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Improving Survival of Children with Cancer Worldwide: the St. Jude International Outreach Program Approach Raul C. Ribeiro, MD Abstract The mission of the St. Jude International Outreach Program (IOP) is to improve the survival rate of children with cancer and other catastrophic diseases worldwide, through the sharing of knowledge, technology, and organizational skills. There are an estimated 160,000 newly diagnosed cases of childhood cancer worldwide each year, and cancer is emerging as a major cause of childhood death in the developing regions of Asia, South and Central America, northwest Africa, and the Middle East. Over the past 30 years improved therapy has dramatically increased survival rates for children with cancer, but still more than 70% of the world’s children with cancer lack access to modern treatment. Although sick children from around the world have traveled to our hospital in Memphis, Tennessee, since its inception, treating children in their own countries is more efficient and less disruptive for them and their families. In the context of St. Jude’s culture of sharing knowledge about the management of children with cancer, we now use modern technology to reach far more children than would ever be able to come to St. Jude Children’s Research Hospital. St. Jude strives to address the needs of those children in countries that lack sufficient resources and to help them manage their own burden of cases effectively. By sharing knowledge and technology with the local governments, health care providers, and the private sector in these countries, St. Jude is improving diagnoses and treatments to increase the survival rates of children all across the globe. In addition to training medical teams locally, St. Jude Children’s Research Hospital hosts many visiting fellows at our campus in Memphis. St. Jude helps partner medical institutions develop tailored evidence-based protocols for treating children with cancer and other catastrophic diseases. St. Jude physicians serve as mentors to physicians at our partner sites and consult on difficult cases. Nurses are trained on best practices in clinical care and pathologists on techniques for accurate diagnosis. We also partner with local fundraising foundations that support the medical programs. This model has proved to be highly effective in providing poor children in developing countries access to modern treatment and care. True to the commitment of St. Jude to sharing information with the worldwide medical community, in 2002 St. Jude launched Cure4Kids, a comprehensive online resource dedicated to supporting the care of children with cancer and other catastrophic diseases. Today Cure4Kids (www.Cure4Kids.org) has over 27,000 registered users in more than 175 countries. In 2006 St. Jude launched the Cancer Education for Children Program (Cure4Kids for Kids) that helps school children, their parents, and teachers understand the basic science and treatment of cancer. The IOP is ambitious, widely inclusive, and relentless in its pursuit of the dream of St. Jude’s founder Danny Thomas that “no child should die in the dawn of life.” No child, anywhere in the world. The Chain of Care of Pediatric Cancer In the United States, about 13,000 new cases of cancer are diagnosed per year in children and adolescents younger than 20 years old. Overall, 5-year survival of these patients is about 80%, and for certain cancer subtypes it has surpassed 90%. Importantly, virtually all children and adolescents with cancer have guaranteed access to optimal treatment as soon as the disease is diagnosed. Moreover, in the United States and many other developed countries, public policies sanction the rights of children with cancer to have access to adequate treatment. Finally, a large majority of children with cancer in the United States are managed in modern tertiary pediatric hospitals and participate in multi-institutional research trials. This combination of excellent patient care and research has ensured constant improvement in outcomes of pediatric cancer. As consequence of all these elements—a chain of childhood cancer care— the mortality rate for children and adolescents younger than 20 years of age is 2.8 per 100.000 in the United States, ranking 6th among all causes of mortality in this age group. In developing countries, the leading causes of death among children differ substantially from those in developed nations. Infectious diseases, including tuberculosis, malaria, measles, and AIDS, are usually ranked first, followed by pneumonia, diarrhea, and malnutrition (the diseases of poverty). Pediatric cancer is not listed as cause of death in these countries and often is omitted from the agenda of national and global health priorities. The main reason for this attitude is that even if effective pediatric cancer programs were available and drastically reduced pediatric cancer-related deaths, the overall rate of childhood mortality in these countries would not be perceptibly improved. Pediatric cancer does not become a noticeable cause of childhood mortality until the under-5 mortality rates are