The My Child Matters Programme: The Effect of the Implementation of a Childhood Cancer Care Network (ReNaCI) in the Treatment Abandonment of Acute Lymphoblastic Leukemia in Paraguay
Authors: Samudio A. , Figueredo D. , Mattio I. , Torres R. , Zelada O. , Caniza M. , Gagnepain-Lacheteau A. 
Published: September 2018

Background: In Paraguay, a low-middle income country (GDP per capita of USD 4,728.7), pediatric cancer is the second cause of mortality in children and adolescents 5-19 years of age. There are approximately 300 new cases of pediatric cancer per year. The Pediatric Cancer Center (PCC) of the School of Medicine (SoM) receives 120 new cases per year, of which 40% correspond to acute lymphoblastic leukemia (ALL). Treatment abandonment is the interruption of patient contact with the health personnel and the treatment of more than 30 days after treatment initiation. At our cancer center, ALL treatment abandonment has been a serious problem. The rates were as high as 20% in 2006, lowering to 17.5% in 2008. To prevent abandonment at our center, we assessed the risk for abandonment, then, we concentrated in three basic interventions: review of compliance with appointment, training of parents and teachers, and access for care at satellites clinics closer to home. For missed appointment, parents are contacted via telephone, or through home visits; and in occasions assistance of child protection services was solicited. We systematically trained parents in the importance of the adherence to cancer treatment. Since 2009, we implemented a comprehensive system for referrals of new cases and follow-up by establishing the ReNaCI, (Red Nacional de Atencion al Cancer Infantil) network. Essential funds for building and sustaining the network has been provided by My Child Matters program under the auspices of Sanofi Espoir Fundation, Paris, France. Currently, as part of this network, there is 4 regional pediatric clinics for early cancer detection, referral, treatment, social assistance and follow up of pediatrics patients with cancer. Aim: Assess the effect of the network in the percentage of abandonment of treatment in patients with ALL treated at the PCC of the SoM in Asunción. Methods: We conducted a longitudinal descriptive study of children diagnosed with ALL at the PCC of the SoM between January 2009 and December 2017. We analyzed the percentage of abandonment since the implementation of the ReNACI network and compared with historical data. Results: From January 2009 to December 2017, 396 new patients with ALL diagnose at the PCC of the SoM. More than 70% of the families were evaluated as having an elevated social risk for abandonment. Abandonment rate decreased from 17.5% in 2008, in 2010%-1.96%, and since 2011 there were no abandonment. However, we still observed in the study period 12% of missed appointments to continue the treatment protocol. Conclusion: The ReNaCI network allowed a successful implementation of interventions to address abandonment by establishing a systems of satellite clinics for a medical and social support for the child and his family closer to home during the entire treatment period. But, despite the achievements, a continuous monitoring is still required to sustain the success of our intervention. Funding: Sanofi Espoir Foundation