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GC4 Programs
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Patient Recruitment: Patients are the foundation of any medical charity. A central step in expansion of care is to make patients aware that opportunities for treatment exist and to facilitate their access. This seemingly straight-forward notion becomes exponentially more complex with a population that is concentrated in areas far away from billboards, televisions, newspapers, or other forms of media. 87% of the population of Assam resides in rural and isolated regions, making it exceedingly challenging to identify patients with cleft lip and cleft palate and to educate them about the treatment process. The diversity of the region was also a factor, as differences in religion, ethnicity, language, and socioeconomic level can contribute to mistrust by patients. The scale of the GCCCC would be able to accommodate thousands of patients per year, and so an initial focus was to build a robust Patient Recruitment Program. The combined efforts of this group was responsible for bringing people who need surgical care to a resource capable of delivering treatment. This was lead by a manager of partnerships in charge of developing relationships and systems for increasing patient awareness and access, and a patient recruitment coordinator charged with implementation of strategy and recruitment efforts. A team of patient counselors was developed to fortify the workforce with local non-healthcare provider volunteers. These college-age youths were trained by the surgical team to identify clefts and provide patient education on treatment of cleft lip and cleft palate, and services available at GCCCC. The process involved initial partnership development with healthcare workers throughout the state. The defined organizational of the state into districts and blocks was utilized to identify and engage local governmental healthcare leaders to educate the on care available for cleft patients in their individual areas. Understanding and utilizing existing infrastructure was essential to increasing penetration into rural regions that represent the vast majority of the population.
Patient identification efforts were carried out in close partnership with governmental bodies with common goals of improving the welfare of disadvantaged citizens and included the National Rural Health Mission, Assam Ministry of Health and Family Welfare, the Assam Department of Social Welfare, and the Sarba Siksha Abhijan (SSA) universal educational program. These partnerships allowed access to existing networks aimed at providing care to patients at the village levels. Community health activists throughout the state were educated in large workshops on cleft lip and cleft palate, and dispersed into their villages to create awareness and mobilize their communities to identify patients. Local prescreening camps were then organized. Health activists brought patients from their communities to these camps, where the patient counselors would assist patients with the process of obtaining treatment. At off-site screening camps, PC’s work closely with our local partners to identify, educate, and organize surgery for patients. They also spend time informing patients and families about their conditions. A program in the local language was provided to inform the patients about cleft lip and cleft palate, how they are treated, and the comprehensive center in Guwahati. Once patients were identified, they were given a date to travel to Guwahati for evaluation by medical staff, and plan for transportation to and from Guwahati in groups. The goal was to make this process as direct and simple as possible, so that patients could break through the barriers to obtaining care. Patient Counselors provide identified patients with a definitive date to come to Guwahati surgery, and organize transportation. This has greatly decreased barriers of care for patients, and facilitated the care process for patients.
Patient Care Services The patient care team was created to coordinate hospitality and clinical services to continuously large numbers of needy patients coming from distant regions to Guwahati for surgical care. This team assumed responsibility for patients and their families upon arrival to Guwahati, coordinating food, hygiene, and shelter in an adjacent GCCCC hostel. The patient care members coordinated extensive logistics needed for all patients to receive multidisciplinary clinical evaluations, and to coordinate investigations and care plans between professionals. Once scheduled for surgery, patients were admitted to the hospital and provided with amenities for a comfortable stay. The patient care members served as liaisons between all providers and patients, in order to make the treatment process as straight forward and enjoyable as possible. Typical families faced intense challenges to travel for surgery, including leaving necessary daily wages and additional children, and so every effort was made to screen patients and provide surgical operations within a single trip to Guwahati. After surgery, the patient care team assisted patients with transportation back to their homes, and provided instructions for post operative follow up appointments. Summary: The Patient Care Team ensures that every patient and family member is looked after, to make the treatment process easy and enjoyable. The Patient Care Team (CT) consists of a CT Director and three Care Coordinators, all of whom are fluent in English and Assamese. The CT is responsible for patients upon arrival to Mohendra Mohan Choudhury Hospital.
Services include, but are not limited to: o Lodging and food for patient and family at Police Hospital, Panbaazar, during the screening and pre-admission process. o Hospital ward lodging for patient and family o Food for patient and family o Managing GC4 patient clinics for screening, pre-operative preparation, and postoperative follow-up o Coordinating diagnostic investigations and their reports to the medical team. o Patient transportation home to districts from GC4 after clinical encounters. o Calls and coordination of follow up visits after surgery. o Maintenance of database of patients eligible for surgery and said timings as determined by the medical team. A small percentage of patients come to the Center on their own as walk-in’s. This portion of the patient population includes patients who have heard of the Centre through word-ofmouth, or who have attended Operation Smile Missions prior to Centre establishment and continued to pursue care per their own personal needs. The Centre protocol for these patients is to schedule them for surgery at their earliest possible convenience.
