Edited by: Antonio Francesco Corno, University of Leicester, United Kingdom
Reviewed by: Meena Nathan, Harvard Medical School, United States; Sarah Moharem-Elgamal, NIHR Bristol Cardiovascular Biomedical Research Unit, United Kingdom
This article was submitted to Pediatric Cardiology, a section of the journal Frontiers in Pediatrics
This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
In low and mid-income countries, there has been a 50% global decrease in the incidence of preventable deaths of children since 1990. However, the mortality from non-communicable diseases (NCD) such as congenital heart disease (CHD) has not changed. Of the estimated 1.3 million children born with CHD annually, over 90% do not have access to cardiac care. With the increasing fertility rates in sub-Saharan Africa, the health burden of CHD will increase as well. Over the last 30 years much has been achieved with short term cardiac medical missions. However, much remains to be done to provide long term solutions needed to achieve the sustainable development goal of reducing deaths of children <5 years of age. This review discusses the present status and the need for a paradigm shift to achieve long term sustainability.
The global population is approaching 8 billion. Over the last few decades progress has been made in reducing maternal and child mortality as well as diseases such as malaria, tuberculosis, and HIV. The UN, WHO, and UNICEF data show that global mortality in the first 5 years of life declined from 93 deaths per 1,000 live births in 1990 to 39 in 2017 (58%) (
Causes of global mortality for children <5 years' age.
The United Nations Development Program (UNDP) sustainable development goal for 2030 is to reduce under-5 mortality to 25 per 1,000 live births. We know from the current UNDP data that roughly 70 million children may die before reaching their 5th birthday and most will be from sub-Saharan Africa (
The world has often focused on communicable diseases as they are public health issues. In the last three decades there has been a fall in number of new HIV infections by 30% and over 6.2 million lives saved from malaria (
Total annual birth of children with CHD by continent wise. Total number is roughly 1,310,000. Similar number with bicuspid aortic valves. Reproduced with permission from Hoffman (
To achieve the sustainable development goal of 2030, care of CHD needs to be an integral part of the big picture.
The common goal should be a universal reach of cardiac care with a concurrent decrease in mortality and morbidity from CHD. Presently there is a wide disparity in cardiac facilities. Over 70% of the facilities reach <20% of the world's population, leaving over 90% of children born with CHD without any access to cardiac care. In a detailed review, Bode-Thomas and Olga et al. have outlined all the challenges in the management of CHD in developing countries, and possible solutions (
The current organizations involved in the care of children with CHD are shown in
Developed (established) programs
Developing programs
“
Restarting programs (failed or abandoned)
The various organizations providing cardiac care in LMICs.
There are two types of volunteer cardiac surgery programs described by Dearani et al. (
Short term (1–2 weeks or once or twice per year) medical missions. Some of the missions in the world are listed in
Long term, pairing programs, or imbedding models are programs in the developed world partnering with programs in the developing world for long-term partnerships, commonly 5–10 years. The focus is on education, training, skill set development, improving outcomes, quality control, and long-term sustainability.
Some groups doing cardiac surgical missions.
