15 Humanitarian Missions
Introduction
International volunteer missions are fundamental to the global management of individuals with orofacial clefts. Current consensus is that appropriate treatment of patients with cleft lip and/or palate (CL/P) involves corrective surgery in the setting of multidisciplinary care for optimal aesthetic and functional outcomes. In developed nations, treatment teams include surgeons, speech therapists, audiologists, dentists, orthodontists, psychologists, geneticists, and specialized nurses.1 However, there is great disparity in the quality of care for this condition throughout the world where access to treatment depends on geography and socioeconomic status.2 In many developing countries, it is not possible to provide the full array of multidisciplinary services. Children born with facial clefts often go untreated, suffering lifelong physical, psychosocial, and economic morbidity.3 The negative effects are also felt by communities. Premature death, decreased access to health care, isolation, and exclusion from education and employment limit these individuals from making meaningful societal contributions.
The global burden of CL/P conditions results in a significant human and economic toll. Traditionally, surgical conditions have been a low priority in the global public health arena. Recently, appreciation has developed for the role of surgical conditions in populations’ disease burden, especially in developing countries where a backlog of untreated surgical diseases is common.4,5 Surgical conditions account for 11% of the global burden of disease as measured by disability-adjusted life years. Of these, 9% are attributed to congenital anomalies; therefore, congenital anomalies account for 1% of the total global burden of disease.5 CL/P is among the most common congenital anomalies, with an overall incidence estimated at 1 in 700 live births.6 Accordingly, the economic burden of CL/P on developing economies is substantial. Alkire et al. demonstrated that the financial benefit of repairing all incident cases of CL/P in 1 year in sub-Saharan Africa would range from $252 million to $441 million.7 The same benefit, measured by value of a statistical life (the maximum amount someone would be willing to pay to mitigate the risk of dying), was reported to be $5.4 to $9.7 billion. Clearly, efforts to improve the global treatment of these conditions are cost-effective.
Is the incidence of orofacial clefting higher in developing nations? Low socioeconomic status has been implicated in the incidence of CL/P; however, consistent evidence is lacking.8 Poor nutrition and viral infection, ailments common in developing nations, have been linked to orofacial clefts.8 Specifically, maternal nutritional deficiencies in folate, vitamin B6, zinc, riboflavin, and vitamin A are associated with CL/P.8–12 Vitamin B6 deficiency was associated with clefts in the Philippines and is also seen in other Asian populations with large intakes of rice and increased rates of clefts.10 Although these associations exist, the true frequency of cleft lip, cleft lip and cleft palate, and cleft palate is unknown in much of the world due to limited or absent birth surveillance systems in poor countries. However, the prevalence of untreated cases is demonstrably higher.
In an attempt to provide a way forward, this chapter explains the role of the international humanitarian cleft mission, describes the components of a successful mission, and subsequently addresses the multiple problems of negative outcome prevention and management, follow-up care and long-term management, reliable outcome assessment, care standardization, and technology implementation. This chapter focuses on the vertical (mission) model of delivery of care. However, the value of establishing permanence and continuity of care has long been recognized. Many groups have begun to shift toward a comprehensive care model; one that establishes in-country comprehensive care centers as permanent resources for year-round care. It is the senior author′s opinion that all efforts should in fact be made to provide continuity and the multidisciplinary care that teams in the developed world provide. Today, our ability to do so is greatly facilitated by the advancing access across the developing world to the internet and cellular technology. This should lead to such comprehensive care centers (even if some of the provided care is “virtual”) to become the norm.
The Role of International Humanitarian Cleft Missions
Currently, there are multiple groups undertaking the care of patients with CL/P through international humanitarian treatment efforts. These groups differ in philosophy, composition, and infrastructure but are united in the common goal of improving the quality of life for those suffering from this condition. Three main objectives prevail: to provide early surgical treatment for children with CL/P, to improve the access to care by patients, and to raise the universal standard of care for patients with CL/P to reflect that of developed nations. In addition, some academic and nongovernment organization (NGO) partnerships seek to support surgical capacity building, surgical training, and continuing medical education for host country practitioners.
