Andrea Zin

Instituto Fernandes Figueira/FIOCRUZ, Rio de Janeiro, Brazil

CBM Medical Advisor

Childhood Blindness Subcomittee/ /IAPB LA

9 IAPB General Assembly, Hyderabad, India

Course 5: Data Collection and Information Management

Monitoring and Evaluating ROP Clinical and ProgrammeOutcomes in Latin America

DISCLOSURE STATEMENT

Nothing to disclose

Overview

• Need for monitoring and evaluation: ROP MIS• Data collection issues for ROP programmes• Strengths and limitations of current approaches,

and the potential for integration in health• How existing data can help decision making• Results based reports for stakeholders

Need for monitoring and evaluation: ROP MIS

• ROP blindness prevention in Latin America:

• ROP is the main cause of childhood blindness*

• ROP is an indicator of quality of neonatal care

• Magnitude:

• at least 42,000 babies BW < 1,500 to examine/year

• Over 4,000 treatments/year

• Multidisciplinary approach: nurses, neonatologists,

ophthalmologists

• Multilevel prevention approach: primary, secondary and

tertiary

* Gilbert C. Retinopathy of prematurity: a global perspective of the epidemics, population of babies at risk and implications for control. Early Hum Dev. 2008;84(2):77– 82

Need for monitoring and evaluation: ROP MIS• ROP blindness prevention in Latin America:

• Several countries in the region now have policies and/or

regulations, leading to financing structures for examination or

for laser treatment: ROP programme implementation

• Quality control is needed at different levels: neonatal care, eye care, programme

• Challenge: lack of MIS for quality control•coverage, detection, population needing treatment, treatment rates and results

•NICU, district, country/regional level

Data collection issues for ROP programmes• Lack of standard data collection forms in several ROP

programmes• Decision: data to be collected (accurate, precise, valid,

timeliness, unbiased, relevant)• Indicators: clinical outcomes, programme outcomes• GIGO: garbage in = garbage out

• Lack of dedicated trained personnel for data management: nurse, nurse technician?• Data entry• Quality control• Data security• Data storage• Data management: cleaning, descriptive analysis,

associations

• Neonatal outcome data: networking with nurses and neonatologists (some countries - neonatal networks)

Strengths and limitations of current approaches, and the potential for

integration in health• Web based ROP Network (PAAO/PAHO/cbm SiB):

www.redeneonatal.fiocruz.br/rop

• Standardised data collection forms

Strengths and limitations of current approaches, and the potential for

integration in health

Strengths and limitations of current approaches, and the potential for

integration in health• Web based ROP Network (PAAO/PAHO/cbm SiB):

www.redeneonatal.fiocruz.br/rop

• Diary system: avoid missing exams

• Reports readily available, customized according to

needs

• Different levels of access: quality and security

• Integration with Brazilian Neonatal Network

• Neonatal outcome indicators

• Monitoring and evaluation

Report

Strengths and limitations of current approaches, and the potential for

integration in health  2009  

Unidade Elegíveis*Total de exames

% exame

A 39 39 100%

B 207 177 86%

C 53 48 91%

D 27 20 74%

E 75 69 92%

F 67 52 78%

G 78 65 83%

H 51 45 88%

I 64 57 89%

J 41 34 83%

K 53 52 98%

L 60 50 83%

M 62 57 92%

N 36 32 89%

O 33 27 82%

P 47 45 96%Total

Global 993 869 88%

* Excluídos os óbitos

2010

Unidade Elegíveis*Total

exames % exame

A 37 33 89%

B 180 141 78%

C 57 55 96%

D 27 22 81%

E 82 75 91%

F 53 35 66%

G 69 55 80%

H 47 42 89%

I 60 54 90%

J 32 31 97%

K 83 81 98%

L 49 47 96%

M 59 54 92%

N 44 39 89%

O 26 25 96%

P 50 45 90%Total 955 834 87%

* Excluídos os óbitos

2011

Unidade Elegíveis* Total de exames % exames

A 41 41 100%

B 204 183 90%

C 50 45 90%

D 45 37 82%

E 72 68 94%

F 51 39 76%

G 77 69 90%

H 54 53 98%

I 71 67 94%

J 24 24 100%

K 59 57 97%

L 59 51 86%

M 56 52 93%

N 21 19 90%

O 32 28 88%

P 47 37 79%Total 963 870 90%

* Excluídos os óbitos

Strengths and limitations of current approaches, and the potential for

integration in health2009

UnidadeTotal

ExaminadosTotal

Tratados% ROP Tratada

A 39 3 8%

B 177 12 7%

C 48 2 4%

D 20 4 20%

E 69 3 4%

F 52 2 4%

G 65 4 6%

H 45 2 4%

I 57 4 7%

J 34 0 0%

K 52 3 6%

L 50 2 4%

M 57 8 14%

N 32 0 0%

O 27 1 4%

P 45 7 16%

Total 869 57 7%

2010

UnidadeTotal

ExaminadosTotal

Tratados% ROP Tratada

A 33 1 3%

B 141 4 3%

C 55 7 13%

D 22 2 9%

E 75 4 5%

F 35 1 3%

G 55 2 4%

H 42 3 7%

I 54 1 2%

J 31 1 3%

K 81 4 5%

L 47 1 2%

M 54 4 7%

N 39 0 0%

O 25 1 4%

P 45 0 0%

Total 834 36 4%

2011

UnidadeTotal

Examinados

Total Tratado

s

% ROP Tratada

A 41 0 0%

B 183 5 3%

C 45 4 9%

D 37 0 0%

E 68 3 4%

F 39 4 10%

G 69 0 0%

H 53 1 2%

I 67 2 3%

J 24 1 4%

K 57 0 0%

L 51 4 8%

M 52 4 8%

N 19 0 0%

O 28 1 4%

P 37 0 0%

Total 870 29 3%

Strengths and limitations of current approaches, and the potential for

integration in health2009-2011

Strengths and limitations of current approaches, and the potential for

integration in health• Web based ROP Network (PAAO/PAHO/cbm SiB):

www.redeneonatal.fiocruz.br/rop

• Web based: maintenance, access

• Dedicated, trained personnel

• Cost, sustainability

• Opportunity: integration in health system

How existing data can help decision making

• Coverage

• Level of care: neonatal indicators

• survival, surfactant, sepsis, BPD

• Screening criteria: BW and GA of treated babies

• Quality of detection

• Treatment results

Results-based reports for stakeholders

Results-based reports for stakeholders

Mongolia

Caracas, Venezuela

Lima, Peru

India

Havana, Cuba

Coimbature, India

Guayaquil, Ecuador

Guadalaraja, Mexico

Cali, ColombiaSalvador, Brasil