Evaluation of the current state of management of children with central nervous system tumors in Paraguay through a comprehensive needs assessment

UnrestrictedBackground: Advances in pediatric cancer care which have improved outcomes in high-income countries have not reached the 80% of children with cancer who live in low-income countries. Efforts have been made to improve care for children with leukemia (the commonest childhood cancer) in low-income countries, but there has been virtually no focus on children with brain tumors (the second commonest childhood cancer). This study focused on Paraguay, a low-middle income country in South America. Only approximately 50% of the expected cases are diagnosed each year and of those, only 50% survive more than a few months after diagnosis. For children with central nervous system (CNS) tumors, preliminary data from two hospitals in Paraguay demonstrate that the number of children diagnosed with brain cancer is less than 50% of what is expected for the population based on global statistics. Patients that are referred for treatment have high morbidity and mortality. The goal of this study was to comprehensively evaluate the current state of care for children with brain tumors in Paraguay, which will then allow for the development of targeted interventions.; Methods: To identify deficiencies in resources that would be amenable to targeted interventions, we evaluated access to care and outcomes in children diagnosed with brain tumors at three hospitals in Asunción, Paraguay: two public hospitals, for patients without health insurance, and one social security hospital for patients with government health insurance.; Three methods were utilized:; 1. Site Visits: Three site visits were performed between June 2009 and August 2010 to evaluate the treatment facilities. The medical team visited the three participating tertiary care centers in Asunción and one satellite clinic, associated with one of the public hospitals, in Ciudad del Este, an under-developed area in the country’s Eastern region.; 2. Interviews with Health Care Workers: Interviews with health care workers from relevant disciplines in the three tertiary care centers were performed to determine their perceptions regarding available resources and deficiencies.; 3. Quantitative Needs Assessment: A questionnaire to evaluate the key components of a brain tumor program was developed and administered to pediatric oncologists from the three participating facilities. A list of medications based on the WHO 2009 list of essential medications was incorporated into the questionnaire to determine their availability.; Results: All three tertiary facilities have access to chemotherapy and pediatric oncologists, but lack training and tools for neuropathology and optimal neurosurgery. The two public hospitals also lack access to appropriate neuroradiological tests and timely radiotherapy, with additional deficiencies in critical care and family support services identified at one of these facilities. These results demonstrate significant disparity even within Asunción, the capital city of Paraguay, with different rates of treatment failure (ranging from 37% to 83% among the three facilities), defined as abandonment of therapy, relapse, and death.; Discussion and Conclusions: These results demonstrate common as well as discrete deficiencies in resources available for the management of children with brain tumors in three treatment facilities in Paraguay. The significant disparity within the capital city of Paraguay may reflect the different levels of governmental and philanthropic support, extent of program development, and socio-economic status of patients and families. These disparities translate into different rates of treatment failure. Causes of failure included abandonment of therapy, relapse and death from toxicity and appear to be associated with lack of resources and support. These findings will aid in the development of targeted strategies to improve early diagnosis and optimal therapy. Supportive measures already in place include local multidisciplinary teams, online conferences, standardized treatment guidelines, and the first Spanish language International Pediatric Neuro-oncology symposium held in August 2010. If effective, these strategies will serve as a model for the development of pediatric brain tumor programs in similar low-income settings