Congenital Heart Disease in Mexico

Abstract

Consistent with the mission of the World Society for Pediatric and Congenital Heart Surgery to promote health care for children with congenital heart disease all around the world, a Mexican Association of Specialists in Congenital Heart Disease (abbreviated in Spanish as AMECC) was created in Mexico in 2008. Our efforts were coordinated with those of the National Health Secretary with the objective being implementation of a national plan for regionalization of care for patients with congenital heart disease. To improve our knowledge related to technologic and human resources for management of congenital heart disease, we developed a national survey. Finally, a national database was created for collecting all Mexican centers’ information related to congenital heart disease care in order to quantify the advances related to the proposed plans. The database utilized international consensus nomenclature. The aim of this article is to show the sequence of our actions in relation to direct accomplishments and the current status of congenital heart disease care in Mexico. This article emphasizes the main aspects of these actions: regionalization project implementation, national survey results, and cardiovascular pediatric surgical database creation. Knowledge of outcomes related to successful actions would be useful for those countries that face similar challenges and may lead them to consider adoption of similar measures with the respective adjustments to their own reality.

Keywords

congenital heart disease congenital heart surgery database health policy

The World Society for Pediatric and Congenital Heart Surgery (WSPCHS) was created in 2007 to promote health care for children with congenital heart disease all around the world. Part of the strategy to reach such a challenging goal was to create a series of databases for improving our current knowledge in relation to medical and surgical treatment of patients with congenital heart disease in various parts of the world. Efforts in Mexico were concentrated on the development of a national survey to improve our knowledge related to technologic and human resources for congenital heart disease care. We also implemented a regionalization project that became the major platform for our actions. Finally, a national database was created, utilizing international consensus nomenclature for collecting from all Mexican centers comprehensive information related to congenital heart disease care in order to quantify the advances related to our initiatives.^1

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The aim of this article is to show the sequence of our undertaken actions and their impact on the current status of congenital heart disease care in Mexico. Knowledge of outcomes related to successful actions would be useful for those countries that face similar challenges, and may lead them to consider their adoption with the respective adjustments to their own reality.

National Survey

Goals of survey. We developed a national survey to improve our knowledge related to technologic and human resources for congenital heart disease care.

Survey tool and methods. Based upon previous experiences in Spain and elsewhere, we adopted a registry model in order to collect reliable data related to resources and clinical practice in cardiac surgery and catheter interventions⁶ and developed a survey instrument that was finalized in 2009.This effort was supported by a collegiate group of the Health Institute and Highly Specialized Centers National Coordination, with support of the Health Secretary. This national survey was sent in 2010 to the directors of Mexican cardiac health centers in order to obtain their current statistical data (as of 2009). The first part of the survey was concentrated on information about human resources (pediatric cardiologists, cardiac surgeons, and residents), material resources (radiology, echocardiography, electrocardiography, electrophysiological, and hemodynamic catheterization lab), and infrastructure resources (hospital beds). In a second part of the survey, we obtained information about the number of medical consults, diagnostic tests, and available therapeutic methods. All the information was collected in an electronic database.⁷

Survey results. This survey was answered by 22 hospitals all around Mexico, including highly specialized and national referral centers as well as some of the regional hospitals with lesser volumes of patients. We found that human resources of the participant centers included 82 pediatric cardiologists and 51 cardiovascular surgeons, with a 1.6:1 relation. Number of operations in national referral centers ranged from 70 to 690 per year. In 2009, there were 38 residents in pediatric cardiology and 7 in cardiovascular surgery. A total of 57,229 outpatients were seen in 2009 from whom 32% were first-time encounters. In all, 7,166 patients were hospitalized, from whom 50% were operated surgically and 50% received a catheterization procedure. A total of 3,565 catheterization procedures were performed in the surveyed centers from which 1,543 (30%) were therapeutic. A total of 3,601 operations were performed; 65% with the use of cardiopulmonary bypass. Global therapeutic procedures in congenital heart disease were 5,144; 70% surgical procedures and 30% therapeutic catheterization procedures.⁸