1 | American College of Surgeons | |
2 | Bambini/Cardiopatici Nel Mondo | |
3 | Be Like Brit | |
4 | Cardiostart | |
5 | Chain of hope | |
6 | Children's Heart link | |
7 | Crudem | |
8 | CTSNET | |
9 | European Association for Cardiothoracic Surgery | |
10 | Earth Med | |
11 | European heart for Children | |
12 | For hearts and Souls | |
13 | Foundation Mauritanienne duCoeur | |
14 | Frontier Lifeline | |
15 | Gift of Life International, Inc. | |
16 | Global Healing | |
17 | Global Heart Network | |
18 | Global Impact | |
19 | Haitian Hearts | |
20 | Healing the Children | |
21 | Hearts Around the World | |
22 | Heart to Heart | |
23 | Heartbeat International Foundation | |
24 | Heart Care International | |
25 | Hearts for All | |
26 | International Aid | |
27 | International Children's Heart Foundation | |
28 | International Children's Heart Fund | |
29 | Heal A Child | |
30 | Magdi Yacoub Foundation | |
31 | MAP International | |
32 | Mending Kids International | |
33 | Mercy Ships | |
34 | Novick Cardiac Alliance | |
35 | Open Heart International | |
36 | Palestine Children's Relief Fund | |
37 | Pan-African Academy of Christian Surgeons | |
38 | Physicians for Peace | |
39 | Project Kids | |
40 | Project Haiti Heart | |
41 | Project Hope | |
42 | Project Open Hearts | |
43 | Project Medishare | |
44 | Russian Gift of Life | |
45 | Samaritan's Purse-International Relief | |
46 | Save A Childs Heart Foundation | |
47 | Surgeons of Hope Foundation | |
48 | Team Heart- Rwanda | |
49 | The Heart of a Child Foundation | |
50 | The Childrens Lifeline | |
51 | Vina Capital Foundation | |
52 | Walter Sisulu Pediatric Cardiac Foundation | |
53 | World Heart Federation | |
54 | World Pediatric Project |
Short term cardiac medical missions have been offered for many years in Asia, Africa, Central and South America. In the earlier era these missions only performed closed heart procedures before gradually introducing open heart surgery. In later stages some of the native surgeons and cardiologists were sent to developed countries for training. These countries receiving short-term missions usually fell into three categories including:
Developing countries with
Developing countries which will likely never have a program of their own (e.g., Caribbean and surrounding islands with a population of 40 million and the Pacific with similar populations).
Previous failed programs
Over the last two decades there has been a proliferation of short term missions, especially in Asia and Africa. Based on different strategies, some of these missions have been improperly labeled as “medical/surgical safaris” (
Here we discuss the present condition of the medical missions and possible future strategies. There are many pertinent questions. Do we continue with these short term teams? How do we better utilize human resources? How can we build programs in low resource countries? Can there be a better coordination between non-governmental organizations (NGOs)? What is the exit strategy? Can there be a unified approach? What are the long term strategies? What are the possible strategies to maximize the benefit? The big questions are sustainability, accountability, transparency, and training. There is no “one size fits all” strategy.
PERSISTENCE AND CONTINUITY: In one of the largest experiences in starting multiple pediatric cardiac centers in Russia, Young et al. acknowledged the importance of careful site selection based on demographic research as well as initial and secondary site assessments (
This was further reiterated by Dearani et al. in their review of humanitarian efforts in developing countries and emerging economies (
COOPERATION OF NGOs: Multiple organizations working in synergy to realize a common goal is crucial to success. Frigiola et al. highlight the success of the Bambini Cardiopatici Nel Mondo association and their cooperation with various NGOs, which has paved the way for various cardiac programs in Africa and beyond (
FOCUS ON CHD: It is common knowledge that the priority in developing world is to combat communicable diseases. Very little attention is given to congenital or acquired heart disease in children. We must recognize the problem and the contributing factors, provide access to cardiac operations for common congenital diseases, and provide infrastructure through partnerships with governments and NGOs. When a program is initiated, starting with adult cardiothoracic surgery before pediatric cardiac surgery may be logical. Other important points include increasing human resources in health care via training programs and ongoing research with quality improvement (
ON SITE ISSUES: Once an “onsite” campus is identified, there are many factors which determine the success of the mission. The donor (NGO) and the host (on site) need to better coordinate the necessary needs and wants. Molloy et al. have identified the many on site issues and their possible solutions (
VIEW FROM HOST PROGRAMS: Africa has many unique problems. They are over 1 billion in population with more than 50% under 25 years of age (
FINANCES: This is the biggest predicament of the short-term mission trip. In a recent study published by Dr. William Novick and team, the humanitarian pediatric cardiac surgery programs to LMICs showed that they are very cost effective on a long-term basis (
The list of resources and the contingency plans for a short-term mission (Dr. Nunn).
