Arthur Bartolozzi1
1Harvard Medical School, Boston, MA, USA
Address correspondence to: Arthur_Bartolozzi@hms.harvard.edu
Hena Ahmed, “Neurodiscovery in the Deep Blue”
Introduction
Complications from neurosurgery can be intractable and life-threatening. In the developing world, transportation, social stigma, and limited medical resources exacerbate neurosurgical disease and sustained challenges with follow-up care. Neurosurgical medical missions are expanding their reach across the globe as groups look to bring life-changing surgical techniques into disadvantaged regions. While some missions participate in transient mobile approaches, others invest in establishing permanent health centers. The chosen strategy must, above all else, take responsibility for surgical outcomes. Delivering sustainable surgical aid depends on assuming the responsibility for collateral damage and developing support infrastructure to manage ongoing complications. To achieve this goal, neurosurgical missions must treat a narrow field of disorders, work to improve patient access to follow-up care, implement a protocol to outsource difficult cases, and integrate with the local setting.
Mission Models
Four styles of global surgical delivery have emerged from decades of development beginning in 1971 – the founding of Médecins Sans Frontières. The first style involves an external team bringing skills and resources to resource poor settings for a limited time. Second, an external team trains and works with local personnel to expand the reach of transient mission trips. Third, an external team collaborates with local hospitals and health professionals to establish a permanent institution that the external team can support remotely or transiently. Finally, for extreme cases, external teams coordinate travel for local patients to receive medical care in the teams’ home countries [1].
These categories often overlap depending on group resources, goals, and commitment. Missions cluster at the extremes with respect to size. Prior to the 2009 Humanitarian Action Summit, 25% of respondent humanitarian organizations providing surgery performed fewer than 100 surgeries per year while another 20% provided more than 1,000 [2]. Translating group dynamics into global health success depends on good management and self-awareness [3]. Part of this awareness requires focus both on the type of disease a team is equipped to treat and the local disease burden. Neurosurgical missions confront a complex array of significantly deleterious diseases that require clear objectives to treat effectively.
The Case of Neurosurgery
Many papers addressing global neurosurgical disease begin with statistics highlighting the dearth of local specialists: 50-70 fold fewer neurologists are present in some developing countries and an estimated 10-15 countries in Africa lack a single neurosurgeon [4]. These claims are important but too easily dwarfed by statistics heralding overall scarcities across medical professions [5]. Common arguments suggest neurosurgeons are too hard to train, that it is too complex to recruit and follow neurosurgical patient populations, or that resources can be better spent elsewhere.
Global trends accentuate the immediate importance of developing neurosurgical programs. Between 1990 and 2010, there was a 32% worldwide increase in disability adjusted life years (DALY) for neurological disorders. This excludes the categories of ischemic and hemorrhagic stroke, which despite accounting for 1484 DALYs/100,000 population (nearly the sum of the combined burden of HIV/AIDS and tuberculosis), have declined almost 10% [6]. The emerging neurosurgical conditions are therefore unrelated to stroke. Brain disease broadly defined to include neuropsychiatric diseases as well as stroke, meningitis, congenital abnormalities, and injuries accounts for nearly 20% of the years of lost life and 35% of the disability adjusted life years in Europe [7]. Europe does not suffer from the same burden of disease as the regions this essay addresses, but this statistic emphasizes how consequential improved medical treatment of brain disease can be. Neurosurgical diseases can be lethal, are severely neurologically and functionally debilitating, remain poorly understood, and are difficult to diagnose and treat in resource limited settings.
There is a marked difference, however, in the effect of neurosurgical intervention on adult and pediatric populations as it relates to the overall health and productivity of a population. A study from Northern Tanzania highlights the distribution of neurosurgical disease in rural, poor settings: “Of 151 patients the most frequent diagnoses were traumatic brain injury (60%), followed by tuberculosis of the spine (14%), spina bifida (9%), space-occupying cerebral lesion (9%), and hydrocephalus (8%). The overall mortality was 10.6%; [mortality] was especially high in patients with hydrocephalus (25%), space-occupying cerebral lesions (54%), and spina bifida (29%) .” [8] Trauma and injury continue to lead as disease causing agents in the developing world [9]. In these situations, the events leading to injury affects prognosis as much as readily available medical resources. Children (ages 0-14) also account for the same percentage of disability adjusted life years due to injury as adult (ages 15-44) counterparts [10]. A discussion of the role of medical professionals and international aid organizations in preventing injuries is beyond the scope of this essay. For brevity, injuries draw from rapid industrialization, limited government oversight of construction, and poor access to healthcare.
