1. 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 Programme Outcomes in Latin America

2. DISCLOSURE STATEMENT Nothing to disclose

3. 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

4. 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

5. 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

6. 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)

7. 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

8. Strengths and limitations of current approaches, and the potential for integration in health

9. 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

10. Report

12. Strengths and limitations of current approaches, and the potential for integration in health 2009 UnidadeElegíveis* Total de exames % exame A 39 100% B 20717786% C 534891% D 272074% E 756992% F 675278% G 786583% H 514588% I 645789% J 413483% K 535298% L 605083% M 625792% N 363289% O 332782% P 474596% Total Global99386988% * Excluídos os óbitos 2010 UnidadeElegíveis* Total exames% exame A 373389% B 18014178% C 575596% D 272281% E 827591% F 533566% G 695580% H 474289% I 605490% J 323197% K 838198% L 494796% M 595492% N 443989% O 262596% P 504590% Total95583487% * Excluídos os óbitos 2011 UnidadeElegíveis*Total de exames% exames A41 100% B20418390% C504590% D453782% E726894% F513976% G776990% H545398% I716794% J24 100% K595797% L595186% M565293% N211990% O322888% P473779% Total96387090% * Excluídos os óbitos

13. Strengths and limitations of current approaches, and the potential for integration in health 2009 Unidade Total Examinados Total Tratados % ROP Tratada A 3938% B 177127% C 4824% D 20420% E 6934% F 5224% G 6546% H 4524% I 5747% J 3400% K 5236% L 5024% M 57814% N 3200% O 2714% P 45716% Total 869577% 2010 Unidade Total Examinados Total Tratados % ROP Tratada A 3313% B 14143% C 55713% D 2229% E 7545% F 3513% G 5524% H 4237% I 5412% J 3113% K 8145% L 4712% M 5447% N 3900% O 2514% P 4500% Total 834364% 2011 Unidade Total Examinados Total Tratados % ROP Tratada A 4100% B 18353% C 4549% D 3700% E 6834% F 39410% G 6900% H 5312% I 6723% J 2414% K 5700% L 5148% M 5248% N 1900% O 2814% P 3700% Total 870293%

14. Strengths and limitations of current approaches, and the potential for integration in health 2009-2011

15. 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

16. 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

17. Results-based reports for stakeholders

19. Mongolia Caracas, Venezuela Lima, Peru India Havana, Cuba Coimbature, India Guayaquil, Ecuador Guadalaraja, Mexico Cali, Colombia Salvador, Brasil