We should take adequate staff. Limit doctors and take more nurses, OR, ICU, anesthetic, and floor staff | Loss of water, Oxygen, and Electrical supply to OR and ICU. It will happen at some point |
Biomedical staff are important ICU staff must back up local staff | Hand ventilating every patient in OR and ICU |
Team manager role is critical | Emergency evacuation |
We should select people who are “lateral thinkers” and who are willing to innovate in given circumstances- especially surgical and perfusion teams | Dealing with all possible post-operative complications in ICU |
We should take enough materials and equipment | Local equipment failure e.g., we should have portable monitors in case of failure of standard monitors |
We must take enough drugs for all contingencies | Emergency and resuscitation drugs |
We must be prepared for inadequate blood banking support. We must take hemostatic agents e.g., Tranexamic acid and if possible, Factor VII A components | Provision for using fresh whole blood if components are not available. Will need to stock with blood drawing kits |
We must take enough instruments/drapes/dressings | Local sterilization equipment failures |
The Do's and Don'ts in a short-term mission (Dr. Nunn).
The trip should only happen at the invitation of the host country | We should not force a team onto the host if they are not ready for us |
We should engage with the local administrators and provide positive feedback each trip and ask them what they would like to achieve on the next trip and try to put that into practice | We should not impose our strategy on the host. Successful teams are those whose mission aligns with that of the host |
Training must be hands on and very much “do as I do”, rather than “do as I say” | We should not compromise on patient safety |
We must work within the local politics, local trainees …. Competencies…… | We just do not know all the background linkages between people in another society and can quickly offend |
These things take time and certainly the worst thing is to try to tell the local administrators what to do | This also applies to local funding We have to say to ourselves, “this is the reality, how are we going to get done what we came here to do?” More importantly though, local funding needs to build and sustain the program that develops from these visits, so it is the essential ingredient for home grown success long term |
Well one thing we will do is do it ethically and without compromise and try to live by example | We must be wary of using the voluntary work as a conduit for private practice |
We should try to achieve outcomes that are the same as our parent institution | Deaths will be long remembered and will not lead to good will amongst the administrators and providers of funds when we are not there |
We should select patients who can expect a good outcome and can reasonably be expected to be helped by the local team when they get up to speed | This means that heroic surgery should not be done. Just because the patient will die if we do not “have a go” is the worst way to select the patients for surgery |
Attend socials but limit them so we can rest and concentrate on work ahead | Try not to spend every evening going to social functions. It is natural for a team to want to socialize but those working days are hard and no one can perform to their own standard with that dragging them back each day. We do not do it at home so how can we think we are super human on one of the trips |
We should take a very long-term view about how quickly the local team will come up to speed | We must stop being critical of the hosts |
Security is very important and must be provided by the local teams. Professional indemnity must be granted from the government of the country | In unsafe areas we should not venture on our own- no “Bravado” actions |
Immunization must be a pre-requisite for all team members |
Essentials for a cardiac OR (OR, Operation rom; IV, Intravenous pole; IAB, Intraaortic Balloon pump). Reproduced with permission from Dr.Pezzella
Essentials for an ICU (IV, Intraveonus; IAB, Intraaortic Ballon pump). Reproduced with permission from Dr.Pezzella
There is a collective experience of over 30 years dealing with short term missions. There are many lessons learned and few can be used to model a long term program. We have many years of catching up to do. The global challenge of CHD is ever increasing. In order to achieve the shared goal of accessible cardiac care for every child, the objective should be more global collaboration and shared strategies. This strategy depends on several questions. There is an established program which needs further help? Was there a program which is now closed and needs rebuilding? If there are no existing programs, does the country need or want one?