Delayed treatment of clefts has been called the most important unresolved issue concerning CL/P in developing countries.13 The surgical literature consistently recommends that treatment for individuals with CL/P should be administered within the first 2 years of life.14 Late repair of the clefts not only results in poor speech outcomes but also potential long-term psychological effects from impaired family and social relationships.15 Humanitarian cleft missions have highlighted the significant delay in the presentation for treatment in developing nations, citing that adults with clefts often present for care, a phenomenon that is not commonly encountered in developed nations. Large distances to treatment centers, unavailability of services, lack of awareness of treatment availability, superstition, and the burdens of time and cost are contributing factors.16 In many nations, incentives are lacking for providers to offer treatment to individuals suffering from clefts. In Nepal, the reported rates of late presentation for treatment range from 79 to 98%.16,17 Unfortunately, repairs performed at late ages (> 18 months) often cannot reverse acquired, often compensatory speech inadequacies in these patients. Age at first presentation is an indicator of need for extensive orthodontic and speech therapy.18 International cleft missions are playing an important role in addressing this problem and creating measurable change. Members of the Japanese Cleft Palate Foundation demonstrated that over a period of 8 years of annual volunteer surgical trips to the Ben Tre province of Vietnam, the percentage of adult patients undergoing first palate repair dropped from 49.2 to 19%.18 The median age of lip repair decreased from 14 to 1.3 years, and age of palate repair decreased from 13.5 to 5.0 years.
Volunteer surgical missions have mobilized specialized care to isolated areas of the world, thereby improving access. The dilemma in the developing world is two pronged: there is either a lack of treatment capability or a lack of access to available care (or both). Capable centers are often hours away from communities in need, and patients often cannot afford to miss work or pay for transportation. The isolation creates a significant obstacle in the adequate and timely care of patients. The importance of regular outreach programs in provincial areas was emphasized in a recent evaluation of cleft management in Cambodia. Butler et al. demonstrated that even with the resource of a year-round treatment center, the Children′s Surgical Centre, the average age of patients at first presentation was 48 months.19 The financial burden of travel was cited as a significant factor in delay. Noting this, some groups have arranged resources, such as public transportation vouchers, to help address this limitation.
Humanitarian CL/P teams developed from the awareness of the significant limitations for patients and the sheer global need. The feasibility of providing advanced surgical care on location and in suboptimal settings is well established. Within the confines of available time and resources, many teams have traditionally sought to provide care to as many patients as possible. This philosophy came under scrutiny with questioning of the balance between quantity and quality. Awareness of the limitations of lack of follow-up and ability to manage complications led to a change in ideology and the focus of providing the best care for each individual. This generated a new goal of raising the universal quality of care to that of developed nations. With this new focus came a transition toward expanding multidisciplinary care, developing longitudinal care, and capacitating impoverished nations to provide care for these patients. Today, efforts exist to improve awareness, education, infrastructure, training, and resources in order to make excellent care a sustainable reality.
It is important to note that there can be many different “styles” of international volunteer trips. Some may have an exclusive focus on the service aspect, with a goal of treating as many patients as safely and successfully as possible. Other groups value the educational component and use the opportunity to provide education to local health care providers, sometimes even via formal continuing medical education activities coordinated with the clinical care. Still others decide upon a mix of the service and educational aspects. This strategic focus is important to define in advance of one′s mission. In general, it is necessary to partner with a local organization of some sort. These partnerships take many forms, often in the form of collaborations between the public health ministry in the host country, with academic centers, NGOs, or public–private partnerships.
Components of a Successful Humanitarian Cleft Trip
International trips are planned significantly in advance of actual travel. Identification of a target international site requires careful review and evaluation. Several facets should be assessed: What is the need of the area? What is the accessibility to the region? What resources are available? What, if any, local medical personnel are available to support the efforts? What is the local knowledge and awareness of the condition? How are incident cases identified? How can the news of arrival be disseminated? What funding is available? What role will local physicians play? Commonly, these questions are addressed in a visit to the location and in pretravel planning. It is also important to identify an in-country liaison to facilitate this coordination. It is imperative that a partner organization in the host country exists to coordinate the mission objectives. A successful humanitarian mission requires consideration of team composition, equipment, patient selection and screening, anesthesia, and operative care.
Team Composition
Surgical teams are traditionally led by otolaryngology-head and neck surgeons, facial plastic and reconstructive surgeons, plastic surgeons, or oromaxillofacial surgeons. The composition of teams varies, but, in general, they are composed of one or more surgeons, one or more anesthesiologists (preferably with pediatric training), and one or more nurses (operating room and familiar with postoperative care). The number of each depends on the number of available operating rooms and expected volume of cases. Thus, staffing ratios are determined to ensure optimal conditions for patient safety. Proficiency in the local language is strongly preferred for as many of the team members as possible. With the delivery of expanded multidisciplinary care, teams have expanded to include many of the following: pediatricians, speech-language pathologists, audiologists, dentists, orthodontists, social workers, geneticists, and psychologists.20 Team record-keepers and interpreters with medical knowledge have also been found to make valuable contributions. Teams may comprise as many as 8 to 14 professionals. Many teams prefer to work with local health care providers. Thus, if possible, the providers are mix of local volunteers and those who travel in from outside the country.
