Beyond Our Borders: Global Health in Pediatric Heart Disease – From Africa to Latin America
Mortality from congenital heart disease (CHD) has decreased over the last few decades in high income countries (HIC).1 However, both CHD and acquired heart disease (AHD) remain important problems in low and middle income countries (LMIC). The reason for the high mortality is multifactorial and varies between countries. However, some common factors include lack of access to primary and specialized centers, lack of adequately trained physicians and nurses, financial constraints and suboptimal coverage, absence of specialized units, lack of basic healthcare, and low awareness.
Over the years, healthcare providers and institutions in HICs have developed different strategies to improve the care of patients with CHD in LMIC. These strategies include:2,3
- Referring patients to other countries for care.
- Periodic visits of cardiac specialists to LMICs to diagnose, care for, and/or operate on patients with CHD.
- Training of physicians and staff in their home countries and abroad.
- Development of local programs.
Recently, telemedicine has been employed to improve care for these children.
The first two strategies improve the care of a few patients but are not sustainable and do not confer a long-standing effect. Training of local healthcare providers abroad may be effective but is costly and problematic when some do not return home. As such, the optimal long-term solution is the development or improvement of local programs using local human resources. In this piece, we describe two different programs in two very different settings that have improved care for patients with CHD and AHD in LMICs.
Malawi/Texas Children's Hospital/Baylor College of Medicine Pediatric Cardiology Partnership
Malawi is a small country in Southern Africa with a population of 18.2 million people.4 It is one of the poorest countries in the world, with a gross national income (GNI) per capita of $340 and an under-5 mortality rate of 64 per 1000 live births.5 There is a physician shortage with 0.19 physicians per 1000 people,6 with no in-country pediatric cardiologist.
Challenges of pediatric cardiology in Malawi include the double burden of congenital and acquired heart disease, the absence of an in-country pediatric cardiologist, limited cardiac diagnostic capability, no in-country cardiac surgery (with the exception of patent ductus arteriosus closure), no in-country cardiac catheterization, and limited medication availability, among other issues.
CHD affects about 1% of children globally, and Malawi is no exception. In addition, Malawi has a high burden of acquired heart disease in the young, particularly rheumatic heart disease (RHD) and HIV-related cardiac disease. Access to cardiac surgery is extremely limited. The majority of children needing cardiac surgery go to India through a Malawi government sponsored program, and some are able to come to other countries such as the United States, South Africa, the United Kingdom, and others through non-governmental organization (NGO) sponsorship. Thus, many children with urgent or complicated surgical needs cannot be assisted.
The Malawi/Texas Children's Hospital (TCH) pediatric cardiology partnership is based on infrastructure established by the Baylor International Pediatric AIDS Initiative, which has expanded to include pediatric hematology/oncology, surgery, obstetrics and gynecology, pediatric emergency medicine, and cardiology. The mainstay of the partnership is an ongoing local cardiology presence. For the past 3 years, attending cardiologists have spent between 2 and 5 months per year in Malawi. An echocardiography machine and ECG machine have been obtained for use at Kamuzu Central Hospital (KCH), the main hospital in the central region. In addition, medical students, clinical officers, interns, registrars, and Malawian colleagues have been trained in echocardiography and general cardiology. A TCH Cardiology Fellow rotation has been initiated; the fellow assists with training, echocardiography, and cardiology consultations while in Malawi for one month. Diagnostic capability is augmented by providing telemedicine consults.
The partnership has also taken on an advocacy role. RHD is the leading cause of acquired cardiac morbidity and mortality in young people worldwide, and particularly affects those in low-resourced settings. The Global Burden of Disease (GBD) study estimates that there are 33 million prevalent cases of RHD, causing more than 9 million disability-adjusted life years lost and 275,000 deaths each year. An estimated 169,000 cases exist in Malawi.7 RHD is preventable, yet continues to cause excessive morbidity and mortality in resource-limited settings. The partnership is currently working with the Malawi Ministry of Health to implement a register-based RHD control program.
Our partnership is built on the pillars of education, training, mentorship, clinical care, telemedicine, and advocacy. The Malawi/TCH partnership is a first step in improving the diagnosis and treatment of children with congenital and acquired heart disease in Malawi.
Mexico: The Kardias/ABC Medical Center/Texas Children's Hospital Program
CHD is the second most common cause of death in children under 5 years of age in Mexico.8 It is estimated that less than a third of patients born in Mexico with CHD have access to treatment,9 and when available, it is frequently suboptimal. There are no reliable statistics regarding mortality after surgery for CHD in Mexico but it is believed to be much higher than in HICs.
In Mexico, the healthcare system is fragmented. Only a small portion of the population has access to private insurance and private hospitals, whereas the vast majority of patients are treated in a variety of public institutions. In general, public institutions have a large number of patients but are overcrowded and have limited resources with deficient quality control. On the contrary, private institutions have high quality controls but do not have the number of patients required to develop expertise in the management of CHD. In addition, since salaries at public hospitals are very low, most physicians have multiple jobs to supplement their salary from public institutions with private patients. As such, it is difficult, if not impossible, to create the integrated multidisciplinary units that have proven successful for the management of patients with CHD throughout the world.
