Paediatric and congenital cardiac surgery in emerging economies: surgical ‘safari’ versus educational programmes^†

Abstract

To attract the interest of all people potentially involved in humanitarian activities in the emerging economies, in particular giving attention to the basic requirements of the organization of paediatric cardiac surgery activities, the requirements for a successful partnership with the local existing organizations and the basic elements of a patient-centred multidisciplinary integrated approach. Unfortunately, for many years, the interventions in the low and middle income countries were largely limited to short-term medical missions, not inappropriately nicknamed ‘surgical safari’, because of negative general and specific characteristics. The negative aspects and the limits of the short-term medical missions can be overcome only by long-term educational programmes. The most suitable and consistent models of long-term educational programmes have been combined and implemented with the personal experience to offer a proposal for a long-term educational project, with the following steps: (i) site selection; (ii) demographic research; (iii) site assessment; (iv) organization of surgical educational teams; (v) regular frequency of surgical educational missions; (vi) programme evolution and maturation; (vii) educational outreach and interactive support. Potential limits of a long-term educational surgical programme are: (i) financial affordability; (ii) basic legal needs; (iii) legal support; (iv) non-profit indemnification. The success should not be measured by the number of successful operations of any given mission, but by the successful operations that our colleagues perform after we leave. Considering that the children in need outnumber by far the people able to provide care, in this humanitarian medicine there should be plenty of room for cooperation rather than competition. The main goal should be to provide teaching to local staff and implement methods and techniques to support the improvement of the care of the patients in the long run. This review focuses on the organization of paediatric cardiac activities in the emerging economies, but ‘the less privileged parts of the world’ can be anywhere, not necessarily limited to economic constraints. Lack of diversity because of social, intellectual, educational and professional growth, the last consisting in cultural stagnation, is responsible for the lack of scientific progress and development.

Congenital heart defects, Humanitarian programmes, Low income countries, Paediatric cardiac surgery

INTRODUCTION

You may say I am a dreamer, but I am not the only one.

John Lennon, Imagine.

The incidence of congenital heart defects is about 8/1000 living births everywhere in the world, without major differences among the various geographical areas [1–3 ]. Attempts have been made to identify the true incidence, with studies reporting that in emerging economies, the incidence of congenital heart defects is higher than the average because of several factors, including genetics, elevated number of consanguineous marriages, poor nutrition and poor sanitation [1–11].

Since the care of patients with congenital heart defects is complex and requires very intensive resources, the main global issue remains the fact that the access to care is not equal for all, depending upon the countries of origin and the geographical location. As a result, every year about 90% of the 1 000 000 of children born with a congenital heart defect around the world do not have access to care or only receive suboptimal care [1, 11–14], not to mention the very huge number of patients in the paediatric age requiring heart care for non-congenital cardiac lesions, such as rheumatic and endocarditic disease [11–16].

This situation has stimulated the creation of many non-profit humanitarian organizations, trying to reduce the imbalance in health care existing across the globe. All these organizations rely on volunteer teams donating their time and expertise to provide diagnostic investigations and surgical treatment for congenital heart defects.

The purpose of this review is to attract the interest of all the people potentially involved in humanitarian activities in the emerging economies, in particular giving attention to the basic requirements of the organization of paediatric cardiac surgery activities, the requirements for a successful partnership with the local existing organizations and the basic elements of a patient-centred multidisciplinary integrated approach.

MATERIALS AND METHODS

About 90% of the 1 million children born every year in the world with a congenital heart defect do not have access to appropriate care [1, 11–14], and the same happens to a large number of paediatric patients requiring cardiac care for non-congenital heart lesions, such as rheumatic and endocarditic disease [11–16]. The reason is that these individuals live in regions with inadequate human, infrastructural and financial resources, due to a maldistribution of the available resources between high income countries versus low and middle income countries [1–14, 17–20].

A survey conducted from 2007 to 2009 by the World Society of Pediatric and Congenital Heart Surgery revealed that there was one congenital heart surgeon every 3.5 million individuals in Europe and North America, one every 6.5 millions in South America, one every 25 millions in Asia and one every 38 millions in Africa [1]. These data demonstrate the evident lack of human resources. Even if the survey was limited to the number of available congenital heart surgeons, it is very easy to speculate that a similar ratio exists with regard to the paediatric cardiologists, paediatric cardiac anaesthesists and intensivists, specialized nurses, perfusionists. And the reality is probably not much different from the required infrastructures, equipment and disposables.

