Monitoring and Evaluation of the Early Infant HIV Diagnosis Program

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Monitoring and Evaluation of the Early Infant HIV
Diagnosis Program


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Learning objectives

• Identify roles and responsibilities of clinic and
  ME staff
  
• Understand new registers and forms for collecting
  data
  
• Learn how to assign unique patient identification
  number
  
• Practice using ME tools and completing monthly
  summary forms using a case study example
  

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Outline

• Challenges of the Early Infant Diagnosis (EID)
  program
  
• Generating patient identification numbers for
  infants
  
• Paper based systems
• Data quality
• Tracking specimens and results
• Reporting requirements
• Case study

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Goals and objectives of the infant diagnosis
programme

• Goal
• Establish a system of care and linkages to get
  HIV-exposed and infected infants into quality
  care and treatment services.
  
• Objectives
• Diagnose HIV-infected infants as early in life as
  possible and provide ART if eligible.
  
• Ensure that HIV-exposed and HIV-infected infants
  receive appropriate services and interventions
  
• Evaluate the efficacy of PMTCT interventions by
  following infants until their HIV status is
  confirmed
  
• Develop effective systems to follow-up infants
  and their families.
  

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Programme challenges

• Infant diagnosis requires engaging them in care
  and following them over time, usually the first
  12-24 months of life.
  
• After the first blood test
• Families must return for test results
• Families must return for subsequent testing
  depending on the results of the first test
  
• Require 1 test to confirm childs HIV status
• If the first PCR test is positive, a second test
  should be done for confirmation
  
• If the first PCR test is negative, a second test
  (either PCR or antibody) needs to be done after
  the child is weaned from breastfeeding

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Why do monitoring and evaluation?

• To assess how well the program is working
• To provide feedback to the program and
• Identify what is working
• Identify what is not working
• Identify ways to make the program stronger,
  improve quality of care and service delivery
  

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Roles and responsibilities of staff

• Various members of the EID program will have
  different roles and responsibilities
  
• Provision should be made for absentee staff
  (e.g., if the PMTCT nurse is not in today who
  will collect the DBS specimens?
  
• Who is responsible for transporting samples to
  the Lab?
  
• Who is responsible for checking missed
  appointments and calling defaulters
  
• Who is responsible for completing the HIV-exposed
  infant register?

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Paper based systems for ME HIV-Exposed Infant
Registers

• Special registers have been developed for
  monitoring and evaluating programs for infant
  diagnosis
  
• These registers can also be used to track infants
  enrolled in the programs
  
• Attendance at appointments
• Determination of final infection status
• Enrollment into care and treatment for infected
  children
  
• Quality of care provided

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How to use the HIV-Exposed Infant Register

• HIV-Exposed Infant registers are usually
  completed by nurses and counsellors
  
• They should be located at the most appropriate
  station e.g. MCH, Care Treatment Center
  
• Each HIV-exposed infant should
• Be assigned a unique facility Infant Diagnosis
  Identifier (IDID)
  
• Should be entered in the register once
• Results of all HIV tests should be entered on the
  same line in the register
  
• Discussion How will these registers be completed
  at each of the sites?
  

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How to assign the Infant Diagnosis Identifier
(IDID)?

• A unique Infant Diagnosis Identifier (IDID) is
  required to identify and track HEI before they
  are referred to the CTC clinic
  
• IDID is given at the time of registration of the
  exposed infant
  
• Different IDID have been used
• E.g. In Tanzania
• The IDID begins with a two letter site code e.g.
  MK for Makongoro Health Centre, ST for Sekou
  Toure Regional Hospital
  
• Followed by a 4-digit serial number e.g.
  0001,002, 0003 etc.
  

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Examples of unique IDIDs
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HIV-Exposed Infant Register
001 12/04/07 PMTCT ST-0001 18/02/07
Doe John Makonge
Doe Esther

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HIV-Exposed Infant Register (2)
1002312 ( ) sdNVP( ) sdNVP
( ) ( )
14/04/07 ( )

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HIV-Exposed Infant Register (3)
15/05/07

healthy, EBF, infant DKarysn
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Completing the HIV-Exposed Infant Register

• Other registers that could feed into the
  HIV-exposed infant register in case of missing
  information
  
• PMTCT registers MCH, LD
• Pre-ART register ART register
• Daily attendance log books (MCH, Care Treatment
  Center)
  
• Laboratory registers

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HIV-Exposed Infant Medical File

• In addition to the HIV-exposed infant register,
  facilities may want to use a patient medical file
  to record information such as clinical signs and
  symptoms of HIV, including growth monitoring, and
  neurodevelopmental assessment at each visit.
• The patient medical file may include
• Visit notes
• Lab results for HIV testing
• Other investigation results
• Prescriptions
• Growth chart
• Patient files should be organized and filed
  securely

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Data Quality Assurance

• Data is complete
• 80 of fields in register are complete
• Regular review of registers to make sure clinic
  staff are entering new IDIDs and all information
  is filled in
  
• Can be done daily or weekly
• Data is accurate and valid
• Compare with other data sources (e.g., lab
  register, patient file) for consistency monthly.
  