The Kardias Foundation is a non-governmental organization that was created with the aim of improving the quality of care for patients with CHD in Mexico. It supported the efforts of Dr. Palacios-Macedo, who in 2000 developed a CHD program at the Instituto Nacional de Pediatría (INP), one of the largest pediatric public hospitals in Mexico.10 Over the years, he developed a multidisciplinary team for CHD, but the challenges posed by the public system became unsurmountable.
In an attempt to create a center of excellence for CHD in Mexico, an innovative hybrid public-private program was developed in 2012 by the Kardias Foundation and the ABC Medical Center (a non-profit hospital that by charter devotes 7.5% of its profits to public assistance programs), with the support of TCH and the Mexican Ministry of Health. Care is provided by an integrated multidisciplinary medical team that works only for the hybrid program and the INP. Patients are procured from the INP (which is overcrowded and has long waitlists), other public hospitals in Mexico, and private patients. As part of the initiative, the Kardias Foundation made an agreement with the federal government to have the government pay ABC Medical Center, through a social insurance program called "Seguro Popular," the same amount of funds it would pay the public hospitals for each public patient that is operated on as part of the program. Additional funds are provided by private insurers (for private patients), the Kardias Foundation, and the ABC Medical Center Foundation. The Kardias Foundation also provides salary supplements to the medical team in order to allow them to dedicate themselves to the program. TCH provides program and training support, with TCH physicians and nurses visiting Mexico and Mexican physicians and nurses visiting TCH, as needed. The program also includes weekly ICU telemedicine rounds with TCH staff for discussion of complex cases.
During the first 18 months of the program, approximately 100 low complexity operations were performed with no mortality. As experience accrued, the complexity of the operations increased to the point of now covering essentially the entire gamut of CHD operations, including aortic arch reconstructions, arterial switch operations, and Norwood procedures. A total of 320 patients have undergone surgery as part of the program with an overall mortality of 2.8%, comparable to good programs in HICs. Interestingly, the mortality at the INP program has also decreased during this time, likely related to a spillover effect from the efforts of the hybrid program.
The success of this program highlights the need to think outside the box and design programs that capitalize on available resources. By integrating the private and public sectors, the program benefits from the large volume of patients in the public institutions and the high quality standards of private hospitals. In addition, it illustrates the benefits of "twinning" developing programs with large established ones in HICs to improve the care of patients with CHD in LMICs.
Outcomes for patients with CHD and AHD in LMICs are suboptimal. Currently, it appears that the most efficient and sustainable strategy to improve the care of patients with CHD and AHD in LMICs is the training of local human resources and the development of programs with enthusiastic local partners. The specific environment of each country has to be taken into account when designing creative solutions to improve the care of patients with CHD and AHD in LMICs.
- Boneva RS, Botto LD, Moore CA, Yang Q, Correa A, Erickson JD. Mortality associated with congenital heart defects in the United States: trends and racial disparities, 1979-1997. Circulation 2001;103:2376-81.
- Stolf NAG. Congenital heart surgery in a developing country: a few men for a great challenge. Circulation 2007;116:1874-5.
- Children's Heart Link: Linked by a common purpose. http://www.childrensheartlink.org/media/Linked%20By%20A%20Common%20Purpose%20Global%20Report%205-17.pdf. Accessed June 24, 2017.
- UN Country Data Profile. Available from: http://data.un.org/CountryProfile.aspx?crName=malawi]. Accessed 1 Feb 2017.
- 2015 World Bank Data Indicators. Available from: http://data.worldbank.org/country/malawi. Accessed 1 Feb 2017.
- World bank indicator: Malawi population physician ratio. Available from: http://data.worldbank.org/country/malawi. Accessed 1 Feb 2017.
- Global Burden of Disease Study 2013 Collaborators. Global, regional, and national incidence, prevalence, and years lived with disability for 301 acute and chronic diseases and injuries in 188 countries, 1990-2013: a systematic analysis for the Global Burden of Disease Study 2013. Lancet 2015;386:743-800.
- Instituto Nacional de Estadística y Geografía (INEGI). Principales causas de mortalidad por residencia habitual, grupos de edad y sexo del facellido. http://www.inegi.org.mx/est/contenidos/proyectos/registros/vitales/mortalidad/tabulados/ConsultaMortalidad.asp. Accessed May 20, 2017.
- Calderon-Colmenero J, Cervantes-Salazar JL, Curi-Curi PJ, Ramírez-Marroquín S. Problema de las cardiopatías congénitas en México. Propuesta de regionalización. Arch Cardiol Mex 2010;80:133-40.
- Palacios Macedo A. Birth of a New Program in Mexico City: The Kardias Experience. Semin Thorac Cardiovasc Surg Pediatr Card Surg Ann 2008;11:7-10.
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