In the attempt to reduce the imbalance existing across the world in the cardiac care, many non-profit humanitarian organizations have been created relying on volunteers offering their time and expertise to provide diagnosis and surgery for patients with congenital heart defects.

Unfortunately, for many years the interventions in the low and middle income countries were largely limited to short-term medical missions, not inappropriately nicknamed ‘surgical safari’, because of negative general and specific characteristics [16, 21–24].

Short-term medical missions

General characteristics

• The main driving motivation behind the missions was the desire of certain surgeons to increase their workload by operating on a higher number of patients than the lists available in their hospitals, with challenging and unusual congenital heart defects, and with a much lower degree of scrutiny of the obtained outcomes.

• Missions were often organized either against the wish and/or the real need of the local hospitals.

• There was a failure in matching the available knowledge and technologies with the local needs and abilities.

• Surgeons were doing the right things for the wrong reasons.

• Surgeons were leaving at the end of the mission patients in critical conditions because of the inadequate postoperative care.

• There was complete lack of an appropriate follow-up plan.

• No attention was given to the education of the local health care staff.

Specific characteristics

• Most missions were composed only of teams of doctors, frequently limited to the surgeons, even not including cardiologists, anaesthesists and intensivists. Furthermore, nurses, perfusionists and technicians were never considered for participation in these missions.

• Frequently, the surgeons involved were lacking of previous international experience and humanitarian preparation.

• The understanding of what was expected and what could be provided was often missing.

• The missions were organized despite a series of unknown information, such as case mix, patients volume, level of knowledge and expertise of the local colleagues, available equipment, level of postoperative care, involvement of the host hospital and nation, understanding of the local politics.

The negative aspects and the limits of the short-term medical missions can be overcome only by the long-term educational programmes.

RESULTS

Give a man a fish, and you feed him for a day.

Teach him how to fish, and you feed him for a lifetime.

Anne Isabella Ritchie, ‘Mrs. Dymond’. September 1885

A survey conducted on 2013 with the members of PediHeart and the World Society of Pediatric and Congenital Heart Surgery revealed a total of 80 non-governmental organizations (NGOs) providing paediatric cardiovascular activities in 92 low and middle income countries [13]. The largest percentage of area covered by the NGOs was South and Central America (42%), followed by Africa (18%), Asia (17%), Europe (17%) and Asia-Western Pacific region (6%).

The main problems showed by the survey were the following:

• About 50% of the NGOs reported a decline of activities, or lack of growth, in the last 5 years.

• About 50% of NGOs provided 2–5 missions/year, whereas 20% of NGOs only one mission/year.

• About 25% of NGOs reported that the local hospitals did not perform any operations in between the missions.

The reasons identified as responsible for the above issues were lack of adequate funding, limited availability of medical volunteers and equipment, inadequate infrastructures in the local sites [13].

Several groups or NGOs reported their experience with long-term medical missions, and each of them provided important contributions and useful suggestions to establish a new long-term educational project [12–14, 16, 25–33].

Any successful long-term programme has the following requirements: high-quality measurable outcomes, sustainability, scalability and efficacy.

Several reports suggested various approaches to reach the targets [12–14, 16, 25–33], but the most suitable and consistent models of long-term educational programmes have been proposed and realized by two groups: Detrain et al. and Young et al. [12, 14]. The suggestions received by their models have been combined and implemented with the personal experience to offer a proposal for a long-term educational project.

Long-term educational programme

Site selection

The process of site selection, the first step of any long-term educational programme, begins with extensive investigation to select the place, with a careful search conducted through institutional and individual contacts.

The following requirements are to be satisfied: (i) the possibility of maintaining real-time communications; (ii) the local interest in obtaining assistance, with clear identifications of needs and priorities; (iii) the real wish to develop a long-term programme of paediatric cardiac surgery.

Demographic research

Before deciding the area where to organize a support project, it is compulsory to know the size of the local and the regional population, the characteristics of the existing air and ground transportation for both the team that has to reach the region and for the effective transfer of the patients referred for potential surgery and the presence or lack of political stability. The region taken in potential consideration should be excluded in the presence of any of the following: (i) insufficient patient referral as estimated from an accurate demographic analysis; (ii) inadequate transportation routes; (iii) unreliable physical or financial infrastructures; (iv) potential major environmental hazards, like flooding or earthquakes areas; (v) proximity to military conflicts; (vi) negative cultural attitudes towards medical treatments in general, and particularly towards the Western medicine; (vii) proximity to an already established and functioning paediatric cardiac unit.