The addition of surgical residents to the makeup of teams has been debated. Members of the International Task Force on Volunteer Missions were divided.21 Arguments against include the fear that residents can interfere with the instruction of local physicians or weaken the quality of care provided.21 Some groups will only accept board-certified surgeons with letters of support from other surgeons verifying their experience in cleft repair.22 However, the majority of groups have expressed support for the inclusion of senior residents, advocating for their roles as the future leaders of humanitarian efforts and global sensitization. The senior author believes that such concerns are mitigated by a strict adherence to U.S. delineations of privilege. Thus, every team member may perform the same cases with the same degree of autonomy or oversight that they do in their own hospitals in the United States or various home institutions.
Pretrip Planning
Here is a checklist of general logistical considerations:
Identify a team leader (preferably experienced).
When possible, identify a host organization of facility.
Research and complete host country requirements for privileges.
Complete requirements for the local ministry of health.
Receive clearance for controlled substance transport and use.
Assess timing of travel based on host country conditions (holidays, elections, seasons, etc.).
Educate all team members on local customs, religious observance, and political climate.
Obtain appropriate visas and other travel documents for all team members.
Understand local endemic risks and plan for preventive and prophylactic strategies.
After a rigorous needs assessment of the host site and magnitude of the project has been undertaken, logistical planning is paramount to success. An experienced team leader will facilitate this process. A key first step is to apply for temporary privileges in the host country. This process is quite variable from country to country, and is facilitated by the host organization and facility. Appropriate permissions, such as requirements from the local ministry of health, must be acquired. If one is to bring controlled substances into the country, then clearance from the Drug Enforcement Agency must be received in advance. It is important to avoid travel during local holiday periods.20 All members of the team should educate themselves on the host nation′s customs and political environment. Partnerships with local medical and governmental agencies are beneficial.20 All visas and appropriate travel documents must be obtained. A study of the endemic risks in the region is needed, and appropriate vaccinations (e.g., hepatitis B), prophylactic medications (antibiotics, antimalarials, antiretrovirals), and preventative measures should be taken.21,23 It is important to clearly identify the team members. This may be provided entirely by the travelling team or, more commonly, involve a combination of international volunteers and local providers. This includes an accurate estimate of the number of cases that may be performed, in how many operating rooms. Staffing ratios are a key safety issue. An appropriate number of anesthesia providers, circulating nurses, and recovery room personnel must be available for the need. The recovery period is often a challenge, as the level of oversight in the hospital in the immediate postoperative period may be less than one experiences in his/her own institution. If inadequate, contingency plans are necessary.
The host organization prepares by publicizing the upcoming team visit. Radio is a very frequently used and successful medium for this. The use of local charity organizations like the Rotary or Lions Club can be helpful in distributing information. Remote areas may be reached with cell phone texting (in some countries) as well as direct communication to community health centers that are often operated by centralized government or other NGOs. Transportation for potential patients can also be facilitated by communication with these groups as well as other organizations where people meet (e.g., transportation companies, tourist attractions, or faith-based organizations). This collaborative process is only possible with networking and engaging the stakeholders with the common goal of treating children with CL/P. Screening of potential patients can be performed in advance if there are appropriately trained personnel to do so. In recent years, this often is enhanced by communication with the volunteer surgeons via email, with photos of prospective patients.
Equipment
Available resources vary widely at the local facilities. In some locations, reliable electricity and running water may be luxuries. An awareness of the local clinical laboratory and blood availability is essential. Most equipment can be transported to the site by the volunteer group; however, local access to autoclaves, anesthesia machines, and adequate suction is important insofar as these items are too cumbersome for travel.20 The following is a list of recommended equipment to take:
Syringes
Needles
Gloves (sterile and nonsterile)
Elbow restraints
Patient identification bracelets
Mosquito netting
Two laryngoscopes with multiple blades
Endotracheal tubes in varying sizes (from infant to adult)
Portable pulse oximeters
End tidal carbon dioxide monitor
Drapes
Gowns
Prep solution
Absorbable suture
Rechargeable portable head lights
Digital camera
Laptop computer
Extra batteries
Many teams ship their supplies to the host country in advance of the visit. However, others recommend that such equipment be checked as carry-on luggage by team members, in order to avoid customs concerns and unreliable delivery systems when single advance shipments are used.20 It is advisable to keep these items in locked storage areas while onsite to prevent theft.
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