12 Sep CHD In Developing Countries
Congenital Heart Disease and Pediatric Cardiac Surgery in Developing Countries: Two Sides of a Coin
In September 2000, 147 heads of state met at the United Nations (UN) headquarters to establish a course of action on the eight Millennium Development Goals (MDGs) addressing what the World Health Organization (WHO) labels as “the most pressing problems of humanity.” (1) The MDGs span a wide range of topics, including poverty, infectious disease, education and gender equality. The resulting Millennium Declaration has led to unprecedented commitments and partnerships. Although, in the context of so many pressing and competing issues, International Surgical Care was not one of the eight MDGs, it is now recognized as an important aspect of health delivery in low and middle income countries.
Currently, however, there is a shortage of data on the burden of general surgical-related and specific cardiovascular diseases in Sub-Saharan Africa. This shortage results from inadequate or sound data information (or both), caused by a host of issues, including forms of governance, lack of or sparse data, issues of: data retrieval, limits of health care resources and commitment, insufficient health care workers, levels of education and public awareness, culture, security, and more. Most international funding agencies working in these regions have devoted health funding to investigating the major determinants of acute aspects of endemic infectious diseases as well as child and maternal mortality. There remains a need to address surgical needs, as African children have high prevalence of rheumatic heart disease, cardiomyopathy and untreated congenital heart disease. (2)
Epidemiology of Sub-Sahara Africa Cardiac Heart Disease
The exact epidemiology of cardiovascular diseases in sub-Saharan Africa is unclear. Because of the dynamic relationship between the reductions in maternal and under-five mortality achieved through implementation of the MDGs and a projected increase in the proportion of Africans as a percentage of world population over the next years the number of children and adults affected with cardiac heart disease (CHD) in Africa may be vastly underestimated and has probably increased over the last fifteen years, reflecting the survival of many infants, including ones born with and living with congenital heart disease, who would likely not previously have survived the neonatal period. One reason for possible underestimation is that conditions of low capacity for early correction of congenital cardiac abnormalities are predictive of the accumulation of a large number of children with uncorrected anomalies. Another is that it is almost impossible to estimate the Disability-Adjusted Life Years (DALY) of the burden of CHD, as data from Africa is flawed — so much so that even DALY used as a measurement of the burden of the disease has been controversial.(3) The confluence of awareness of CHD, availability of funding and ongoing health care worker education with the advent of new technology (such as the use of portable echocardiography for screening and managing cardiovascular disease), has created the opportunity for African health care workers to tackle childhood cardiovascular disease.(4,5)
The birth prevalence of CHD is thought to be relatively similar the world over, with variations between regions and countries due to genetic, environmental and epigenetic differences. (6,7,8) The estimate of ∼8 per 1000 live births is generally accepted as the most reliable, although a recent systematic review emphasized potential significant differences within this average, particularly among lowest-income populations. (9) In the main, suggestions of imprecision reflect the paucity of readily available estimates and the urgent need for robust data to support DALY and burden of disease calculations in Africa. (3) To calculate an order of magnitude even without calculating for possible significant differences above ~8 per 1000, the annual approximately 40 million births in Sub-Saharan Africa at the accepted estimate of ~8 cases of CHD per 1000 yields 320,000 infants in Sub-Saharan Africa with a potentially threatening heart problem. (10)
The numbers could well be higher. Several recent publications have profiled the epidemiology of CHD in children and adults in Africa, emphasizing the burden of CHD among patients referred with suspected heart disease.(11,12) Recent data from Sudan reports a dramatically-higher prevalence of CHD among children and adults with suspected cardiac pathologies.(11) A 4-year study from Cameroon reports that 13.1% of patients with suspected cardiac pathologies aged between 2 months and 41 years (mean age 10±9 years) were diagnosed with CHD.(9) Data from northern Nigeria reported similar issues.(13)
Unmet Emerging Needs in Sub-Sahara Africa for CHD