What the Northern Tanzania study highlights is the significant mortality associated with operable congenital neurosurgical conditions. These operations provide a unique lens into longitudinal complications following surgery due to the remarkable restoration of life. Several groups have endeavored to provide life saving neurosurgical services to underserved regions. The following is an analysis of two case studies, highlighting several areas for improvement of global neurosurgical care delivery and follow up.
Case Study: VCU Annual Visits to Guatemala
This case study involves a transient mission trip organized by a group at Virginia Commonwealth University (VCU) following their recent report, “A model for neurosurgical humanitarian aid based on 12 years of medical trips to South and Central America.” [1] The VCU team ran surgical trips predominantly to Guatemala through the non-profit Heal A Child Foundation. This international organization facilitated preparative steps in Guatemala anticipating the arrival of the surgical team. It was unclear from the report how permanent Heal A Child’s presence is in Guatemala, but it did not operate out of a proprietary hospital. Rather, the Foundation arranged for time and space in local clinics while publicizing the neurosurgical clinic to surrounding areas.
Results of the VCU surgical mission are aggregated by treatment (Figure 1). Given the large number of hydrocephalus shunt placements, it is important to note the small (4%) figure for shunt revisions. In conjunction with the 5-8% reported overall complication rate – the majority of which the authors attributed to shunt failure – this is strikingly low. A 2001 Canadian trial reported up to a 62% shunt failure rate at 4 years for certain devices [11], and a 2013 American study found that by 15 year follow up dates from the initial shunt surgery, 84.5% of patients required at least one revision [12]. Of note, many shunt placement patients were lost to follow up – leaving them with morbidity and mortality not captured in the presented data.
Designing follow up procedures also raised concerns. The VCU team integrated international referral into its follow up care aided by communication with local staff through the parent foundation. In addition, the team operated only if the patient’s family committed to a follow up protocol. This required a return visit the following year, which over the 12-year study period saw a 77% successful 6-12 month follow up rate. Transportation from rural areas contributed most strongly to failure to follow up. This is not a new idea. It is well known that patients in developing countries travel inordinate distances at great personal expense and peril to access limited medical services – and increasing distances track with decreased utilization [13].
In the context of a highly specialized provision such as neurosurgery, what responsibility do transient centers have to accommodate regional transportation issues? Given overwhelming demand for services at the point of distribution, a utilitarian response would suggest no responsibility. It may be possible even to screen patients for whom follow up failure might present too much of a risk for consequences of surgery. Implementing such protocols might improve follow up and outcomes initially, but could have an adverse effect on the group’s ability to raise funds or maintain welcome in the country. Viable options for transient centers include increasing collaborative efforts with rural clinics so that they are prepared to support neurosurgery-associated complications and varying visit locations. Superficially, varied visit locations might seem to resolve certain access issues since the transient surgical teams are mobile on a trip-by-trip basis. However, this solution would challenge established infrastructure for patient recruitment.
The assignment of responsibility must adapt to accommodate the evolution of the team. A review of the VCU team’s report argues that since children are a decreasing proportion of the population in the northern hemisphere, surgical subspecialties will need to travel to train new physicians. Transient clinics accomplish this goal for readily achievable surgeries with limited follow up [14]. This kind of changing perspective on an educate-serve-train paradigm increases the probability of new physicians with each visit. Handoffs are documented sources of medical error in developing [15] and developed [16] countries alike. As surgical team members change, there must be specific protocols for revisions and ongoing issues with follow-up. Responsibility for ensuring follow up and limiting complications might be nebulous, but ensuring care continuity is essential for transient clinics.