Patient Education Program  In response to the unique vulnerability of our patients and their families, we have developed specialized Simple and direct communication with patients in their native language is essential for quality surgical care. Significant challenges to effective patient-provider interactions in Assam arose due to differences in language, culture, and socioeconomic levels. Hundreds of follow up examinations after a large surgical mission revealed widespread patient and parent misunderstanding regarding postoperative care. This prompted the development and implementation of standardized pre- and post- operative protocols and education programs, including personal counseling and demonstration, instructional videos, and pictograph instruction sheets in Assamese, the predominant local language. Patient understanding improved remarkably, and patient outcomes have validated the utility of this dynamic program.
Nutrition A high prevalence of malnutrition was noted during initial efforts in Assam. Poverty, poor maternal diet, and inadequate infant and young child feeding contribute to malnutrition in Assam, and cleft children are especially vulnerable. Impaired ability to effectively breastfeed frequently causes life threatening malnutrition in this patient population, as maternal milk as s the principal source of nourishment.1, 1 A nutritional assessment found that among children with cleft lip and cleft palate in Assam, 64% were malnourished by at least one standard anthropometric indicator, and 78% were anemic. Prior studies have additionally suggested that malnourished children are at higher risk for surgical complications.1, 1 A nutritional team was created, and tasked with developing systems and protocols to identify malnourished patients, provide education and treatment, and monitor progress. Physicians, nurses, nutritionists, and social workers staffed collaborated to rescue these children, with the goal of eliminating the malnutrition and preparing them for successful operations. The nutrition protocol provided for identification of malnourished patients during screening and confirmed by medical assessment by a pediatrician. Severely malnourished patients, as defined by World Health Organization standards, were admitted to an inpatient malnutrition unit for immediate treatment.1 Patients with mild or moderate nutrition were referred to a patient manager to register them in the nutrition program and complete specialized nutrition forms to record demographic information, anthropometric measurements, medical and growth history, and feeding information. The plan developed by the Pediatrician was then implemented, including attaining necessary lab work, medical treatment, and food and vitamin supplementation. Nurse educators specifically trained in nutrition then conducted intensive education clinics with the patients and parents. Culturally-appropriate counseling and education stressed proper feeding methods and nutrition in order to maximize parental understanding of the problem and treatments necessary. Once parents demonstrated understanding and ability to provide adequate interventions at home, the patients were released and organized in a nutrition database. Regular clinic visits tracked progress and additional interventions were provided as necessary. Once patients were adequately nourished and candidates for surgery, they were referred to the surgeons for evaluation and scheduling. Summary: The GC4 Nutrition Program identifies malnourished cleft patients, monitors and provides treatment and education in order to correct the malnutrition, elevate these patients to become surgical candidates, and reduce the risk of surgical complications due to protein-calorie deficiencies. This is done through patient identification by physicians, counseling on proper foods and feeding to caregivers, and follow up of patients for progress. Several success stories have come from this program, and approximately previously malnourished patients have received free surgical procedures once their nutritional status recovered.
Patient Follow Up There are significant challenges associated with continuity of surgical care in the developing world, particularly in the postoperative settings. Patients are mostly day laborers, and cannot afford to take time off of work or pay the cost of transportation, which is often cumbersome and time-consuming. Also, postoperative patients with good outcomes often do not understand the need for follow-up visits, as they perceive no complication and therefore no need for physician intervention. Reliable communication is also very challenging, and often difficult to maintain due to the predominantly transient nature of local telephone numbers. An extensive amount of organization is needed to effectively follow the three hundred patients per month that the GCCCC would eventually treat. The goal of the follow up programs was to implement protocols that lead to successful postoperative evaluations for a many patients as possible. Ultimately, this would improve care through clinical examinations and advice to patients, scheduling future surgeries needed, and evaluate the quality of repairs being performed at the GCCCC. Specific short term and long term follow-up dates were allocated to given surgery weeks, and patients scheduled for their appointments prior to discharge. The importance of follow up was stressed as part of the patient education program, and since patients usually arrived in groups as a result of recruitment processes, the same strategy was used for their return to the center. To decrease the economic barrier, transportation costs were supplemented by the center at the post-operative visit. Complimentary food and shelter were also provided to patients needing an overnight stay due to distance or timing of transportation. All patients that returned to follow up were recorded and scheduled for future examinations and procedures. Patients that were “no-shows� were called every week for several weeks to provide a future appointment. Follow up evaluations are vital to the overall care of patients, and for evaluation of our care. Optimal follow up times at Guwahati have been implemented as 1 week, 2 months, 6 months, and one year after surgery. Social, economic, and geographical challenges create intense challenges to patient travel to and from Guwahati, leading to traditionally low follow up rates. Massive revamping and expansion of our follow up programs was initiated in August of 2011, and includes protocoling of follow up appointment scheduling, Improved discharge teaching, clear patient discharge records, repeated telephone reminders, and provision of transport costs to parnets. This has led to a 360% increase in patient follow up. We now have more than 75% of patients following up at the center, resulting in improved analysis of our care as well as expanded provision of speech therapy, dental, ENT and future surgical services.
