Fourteen Years of Humanitarian Pediatric Cardiac Assistance: The International Children`s Heart Foundation

Medical and surgical services for children with congenital and acquired heart disease in most industrialized countries are easily available and all-inclusive, regardless of the cost. In many parts of the world, nevertheless, children with similar types of cardiac disease continue to be unable to achieve entrée to adequate diagnosis and care.¹ Efforts to supply greater access to appropriate care for these children range from pro bono long-term commitments to entire institutional programs.^2,3 In 1993, we established a program to make available pediatric cardiovascular services to children in developing countries. This report details our initial 14-year experience. Methods Acquisition of data and statistical methods. We reviewed all the records of the International Children s Heart Foundation database and patient databases at host sites for numbers of patients and their demographics, the types of operation, and the results. The combined data sets make up the substance of this report. All data are expressed as the mean plus or minus standard deviation. Comparisons of variables were made using the Chi-squared and Student s t tests. Differences were considered significant when P was less than 0.05. Recruitment of the volunteer team. Team members were recruited by direct solicitation by one of the authors, prior team members, or via the volunteer page of the Foundation s Web site. All volunteers provided curriculums, appropriate licenses, diplomas, and references. Team acquisition and organization was regularly started three months prior to a planned mission. Assessment and determination of sites. In order to evaluate the capabilities of institutions requesting assistance, a questionnaire was given asking information with regard to hospital infrastructure, hardware, disposables, personnel and the current condition of the pediatric cardiac service. The decision to arrange a mission was based upon information received in the questionnaire and our ability to acquire funds to cover the expenses of the team. Determination of patients. After we received a requested list of surgical candidates, along with any pertinent cardiac studies, patients were prioritized based upon the data provided. The priority list was then returned to the site for consideration and confirmation. Patient database. Data on each surgical patient was recorded in a central database. Surgical procedures were coded according to the European Congenital Heart Surgery Database, and all operations were assigned a categorization for risk using the classification system described by the Pediatric Cardiac Care Consortium.⁴Finances and logistics. The money and materials needed to carry out all essential care were shared between the Foundation, which had solicited contributions, the host institution, and/or local governmental agencies. In addition, the host institution provided nursing, physician, and support staff to supplement the volunteers. Expenses for travel, housing, food, visas and local transportation for the team were supported by the inviting institutions, local governmental agencies, or the Foundation. The worth of products donated for a given mission was derived from either wholesale price charts for new materials, or resale value charts for refurbished equipment. The value of services donated by the personnel was derived from formulas used by the American International Health Alliance, working in concert with the United States Agency for International Development. Physicians and biomedical engineers were assigned a value of $1,275 (US) per day, whereas nurses and technicians were assigned a value of $675 per day. Results Trips and sites visited. Between April 1993 and March 2007, we made 140 trips to 29 sites in 19 countries. We made 44 trips to Central Europe, 26 to South America, 21 to Central America and the Caribbean, 13 to China, 12 to Central/South Asia, 16 to Eastern Europe, 1 to the Middle East, and 7 to Africa. For the sake of comparison, we divided the total experience into two seven-year periods. The number of trips and trips per year were significantly greater in the second 7 years (95 vs. 44, and 13.7 ± 1.6 vs. 6.3 ± 0.9, respectively; p Children undergoing surgery. Over the entire period, we carried out 2,780 primary operations. The number of procedures performed yearly increased over the two intervals, from 117 ± 32 to 273 ± 42 (p Participation of volunteers. There were 1,073 volunteers recruited from the United States of America, United Kingdom, Belgium, Australia, Denmark, Spain, Croatia, Peru, Chile, Costa Rica, Germany, Serbia, Turkey, Japan and Switzerland. In all, 359 physicians volunteered, including cardiac surgeons, pediatric cardiologists, cardiac anesthesiologists, and pediatric intensivists. We had 566 nursing volunteers who staffed the intensive care unit, the operating room, and the catheterization laboratory, along with 148 technicians, including perfusionists, respiratory therapists, echocardiographic and cath lab technicians, and bioengineers. Expenses. Yearly expenditures for the second seven-year period were significantly greater than the first seven-year period ($482,304 ± 53,454 vs. $277,462 ± 105,517; p Medical education. A total of 338 professionals received education, made up of 199 nurses, 37 surgeons, 28 anesthesiologists, 28 cardiologists, 17 intensivists, and 29 perfusionists. Training included on-site practical experience, didactics, and programmatic experience in designated sites abroad. Donated materials and services. The total amount of donated materials and services has exceeded $16,000,000. Comparison of the value of donated materials and services between the first and second 7 years revealed no significant differences (donated goods $800,000 ± 467,761 vs. $595,750 ± 350,113; services $529,500 ± 72,904 vs. $625,853 ± 136,002). Classification of risk and rates of survival. Table 1 shows the total number of cases performed in each RACHS category. The greatest percentage of patients having the least risk was in the Caribbean and Central American region. The only sites where patients having the greatest risk underwent surgery were located in South America and Central Europe, at one site in each region. A comparison of early survival between the first and second periods revealed significantly improved survival in the terms of the classifications in the first system of Risk Adjustment for Congenital Heart Surgery (RACHS-1) (Table 2). Thus, for those in the second, third, and fourth RACHS category, survival improved significantly (92.8% to 96.5%, p Discussion The ability to obtain adequate cardiac care for most of the population of the world is now well established,² and impediments to delivery of cardiovascular services in underserved areas are well described.