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9 IAPB General Assembly, Hyderabad, India Course 5: Data Collection and Information Management Monitoring and Evaluating ROP Clinical and Programme Outcomes in Latin America. Andrea Zin Instituto Fernandes Figueira/FIOCRUZ, Rio de Janeiro, Brazil CBM Medical Advisor

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9 IAPB General Assembly, Hyderabad, India

Course 5: Data Collection and Information Management

Monitoring and Evaluating ROP Clinical and Programme

Outcomes in Latin America

Andrea Zin

Instituto Fernandes Figueira/FIOCRUZ, Rio de Janeiro, Brazil

CBM Medical Advisor

Childhood Blindness Subcomittee/ /IAPB LA

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DISCLOSURE STATEMENT

Nothing to disclose

slide3

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
slide4

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

    • Web based ROP Network (PAAO/PAHO/cbmSiB):
    • 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
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Strengths and limitations of current approaches, and the potential for integration in health

2009-2011

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

    • Web based ROP Network (PAAO/PAHO/cbmSiB):
    • www.redeneonatal.fiocruz.br/rop
  • Web based: maintenance, access
  • Dedicated, trained personnel
  • Cost, sustainability
  • Opportunity: integration in health system
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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
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Mongolia

Havana, Cuba

Caracas, Venezuela

Salvador, Brasil

India

Cali, Colombia

Coimbature, India

Guadalaraja, Mexico

Lima, Peru

Guayaquil, Ecuador