While CHD bears a poor prognosis, the huge advance in diagnostic options and surgical and interventional management of complex CHD made in the developed world, have not been replicated in Africa. (14,15,16) Sub-Saharan Africa has over 40 million births per year (a number increasing annually.) Considering the commonly held (and likely conservative) incidence of ~8 cases of CHD per 1000 live births, over 320,000 of these infants have some forms of CHD. On a standard measure, around 25 to 30% (>90,000 infants) will need surgery. (19) These numbers do not include the existing population of mostly undiagnosed and unattended children living with CHD. Failure to provide timely cardiac care to these patients is the result of several interrelated factors: most pediatric services are oriented to diagnosing and managing endemic infectious diseases; there are few facilities for pediatric cardiac; and there is a shortage of trained personnel capable of diagnosing CHD. As such, diagnosis usually comes late, in the presence of heart failure, pulmonary hypertension and severe Polycythaemia. (10) Further pressures on childhood cardiac care are endemic “neglected” cardiac diseases, such as rheumatic heart disease, Chagas disease, and Endomyocardial Fibrosis (EMF), all of which affect a very large number of children, possibly over 3 million. (10) The consequences of this gap between various demands and the ability to meet them are multiple: regional hospitals, already facing enormous infrastructural and human resource limitations, get overloaded; patients and families face multiple delays in obtaining surgical services; and additional costs (such as that of long-distance transportation to tertiary facilities and loss of income due to days off work) create additional barriers to access. As a result of these issues, many patients do not receive the care they need, leading to complications of untreated ailments (such as death or chronic disability, loss of productivity, dependency on family, and economic and social burdens.) Yet, a number of important centres and collaborations have evolved over the past decade to address these disparities, and renewed attention has been focused on early detection and management of CHD, while also encouraging innovative approaches and training centres of excellence. (12,14,15,16,17)
Controversy Over the Millenium Goals and Policies
WHO Policies align interests across various sectors to serve people’s basic needs to live healthy, productive lives, regardless of who they are or where they live. It is a commendable goal, if not somewhat of a dream. The global disease burden has continued to shift from communicable to non-communicable diseases and from premature death to years lived with disability. Despite significant strides towards achieving the Millenium Goals, progress on a global commitment to sustainable development has been uneven and difficult to measure, because of incomplete support from governments, communities and stakeholders. In opposition to the global norm, in Sub-Saharan Africa, many communicable, maternal, neonatal, and nutritional disorders remain the dominant causes of disease burden. Nonetheless, recognition of the importance of surgical care as an integral part of non-communicable diseases is growing. The first meeting of the Bellagio Essential Surgery Group in Bellagio, Italy, in June 2007, for example, drew attention to the large proportion of disease burden in sub-Saharan Africa due to surgical conditions. (18) On this foundation, leaders in surgery and public health from eleven African countries, Europe and the United States met in Kampala from July 22-24, 2008, to develop collaborative strategies to increase access to surgical services across sub-Saharan Africa. (18)
Previously national and international forums concluded that with a large Sub-Saharan population of at-risk adults and children in a context of limited world resources, communicable diseases should be addressed as a priority. Understandably, clean water, malaria and HIV control, maternal and infant mortality, and tuberculosis all require world attention and the bulk of available resources. Nonetheless, many non-communicable disease needs in Sub-Saharan Africa, including diagnosis and treatment of pediatric cardiac diseases, remain unmet.(14) North America studies generally recommend that a pediatric heart surgery program with the capability of performing 200-500 operations is required for each 5-10 million people area.(20,21,22,23) That cardiac care in Sub-Saharan Africa in no way even approaches this capacity should inform decisions but not stop the ongoing provision of pediatric cardiac care in Sub-Sahara Africa.
Innovative Options to Increase Access to Pediatric Cardiac Care:
In the face of the almost unsurmountable pediatric cardiac care needs of Sub-Saharan Africa, one has to remain grounded, realistic, fully aware of all the issues surrounding the delivery of health care in the region, and refrain from considering policies with a small return within politically and financially important standard WHO 5-10 year time frames.
Assessing the regions limitations, I have determined nine common goals which are unrealistic from a practical health standpoint:
- stop war and atrocities;
- move to reliable governance;
- reverse uncooperative governments and poor commitment;
- diminish or abolish corruption;
- increase countries’ percentage of GDP committed to health care;
- build thousands of tertiary care hospitals;
- increase the number of medical schools;
- train thousands of doctors; and operate on thousands of CHD children.