about or less than 30 per 1,000 children born alive. Understandably, the first public health priority of developing countries and of international agencies must be to eliminate the diseases of poverty. However, as progress is made toward reducing preventable illness and improving overall public health infrastructure, pediatric cancer becomes a more visible cause of death and is very difficult to hide. This impact is most felt in countries that have made significant progress toward eliminating the diseases of poverty but have yet to develop a comprehensive strategy to deal with pediatric cancer. In those countries, children usually are suspected to have cancer but the diagnosis is neither confirmed nor registered in public databases. Because the public investment in health is small and health insurance is not available to most families, the cost of even a standard course of therapy is beyond most people’s means. The net result is an unacceptably low overall survival rate and enormous suffering for children with cancer, their families, and communities in many low- and mid-income countries. Moreover, because the causes of death of these children are not properly registered, they are tallied as other causes, and hence are hidden from official health reports from these countries. The combined lack of registration and access to care distorts reality in that it appears pediatric cancer is rare and medically irrelevant in low- and mid-income countries. This culture of silence conspires to keep pediatric cancer outside of the spectrum of pediatric health needs in many low- and mid-income countries. Conversely, in high-income countries, public policy recognizes the right of children with cancer to have access to adequate treatment and registration. If parents or legal guardians refuse treatment of a child’s potentially curable malignancy, the child’s right to treatment can be enforced by law. This mechanism reflects a broad societal consensus that children should be protected from the idiosyncratic views of parents, legal guardians, or influential community groups, a viewpoint not shared by the vast majority of emerging or low- and mid-income countries. Hence, one of the main objectives of international pediatric hematology oncology is to increase the awareness of communities about pediatric cancer and to pressure governments of low- and mid-income countries to include pediatric cancer care in their health agendas. Approaches to Managing Pediatric Cancer in Low- and Mid-income Countries Strategies used to fight pediatric cancer are very different from those used to treat the diseases of poverty. Effective cancer treatment is complex and requires a multidisciplinary team, dedicated hospital facilities, clinical laboratories, blood banking, anticancer medications and antibiotics, outpatient infrastructure for close patient monitoring, medical and community alliance, and government support. Ideally, children with cancer are managed in pediatric cancer centers staffed by pediatric hematologists/oncologists, pediatric surgeons, urologists, pathologists, orthopedic surgeons, and radiation oncologists. These physicians and other health professionals, including oncology nurse practitioners, advanced practice oncology nurses, social workers, pharmacists, nutritionists, child life specialists, and others, comprise a multidisciplinary team necessary for the optimal care of children and adolescents with cancer. Because most of the world’s communities are not able to provide all these components, certain critical steps have to be in place to spark a potentially successful project. The creation of a pediatric cancer unit is considered the first step toward improving the cure rate of children with cancer in developing countries. However, the creation of a pediatric cancer unit requires more than a dedicated physical location in a pediatric ward; it also requires the broad engagement of hospital and public leaders aiming to establish a national pediatric cancer program. Inherent in this concept is the access of all children with cancer to treatment and the equitable use of public resources. Such a proposition may not be feasible at present in many countries, but it should be a goal. The establishment of a pediatric cancer unit also requires the commitment of hospital leadership to provide a specific location and to allow medical staff to dedicate their full attention to the care of children with malignancy. Trained pediatric hematologists/oncologists and nurses assume leadership roles to organize multidisciplinary teams that develop modern management guidelines. Alliances with intensive care and infectious disease specialists, surgeons, and radiotherapists improve the quality of care and the survival rates. Patients, parents, and relatives should participate in management decisions and understand the benefits and risks involved in the treatment. Parental education is crucial to increase adherence to treatment and reduce abandonment of therapy – a barrier to effective pediatric oncology that is unique to developing countries. When resources are fully utilized and experience has been accumulated, the pediatric