Despite advances in surgical and catheter-based treatment for congenital heart disease (CHD), there remain wide disparities across the globe. Ongoing international humanitarian and in-country programmes are working to address these issues with the ultimate goal to increase the quality and quantity of paediatric cardiac care, particularly in under-served regions of the world. This review aims to illustrate the reasons for these inequalities and suggests novel ways of improving access and sustainability of CHD programmes in low-income and middle-income countries.
- Cardiac Surgery
- Health Service
- Global Health
Statistics from Altmetric.com
Heart disease in children is a rising global health problem.1 A number of recent publications and professional society addresses have raised greater awareness about the global prevalence of congenital heart disease (CHD), backlog of untreated patients and poor access to cardiac care in low-income and middle-income countries (LMICs). International humanitarian and in-country efforts to improve cardiac care in LMICs have chronically been frustrated by lack of funds, inadequate local healthcare infrastructures, competing healthcare priorities and critical shortage of specialists.2–4 In this review, the authors will discuss the scope of the problem, explore social and economic impacts of CHD in LMICs and suggests novel ways of improving access and sustainability of CHD programmes in these under-resourced regions.
CHD: impacts on healthcare systems and society in LMICs
CHD is a common birth defect and an important cause of death in the first year of life, after infection.5 The incidence of CHD ranges from 1.2 to 17 per 1000 live births.6 With advancements in cardiac surgery and paediatric cardiology, it is possible to provide early diagnosis in the fetus and provide surgical or catheter-based interventions with good outcomes. In the current era, operative mortality for CHD is <5% in the developed world.1 In the context of LMICs, timely diagnosis and treatment of CHD are exceptions rather than the rule, and outcomes are not known.7–10
In 1999, Dr Felix Unger published benchmark data demonstrating wide disparity in the number of cardiac operations across the different regions of the world. Data consisted mostly of adult operations and also contained information on congenital cases. Cardiac surgeries were most available to people living in North America and Europe. Asia and Africa were the most underserved regions.11 Though the situation has improved since then, CHD remains vastly under treated in under-resourced countries, approximately <1.5% of children with CHD receive lifesaving interventions.12
Persistent barriers to cardiac services in LMICs
The issues of limited cardiac services and restricted accessibility are tied to complex local economic, social and political issues in LMICs. Major roadblocks include rapid population growth, competing healthcare priorities, lack of healthcare funding, inadequate infrastructures and critical shortage of specialists.1–3 ,5 ,13–17
Population growth and limited healthcare funding
The current world population is 7.2 billion; while most of the people live in Asia, the highest population growth rate is in Africa.18 Countries in these regions are heavily affected by the ‘double disease burdens’ which include communicable or infectious diseases and non-communicable diseases (NCDs). It is estimated that NCDs contribute up to one-third of the total disease burden, with projection approaching 45% by the year 2030.19 NCD-related mortality is estimated to be as high as 80% of all deaths in LMICs.5
In most countries, healthcare spending parallels the gross domestic product (GDP). WHO data from 2010 to 2013 showed that high-income countries spent an average of 11.8% of GDP on health, which contrasted sharply to 5.8% in LMICs. Low domestic healthcare spending severely restrict health services to essential priorities. Poor population everywhere heavily relies on government or public programmes for healthcare. In Mexico, public and social insurance provide health coverage for the majority of salaried and non-salaried workers and their families.14 ,20 In Guatemala, nearly 60% of the population lives below the poverty line. The government spends <2% of GDP on healthcare. As a result, <1% of children with critical CHD have access to lifesaving interventions.13 Public funding for CHD treatment is also inadequate in India. In public hospitals where subsidised treatments for CHD are available, the wait lists are long. Unfortunately, children with more correctable forms of CHD do not receive timely interventions.21 In socialist countries such as China and Vietnam, cardiac surgery is available free-of-charge to children aged <6 years who live in major cities. In the case of children from rural areas, families either pay out-of-pocket or rely on charitable funds.22 ,23 Raj et al24 described the debilitating and impoverished financial burdens experienced by families of Indian children with CHD. Many of these families experience job loss and required to take out high-interest loans. In many parts of Africa, cardiac services are simply not available or affordable for many people since non-cardiac diseases take priority in budget allocations.25
Healthcare system challenges
