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Cooperation with developing countries: the example of Nicaragua A. Edefonti 1 , G. Marra 1 , F. Sereni 1 , M. Sandoval 2 , Y. Silva Galàn 2 1 UOC. Nefrologia e Dialisi Pediatrica, Clinica Pediatrica G e D. De Marchi, Milano, Italy 2 Departamento de Nefro-Urologia Pediatrica, Hospital Infantil de Nicaragua MJR, Managua, Nicaragua 42° Annual ESPN Meeting, Lyon, September 11-14, 2008

Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

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Page 1: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Cooperation with developing countries:

the example of Nicaragua

A. Edefonti1, G. Marra1, F. Sereni1 , M. Sandoval2, Y. Silva Galàn2

1 UOC. Nefrologia e Dialisi Pediatrica, Clinica Pediatrica G e D. De Marchi, Milano, Italy2 Departamento de Nefro-Urologia Pediatrica, Hospital Infantil de Nicaragua MJR, Managua, Nicaragua

42° Annual ESPN Meeting, Lyon, September 11-14, 2008

Page 2: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Introduction

• No specific pediatric workshop dedicated so far to the initiatives of cooperation, but increased awareness of the matter

• ISN organizing a COMGAN workshop during WCN, Milan 2009

• Pediatric contributions in the literature about the epidemiology of renal diseases in the developing countries, but not about models of cooperation

Page 3: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

• Pediatric Nephrologists always open to educational matters (courses, stages for doctors of developing countries)

• ESPN members regularly receiving trainees from abroad and developing differents types of projects

• No systematic documentation so far of the initiatives of pediatric cooperation worldwide

– IPNA Fellowship Committee starting to require feed-back and track doctors receiving educational grants

(Cont.)

Page 4: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Is cooperation with developing countries only an educational (teaching /training) issue?

A provocative question

Page 5: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

The start of the cooperation with the Pediatric Nephrology Unit of Managua

• 1997-1999 Stage in Milano of Dr. Mabel Sandoval Dìaz

• 1999-2000 Complain about lack of tools to properly diagnose and treat renal diseases

in the Nicaraguan Hospitals

• 2000 Visit to Nicaragua of Italian pediatric nephrologists and recognition of

the paucity of human, instrumental and economic resources at Hospital Infantil MJR

• 2001 Start of the project of cooperation, financed initially by the Associazione per il

Bambino Nefropatico, Milano

Page 6: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

• Methodology of the project

• Results of the project– Clinical activity– Epidemiology

• Points of discussion

Topics

Page 7: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Nicaraguan demographic indicators

Total Population

5 142 098

Child Population

2 514 144

Child mortality 36/1000

Annual per capita income

$ 730

Life expectancy

Male 67.0 years

Female 71.0 years

www.inec.gob.ni

Censo de Poblaciòn 2005.

Page 8: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Characteristics of the initial project 1. Free of charge basic assistance for children with renal

diseases• Lab test, drugs, imaging (in the private system, whenever

necessary)

2. Establishing shared nephrological protocols for the main kidney and UT diseases (the 10 clinical syndromes)

3. Establishing a Pediatric Nephrology Unit in a public Children University Hospital in Managua

• Scaled training in Milano of the different components of the team, (Pediatric Nephrologists, Urologists, Imaging specialist, Pathologists, Dialysis Nurse)

• Building a new Pediatric Nephrology ward

Page 9: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Characteristics of the initial project

4. Implementation of a database

• to gather data on the epidemiology of renal diseases (with special regard to CKD)

• to record and monitor clinical activity

• to make quality control of the diagnoses

5. Web connection between Milano and Managua for clinical consultation

Page 10: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Expansion of the initial project

1. Start of a RRT program (2 beds for HD, CAPD and 6 living donor Tx per year) for selected children with ESRD

2. Establishing a Pediatric Nephrology Network including 5 District Hospitals covering about 55% of the Nicaraguan population

- to increase diagnostic and therapeutic power in each hospital (supply of lab test, medications, imaging tools, shared protocols)

- to avoid patient and family unnecessary transfer to Managua, whenever possible

Page 11: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Expansion of the initial project

3. Proposal of the model of cooperation to other Central America countries

• Sharing database with Guatemala

• Conference on the Prevention and Management of CKD in five Central America countries (29th of February 2008)

4. Extension of the project to a 6th District Hospital where CKD prevalence is allegedly high (61% of population covered)

5. Project of early diagnosis and treatment of kidney and UT diseases in the peripheral “Unidades de Salud” depending from the 6 District Hospitals

Page 12: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia
Page 13: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Managua Milano

Chinandega

Granada

Jinotega

León

Masaya

Matagalpa

The Pediatric Nephrology Network in Nicaragua at September 1 st 2008

Page 14: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

2001 2002 2003 2004 2005 2006 2007 2008

Basic assistance

Protocols/guidelines

Team training

Database

Web connection MI – MA

Infrastructure

Dialysis and Renal Transplantation

Network of 5 District Hospitals

Database shared with Guatemala

Central America conference on CKD

Extension to a 6th District Hospitals

Extension to territorial “Unidades de Salud

Chronology of the project of cooperation

Page 15: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Funding of the cooperation project (2001-2008)

Private Foundations Public Grants

Associazione per il Bambino Nefropatico, Milano (2001-2008)

Health Ministry of Regione Lombardia

(2004-2008)

Asociación para Niños Nefropáticos, Managua (2004-2008)

IPNA Educational Grant (2008)