Case Study: Uganda CURE Hospital
In 2000, the international organization CURE established a hospital in Mbale, Uganda to focus specifically on addressing neurosurgical disease. CURE hospitals have traditionally developed a specialized focus, from orthopedics in Malawi to maternal health in Afghanistan. Since its founding, CURE Uganda surgeons have performed 8900 surgeries – many of them for congenital hydrocephalus. For a case where follow up is important – e.g. hydrocephalus shunts need to be replaced in children as discussed above – permanent institutions can more easily prepare for this kind of longitudinal care. Roughly 10% of CURE Uganda patients were lost to follow up in 2011 compared to 23% for the VCU team. Surgeon-driven research also estimated the economic value to Uganda to be $3.1 million to $5.2 million for 297 patients in 2005 alone [17]. These medical and economic successes would not have been possible without a commitment to community integration.
CURE Uganda maintains a strong spiritual component – with a “how you can pray for CURE” information section and a featured biography of their spiritual director on the front web page. This is part of an effort to connect with the hospital’s deeply religious patient population. Improving follow-up and communication both depend on cultivating a shared sense of mission with local communities. The case of neurosurgery makes this religious component potentially more meaningful than in other circumstances. Complex physical symptoms and altered psychology are not readily accessible pathologies for most people so faith can play an important role in processing medical treatments. Integrating with the community prepared the surgeons at CURE Uganda to refashion care for hydrocephalus.
Complications associated with shunt-based hydrocephalus gave rise to endoscopic third ventriculostomy (ETV) as the primary treatment. (Treatment and indications reviewed in Reference [18]). Initially at CURE Uganda, the average time to follow up for shunt placement was 15.2 months, with a 1.5 month lag between reporting a failed shunt and revision [19]. Concerns for emergent shunt replacement and predicted failure were difficult to manage in a setting where follow up, medical care, and knowledge of the condition in community health centers were unreliable. ETV had a much shorter period of follow up (i.e. 1 week, and 3, 6, and 12 months following the operation) because most complications associated with ETV present within the first 6 months [19]. Engineering a procedure to condense acute medical risk into an early and immediate time frame enabled CURE Uganda to achieve better long-term outcomes. Of patients treated initially with ETV surgery, 73% were “successful” or demonstrated a reduction of “irritability, vomiting and headache, decreased spasticity and improved gait, and resolution of ocular symptoms such as ‘sunsetting’ or sixth nerve palsy.” [19] Others were abandoned due to complications in surgery or replaced with common shunts. In the past 8 years, this process has been streamlined, expanded to treat myelomeningocele, and changed thinking about shunt procedures in the US [20, 21].
Data from CURE Uganda support the suggestion from the VCU team that community health awareness and access positively impacts pediatric survival. In a 2012 study, CURE doctors surveyed patients treated for myelomeningocele for five-year survival and found that regions with community rehabilitation programs reduced mortality from 44% to a rate comparable with unaffected peers, 16% (Figure 2) [22]. Largely run by non-government organizations, these community-based programs provided additional support and medical reminders for families following pediatric neurosurgery.
Survival can largely depend on parental behavior and sociocultural choices made in light of the diagnosis. Families’ choices to avoid or delay available treatments for their children for fear of consequences (i.e. neurological symptoms, delayed milestones, and abnormal development) adversely affect the child’s prognosis, making these cases very challenging [22]. In the Mbale case study, it is possible that the community programs normalized the disease conditions thereby empowering families with validation that supporting their children throughout infancy would significantly impact their future existence.
Hospitals like CURE Uganda also have an imperative to invest in future patients. Developing procedures at permanent global surgery centers not only requires longitudinal investment, but also a commitment to teaching. CURE Uganda partnered with iPATH to train neurosurgeons from across the developing world [23], in an effort to create sustainable care delivery for future patient populations. However, foreign physician training programs encounter difficulty when they try to integrate foreign doctors because of protective laws that prevent those doctors from achieving parity in patient contact. Further, when training doctors to return to their home countries, many express a lack of support from their home institutions. This might suggest that transient training teams should consider accommodating new practices.