As harsh as it sounds to label these goals as unrealistic, the issues they address have existed in the entire period of the implementation of the 2000 Millenium Goals and continue to diminish the efforts of WHO and other agencies. More realistic goals leading to an immediate improvement in health outcomes would include:
- Data: Conduct reliable research to acquire adequate data reflecting countries’ burden of disease, epidemiology and resources, which can be sued to reliably assess the specific needs of each country. To achieve this goal, international guidelines need to be closely evaluated, then tailored to each setting according to local relevance; changes should be preceded by needs assessments; interventions should build on existing emergency care systems; and efforts to obtain commitment from government and institutional policy makers should continue, despite difficulty and the unreliability of some governments. Even small success is a move forward.
- Funding and Resources: Use a P3 model (in which governments, private industries or philanthropists, and NGOs work together) to quickly maximize investment in infrastructure and equipment and to build rural clinics and secondary care hospitals. To ensure success of this goal, allow participating NGOs to take the lead on such projects, reinforce the support of pharmaceutical and medical equipment companies; and include pediatric services within the context of adult services, to share the cost of resources, personnel and education with adult paying patients without duplicating costs or services.
- Surgical Competencies: Although it is difficult to estimate the actual numbers of surgical staff needed in Sub-Saharan Africa and thus the level of unmet need for a surgical work force, current training strategies should be redefined to develop a work force with cardiac surgical skills. Funding streams for this training can be developed by encouraging existing medical and nursing schools to continue lobbying governments for funding to increase the number of medical and nursing positions and, where they are absent, by creating University Foundations as additional funding sources. The current surgical workforce shortage can be addressed through innovative approaches to rural needs, not based exclusively on North American standards; focusing training programs on developing local surgeons and health care workers to manage conditions geographically restricted to rural Africa; up-dating the training of existing staff; and updating medical curricula to match health care needs. Additional changes in training and delivery can be facilitated by combining specialist and non-specialist training and backing up local teams with specialists. The end goal should be to bring together people with complementary skills in sufficient numbers (physicians with surgical skills, anesthetic technicians, specialized nurses, support personnel, lab technicians, etc.) to be able to provide appropriate surgical care. The length and scope of surgical training varies across countries, from 8-9 years (including basic training before surgical specialization.) As this period may be too long to address current workforce shortages, coordination in training is required.I propose that: training centres liaise with administrations and university centres; surgical training programs as well as pediatric cardiac programs need not all be in one centre or even in one country but be developed in the most advanced countries to enhance existing programs, to which children from less advanced African countries can be sent; (21) and during a required redefinition of medical school curricula, modified training be introduced to current health care schools in medicine, nursing and medical technology to create, among others, medical assistant officers (MOAs) educated to care for many communicable and non-communicable diseases, assist at births, provide basic trauma and wound care, wound care, and so on. Since 2005, Niger has provided a model: a 12-month-long surgical training called “Capacity in District Care and Surgery.” Graduates work in rural areas as the first line of care for a rural population that had much less help before this program. A related program in Malawi calls such health workers “clinical officers,” but lacks incentives to keep them working in rural areas. Other countries are training “mid-level health professionals.” Whatever terminology we use, these health care workers are trained by Ministries of Health, not medical schools, with short (2- to 3-year-long) training programs. To their training could be added basic assessment of cardiac disease (such as recognition of cyanosis and cardiac failure) and the use of such tools as small portable echocardiography machines and pulse oximeters. Currently, these training programs lack the support and recognition of professional medical bodies and are resisted by the surgical community and universities under the argument that the population deserves fully-trained doctors and not second-rate health care workers. Ultimately, however, the goal is to provide the population with a level of health services for whatever maternal, communicable and non-communicable disease, trauma, and cardiac diseases and awareness currently undertreated in so many rural areas.