cancer unit can be further expanded through alliances with physicians at other institutions, community support groups, government, and international funding agencies. The main goal is to cure an increasing number of children with cancer. St. Jude Children’s Research Hospital Twinning Programs For the past 10 years, analysis of the St. Jude IOP partnerships has revealed several components essential to creating effective cancer programs. First, community participation through the development of a non-governmental organization (NGO) is likely to be the single most important element in implementing an effective anticancer program. NGO participation is particularly critical in those countries where no public funds through the government are available for medications or social support for the families of children with cancer. Typically, these NGOs provide shelter, food, and transportation for patients and their families, and they purchase medications and other services. They also educate the community and families about childhood cancer and create a state of constant awareness of the needs of the patients and their families. In many cases, NGOs exert intense pressure on governments to include childhood cancer programs as a health priority. Moreover, some of the NGOs have developed rather sophisticated fundraising techniques that allow them to expand their services and become visible in the community. As a nation’s economic situation improves further, the role of the NGO may shift to support specific services such as bone marrow transplantation or research projects. The second most important element in implementing an effective anticancer program is the availability of at least one full-time dedicated pediatric hematologist/oncologist to lead the development and implementation of the pediatric cancer unit. This individual has the responsibility to organize the unit and establish medical priorities. Working closely with NGOs, hospital leadership, and international partners, medical directors occupy a central role in the governance of the cancer unit. A third essential component is the promotion of nursing to a prominent role in patient care and family education. Specific training in pediatric oncology for nurses and retention of these trained nurses in the unit are important to improved patient care. Continuing education, through participation in meetings or other forms of professional activities, motivates the nurses and provides them with a sense of ownership. A fourth component is continuing communication between partners involved in the twinning. These communications can take different forms and include discussion of clinical cases or treatment protocols and workshops to review treatment outcomes. Fifth is access to essential resources such as up-to-date textbooks and medical literature. The demand for such resources is evidenced by the fact that the St. Jude educational Web site www.Cure4Kids.org now has about 27,000 users distributed in more than 170 countries. Sixth is the need for detailed recording of the patients’ demographic, clinical, and outcome information and development of a database that allows for data analysis. Finally, when such expertise is not available locally, individuals need training to provide correct diagnoses of pediatric malignancies, including immunohistochemistry for solid tumors and flow cytometry for leukemias. Selected Reading 2008-2013 Action Plan for the Global Strategy for the Prevention and Control of Noncommunicable Diseases. World Health Organization Press, 2008 Bonilla M, Rossell N, Salaverria C et al. Prevalence and predictors of abandonment of therapy among children with cancer in El Salvador. Int J Cancer 2009;125(9):2144-2146. Day SW, Dycus PM, Chismark EA, McKeon L. Quality assessment of pediatric oncology nursing care in a Central American country: findings, recommendations, and preliminary outcomes. Pediatr Nurs 2008;34(5):367-373. Delgado E, Barfield RC, Baker JN et al. Availability of palliative care services for children with cancer in economically diverse regions of the world. Eur J Cancer 2010. Gupta S, Bonilla M, Fuentes SL et al. Incidence and predictors of treatment-related mortality in paediatric acute leukaemia in El Salvador. Br J Cancer 2009;100(7):1026-1031. Hazin R, Qaddoumi I. Teleoncology: current and future applications for improving cancer care globally. Lancet Oncol 2010;11(2):204-210. Howard SC, Pedrosa M, Lins M et al. Establishment of a pediatric oncology program and outcomes of childhood acute lymphoblastic leukemia in a resource-poor area. JAMA 2004;291(20):2471-2475. Howard SC, Metzger ML, Wilimas JA et al. Childhood cancer epidemiology in low-income countries. Cancer 2008;112(3):461-472. International Union Against Cancer (UICC). Childhood Cancer: Rising to the challenge. 2006. http://www.internationalcancerfoundation.org/templates/uicc/pdf/wcd_ccr.pdf Kamangar F, Dores GM, Anderson WF. Patterns of cancer incidence, mortality, and prevalence across five continents: defining priorities to reduce cancer disparities in different geographic regions of the world. 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