we are in the process of starting fellowships in Speech and Language Pathology as well as Orthodontics. This we believe will go a long way in reducing the short supply of trained manpower to set up comprehensive care teams in the future. We also encourage short-term visitors and observers at different levels of training from around the world. We will also as part of the initiatives of the CLC conduct regular CME's and workshops in the future.
As everyone knows reliable evidence is hard to come by in many aspects of care in cleft deformities. Quality research output has been poor to dismal and has been the Achilles' heel with many of us in the low- and middle-income countries. We have in the past, done our bit of clinical research in topics such as nasoalveolar molding, outcome assessments after cleft surgeries including that of bilateral lip and cleft palates,,,,, speech outcomes post cleft palate repair, outcome assessment for VPD surgeries and an attempt to derive an algorithm for treatment of VPD. All these has been published in the past. However, our evidence producing efforts in the form of research will get a boost with the CLC initiative as well the tremendous interest Smile Train is taking in promoting and facilitating research in this area. We are working on prospective studies in nutrition and psychosocial impact in addition to continuing the thread of previous topics.
We truly believe that charity should not be “what can be done” but really is about “what should be done.” We believe the model being followed is akin to that of an insurance cover with the worldwide community of large-hearted and enlightened people paying the premiums and hence there should be no scope for compromise in the way care is provided. The CLC initiative is a big step in this progress and we hope that this model will be replicated many times over not only by Smile Train but also people working around the world, trying to improve delivery of health care services to the people.
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[Figure 1], [Figure 2]