Relevance of a database for monitoring a cooperative paediatric nephrology project in Nicaragua

Abstract

Sirs, Many leading international scientific societies [European Society of Paediatric Nephrology (ESPN), International Society of Nephrology (ISN), International Pediatric Nephrology Association (IPNA), Latin American Pediatric Nephrology Association (ALANEPE) and others] and a significant number of pediatric nephrologists have contributed to the growth of our knowledge in the field of pediatric nephrology in developing countries over recent years [1–4]. Since 2000, we have been participating in a cooperative project in Nicaragua [5] with the aims of developing a tertiary pediatric nephrology centre in Managua (renal biopsies, dialysis and living donor transplantations) and a web network that links this centre and six Departmental hospitals in order to share diagnostic and treatment protocols and improve the early diagnosis and treatment of children with kidney and urinary tract diseases (KUTDs). The project includes the regular recording of the clinical data of all inand outpatients aged <19 years, for which an ad hoc computerised database was established in 2002 to contain basic demographic data, the diagnosis, the clinical course (cured, on or lost to follow-up, deceased), and annual creatinine clearance values or the type of renal replacement therapy (RRT) of patients with chronic renal failure (CRF; CrCl <75 ml/min/1.73 m). The data are regularly sent to the coordinating centre in Milan and discussed by e-mail or during meetings held twice a year in Nicaragua. As of December 2008, the data of 3376 children had been entered in the database, including 193 with CRF (Fig. 1). Analysis of the 56 deceased patients revealed that 95% had died during stage IV or V CKD according to the National Kidney Foundation (NKF) classification: 43% before RRT program was started in Managua (up to 2004), 22% while on RRT and 32% without starting RRT (for social problem). Although the project had undoubtedly improved the treatment of children with CRF by providing previously unavailable diagnostic and therapeutic resources, such as RRT, this was still a high rate of CRF-related mortality. The large number of children lost to follow-up or not entering the RRT programme was clearly not only due to limited medical facilities, but also to factors that could only be partially addressed by a simple cooperative project: logistics (distance from hospitals and the lack of transportation infrastructures), social problems (health education) and the families’ economic priorities [6]. An epidemiological analysis of the Departments fully covered by the project (61% of the country’s pediatric population) also indicated a lower incidence and prevalence of CRF than those reported in the ITALKID Italian Registry of CRF [7] (9.29 vs. 12.1 patients/year per million of the age-related population, and 40.3 vs. 74.7 patients per million of the age-related population, respectively), which was used for comparative purposes because of its similar patient selection and inclusion criteria. These data suggested that many G. Marra (*) :A. Edefonti Pediatric Nephrology and Dialysis Unit, Clinica Pediatrica G. e D. De Marchi, Fondazione O.M. Policlinico Mangiagalli e Regina Elena, Via Commenda 9, 20122 Milan, Italy e-mail: gimarra@hotmail.com