Site assessment

Once a potentially suitable area is identified, the site assessment has to investigate several issues, with onsite inspections performed by individuals with previous experience in international humanitarian missions.

The group of experts should visit all existing hospitals and services with potential for collaboration, like units of maternity care and neonatology, paediatric services and functioning departments of adult cardiac surgery.

The resources of the potential host hospital have to be screened with particular attention to personnel, structures and equipment.

Personnel. It is important to evaluate the different training levels and the specific role of hierarchies in all components: doctors, nurses, perfusionists and technicians, ‘in addition to the minimal requirements in terms of professional credentials, particularly for the surgeon’. The full commitment by all the aspiring paediatric cardiac team members is essential to establish a long-term programme.

Structures. Basic requirements, like power and running water supply and sanitation, have to be verified, together with the existence or the feasibility of a programme for the prevention and control of infections.

Equipment. The availability, ready supply and maintenance of equipment and disposable materials have to be planned in advance, and their continuity need to be warranted, particularly for the critical areas of operating room and intensive care unit, but also for the support services, such as the echocardiography and cardiac catheterization laboratories, the blood bank, the biochemistry and microbiology laboratories, the radiology department, the pharmacy.

The full unconditioned support of the medical director of the host team, as well as of the local administration and the regional health authorities, is mandatory.

Team building is crucial, with accurate definition of the shared objectives and clarifications of the respective roles and responsibilities of all the individuals who will be involved in the programme.

All participants have to be aware from the beginning that a long-term educational programme is extremely demanding for both sides and requires broad and challenging joint effort.

Finally, serious considerations must be given to the potential self-sustainability of the programme, achievable only with the availability of sufficient political wish and adequate economic resources.

Organization of surgical educational teams

The visiting mission should consist of a multidisciplinary team including cardiologist, anaesthesist, surgeon, intensivist, perfusionist and intensive care unit nurses. Whenever possible, the team should include members from the same hospital, to warrant the homogeneity and continuity of protocols for patients management. All these people should be organized by an agency with expertise in grouping and long distance transportation, VISA issues, safety assurances and cultural and language barriers.

Ideally all members of the mission should have the capability for learning, with the ability to transfer knowledge and expertise in selected technical competences, the time to give lectures on matters related to the entire perioperative management of children with congenital heart defects and, at the same time, the attitude to work in a team and the motivation to teach this in the local environment.

Any educational programme should have self-sustainability within 5–7 years from the beginning as the target to reach.

Regular frequency of surgical educational missions

Both hosts and visiting team have to agree before beginning the clinical agenda, taking into account the local needs balanced with the available resources.

Clear definition is required for the following: (i) selection of the patients as potential candidates for surgery, including the evaluation of the natural selection of neonates with congenital heart defects; (ii) selection of congenital heart defects, possibly giving preference to the ones with the chances of biventricular repair versus univentricular type of repair, with one stage versus multiple surgical stages and finally with the concrete possibility of contributing to the growth of the local surgical team; (iii) evaluation of the overall experience of the host team, including the preoperative investigations, intraoperative treatment and postoperative management; (iv) choice of the case mix of the surgical list keeping in mind the promotion of growing the experience for the host programme.

The greatest difficulty encountered by any surgical mission is to establish achievable goals for each mission.

A recurrent psychological challenge is the need to face the reality that the team cannot save all the children who have been referred in the same period. Unfortunately, there is always a major discrepancy between the number of children with congenital heart defects who require a surgical treatment and the number of patients who can effectively undergo surgery during the surgical mission. And despite a case mix list decided taking into account all the variables listed above, it is unavoidable that there are many more children to whom an operation is denied than the children operated on. And this is very difficult to be accepted by the families of the patients and by the local caregivers, and is creating great frustrations among the visiting team.

Furthermore, to provide an effective transfer of knowledge, the following points have to be observed: (i) the recognition of the knowledge deficits of the learner has to guide the teaching towards the more important and urgent areas; (ii) the teacher is required to have adequate expertise in providing the appropriate materials, with a teaching style appropriate for the learner level of understanding; (iii) it is important to maintain all possible opportunities for clarification, evaluation and correction.

