Circulation. 2007;116:1876-1878
doi: 10.1161/CIRCULATIONAHA.107.726265
(Circulation. 2007;116:1876-1878.)
© 2007 American Heart Association, Inc.
Establishing Pediatric Cardiovascular Services in the Developing World
A Wake-Up Call
Magdi H. Yacoub, FRS
From the Chain of Hope UK, London, United Kingdom.
Correspondence to Sir Magdi Yacoub, FRS, Founder and President, Chain of Hope UK, South Parade, Chelsea, London, SW3 6NP, UK. E-mail m.yacoub{at}imperial.ac.uk
Key Words: Editorials • cardiomyopathy • epidemiology • heart defects, congenital • rheumatic heart disease
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Introduction
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There is increasing realization that the lack of facilities
for sustainable pediatric cardiac services in the developing
world results in a massive number of preventable deaths and
suffering. It is estimated that 15 million children die or are
crippled annually by potentially treatable or preventable cardiac
diseases. Ignored for a long time, this issue is starting to
be a cause of major concern to individuals, governments, and,
most importantly, cardiovascular specialists who can appreciate
the gravity of the problem and that the current situation is
unacceptable. What then can be done to alleviate the problem,
by whom, and how? In this issue of
Circulation, Larrazabal et
al describe the pioneering efforts of Castenada and his colleagues
in Guatemala.
1 This should act as a model and a source of inspiration
in this field. This editorial is an attempt to outline some
of the issues that relate to the problem, such as estimates
of its size, and explores potential, long-lasting solutions.
Article p 1882
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Size of the Problem
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The pediatric population constitutes a larger proportion of
the community in developing countries, with
40% of individuals
<18 years old in some countries. Children in developing countries
have a significantly higher incidence and prevalence of serious
cardiac diseases.
2 This is contributed to by a variety of factors
that include a lack of early correction of congenital cardiac
abnormalities that results in accumulation of a large number
of children with uncorrected anomalies who survive the neonatal
period. In addition, many of these children develop more rapid
deterioration in their clinical condition as a result of accelerated
forms of secondary changes in the heart and other organs, such
as pulmonary hypertension. Some of these changes could be the
result of genetic and/or environmental factors such as pollution
or infection. Furthermore, endemic "neglected" cardiac diseases
such as rheumatic heart disease,
3 Chagas disease,
4 and endomyocardial
fibrosis (EMF)
5 affect a very large number of children. It is
estimated that 15.6 million people (mostly children) suffer
from rheumatic heart disease worldwide,
3 and that 470 000 new
cases of rheumatic fever and 233 000 deaths caused by rheumatic
fever or rheumatic heart disease occur each year.
5 In addition,
the World Health Organization (WHO) estimated that 16 to 18
million people are currently infected with Chagas disease, with
90 million individuals at risk of infection.
6 The disease has
been classified as one of the most neglected diseases in the
world.
7 Recent studies of EMF in endemic areas of Mozambique
have shown a prevalence of 18% of the population, and again
children are predominantly affected (A.O. Mocumbi, MD, unpublished
data, 2007).
In industrialized countries, the need to create and fund pediatric units is related to national need. A panel convened by the WHO to advise about optimal resources for pediatric cardiac services concluded that a center able to perform 300 to 500 pediatric operations annually is needed in developed countries for populations of 2 million people. No accurate statistics are available about the need for pediatric services in the developing world. This number, however, is likely to be much greater than that required in developed countries—probably on the order of 1 center per million people. The sobering fact, however, is that many countries with populations between 15 and 70 million people are without a single specialized pediatric cardiac center able to offer modern preventive and therapeutic procedures.
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Major Players and Stakeholders
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The creation of high-quality, sustainable centers requires intensive
coordinated efforts by several groups who need to be involved
from the beginning. Cardiovascular specialists can and should
play a major part throughout all the stages. Professionals can
work most effectively through establishment of nongovernmental
organizations (NGOs) dedicated to this cause and the involvement
of all parts of the specialty, which include administration,
nursing, anesthesia, and other areas of expertise from the community
such as lawyers, bankers, and business people. The NGOs can
work closely with other similar organizations as well as national
and international bodies such as the WHO, World Heart Federation,
World Bank, United Nations, Millennium Fund, PVRI (Pulmonary
Vascular Research Institute), and others. In the country where
the project is envisioned, the first step is to establish connections
with local professionals, opinion leaders, universities, and
the government as well as insurers if they exist. Initially
this could be in the form of enabling projects and later as
full partners.