The task of providing cardiac care and surgery for all children in need appears daunting. There is a global shortage of skilled workers in congenital cardiac care. Leblanc proposes a “KISS” (keep it simple and safe) approach (
Here we review some suggested ways to achieve a successful long-term program:
SHARED VISION: If our common goal is to provide cardiac care for all children in the world, the existing societies (Society of Thoracic surgery (STS), American association of Thoracic surgery (AATS), Asian Society of Cardiovascular and Thoracic Surgery (ASCVTS), European association of Cardiothoracic Surgery (EACTS), World Society of Pediatric and Congenital heart surgery (WSPCHS), World congress of Pediatric cardiology and cardiac surgery etc.) must, as well as the CTS Net play an important and expanded role in a top down approach. In addition to establishing volunteer platforms and conducting annual sessions of development of cardiac surgery in LMICs, there should to be a larger cooperation and collaboration between various societies. One such example is the Cape Town declaration on access to cardiac surgery (especially the scourge of RHD) in the developing world (
“SPARK PLUG”: An essential component for a long term success is a “spark plug.” The term was used by Dr. Terry Davis, a congenital surgeon, from Ohio, in a private conversation. He described it as an “organization or individual, often from the host country, who is a dedicated leader, focused, invested, and physically present in a local program on a long term basis.” There are many examples of “spark plugs” in the world. We have previously described work of some organizations in Russia (
COMMUNICATION AND COORDINATION: We believe there are enough resources for many LMICs if there is better coordination between the various donor and host organizations (NGOs, corporates, individuals, governments, and hospitals). The inadequate communication between these organizations leads to insufficiency and duplication of work. Centers of excellence in the developed countries need to be identified. Coordination between these centers, the NGOs, and the host countries can be very beneficial. Within the host country there is usually a vast maldistribution of medical care. The location of the hospital should be selected based on population distribution, urban/rural location, income divide among the people, availability of materials, and ease of access of the facility. A formal MOU between NGOs/charitable trusts, societies, governments, corporations, and individuals is encouraged. Developing regional “hubs” which serve smaller satellite centers for a geographical zone or region would be ideal. Examples of “hubs” could include: (1) Europe looking after certain African countries, (2) North America helping Central and South American as well as the Caribbean countries, (3) Australia helping with the Pacific Islands and some Asian countries, (4) Israel and Saudi Arabia helping with the surrounding countries, and (5) Emerging economies such as China India, and South Korea also helping with training and material support. This method is more logistical and feasible as these countries are often in the same time zones. The question would be who would oversee such an organization. What is really needed is a worldwide body to divert allocation- but we all know this is unlikely. Some of these initiatives were detailed by Dr. Cox in his presidential address in 2001 (
One of the earliest successful partnerships which resulted in a long-term program is the Vien Tim institute in Vietnam. It was a result of partnerships with government, Carpentier foundation, and numerous other charities. Over the years the institution grew and currently performs over 1,500 open heart operations annually (
Some practical aspects of coordination include:
Choosing one country of interest and then coordinating with all agencies interested in that country. This is idealistic and may be difficult to follow. But an attempt can be made. Young et al. have described the establishment of 6 new congenital programs over 25 years of focused approach in Russia (
Teams going sequentially for a defined period creating an overlap of resources. This is hard to achieve with little coordination between the involved NGO's. This has been the request from many of the host countries from Africa (
TRAINING: The strategy for training is very important. Training which involves administrative, clinical, and research areas should be an effective component of a mission. However, the most difficult piece is the hands-on training in the OR. The training can be divided into several phases (1) observational training in a developed center (2) hands-on training by visiting teams on site, and finally (3) having an embedded on-site mentor, consultant, or proctor. The role of retired or semi-retired surgeons is invaluable for a fixed 1 month stay or longer (
Recently, countries such as India have become the new hub for training as they have increased the number of cardiac programs. There are surgeons being sent there for hands on training (
World societies such as WSPCHS, EACTS, and the hubs can help with periodic education programs. Simulation training is invaluable. Other modalities like use of 3-D technology, virtual reality, and augmented reality may also play a role in the future. Remote training can be achieved with telemedicine. It cannot be stressed enough how invaluable this technology is for remote discussions, training, and consultations. However, this can never replace hands-on training for the local teams.