Responsibility After Surgery
The responsibility for neurosurgeons following global missions constrained by cost, scope, and human resources has evolved along with understanding of methods for delivering the best care. Transient and permanent centers manage this responsibility differently, but in both cases there is a clear mandate for expanding continuing care vigilance, implementing training programs, bonding with local populations, and framing prospective disease states in understandable terms.
Maintaining successful follow up for neurosurgical disease is critical for protecting the investment of health in a patient. Mentioning equitable distribution of resources raises specters of rationing that fluster physicians and donors alike. However, outsourcing cases to international providers or ignoring realities (cultural, geographic, political, or otherwise) that prevent patients from following through with critical aspects of care severely hinders a mission’s efficacy. It is important to abstract decisions to give or withhold treatments from surgeons on the ground by instead implementing selection criteria, more rigid follow-up guidelines, or traveling community clinics early in the mission planning process. Such rules will likely not prevent difficult cases from arising in the clinics, but will help surgeons begin to think of their role beyond the limits of technical services.
Propagating services rests within surgeons’ responsibility to contribute to the surgical deficit in developing countries. Missions at their core seek to fill this void: they bring skill, personnel, equipment, and time. Most groups recognize that training local healthcare professionals leads to leaving a recurring impact. To approach sustainability, groups must train according to their mission model. Transient teams can provide acute educational exposure to existing hospitals; permanent institutions are better equipped to train individuals in depth and facilitate patients’ transitions to community care teams. More longitudinal institutions are able to develop understanding of the regional burden of disease, aggregate data, and rally for others to support ongoing treatment. Reaching beyond available means or conflating objectives across mission models ruins the lasting impact of a mission.
Impact also depends highly on missions’ integration with local populations. The head of CURE Uganda’s neurosurgical unit, Dr. Benjamin Warf, articulated this shift writing, “Our sphere of responsibility has expanded, and in the parlance of Christian ethics, we have new neighbors.” [23] This terminology draws together principles of shared experience and responsibility to others. Surgical missions are never isolated and they depend on local buy-in. This is especially true for neurosurgical missions where patients do not always grasp the complications, stigma, and consequences resulting from intervention. The importance of spirituality and Christian religious thought in Uganda are essential aspects that the CURE hospital accessed with a targeted ethos of prayer. Translating this lesson to transient centers requires careful pre-trip evaluation and research. At some level, missions will always encounter cultural barriers, but their effectiveness hinges on practicing sensitivity toward local understanding of their mandate.
Communication becomes acutely delicate when neurosurgical missions confront how to convey adverse outcomes. This paper did not address certain neurological conditions because reliable surgical treatments are still being developed. This includes psychiatric or obsessive disorders, neurodegenerative disease, and epilepsy. These diseases carry significant emotional burdens that build over time. With the advent of empirical deep brain stimulation studies, treatment options are starting to emerge, but implementing these operations in developing countries remains distant [24, 25, 26, 27, 28]. Ascertaining accurate cognitive histories and communicating the goals of treatment for these diseases is challenging even in developed countries. Language (not translation) and cultural barriers will continue to impede implementation of neurosurgical intervention even after clinical science masters the techniques.
Conclusions
Neurosurgical missions following both transient and permanent models of global health delivery expose important factors governing responsibility after surgery. The case studies in this essay highlight facets of care delivery, burden of disease assessment, and mission organization that can profoundly influence local health and economy. With the advent of new, more comprehensive, and neurologically challenging surgeries, future missions will need to apply these lessons of integrating community rehabilitation teams, outsourcing complicated cases, training local physicians, and cultivating trust to the way they deliver care. Managing responsibility for follow up care lies at the center of this framework and will determine the overall success of global neurosurgical missions.
About the artist
Hena Ahmed is a second year medical student at Harvard Medical School and a self-taught oil painter. You can visit her at www.patientsandpaintbrushes.com. “Neurodiscovery in the Deep Blue” reflects the medical and research challenges of the global burden of neurological disease.
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