- CHD Care: Adapt methods of CHD diagnostic and surgical care to local life styles, needs and resources, allowing culturally appropriate choices between interventions to be integral to a choice of surgery, including between palliative versus curative, especially in view of vast differences in healthcare funding. Historically, such unique African challenges as malnutrition and poor follow-up have created a system favoring palliative procedures. However, on review the benefits of some definitive repair are obvious (23,24), although Western standards and their current surgical approach toward complete repair may not be the best choice for rural African children.
- Staff Retention: Ensure sustainability of staff retention efforts by offering appropriate incentives to retain skilled health care workers. The goal can be assisted by creating good working conditions, material compensation, and, importantly, inclusion of programs for postgraduate training and facilities for research to enhance professional and academic satisfaction. Although, the lack of appropriate remuneration is commonly considered the main reason for loss of skills from Africa, other important causes include: lack of team support to enable cardiac surgery; lack of equipment; political uncertainty; poor career prospects; little possibility for continued education; few options for career progression, including no additional salary support for acquiring additional skills and (in some countries) no clear professional status within the surgical community for general medical doctors who have undergone extra surgical training; pressure and stress from the disease burden; and, of vital importance, active recruitment by developed nations of the best African trainees. Recognizing these issues and making efforts to correct them would help retain staff.
- NGOs and Missions: Coordinate NGO missions with other goals. Currently, multiple NGO’s conduct missions in African countries in series, as many countries currently host short-term visits of skilled personnel. There are too many NGO’s to mention, but a marked lack of coordination between them, what they offer and which countries they provide services to is very real. Bringing foreign surgeons to operate in any country (the current NGO model) is a good alternative to developing local capacity, but also assists only a limited number of patients. Furthermore, because hospital conditions are frequently below standard, the results are not consistently satisfactory. Apart from their humanitarian value, the practice of NGO missions bringing complete surgical teams should concentrate on training professionals, identifying potential candidates for further training, and exploring the possibilities regarding ultimately sustainable centres. (25) Above all, many NGO’s currently do not practice sustainability and lack support for establishing training goals. (26) For example, a surgical team has visited Zambia from Uzbekistan annually for fourteen years, with no local infrastructure development. (27) Similarly, efforts from the developed world to coordinate NGO work need better partnership with Africans, to avoid duplicating efforts and wasting resources. Referring patients to Europe or USA is the worst option. It has high costs, benefits a small number of (usually wealthy) patients, and does not create human and organizational expertise for the country. It is an unsustainable option that fails to help countries develop programs to increase awareness, to teach the use of diagnostic tools and promote surgical pediatric care for Africa.
- Western Cardiac Societies: Coordinate European and Western Cardiac Societies’ efforts to meet the humanitarian component of their mandates, to develop stronger associations with Medical African societies, and to fund annual meetings (Pan-African and country-specific) to bring doctors together, foster teaching opportunities and reinforce scientific exchange.
Ultimately, the creation of high-quality, sustainable centres requires intensive, coordinated efforts, with many groups working in concert from the earliest stages. Cardiovascular specialists can and should play a major role throughout all the stages of development and implementation. Professionals can work most effectively by establishing nongovernmental organizations (NGOs) dedicated to this cause and being involved in all parts of the specialty, which include administration, nursing and anesthesia, and draw in such other areas of expertise as lawyers, bankers, business people and information specialists. The first step in any country where the project is envisioned should be to establish data collection; connections that will help local professionals, leaders, universities, the government and insurers (if they exist); and policies and decision-making to help African infants and children with CHD and other forms of cardiac disease. The resulting NGOs can then work closely with other similar organizations and medical societies as well as such national and international bodies as the WHO, the World Heart Federation, the World Bank, the United Nations and the Millennium Fund.
- JD Sachs, JW McArthur. “The Millennium Project: A Plan for Meeting the Millennium Development.” Lancet, 365 (2005), pp. 347-353
- Mocumbi AO, Ferreira MB. “Neglected Cardiovascular Diseases in Africa: Challenges and Opportunities.” J Am Coll Cardiol 2010; 55:680-7
- Anand Sudhir ,* Hanson Kara. “Disability-Adjusted Life Years: A Critical Review” Journal of Health Economics 16 (1997) 685-702
- Tantchou Tchoumi JC, Ambassa JC, Kingue S, et al. “Occurrence, Etiology and Challenges in the Management of Congestive Heart Failure in Sub-Saharan Africa: Experience of the Cardiac Centre in Shisong, Cameroon.” Pan Afr Med J 2011; 8:11.