Programmes in LMICs do not have the appropriately trained staff and equipment to support paediatric cardiac services. Pronounced care gaps exist between the urban–rural and poor-affluent divides. Components necessary for a functional heart centre which include screening, triage and transporting, available surgical or catheter-based interventions, postoperative care and outpatient follow-up are in need of improvement in in-country cardiac programmes (ICPs).4 ,25–27 Mobile cardiac units were created to improve access for children with in small cities and rural areas. The mobile cardiac units are equipped with portable screening equipment (ECG) and clinicians (educators, nurses and cardiologists). Mexico and China reported their experience regionalising cardiac programmes to improve resource utilisation, optimise access to care, standardise treatment and improve outcomes for participating centres.22 ,28
The literature from the ICPs provides a wealth of information on local ingenuity to meet the needs within their borders given constraints on infrastructures, finance and personnel shortage.13 ,14 ,21 ,22 ,26–41 The ICPs are knowledgeable about local disease burden and natural history, patient characteristics, resources, constraints and sociopolitical milieu. However, their key challenges are financial resources and trained personnel shortage. They are faced with the difficult tasks of allocating limited resources to provide appropriate and timely treatment. As a result, the waiting lists are long, and interventions are often performed in children with advanced stages of heart failure, cyanosis, malnutrition and pulmonary hypertension.13 ,14 ,22
Voluntary and humanitarian initiatives
External supports from humanitarian non-governmental organisations (NGOs) have been crucial in the development of cardiac programmes in LMICs in the last two decades. ICPs rely on external funding supports to fill the gap where domestic healthcare funding is inadequate. Financial resources from NGOs make up 55%–65% of health income in countries such as Tanzania, Malawi and Mozambique.42 A recent study estimated that 250 million USD were spent to support 6000 short-term medical missions from USA to LMICs.43 However, it is not known what proportion of these missions were CHD related. These NGOs efforts provide direct cardiac services to patients, as well as strengthen healthcare systems through transfers of knowledge, equipment and money to build cardiac programmes in LMICs.1–3 ,12 ,44–47
A recent survey of paediatric surgeons and cardiologists, conducted by the World Society for Pediatric and Congenital Heart Surgery (WSPCHS), revealed that 80 NGOs provided training, diagnostics and interventional medical missions to cardiac programmes in 92 countries. The majority of the NGOs are based in the US and Europe. The NGOs share common goals of providing infrastructure supports and training to ICPs programmes. Earlier ‘medical surgical safari’ medical support models have become less popular. These initiatives involved sending teams on short-term medical-surgical missions to ICPs. This approach has been criticised for the lack of long-term commitment towards programme development.1–3 ,12 ,44 ,45 ,47–49 Successful NGOs in the current era are using stepwise models that involve rigorous selection criteria to identify partner ICPs, onsite needs assessment and development of joint growth strategies by the NGO-ICPs dyads. These examples of collaborations or ‘twinning’ initiatives require intensive bilateral commitments in terms of finance, training and programme building with the goal of self-sustainability for the ICPs within 5–7 years. At the end of a successful collaboration, the ICPs would be capable of providing heart care with significant case volume, graded complexity and good outcomes. These ICPs may assume function of regional centres of excellence (COE) to support neighbouring programmes within the region.12 ,44 Of concerns, NGOs’ initiatives such as these are costly. Nearly half of the NGOs from the WSPCHS survey self-reported that their organisations experience declines in funding and inability to recruit medical volunteers.46 Constraints such as these raise serious concerns about the sustainability of long-term NGO efforts.
Tremendous past and current efforts by the ICPs and NGOs are still outpaced by the great number of children with CHD in LMICs who need treatment. A global strategy that emphasises on impact and outcomes could significantly change the way in which ICPs and NGOs collaborate, apply innovations and measure collective efforts.
Vision and coordination of initiatives are needed in order to accelerate progress in paediatric cardiac care in this setting. Global professional societies such as the Society of Thoracic Surgeons, American Association for Thoracic Surgery, European Association for Cardio-Thoracic Surgery, Asian Society for Thoracic and Cardiovascular and Thoracic Surgery, the Global Forum on Humanitarian Medicine in Cardiology and Cardiac Surgery and the WSPCHS provide the platforms to discuss problems and highlight current efforts at annual meetings. ‘The vision of the World Society for Pediatric and Congenital Heart Surgery is that every child born anywhere in the world with a congenital heart defect should have access to appropriate medical and surgical care’.1 Cohesive strategic planning is needed to provide backing for this vision.
