Impact of a structured educational programme for caregivers of children with cancer on parental knowledge of the disease and paediatric clinical outcomes during the first year of treatment.

OBJECTIVE: To assess the impact of a structured educational programme for caregivers of children with cancer on their level of knowledge about the disease and patient's clinical outcome. METHODS: This prospective, non-randomised, experimental study included caregivers of recently diagnosed children at two hospitals in Chile. Caregivers whose children were treated at the first centre were the structured education programme group (EPG), while the second hospital provided the standard care (SCG). We evaluated caregivers' level of knowledge on days 1, 10 and 90 as well as the children's clinical outcomes over 1 year of treatment. RESULTS: A total of 102 caregivers were enrolled between 2014 and 2015. Only the EPG showed a significant increase in knowledge between days 1 and 90. The rate of central venous catheter infections was significantly lower in the EPG versus SCG (7% versus 26%; p = .01). The risk ratio was 0.35 (95% CI = 0.13-0.94), and a log-rank test showed a statistically significant difference between the two groups (p = .018). There were also fewer Emergency Department visits in the EPG for fever episodes. CONCLUSION: Providing a structured education to caregivers increased their level of knowledge and improved the clinical outcome of their children during the first year of treatment.

Perfil socioeconómico de familias de niños diagnosticados con cáncer / Socioeconomic profiles of families of children diagnosed with cancer

INTRODUCCIÓN: El cáncer es una enfermedad que demanda grandes recursos en el área médica y psicosocial. En Chile, cada año, se diagnostica cáncer a 500 niños; la sobrevida a 5 años es similar a países de altos ingresos (75%). El ingreso económico de los países es un factor relevante dado que se correlaciona con la sobrevida de los enfermos de cáncer de forma directamente proporcional. En el caso de Chile los costos de la enfermedad están cubiertos por el Sistema de Salud. Fundación Nuestros Hijos, institución privada sin fines de lucro, asiste integralmente a los niños con cáncer atendidos en el Hospital Exequiel González Cortés, entre otros. OBJETIVO: Describir la situación socioeconómica de las familias de niños diagnosticados de cáncer en el Hospital Exequiel González Cortés, durante el año 2011. MÉTODO: Estudio observacional descriptivo. Del total de 69 niños diagnosticados ese año se incluyeron 57 niños, 12 fueron excluidos: 6 por ser recaída de enfermedad oncológica y 6 por no contar con todos los datos. RESULTADOS: el 54% [n=31) fue diagnosticado de Leucemia; la edad promedio fue de 6 años; 35% (n=20) provenía de la Región de O'Higgins, Chile; 32% (n= 18) de las madres y 95% (n=40) de los padres tenía algún tipo de trabajo remunerado; el ingreso familiar promedio mensual era equivalente a 579 dólares (por debajo del promedio nacional 1.621 dólares), per cápita de 116 dólares. El 35% de las familias compartía casa con otras familias. CONCLUSIONES: Las condiciones económicas y sociales de estas familias, podrían poner en riesgo la sobrevida de sus hijos enfermos de cáncer, si no cuentan con soporte suficiente que permitan acceder de forma apropiada al tratamiento.

INTRODUCTION: Cancer is a disease that requires a great number of medical and psychosocial resources. Each year in Chile, 500 children are diagnosed with cancer, and the 5-year survival rates are similar to those of high-income countries (75%). National income is a crucial factor, given that it is directly related to cancer survival rates. In Chile, the Health System covers the medical costs of the disease. Fundación Nuestros Hijos (Our Children Foundation), a nonprofit organization, gives comprehensive assistance to children with cancer that are treated in Hospital Exequiel Gonzáles Cortés, among other centers. PURPOSE: To describe the socioeconomic situation of families who have children diagnosed with cancer, who were treated in Hosptial Exequiel González Cortés in 2011. METHODOLOGY: For this descriptive and observational study, of the 69 children who were diagnosed with cancer in Hospital Exequiel Gonzáles Cortés during 2011, 57 were included in the study, and 12 were excluded: 6 because they were suffering relapse of a previously treated oncologica disease, and the other 6 because all of their necessary data were not available. RESULTS: Of the 57 children included in the study, 54% (n=31) were diagnosed with leukemia; the average age of the children was 6 years; and 35% (n=20) of patients came from the O'Higgins Region of Chile. Additionally, 32% (n=18) of the children's mothers and 95% (n=40) of their fathers had paid employment; the average monthly family income was equivalent to USD$579 (lower than the national average USD$1,621), and USD$116 per capita. It was found that 35% of the children's families shared their home with other families. CONCLUSIONS: These families' economic and social conditions could be a risk factor for the survival of their children with cancer, if they do not have sufficient support to access appropriate treatment.