Pediatric Cardiac Service Development Programs for Low- and Middle-Income Countries in Need of Improving or Initiating Local Services.

Pediatric cardiac services are deficient in most of the world. Various estimates are that between 80 and 90% of the world's children do not receive adequate cardiac care for their congenital or acquired heart disease. We began a modest effort in 1992 to assist in the development of pediatric cardiac services in low- and middle-Income countries (LMIC). Since then, we have provided services in 32 countries based on 3 distinctive development strategies, in order to meet the local needs for pediatric cardiac services. Our goal has always been to provide education, training and sufficient experience so that eventually we leave a site with a fully functional, independently operating pediatric cardiac service that is sustainable over time. The margin between success and failure is dependent upon a number of factors and we hope that this chapter will provide others with the tools for success.

Results of international assistance for a paediatric heart surgery programme in a single Ukrainian centre.

BACKGROUND: Surgery for CHD has been slow to develop in parts of the former Soviet Union. The impact of an 8-year surgical assistance programme between an emerging centre and a multi-disciplinary international team that comprised healthcare professionals from developed cardiac programmes is analysed and presented.Material and methodsThe international paediatric assistance programme included five main components - intermittent clinical visits to the site annually, medical education, biomedical engineering support, nurse empowerment, and team-based practice development. Data were analysed from visiting teams and local databases before and since commencement of assistance in 2007 (era A: 2000-2007; era B: 2008-2015). The following variables were compared between periods: annual case volume, operative mortality, case complexity based on Risk Adjustment for Congenital Heart Surgery (RACHS-1), and RACHS-adjusted standardised mortality ratio. RESULTS: A total of 154 RACHS-classifiable operations were performed during era A, with a mean annual case volume by local surgeons of 19.3 at 95% confidence interval 14.3-24.2, with an operative mortality of 4.6% and a standardised mortality ratio of 2.1. In era B, surgical volume increased to a mean of 103.1 annual cases (95% confidence interval 69.1-137.2, p<0.0001). There was a non-significant (p=0.84) increase in operative mortality (5.7%), but a decrease in standardised mortality ratio (1.2) owing to an increase in case complexity. In era B, the proportion of local surgeon-led surgeries during visits from the international team increased from 0% (0/27) in 2008 to 98% (58/59) in the final year of analysis. CONCLUSIONS: The model of assistance described in this report led to improved adjusted mortality, increased case volume, complexity, and independent operating skills.

Ethics in humanitarian efforts: giving due credit to the local team.

BACKGROUND: It has become increasingly apparent that only the truly effective humanitarian work emphasises empowering local practitioners. One problem, though, is that we are often seen as the "experts" who have come to "save" the children. This perception may adversely affect the confidence in the country's own providers. METHODS: Non-profit organisations performing paediatric heart surgery in developing countries were identified from two sources: the CTSnet "volunteerism" web page and an Internet search using the term "Pediatric Heart Surgery Medical Mission." The website of each organisation was reviewed, seeking a "purpose" or "mission" statement or summary of the organisation's work. A separate Internet search of news articles was performed. The top five articles were analysed for each organisation, and the findings are then analysed using the Principlist and Utilitarian ethical systems. RESULTS: A total of 10 separate non-profit organisations were identified. The websites of eight (80%) placed significant emphasis on the educational aspects of their work and/or on interaction with local professionals. However, of 43 news articles reviewed, reporters mentioned education of, or interaction with, local professionals in only 14 (33%), and four out of 10 organisations studied had no mention of the local providers in any article. CONCLUSIONS: Although non-profit organisations emphasise the teaching and programme-building aspects of their efforts, media reports largely focus on simpler and more emotional stories such as patient successes or large donations. Acknowledgement of the clinical and financial contributions of the host countries is both a duty following from the principle of justice and an important factor in long-term programme building.

Ethics in humanitarian efforts: when should resources be allocated to paediatric heart surgery?

BACKGROUND: In countries with ample resources, no debate exists as to whether heart surgery should be provided. However, where funding is limited, what responsibility exists to care for children with congenital heart defects? If children have a "right" to surgical treatment, to whom is the "duty" to provide it assigned? These questions are subjected to ethical analysis. METHODS: Examination is initially based on the four principles of medical ethics: autonomy, beneficence, non-maleficence, and justice. Consideration of beneficence and justice is expanded using a consequentialist approach. RESULTS: Social structures, including governments, exist to foster the common good. Society, whether by means of government funding or otherwise, has the responsibility, according to the means available, to assure health care for all based on the principles of beneficence, non-maleficence, and justice. In wealthy countries, adequate resources exist to fund appropriate treatment; hence it should be provided to all based on distributive justice. In resource-limited countries, however, decisions regarding provision of care for expensive or complex health problems must be made with consideration for broader effects on the general public. Preliminary data from cost-effectiveness analysis indicate that many surgical interventions, including cardiac surgery, may be resource-efficient. Given that information, utilitarian ethical analysis supports dedication of resources to congenital heart surgery in many low-income countries. In the poorest countries, where access to drinking water and basic nutrition is problematic, it will often be more appropriate to focus on these issues first. CONCLUSION: Ethical analysis supports dedication of resources to congenital heart surgery in all but the poorest countries.

