Improvement of Care and Kidney Transplantation to Decrease  Mortality of Children with Chronic Renal Failure in Nicaragua

Project location: NICARAGUA
Project start date: September 2013 - Project end date: September 2015
Project number: 2013-033
Beneficiary: Associazione per il Bambino Nefropatico ABN- ONLUS

 

Before 2001, no care was available for children with severe kidney diseases in Nicaragua; since then, the Associazione per il Bambino Nefropatico, Onlus (ABN) has sponsored a very wide-ranging project aimed at creating appropriate clinical care for children with renal and urinary tract diseases, with the significant financial support of Lombardy’s Regional Government and the agreement and support of the Government of Nicaragua.  A new Department of Nephrology and Urology has been set up in the Children’s Hospital in Managua, which now provides all of the medical and surgical care required by children with severe kidney diseases (from renal biopsies to dialysis and kidney transplants from living donor). At the same time, a network of peripheral district hospitals (covering about 80% of the Nicaraguan population) has been created to ensure the early diagnosis and primary care of children with renal and urinary tract diseases.

A critical analysis of all of the data in a specific database that which includes a total of 356 children with chronic renal failure (stages II-V) diagnosed between 2002 and 2012 shows that:
1)    A comprehensive network for the care of children with chronic renal failure (CRF) now exists in Nicaragua as a result of the help of Italian cooperation (see above). It is currently operating in an acceptable manner, and is recognised as part of the National Health Service of Nicaragua.
2)    However, despite the availability of adequate medical facilities, it is necessary to underline two very crucial drawbacks:
-    many children with CRF have been lost to follow-up (30.8%) or have died (28.6%);
-    only a small number of children with end-stage renal disease have received a kidney transplant (26 between 2007 and March 2013).

In order to achieve the two main goals of this project (i.e. a significant reduction in the number of children with chronic kidney disease [CKD] who are lost to follow-up or die, and an increase in the number of children with end-stage renal failure who undergo kidney transplant) the following activities need to be implemented.
a)    Reducing the number of children with CKD who are lost to follow-up or die:
1.    As soon as a child is diagnosed as having CKD, we intend to acquire relevant information about the  education and socio-economic status of the family in order to ensure that the patient can subsequently fully benefit from the medical care available. To this end, an ad hoc database of socio-economic data regarding patients’ family will be created and used.
2.    Regular and routine agreements will be established with the local health authorities in order to give them responsibility for the correct medical management of the patients and verify the type of socio-economic aid required.
3.    An agreement will be established with the Children’s Hospital of Managua in order to facilitate the travelling and accommodation needs of the children attending follow-up clinical examinations in the city.
4.    In the case of children whose compliance with medical prescriptions is inadequate or who do not regularly attend follow-up examinations in Managua, a home visit by a social worker of Managua Children’s Hospital will be organised in order to verify the reasons and agree with the local health authorities how to overcome any difficulties.
b)    Implementing cadaveric kidney transplants in Nicaragua, with special priority being given to pediatric transplantations.
The Government of Nicaragua has already approved a law to introduce cadaveric renal transplantations, which should be voted on by the country’s Parliament before summer 2013. This is the very necessary premise for very significantly increasing the number of children with end-stage renal disease who can undergo kidney transplantation.
This project received a grant from the Nando Peretti Foundation. The Associazione per il Bambino Nefropatico ONLUS will contribute towards the implementation of this important advance by:
-    purchasing the necessary equipment for facilitating kidney explants;
-    supporting the training of the medical personnel who will be in charge of these procedures.

Two main outcomes can be forecast:
a)    a significant reduction in the number of Nicaraguan children lost to follow-up and/or dying because of CKD;
b)    a significant increase in the number of pediatric kidney transplantations in Nicaragua.

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