- Damasceno A, Cotter G, Dzudie A, et al. “Heart failure in Sub-saharan Africa: Time for Action.” J Am Coll Cardiol 2007;50 :1688-93
- Hoffman JI, Kaplan S. “The Incidence of Congenital Heart Disease.” J Am Coll Cardiol 2002;39: 1890–900
- Van der Linde D, Konings EE, Slager MA, et al. “Birth Prevalence of Congenital Heart Disease Worldwide: A Systematic Review and Meta-analysis.” J Am Coll Cardiol 2011;58: 2241–7.
- Van der Horst RL. “The Pattern and Frequency of Congenital Heart Disease Among Blacks.” S Afr Med J. 1985;68(6):375–378.
- Ronsman C, Graham W. “Maternal Mortality: Who, When, Where, Why.” Lancet 368(9542):1189-2000, 30 Sept 2006
- Zühlke L, Mirabel M, Marijon E. “Congenital Heart Disease and Rheumatic Heart Disease in Africa: Recent Advances and Current Priorities.” Heart 2013;99: 1554-1561.
- Omokhodoin SI, Lagunju IA. “Prognostic Indices in Children Heart Failure.” West Afr J Med. 2005;24(4):325–328.
- Antunes MJ. “Current Status of Surgery for Congenital Heart Disease in Infancy.” S Afr Med J. 1985;67(10):359–362.
- Okoromah CA, Ekure EN, Ojo OO, Animasahun BA, Bastos MI. Structural Heart Disease in Children in Lagos: Profile, Problems and Prospects. Niger Postgrad Med J. 2008;15(2):82–8814.
- Mocumbi AO, Lameira E, Yaksh A, et al . “Challenges on the Management of Congenital Heart Disease in Developing Countries.” Int J Cardiol 2011;148: 285–8.
- Mocumbi AO. “The Challenges of Cardiac Surgery for African Children.” Cardiovasc J Afr 2012;23:165-
- Watkins DA, Omokhodion SI, Mayosi BM. “The History of the Pan-African Society of Cardiology (PASCAR): the First 30 Years, 1981–2011.” Cardiovasc J Afr 2011;22: 122–3.
- Buchanan E. Walter Sisulu. “Paediatric Cardiac Centre Opened by Nelson Mandela.” S Afr Med J. 2004; 94:14
- John Hewitson. “Children’s heart disease in Sub-Saharan Africa: Challenging the Burden of Disease.” SA Heart 2010; 7:18-29
- Davis JT, Allen HD, Powers JD, Cohen DM. “Population Requirements for Capitation Planning in Pediatric Cardiac Surgery.” Arch Pediatric Adolescent Med.1996; 150:257–9.
- Kumar RK. “Training Pediatric Heart Surgeons for the Future: A Global Challenge.” Ann Pediatric Cardio. 2015; 8:99–102.
- Raj M, Paul M, Sudhakar A, Varghese AA, Haridas AC, Kabali C, et al. “Micro-economic Impact of Congenital Heart Surgery: Results of a Prospective Study from a Limited-resource Setting.” PLoS One. 2015;10
- Yangni-Angate K. H. “Open Heart Surgery in Sub-Sahara Africa: Challenges and Promise.” Cardiovasc Diagn Ther. 2016 October; 6(Suppl 1): S1–S4.
- Hewitson J. “Children’s Heart Disease in Sub-Saharan Africa: Challenging the Burden of Disease.” SAHeart 2010; 7:18-29
- Lohfa BC, Emmanuel AA, Abantaga FC. “Challenges of Training and Delivery of Pediatric Surgical Services in Africa.” Pediatric Surgery Journal March 2010 Vol 45, Issue 3: 610-618
- Novick WM, Stidham GL, Karl TR, et al. “Are We Improving after 10 Years of Humanitarian Paediatric Cardiac Assistance?” Cardiol Young 2005;15: 379-384
- Unpublished Data: Survey by the Paediatric Cardiac Society of South Africa. 2006.