€ 600 000 € 550 000

Page 16: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Funds from Nicaraguan Health Ministry

• Salaries for 4 Pediatric Nephrologists, 2 Urologists, 1 Pathologist, 11 Nurses, 1 part time Dietician and 1 Psychologist in Managua and 6 Pediatricians of District Hospitals

• Costs of hospitalization, essential medications, lab test and imaging

• Costs of Peritoneal Dialysis, (CAPD and APD) in Managua

• Cost of immunosuppressive medications for renal transplant in Managua since 2008

Page 17: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

• Methodology of the project

• Results of the project– Clinical activity– Epidemiology

• Points of discussion

Topics

Page 18: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Clinical activity of the Pediatric Nephrology Unit of HINMJR during the year 2007

Number of hospitalizations 818Number of outpatient visits

– Nephrology 3096– Urology 1842

Number of renal biopsies 29Number of urodynamic tests 61

Page 19: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Clinical activity of the Pediatric Nephrology Unit of HINMJR at 31 th of December 2007

Number of children with CRI/ESRD 166Number of children treated with chronic HD 13Number of children treated with PD 9Number of transplanted children 17

• 2004 – 2007 14 • 2008 3

Page 20: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Cumulative number of children with kidney and UT diseases entered in the database

0

500

1000

1500

2000

2500

Pediatric Nephrology Unit of HINMJR (2002 – 2007) 2019 patients

Page 21: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

50

100

150

200

250

300

june-05 sept-05 dic-05 mar-05 june-06 sept-06 dic-06 mar-07 june-07 sept-07 dic-07

GranadaJinotegaMasayaLeonMatagalpa

Cumulative number of children with kidney and UT diseases entered in the database

District Hospitals (2005 – 2007) 858 patients

Managua

Page 22: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

0

50

100

150

200

250

300

350

400

450

500

Main diagnoses of kidney and UT diseases in Nicaragua

Pediatric Nephrology Unit of HINMJR (2002 – 2007) 2019 patients

Page 23: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Main diagnoses of kidney and UT diseases in Nicaragua

0

50

100

150

200

250

300

350

400

5 District Hospitals (2005 – 2007) 858 patients

Page 24: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Epidemiology of CRI in Nicaragua

Incidence in the period 2002 - 2007

0,0

2,0

4,0

6,0

8,0

10,0

12,0

14,0

16,0

2002 2003 2004 2005 2006 2007

* Ardissino GL. et al. Epidemiology of chronic renal failure in children data from ITALKID project (2003) Pediatrics 111;4:382-387

Nicaragua Italy *Point Prevalence

(patients/pmpp) 36,4 74,7

Incidence

(patients/pmpp) 9,8 12,1

Page 25: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Primary renal diseases causing CRIat HINJMR (2002 – 2007) 166 patients

0

50

100

150

200

250

300

350

400

450

500

APSGN

Neuro

geni

c bl

adde

r

Obst.

Urop ND

Lith

iasis

SRNS

VUR

Kidne

y hy

popl

asia

Lupu

s Nep

hriti

s

Other

s

GFR:≤90ml/min/1,73

Page 26: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

0

30

60

90

120

150

180

210

pre

vale

nci

a p

mp

Prevalence of CRI (patients/pmp) in the Nicaraguan Districts

Districts inside the project

Districts outside the project

Page 27: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Follow-up of patients with CRI

CRI166

Deceased67

Lost to follow-up41

On follow-up58

HD7

On RRT13

CRI32

* Without RRT54

Tx14

PD5

* Medical decision 27 % Family decision 48 % (socioeconomic reasons) Deceased before the onset of the RRT program 25 %

Page 28: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

• Methodology of the project

• Results of the project– Clinical activity– Epidemiology

• Points of discussion

Topics

Page 29: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Points of Discussion

• The problem of allocation of financial resources to pediatric subspecialties by Health Ministries of developing countries- Low budget expected

- More for primary care than for tertiary care

• Top-down model (development of a central unit prior to peripheral hospitals) preferable for pediatric subspecialties?

• Financial feasibility of the assistance to CKD/ESRD in a developing country and scaled transfer of the costs to the government

Page 30: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Points of Discussion

• Need for fund-raising programs from private and public institutions to finance a cooperation project

• Role of data-bases to assess and monitor the efficacy of a project and to allocate financial resources

• Ethical issues, like allocation of financial resources to dialysis/Tx vs prevention programs of CKD or selection criteria for patients in need for RRT

• Extension of the cooperation model to other countries (methodological aid instead of financial aid)

Page 31: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Is Cooperation with developing countries only an educational (teaching/training) issue?

A provocative question

No. There’s something more to do than just giving the instructions to catch the fish

You should provide also (at least one) fishing rod

Page 32: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

What is the fishing rod?

• Experience in the development and management of a Pediatric Nephrology Unit and Pediatric Nephrology Network

• Financial resources, through fund-raising programs, both in the developing and industrialized countries

• Experience in scientific communication

Page 33: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

What about scientific communication?

• Need for discussing models of cooperation and confronting different experiences

• Need for spreading a culture of cooperation among pediatric nephrologists

Dedicated workshops?Publications in pediatric journals?

Internet?Registry?

Page 34: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Life is calling. How far will you go?

Page 35: Cooperation with developing countries: the example of Nicaragua A. Edefonti 1, G. Marra 1, F. Sereni 1, M. Sandoval 2, Y. Silva Galàn 2 1 UOC. Nefrologia

Thanks