Establishing Sustainable Cardiothoracic Surgery Programs in Underserved Countries.

Congenital heart disease is the most common birth defect worldwide, and accounts for a high proportion of the world's infant mortality. About 9 of every 10 babies born each year are born in areas without adequate access to heart surgery; overcoming this problem will necessitate addressing the worldwide shortage of an estimated 3,700 pediatric cardiac surgeons. Establishing sustainable heart surgery programs requires more than an investment of money: political, social, and cultural issues unique to each environment need to be addressed. Organizations desiring to help develop cardiac surgical centers need to focus on communication and bidirectional education, and to make a long-term commitment to each site. By identifying and addressing obstacles, success rates are high.

Cost-effectiveness of Humanitarian Pediatric Cardiac Surgery Programs in Low- and Middle-Income Countries.

Importance: Endorsement of global humanitarian interventions is based on either proven cost-effectiveness or perceived public health benefits. The cost-effectiveness and long-term benefits of global humanitarian pediatric cardiac surgery are unknown, and funding for this intervention is insufficient. Objectives: To determine the cost-effectiveness of the intervention (multiple 2-week-long humanitarian pediatric cardiac surgery program assistance trips to various low- and middle-income countries [LMICs]) and to produce a measure of the long-lasting effects of global humanitarian programs. Design, Setting, and Participants: International, multicenter cost-effectiveness analysis of a cohort of children (aged <16 years) undergoing surgical treatment of congenital heart disease during 2015 in LMICs, including China, Macedonia, Honduras, Iran, Iraq, Libya, Nigeria, Pakistan, Russia, and Ukraine. The study also assessed estimated improvement in the United Nations Human Development Indicators (life expectancy, years of schooling, and gross national income) for each individual survivor, as a proxy for long-term benefits of the intervention. Main Outcomes and Measures: The primary outcome was cost-effectiveness of the intervention. The secondary outcomes were potential gains in life expectancy, years of schooling, and gross national income per capita for each survivor. Results: During 2015, 446 patients (192 [43%] female; mean [SD] age, 3.7 [5.4] years) were served in 10 LMICs at an overall cost of $3 210 873. Of them, 424 were children. The cost-effectiveness of the intervention was $171 per disability-adjusted life-year averted. Each survivor in the cohort (390 of 424) potentially gained 39.9 disability-adjusted life-years averted, 3.5 years of schooling, and $159 533 in gross national income per capita during his or her extended lifetime at purchasing power parity and 3% discounting. Conclusions and Relevance: Humanitarian pediatric cardiac surgery in LMICs is highly cost-effective. It also leaves behind a lasting humanitarian footprint by potentially improving individual development indices.

Medical missions for the provision of paediatric cardiac surgery in low- and middle-income countries.

This review will outline the role of visiting cardiac surgical teams in low- and middle-income countries drawing on the collective experience of the authors in a wide range of locations. Requests for assistance can emerge from local programmes at a beginner or advanced stage. However, in all circumstances, careful pre-trip planning is necessary in conjunction with clinical and non-clinical local partners. The clinical evaluation, surgical procedures, and postoperative care all serve as a template for collaboration and education between the visiting and local teams in every aspect of care. Education focusses on both common and patient-specific issues. Case selection must appropriately balance the clinical priorities, safety, and educational objectives within the time constraints of trip duration. Considerable communication and practical challenges will present, and clinicians may need to make significant adjustments to their usual practice in order to function effectively in a resource-limited, unfamiliar, and multilingual environment. The effectiveness of visiting trips should be measured and constantly evaluated. Local and visiting teams should use data-driven evaluations of measurable outcomes and critical qualitative evaluation to repeatedly re-assess their interim goals. Progress invariably takes several years to achieve the final goal: an autonomous self-governing, self-financed, cardiac programme capable of providing care for children with complex CHD. This outcome is consistent with redundancy for the visiting trips model at the site, although fraternal, professional, and academic links will invariably remain for many years.