Analysis of survey response data showed a clear centralization of the current available technologic and human resources for congenital heart disease in three states of the country, where almost all national therapeutic procedures are performed. This fact justifies a regionalization project, one aim of which is decentralization (or regionalization) of resources to increase access to pediatric cardiovascular health care in Mexico. Surgical treatment performed in national referral centers accounted for 70% of all cases, while regional hospitals accounted for 30%. And for interventional catheterization procedures, the corresponding figures were 83% and 17%, respectively. As already mentioned, operations performed in the 22 surveyed centers were 3,565, and it has been estimated that there were 400 operations performed in the rest of the health centers of the country, which leads to an estimate that the total number of operations performed in Mexico in 2009 was approximately 4,000. If we add interventional therapeutic procedures, this number rises to 5,124, and thus a mean of 52 therapeutic procedures per million inhabitants. In European countries, the corresponding figure for surgical operations is 62 per million inhabitants. With regard to human resources we observed that there is a lack of cardiovascular surgeons dedicated to congenital heart disease. Solution for this difficult problem requires time and leads us to strive to reach our ideal goal in a mid-term period. The academic standard goals required for professional training in pediatric cardiovascular disease are demanding and involve lengthy training, so the universe of human resources is reduced due to these reasons.

Plans. In the first phase of the project, in consultation with the health secretary, we proceeded to fortify human resources of five of the highly specialized hospitals in the northern, central, and southern regions of our country. This strategy may help to reduce the great number of patients who are currently being attended at the national referral centers. In addition, there is a new hospital which will begin its activities in the metropolitan area of Mexico City. The goal of this new hospital with respect to congenital heart disease is to operate patients requiring operations in Risk Adjustment for Congenital Heart Surgery (RACHS-1) levels 1 and 2 (and selectively in patients requiring operations in level 3, such as pulmonary artery banding and systemic to pulmonary artery shunts). After a two-year period of experience, and following a strict external audit evaluation, they would be approved to perform more complex surgeries.^7
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Regionalization Project

Definition and goals of project. As mentioned previously, one of the first actions developed in Mexico was the implementation of a regionalization project. We defined regionalization as the rational use of resources with an emphasis in specialized health care, in order to improve the quality and access to care and to increase the number of attended patients.

Prevalence of congenital heart disease. Reliable information with respect to congenital heart disease prevalence and health care remained unknown until the last decade. Therefore, even in the recent past, speculation due to a lack of information remained a very real problem in many countries in Latin America (including Mexico).

It is now a well-established fact that congenital heart diseases are the most frequent malformations present at birth.¹⁰ ^,11 The precise prevalence of congenital heart disease in Mexico still remains unknown, and the only previously reported data related to the importance and repercussion of these pathologies showed that as of 1990, congenital heart disease represented the sixth place in frequency of cause of death for patients under one year of age. In 2002, congenital heart diseases were the fourth leading cause of death in this age group, and from 2005 occupied the second place. In children between one and four years old, from the ninth place in 1990, congenital heart disease represented the third leading cause of death and remained in this place since 2005 (Figure 1).

Based on the current reports of world data, we can assume that prevalence of congenital heart disease in Mexico must be a mean of 6 to 8 per 1,000 newborns. If we extrapolate this value to the estimated Mexican national birthrate (2,000,000 newborns per year), we can infer that there are 12,000 or 16,000 newborns with congenital heart disease per year in our country. On the other hand, it is important not only to know the total number of patients with congenital cardiopathies, but also the frequency of each type of congenital heart disease. In México, an analysis of 2,257 patients with congenital heart disease revealed that patent ductus arteriosus represented 20% of them. The altitude of Mexico City in relation to sea level probably explains the high incidence of this disease. In decreasing order of frequency, the other congenital heart diseases found were atrial septal defect (16.8%), ventricular septal defect (11%), tetralogy of Fallot (9.3%), pulmonary atresia with intact ventricular septum (9.3%), aortic coarctation (3.6%), pulmonary stenosis (3.6%), and total anomalous pulmonary venous connection (3%).^12

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Mortality. Currently, overall survival of newborns with congenital heart disease is reported to be over 85%. This reflects a mortality reduction of 39% related to congenital heart disease over the period between 1979 and 1997, from 2.5 to 1.5 patients per 100,000 habitants. All these studies show that improved access to appropriate health care is the best choice for diminishing mortality in patients with congenital heart disease.¹⁹