Our district outreach follow-up and speech therapy (DOFAST) program was launched in August of 2011 in order to take plastic surgeons, speech therapists, and patient counselors back into the districts to improve access to services. A recent camp to the remote district of Karamgang resulted in a follow-up rate of 100% for 110 patients who face a 20 hour journey to come to the center. The DOFAST program has also resulted in 40% (+) conversion rate of follow up evaluations to future surgeries.  GC4 Division of Research and Outcomes  The mission of our group is to rigorously document, analyze, and critique all aspects of our clinical care. Our goal is to improve the quality of our own care, and ultimately to contribute to the knowledge, standards, and practices of cleft care in the developing world. Academic analysis of surgical care in the developing world has been traditionally difficult and lacking, with significant challenges to patient return, proper documentation, and earnest analysis. The volume and motivation of patients in this region provides tremendous opportunity for translational research that can positively affect care in the very near future. The group is centered in the Plastic Surgery Division at our facility in Guwahati, and involves locally based members as well as participants and partners from around the world. The Division seeks to welcome and involve all interested clinicians and researchers who have like-minded interests and goals. We hold regularly scheduled meetings, and invite participation via global video conferencing for enhanced communication. As we continue to fulfill our commitment to the children of Assam, and seek to develop a new paradigm of global cleft care in the developing world, we must thoroughly assess our patients and performance on an ongoing basis. Sincere and rigorous evaluation will undoubtedly provide invaluable insight, and most importantly, direction towards improved care. We sincerely hope that the Research and Outcomes Division in Guwahati will provide the mechanism for collaborations, partnerships, and friendships that will make significant contributions to cleft care in the developing world. Institutional Ethics Committees (IECs) are groups whose foremost duty is to protect the rights and welfare of human research participants and the community whence they come. The O.S.I. IEC is designated by O.S.I. and authorized to review, approve, require modification of and disapprove human subject research conducted on behalf of or in coordination with O.S.I. The O.S.I. IEC will have oversight for the conduct of all human research on behalf of or in coordination with O.S.I. on any of its missions at any of its centers or at any affiliated institutions.
The O.S.I. IEC protects the rights of research participants by ensuring unbiased selection of participants, ensuring participants’ full and non-coerced informed consent, assessing risks to participants, and protecting participants’ privacy. The goals of research, however important, will never be permitted to override the health and well being of the research participants or the community. The O.S.I. IEC objectively assesses the research plans and protocols to evaluate potential risks to subjects, with the goal of protecting them from unreasonable peril. Likewise, it is the responsibility of the committee members to consider the population under study and its vulnerability. Concomitantly, the O.S.I. IEC considers potential benefits that may accrue to the research participant and/or to humanity. Campbell A, Restrepo C, Sherman R, Magee W. Comprehensive Cleft Care in the Developing World: A Reproducible Model for Excellence and Sustainability. 12th International Congress on Cleft Lip/Palate and Related Craniofacial Anomalies. Orlando, Florida. May 2013. Varma, A. Effectively Linking Communities and Facilities in Assam, India. USAID Health Care Improvement Portal. Available at: Campbell A, Gillenwater J, Restrepo C, Magee W. Patient Education and Decreased Complications After Cleft Lip Repair. 12th International Congress on Cleft Lip/Palate and Related Craniofacial Anomalies. Orlando, Florida. May 2013. Campbell A, Restrepo C, Gillenwater J, Jerome M, Allan A, Laub D. Anthropometric Measurements and Nutritional Assessment as a Predictor of Surgical Risk in Pediatric Cleft Lip Patients in Assam, India. 12th International Congress on Cleft Lip/Palate and Related Craniofacial Anomalies. Orlando, Florida. May 2013. Kalssen A, Stotland M, Skarsgard E, Pusic A. Clinical research in pediatric plastic surgery and systematic review of quality-of-life questionnaires. Clin Plast Surg. 2008 Campbell, A. Restrepo Lopez, C. Letter to the Editor, Reply. Medical Missions, Surgical Education, and Capacity Building. Journal of the American College of Surgeons. 2011 Oct. 213(4):573-74. Campbell, A. Sullivan, M. Sherman, R. Magee, W. The Medical Mission and Modern Cultural Competency Training. Journal of the American College of Surgeons. 2011 Jan. 212(1):124-9. Campbell A, Sherman R, Magee WP. The role of humanitarian missions in modern surgical training. Plastic Reconstruct Surg. 2010;126:295–302.