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Enabling Projects
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It is important to highlight the pressing need, explore the
local scene, and heighten awareness. This can be done through
"enabling projects," which can consist of establishing contact
between the NGOs and the local professionals with the explicit
aim to establish and/or strengthen diagnostic units run by local
colleagues who can act as correspondents and a nucleus for the
future sustainable center while establishing contact with the
major players outlined above. Transportation of children for
treatment in the donor countries, coupled with "missions" to
existing nonspecialist hospitals can act as enabling projects
and help bring the problems into focus while the definitive
answer of the creation of a sustainable unit is planned. Apart
from their humanitarian value, the missions should concentrate
on training of professionals, identification of potential candidates
for further training, and exploration of the possibilities regarding
the ultimate sustainable centers.
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Building Infrastructure
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The infrastructure needed includes buildings, equipment, and
most importantly human resource. The buildings can be modeled
on existing facilities in developed countries but adapted to
local culture, environment, and needs. The equipment should
include state of the art tools to offer services at the highest
level.
Buildup of human resources can be a lengthy and difficult process and requires a coordinated effort through the establishment of a board for higher training in the required subspecialties. The board can act in collaboration with the stakeholders to recruit, train, and accredit individuals identified for their suitability for further training, which can be performed mainly locally through systems of missions and mentoring supplemented by funding scholarships to specific institutions for specific reasons. Continuing education programs coupled with audits of individual performances should be an integral part of the training programs. The value of the establishment of appropriate management structures for the evolving centers cannot be overemphasized.
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Sustainability
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The ultimate fate and impact of the center depends almost entirely
on sustainability, which therefore must constitute a major part
of the initial and ongoing planning. One of the most important
points to consider is allocation of sufficient funds to run
the centers with contributions from all the partners, including
the local government, insurance companies, and capable members
of the community, regardless of how small those contributions
are initially. Ongoing negotiations that depend on the success
of the center can shift the responsibility (by design) to the
local sources. Another important source of funding for the pediatric
activity is from inclusion of a certain number of adult services,
which can help substantially with training of personnel. The
second important consideration to ensure sustainability is staff
retention. This can be helped by creation of good working conditions,
material compensation, and, importantly, inclusion of programs
for postgraduate training and facilities for research to enhance
professional and academic satisfaction.
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Role of Research
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One of the main components of the envisioned, sustainable pediatric
centers is research. Apart from provision of a means to audit
the clinical service and help to achieve excellence, research
provides important means to define the size of local problems,
such as neglected diseases, and helps the evolution of appropriate
solutions by the local researchers. The infrastructure and management
of research can be provided initially by the partners from the
developed country as exemplified in the article by Larrazabal
et al and the Mozambique EMF project. The research programs
should include audits of high-tech medicine, epidemiology, and,
importantly, molecular and cellular laboratories.
8–11 The latter can be devoted to research into the local neglected
diseases at fundamental levels and eventually into biotechnology,
12 which can generate income while the profile of both the center
and the morale of the researchers are markedly enhanced. In
addition, it could have a positive effect on other areas of
health care. One example of research into a neglected disease
is the establishment of a research center in Mozambique devoted
to the study of EMF at population, clinical, and molecular levels.
This has been enthusiastically received by both the researchers
and the population. The
Figure shows the research team, which
includes 1 of the principle investigators, and other members,
which include a research assistant, a community leader, and
2 helpers. Further intensive efforts into research and development
similar to those adopted in developed countries
13 could yield
considerable benefits
14,15 for all concerned with the generation
of new knowledge that could be applicable to diseases in the
developed world.
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Figure. A research team investigates the prevalence of EMF in an endemic area in Mozambique. A, Carrying equipment to the research site. B, Investigating children in their own home in rural endemic areas of Mozambique.
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Conclusions and Future Directions
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Establishment of specialized pediatric cardiac centers is evolving
as an achievable priority target. The aim is to establish a
network of centers of excellence that include research and contribute
both locally and globally. The success of these projects depends
on collaborative efforts by all concerned. The envisioned results
fully justify the effort.
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Acknowledgments
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Disclosures
None.
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Footnotes
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The opinions expressed in this article are not necessarily those
of the editors or of the American Heart Association.
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References
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E. Z. Soliman
Letter by Soliman Regarding Article, "Improvement in Congenital Heart Surgery in a Developing Country: The Guatemalan Experience"
Circulation,
July 29, 2008;
118(5):
e97 - e97.
[Full Text]
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Top
Introduction
Size of the Problem