With this regard, the most frequent obstacles to clear and efficient communication are the cultural and language barriers, together with the characteristics of the training and organization of the host team.

All the people involved in any educational surgical programme have to keep in mind that the transfer of knowledge and skills at surgical level is particularly complex, not only with regard to the teaching of the technical issues, but particularly related to the criteria for the patients selection and to the choice of the best available surgical option. The most difficult knowledge to transmit and to teach is to consider all the elements to decide the choice of the right operation for the right patient at the right time.

The continuous monitoring of the progress of the programme requires a precise ‘wrap up’ meeting at the end of each mission, a reliable communication feed-back loop, the evaluation of the parallel upgrade of the local services and the need to provide the local team with a list of ‘next steps’.

The programme evolution and maturation

The initial approach should be quite conservative to obtain a high level of success. This is essential to provide good outcomes for the patients and appropriate transfer of knowledge.

The programme can evolve only with very solid basic diagnostic procedures and surgical plans. At the beginning, it is advisable to address straightforward congenital heart defects, to perform palliation or repair on a large percentage of patients, without severe burdens on limited resources and to facilitate as much as possible the host team progress.

Only after a series of initial successful outcomes, the team should take care of more complex heart defects, of course after having reviewed the available financial and infrastructural support.

To complete the continuous evaluation and maturation of the programme, real-time communications have to be available for the preoperative planning as well as for postoperative consultations for follow-up.

Educational outreach and interactive support

A major step forward is feasible only with the cross-participation to the programmes with on-site and off-site training, involving doctors, nurses and technicians, with reciprocal exchange of visits, for periods of different durations accordingly to the expertise of the people involved and to the local requirements.

To evaluate the surgical outcomes, it is indispensable to organize a data collection and analysis, with an efficient data base for all diagnostic, interventional and surgical procedures, including the risk adjustment for all cases (Aristotle, RACHS, SATS).

Very useful is also a strategic guidance accompanied by leadership development, with the combined review of the outcomes, the definition and monitoring of the annual educational objectives and, more difficult but essential, the correction of gaps in leadership, personnel or team performance.

Of course, the programme has to be sustained by financial solvency and legal security, at home and abroad, knowing that, unfortunately, the financial sustainability is in most of the cases depending upon voluntarism, and the clinical activities are performed in unknown environments and with lack of predictability.

Limits

Financial affordability

To establish a long-term educational programme, very solid fund-rising mechanisms, as well as professional help by dedicated and competent individuals, are required.

Basic legal needs

Because of the huge variety of legislations in the different countries involved in supporting medical programmes, it isvirtually impossible to establish legal guidelines internationally valid.

The same is happening for cross-border training and treatment programmes, where it is extremely difficult to find homogeneous regulations and criteria for recognition.

Legal support

A legal protocol agreement should be available in all the institutions where the visits are planned, prepared keeping in mind a non-religious and non-political structure.

Non-profit indemnification

Insurance coverage should be considered and provided to all participants in the surgical missions, together with travel insurances, including a plan for medical evacuation.

General liability should be clearly defined.

Some organizations have suggested to consider some form of workers compensation for the loss of leave and income.

CONCLUSIONS

As suggested by Gary Raff, the success should not be measured by the number of successful operations of any given mission, but by the successful operations that our colleagues perform after we leave [34]. ‘Or in other terms, success can only be measured when the local team decides that we are going to be of more benefit elsewhere’.

Considering that the children in need outnumber by far the people able to provide care, in this humanitarian medicine there should be plenty of room for cooperation rather than competition. The main goal should be to provide teaching to local staff and implementing methods and techniques to support the improvement of the care of the patients in the long run.

This review focuses on the organization of paediatric cardiac activities in the emerging economies, but ‘the less privileged parts of the world’ can be anywhere, not necessarily limited to economic constraints. Lack of diversity because of social, intellectual, educational and professional growth, the latter consisting in cultural stagnation, is responsible for the lack of scientific progress and development.

Conflict of interest: none declared.

Author notes

†

Presented at the 29th Annual Meeting of the European Association for Cardio-Thoracic Surgery, Amsterdam, Netherlands, 3–7 October 2015.