Download Improving Survival of Children with Cancer Worldwide

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. J Clin Oncol 2006;24(14):2137-2150.
Ribeiro RC, Pui CH. Saving the children--improving childhood cancer treatment in developing
countries. N Engl J Med 2005;352(21):2158-2160.
Ribeiro RC, Steliarova-Foucher E, Magrath I et al. Baseline status of paediatric oncology care in
ten low-income or mid-income countries receiving My Child Matters support: a descriptive
study. Lancet Oncol 2008;9(8):721-729.
Smith MA, Seibel NL, Altekruse SF et al. Outcomes for children and adolescents with cancer:
challenges for the twenty-first century. J Clin Oncol 2010;28(15):2625-2634.
United Nations. The Millennium Development Goals Report 2010. New York: United Nations,
2010. http://www.un.org/millenniumgoals
Workman GM, Ribeiro RC, Rai SN, Pedrosa A, Workman DE, Pedrosa F. Pediatric cancer
knowledge: assessment of knowledge of warning signs and symptoms for pediatric cancer
among Brazilian community health workers. J Cancer Educ 2007;22(3):181-185.