Centres of excellence
Centralisation of resources is crucial to improve the healthcare services in resource-limited settings. The idea of creating COE that are dedicated to patient services and support smaller programmes within the major world regions had been outlined previously.50 A regional COE needs to meet qualifications in fundamental areas of clinical excellence, training, research and development. The COE can provide much-need advanced training for clinicians within the region. The COE can also match regional needs with external supports to improve training, obtain equipment and help allocate financial resources. Research and development programmes should also be central to the mission of the COEs. In Asia, COEs in Singapore, South Korea, Malaysia, Japan, Australia and New Zealand serve as training and leadership hubs to support neighbouring programmes in Vietnam, Cambodia, Laos, Mongolia, Myanmar, Oceanic countries and territories. Established COE such as Frontier Lifeline Cardiovascular Center in India and Shanghai Children's Medical Center in China have built hub-and-spoke alliances with programmes within and beyond their borders throughout Asia.1 ,22
Education and training
Training of paediatric cardiac surgeons and other essential members of the multidisciplinary team is a top priority to ensure successful development of paediatric heart programmes in LMICs. Loisance51 summarised the major challenges in providing training for cardiothoracic surgeons in LMICs. Currently, there are no international standards, guidelines or requirements for CT surgical training.52 Each country may or may not have its own training and accrediting system. These training problems also exist for other specialties such as anaesthesia, intensive care and cardiology. Collaborations through ICP–NGOs interactions, COEs, academic pairings between institutions in LMICs and their counter parts in developed countries have been the methods of onsite or abroad training for cardiac specialists in LMCIs. There are obvious drawbacks associated with training through short-term and infrequent medical missions or abroad observership, which is not optimal for sustained skill acquisition and maintenance. Similarly, sending clinicians abroad require significant away time and financial commitments. Recently, there have been great interests in long-term imbedding projects, where experienced cardiac specialists spend 1–12 months in host programmes. This has great value both medically and financially. China developed in-country training programmes which have been shown to be feasible and cost-effective.53 In addition, the internet and telemedicine have become major vehicles to transfer knowledge and skills. For instance, CTSNet is a primary source of communication and online curriculum for CT surgeons in-training. The Open Access movement has made medical journals freely available and this is particularly beneficial to resource-limited clinicians in LMICs. Currently, 28 000 journals with 1.8 million articles per year are available for free on the internet.54 ,55
Innovative healthcare funding
Despite a growing middle class in emerging economies, private insurance or self-pay for healthcare services remains rare. Public–private partnerships between governments, inter-governmental agencies and for-profit sectors are emerging alternative healthcare funding which warrant consideration.31 India serves a good example of a LMIC that adopt innovative financial models to support healthcare for a large population of 1.25 billion. The Indian government hospitals are often underfunded. The private and for-profit hospitals cater to self-funded patients, while charitable hospitals heavily depend on philanthropy money. A novel strategy of community-based health insurances (CBHI) has emerged in response to the demands for out-of-pocket spending to pay for healthcare. The CBHI scheme involves prepayment plans which predicates on the notion of pooling risks in order to reduce individual financial risks. CBHI plans are heterogeneous in terms of coverage, regulations and management functions.56 Payment can be scaled to the patient's ability to pay. These models enable farming communities to afford monthly payment of US$5 for free healthcare, including cardiac surgery throughout the State of Karnataka. The unintended consequence of low governmental input in healthcare leads to a competitive space for private hospitals to develop cardiac programmes which cater towards patients with resources within India as well as international patients seeking quality care within geographic feasibility.36
Collaborations among stakeholder NGOs and ICPs can potentially accelerate improvement of cardiac care in LMICs. Jointly coordinated efforts can eliminate redundant efforts and improve resource utilisation. Ross et al published their experience developing a consortium of cardiac NGOs working in the Dominican Republic (DR) over the course of 8 years. Collaboration was driven by the desire to combine resources and expertise to provide sustainable training to a local programme in the DR. The lead organisation provided logistical staff supports, handled the coordination of joint activities, compiled comprehensive team reports and provided feedback to the DR team. The collaborative also conducted interval conference calls with all teams for strategic planning.57 Ecosystem mapping of current NGOs efforts would suggest the need for more collaboration.46
Global data collection and sharing
Outcome data collection and analysis are important to assess progress and mark eventual high-quality and self-sustainability status for ICPs. Currently, there are regional databases in Asia, North America and Europe, but there is no comprehensive international data house. Jacobs et al58 highlighted the importance of creating linkage among the existing subspecialty database to facilitate data sharing. Benefits of a common database include a framework for quality assurance clinical reviews, research and the ultimate tool to improve patient care.46 ,59 There are important barriers before the realisation of this vision. These include agreement among stakeholders on core variables, participation, cost, collecting, verifying and dissemination of data. Programmes in the LMICs that are early in their development tend to be wary of transparency and commitment to report outcomes. They are hesitant to reveal outcomes that may be below contemporary benchmarks.12
Cardiovascular services in LMICs remain severely limited in the current era, which contrasts sharply with rapid progress achieved in the rest of the world. Capacity building towards the ultimate goal of self-sufficient ICPs will require fundamental paradigm shifts. Leadership from every level would need to converge on priorities and provide overarching vision and supports. Strategic planning should replace tactical tendencies to ‘scratch where it itches’. Initiatives undertaken by stakeholders including the ministries of health, funders, ICPs, NGOs, industry or academic partners will need to be measured by the impacts against measures such as childhood mortality, the backlog of untreated patients and strengthening of healthcare systems. Furthermore, silo initiatives that tend to fragment this cardiac ecosystem can worsen the problems by duplicating work and siphon off limited resources. Instead, sand-box collaborations should be encouraged. With leadership, strategic healthcare planning, coordinated/collaborative action and rigorous accountability of resources utilisation, it may be possible to accelerate progress in paediatric cardiac services in LMICs.
Contributors NN, JL-W, KSI and ATP meet all criteria for authorship, including (1) substantial contributions to manuscript content and (2) critical review and approval of the submitted manuscript.
Competing interests None declared.
Provenance and peer review Commissioned; externally peer reviewed.
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.