^5-7 The opportunity to alleviate this situation lies clearly within the resources of the industrialized world. At present, there are many organizations in the United States and Europe who have approached this problem.⁸ The capability to provide traveling teams of pediatric cardiovascular specialists is dependent upon the success of recruiting an adequate number of qualified volunteers who can work together to achieve acceptable results for each trip.³ Our first trip to any site usually required the recruitment of a full complement of individuals in all specialties. After a number of return trips to a site, if it appeared that the local medical caregivers could assume the roles of our team members, we reduced the number of the volunteers. This progression was espoused by Kalangos et al.⁶ Important to the overall success of a mission is the skill of the volunteers. Our volunteers originate from a number of centers in the United States, United Kingdom, Europe and South America. This mix provided our partner sites with a well-rounded approach to the care of children with cardiovascular disease. Our physicians, nurses, and perfusionists worked side by side with their local colleagues in all areas. Depending on the appraisal made by each team member of the understanding and aptitude of their local counterparts, they would steadily allow them to assume a more responsible role in the care of the children. Moreover, our staff provided didactic sessions on specific issues in the care of children with cardiovascular disease. The challenges of starting or upgrading a standing program in pediatric cardiac surgery vary from country to country. The financial situation in most of the underserved regions of the world have resulted in material deficits that often cannot be surmounted by the local caregivers, whether they are trying to generate a program or simply improve one.^8,9 The need for hardware and disposables is evident in every country to which we have traveled over the years.^10,11 In the first seven years of our program, the Foundation provided not only medicines and disposable materials during our trips, but also a considerable amount of hardware. Although our results do not reflect a significant difference between the value of donated materials during the first and second seven-year periods, they may be misleading. In the first seven years, our donations of both hardware and disposables were usually far in excess of what our initial trip would require. Therefore, subsequent visits required no significant amounts of hardware and a smaller amount of disposables that would fulfill the needs of the patients listed for surgery. The role of bioengineers in this practice cannot be overemphasized. Early in our experience, we had donated equipment repaired by volunteer bioengineers in the United States, but did not include these individuals as part of the traveling team. Over the last four years, we have included bioengineers on our travel team whenever we were visiting a site that required significant donations of hardware and/or had displayed a low level of capability to maintain equipment. This change in strategy has prevented many misadventures and has given us the opportunity to maintain our donated hardware. The published mortality for pediatric cardiology surgical procedures is widely available in literature. Moreover, we are aware that there is debate over the underrepresentation of published data that compares results from center to center.^12,13 Therefore, we have selected the method pioneered by the team representing the Pediatric Cardiac Care Consortium⁴ as a way of stratifying the risk in our surgical caseload. The results reported herein show improvement in mortality between the two different time periods studied. In the second period of seven years, the results are not too dissimilar from those reported by Jenkins et al.^4,14 Any comparison of rates of mortality or the probability of survival between the top centers in the United States and Europe with those of a humanitarian mission program is difficult at best.¹⁵ Little, if any, of the programs we have visited over the years come near to the standards, the concept of team management, or the results that are widely available at centers throughout the industrialized world.¹⁶Summary The requirement for clinical services and education in pediatric cardiovascular disease throughout the underserved areas of the world is critical. The sheer size of the problem requires a concentrated effort by those of us in the industrialized world if we are to offer satisfactory care for the children of the world with cardiac disease. A multi-faceted approach that provides for clinical services, necessary hardware and disposables, and education, as well as a long-term commitment to certain regional sites, is important for the overall success of the program. Acknowledgement We acknowledge the support received from the Paul Nemir Jr., MD Endowed Professorship and Endowment Fund, University of Tennessee Health Sciences Center, and the International Children s Heart Foundation. For more information about The International Children's Heart Foundation, please visit: www.babyhearts.com