Correlation of mortality with surgical volume. Several studies evaluating the potential association between surgical volume and outcomes have shown that there is generally less mortality in centers that had a large volume of open heart surgical procedures performed. Other investigations have focused on the relation between individual surgeon case volume and hospital mortality. Despite the suggested association between a higher number of cardiac disease operations and lower observed rates of hospital mortality, this is not true in all instances because there are hospitals and surgeons with a limited number of operations that report high rates of successful outcomes.^20
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Recommendations on type and number of cardiac surgical centers. The Congenital Heart Disease Committee of the European Association of Cardiothoracic Surgeons (EACTS) gave the following recommendations for health centers that perform cardiac operations in Europe: (1) the minimum number of patients operated per year must be 250; (2) each surgeon must perform a minimum of 3 operations per week and 126 per year; and (3) health centers with a low volume of operated patients (≤250 per year) could be considered functional if their outcomes are similar to the experienced higher volume centers.²³ Following the EACTS recommendations, there should be one cardiovascular surgical center per four million inhabitants. This would imply that Mexico, with a 103 million population, would require 25 cardiovascular surgical centers for congenital heart disease. In Europe, surgical procedures for congenital heart disease per million inhabitants are 62, which extrapolated to our country corresponds to 6,386 operations per year that should ideally be performed in 25 specialized centers according to EACTS recommendations.²⁴ Based on these criteria, to provide adequate access to care and to achieve successful outcomes in congenital heart disease, we need 21 to 25 specialized cardiovascular surgical centers in Mexico.⁶ Currently, we have 10 specialized centers for congenital heart disease health care 8 of them are in Mexico City, 1 in Monterrey, and 1 in Guadalajara (Figure 2). Although congenital heart operations are performed in other states of the country, including some in private practice, the annual number of procedures does not reach the minimum recommended standard volume per hospital and per surgeon, respectively.

Specific goals for Mexico. Our goal in a first phase is to fortify 11 specialized hospitals all around the country as a first step toward eventually reaching a minimum of 21 cardiovascular surgical centers (Figure 3). In considering the locations of these centers we must rely on some of these factors: (1) identification of existing health centers which have good infrastructure that may adapt in a short time to human and technologic fortification; (2) identification of states that have high birthrates or high mortality rates due to congenital heart disease; and (3) acknowledgment of the difficulty in transferring patients due to several causes, including orographic, socioeconomic, and cultural factors.

Considering that 50% of all congenital heart disease in Mexico is represented by patent ductus arteriosus, atrial septal defects, and ventricular septal defects, we have proposed that in a first phase of the regionalization project these common and prevalent pathologies can be treated in highly specialized centers or pediatric hospitals within the states and near to the patients’ home, which may reduce familial and societal costs, and may relieve the case burden of some of the current national referral centers, with the goal to achieve standard outcomes according to RACHS-1 and Aristotle risk scales. Ideally in an initial phase, these regional centers may require human resource support from the more experienced centers until they reach appropriate surgical outcomes in terms of morbidity and mortality. Later, in addition to the three most frequent congenital heart anomalies, regional centers may also be able to treat simple aortic coarctation, perform systemic to pulmonary artery shunts, and perform repair of tetralogy of Fallot and of pulmonary atresia with confluent pulmonary arteries, which are common pathologies in our country. Addressing these common forms of congenital heart disease would ultimately lead to achievement of 70% to 75% of coverage of all patients with congenital heart diseases. The rest of the congenital heart disease spectrum may be treated by the 10 most experienced centers of the country. In a second phase of the regionalization project, the highly specialized cardiovascular centers may gradually be able to treat more complex congenital heart disease, including neonatal cardiovascular surgery, necessitating referral of only the most complex and highest risk cases, such as ashypoplastic left heart syndrome and related malformations, to the most experienced centers (Figure 4).

Based on population and economic resources in each of the Mexican states, we must proceed to regionalize cardiac health care and, using the currently available risk stratification tools, perform periodic evaluations in order to monitor and improve outcomes of the program. This should ultimately provide benefits for the population because of an increasing number of patients treated, and should improve cardiac health care quality by achieving optimal use of existing resources. The ultimate goal is to decrease mortality rates and improve the overall health of individuals born with congenital heart disease.

National Cardiovascular Surgical Database

Background. One of the greatest problems related to the development of pediatric cardiac surgery in Mexico was lack of information. Until a few years ago, we did not have information about the number, type of procedures performed in the country, complexity level, diagnosis, morbidity, mortality, and other valuable information data. Collection and compilation of the data are difficult and tend to be incomplete because of the heterogeneous nature of the institutions that report to the Health Secretary. Considering that medical associations must play an important role concerning these aspects, the Mexican Association of Specialists in Congenital Heart Disease (which in Spanish is abbreviated AMECC) created a National Database for Pediatric Congenital Cardiac Surgery (which in Spanish stands for RENACCAPE). This database can be accessed at any place by means of an Internet connection to the AMECC Web page (www.amecc.org.mx) with a username and password of the physician from any of the participant cardiac health centers.