MATERIAL SUPPORT: Developing infrastructure is a challenge. There should be development in all supporting departments such as the OR, ICU, anesthesia, perfusion, biomedical, cardiology, pharmacy, nursing, blood bank, and administrative support. Basic infrastructure needs to be provided. The equipment/disposables, devices, sutures, instruments and drugs are expensive. Here the donations of equipment (ideally <10 years old) in good condition from developed centers may be invaluable. There are aid agencies which refurbish used equipment including perfusion machines which can be useful. The disposables and materials may be cheaper to buy locally. Post-operative follow-up is also crucial to success of teams. A continual supply of drugs needs to be made available. A final and important question is where will the financial resources come from (e.g., government, private institution, charitable trust, or out of pocket)?
EXIT STRATEGY: Long term programs may be more successful if there are already “
DATA: For long term success a data base needs to be maintained for evaluation of progress. The epidemiological studies pertaining to incidence and prevalence in CHD and RHD need to be better understood. Then the center specific/surgeon specific data can be evaluated. This includes the cases performed and their follow up. There could be a better role for the WSPCHS in the US and the European Congenital Heart Surgeons Association in Europe to spearhead the data acquisition of these programs.
We have written about the past and what is being done presently by many organizations.
There is very little written about the reasons for failure of programs in developing and developed countries. It is human nature not to talk about failures. We have identified a few reasons for failure of projects. Often the reasons are due to (1) unsustainability and no exit strategy (e.g., Haiti and Nigeria), (2) “Bridge too far”-Caribbean and many Pacific islands are spread over hundreds of islands with small populations and it would be impractical to have individual cardiac centers in all islands (e.g., Cook Islands, Kiribati, Tonga, Fiji). Developing regional hubs for them is probably the right thing. The Dominican Republic acting as a hub for the Caribbean and either Australia, New Zealand, Hawaii or Papua New Guinea can be developed as a hub for the Pacific, (3) poor results-often the surgeon is blamed but it is multifactorial and a system failure, (4) financial issues are one of the most glaring problem. Many programs in Central and South America are finding it difficult to run their current cardiac programs (e.g., Guatemala), (5) personal egos of bureaucrats and medical professionals, (6) safety and war situation such as programs in Middle East, and finally (7) lack of government support.
We believe that much depends on developing regional hubs and using embedding as an effective tool. Dr. Aldo Castaneda once said “Development of a sustainable pediatric cardiac program in emerging countries presents many difficult challenges. Hard work, perseverance, adaptability, and tolerance are useful aptitudes to develop a viable program in an ‘emerging' country. We are not in favor of medical surgical safari efforts, unless these efforts include training of a local team and eventual unit independence. It helps if an experienced (± senior/retired) surgeon leads this effort on a full-time, pro-bono basis. Local and international fund raising is essential to complement vastly insufficient government subsidies” (
“Embedding” involves a trained surgeon, retired or on sabbatical spending long periods of time helping a center. It could be 6 months or 1 year. One of the authors (Pezzella) has had the experience of spending long periods of time in China, Vietnam, and other countries (
Much has been written by scores of individuals and organizations about their experience in providing cardiac care for LMICs. Much has been done and lessons learned. We believe that a comprehensive global cooperation is urgently needed if we are to provide heart care to every child born and fulfill our goal of sustainable care by 2030. There needs to be active participation from different cardiac societies, collaborations with NGOs and other organizations. This needs to be on the top of agenda for their organizations. Regional hubs need to be identified and supported. Training needs to be coordinated and we hope that there is a fire lit in all cardiac surgeons/cardiologists to help with this cause. We hope for many “spark plugs” who are willing to give their time for training and help with any unit on a long-term basis. The time to act is now.
All datasets for this study are included in the manuscript and/or the supplementary files.
JM has done over 50% of the draft. TK has introduced concepts and contributed to 20% of the draft. AP has initiated this review and helped with literature search and thus helped with 30% of the draft.
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
The authors would like to acknowledge Dr. Graham Nunn for his contributions, Mr. Andrew Timmons for his help with the figures, and Dr. Joseph Martinez for help with preparing the draft.