Until the last decade, there was a lack of reliable information available related to epidemiology of congenital heart disease as well as surgical procedures. A fundamental strategy to deal with this problem was the creation of a series of databases in order to improve our current knowledge of cardiac health care for congenital cardiopathies in the world. Therefore, several countries and regions have developed a series of databases with an increasing tendency to be fed by more participant cardiac health centers. In 2010, the WSPCHS proposed the eventual pooling of data from international databases that were already at various stages of establishment in North America, Europe, and Asia as well as the development of regional international databases in other parts of the world using the same nomenclature and fundamental fields and data specifications as the established databases.⁷ Although the information provided does not reflect 100% of the reality in those continents, it gives us an objective idea that allows us to infer valid statistical data for a situational analysis.

Following this important world tendency, in México the AMECC was created as an association affiliated to the WSPCHS. One of the aims of this association was to develop a national congenital heart surgical database in order to properly improve our current Mexican knowledge of reality in congenital heart disease and provide information to drive the development of solutions for the problems identified. In this project, we identified 11 national pediatric cardiovascular health care centers, which were categorized in 2 main levels, health care centers and referral centers. The last ones have a spectrum of economical, technological, and human resources appropriate for highly specialized health care for pediatric patients with congenital heart disease and are mainly centralized in Mexico City. We established the development of a cardiovascular surgical database as an important strategy in all the reference centers of the country.

Goals. The main goal of RENACCAPE is to know the type of cardiovascular disease as well as the surgical procedures applied for their treatment all around the country. Although it is an ambitious project, at the beginning, all participant centers may provide basic information on their patients and cardiovascular surgical procedures by means of an easy and friendly electronic tool. Once participant centers are already familiarized with this basic data compilation process, we will be able to gradually increase its complexity until we can have a solid national registry with the necessary information to reflect Mexican reality related to pediatric congenital cardiac surgery.

Description of database, method of data entry, and specific information collected. The ultimate goal of this ambitious project is to reach participation of all cardiovascular pediatric health centers of the country, for providing accurate information pertaining to their patients that may be auditable in order to asses credibility of the national statistics. Obviously, the benefits that this provides specifically for each institution are not only the identification of their problems and particular needs, but also the information in the form of objective data that can be shared with the health secretary to support new solutions for old problems. Therefore, RENACCAPE is a powerful tool whose significance will grow in proportion to the national efforts to participate in it. In addition, RENACCAPE was structured on the basis of internationally accepted nomenclature for diagnoses, procedures, and complications in cardiovascular surgery,^{8,9,25

–29} so it can also be used for multicenter studies with any world health center that follows the same data codification system.^{30

–42} Currently, there are 11 hospital centers registered in RENACCAPE, all of them providing information from the second 2011 semester on, and we propose to realize a national statistical analysis once we reach the first year of data compilation.

Barriers to accurate and complete data collection. There were two great problems we had to deal with when starting the national cardiovascular surgical database. The first one was the resistance of our health centers to give their patients’ information. We worked hard on persuasion and presentation of preliminary results in order to reinforce the utility of the database and convince more hospitals to participate in this project. The second challenge was to face up some technical difficulties of the electronic database platform as well as the speed at which information processing could be achieved. Fortunately, all these problems were gradually resolved as we demonstrated the virtues of the system.

Current participation and analyses planned. The main advantage is that at the same time it provides national information, the system can also allow us to process statistical results of each of the participant health centers in order to be used for their particular interests. This powerful tool, which was not previously available for any cardiovascular health centers in Mexico, has currently been adopted for 11 participant hospitals, and we believe that their benefits will promote the future incorporation of other institutions to this important national project.

Conclusion

A nationwide program to improve access to care and quality of care for children in Mexico with congenital heart disease has been organized around a strategy that is based upon the data obtained through a national survey. The main organizational elements include the development of a national congenital heart surgery database and a project to achieve regionalization of care based on a two-tiered system of specialized health care centers and national referral centers and a data-driven approach to optimizing resource utilization and matching of case complexity with human and technological resources.

Footnotes

Presented at the Joint Meeting of the World Society for Pediatric and Congenital Heart Surgery and Sociedad Latina de Cardiología y Cirurgía Cardiovascular Pediátrica, Lima, Perú; March 17-21, 2012.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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