• 80 of data is within expected range (e.g.,
  date of visit has correct year)
  
• Evaluate whether infants remain in follow-up
• Review register to see if families are returning
  for results, or are due for additional HIV
  testing weekly

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Forms for tracking specimens and results

• PCR lab request form
• PCR lab request form must be completed for each
  patient by the person drawing the specimen
  
• Specimen collection log
• Specimen collection log must be completed by
  clinic staff and copy sent with specimen batch to
  the lab
  
• Laboratory register
• Laboratory personnel enters all specimens
  received and documents results after tests has
  been performed
  
• PCR results delivery log
• PCR delivery log must be completed by lab staff
  and sent back to the clinic

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PCR Lab Request Form
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Specimen Collection Log
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Laboratory Register
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PCR Results Delivery Log
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Reporting requirements

• Monthly summary report and Narrative for
  monitoring the program completed by clinic staff
  
  
• Counseling and testing of the exposed infant
• PCR tests done
• Antibody tests done
• Results of tests
• Number of families given test results
• Appropriate care for HIV-exposed infant
• Cotrimoxazole prophylaxis
• Referral to Care and Treatment Center for
  HIV-infected children
  

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Monthly Summary Form (MSF)
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EID Program Monthly Narrative Report
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Lab Monthly Summary Form
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Key EID program indicators (1)

• An indicator is a summary measure that provides
  information on the status of activities related
  to each step of the program cycle
  
• Examples of useful indicators
• Number/Percentage HIV-exposed infants identified
• Number/Percentage of HIV-exposed infants who
  received DNA PCR by 6 weeks of age
  
• Number/Percentage of infants receiving
  cotrimoxazole prophylaxis at 6 weeks of age
  
• Results of DNA-PCR tests positive, negative,
  indeterminate

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Key ID program indicators (2)

• Number/Percentage of families who receive test
  results
  
• Among infants with positive PCR result
• Number/Percentage who get confirmatory PCR
• Number/Percentage referred to HIV care and
  treatment
  
• Number/Percentage who get CD4 testing
• Number/Percentage who initiate ART if eligible
• Number/Percentage of HIV-exposed infants with
  final HIV status
  
• Infant mortality rates
• Number/percentage of infants lost to follow-up
  (missing all clinic visits in the past 6 months)
  

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Following infants and their families

• Systems need to be put in place at site to
  monitor families returning for PCR results and
  follow-up testing when child stops breastfeeding
  
• Establish formal appointment systems
• Use appointment books to see if families keep
  their follow-up appointments
  
• Establish protocols for reviewing clinic
  attendance
  
• Identifying defaulters
• Prioritizing active follow-up particularly of
  infants with positive PCR results
  
• Engaging all infants in care

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Minimizing Lost To Follow-up

• Keep an appointment book at sites for early
  identification of missed visits
  
• Content and style can vary by site
• Where possible home visits for mother/guardian
  child
  
• Linkages with other departments that may come in
  contact with exposed infants or their parents
  
• CBOs
• Outreach clinics
• Immunization campaigns
• CTC clinics
• Update of registers and patient files whenever
  new data become available

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Summary of ME

• Completion of registers and forms should be
  assigned to specific staff members
  
• Every infant should be assigned a unique IDID and
  entered into HIV-exposed infant register
  
• Information in HIV-exposed infant register should
  be complete and updated regularly
  
• If register data is incomplete, or inaccurate,
  cannot evaluate how well program is working

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Summary of ME

• Establish good follow-up systems to identify
  families not returning for test results, or
  infants in need of follow-up testing
  
• HIV-exposed infant register data should be
  summarized on monthly reporting forms
  
• Reviewing data regularly is critical to success
  of the program
  
• Provide feedback to the site in a timely manner

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• Case Study

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Case study Baraka

• Baraka Abdullah is a baby girl who was born on
  18th August 2006 to Molly, an HIV positive woman
  who had attended Makongoro HC for ANC and
  received NVP for PMTCT. She had also been
  enrolled at the CTC clinic and given the CTC
  number 19321265. However, Baraka was born at
  home, and did not receive any NVP. Both Molly and
  Baraka have been sickly in the past months, which
  has prevented Molly from coming to the clinic.
  Today October 14th , is the first visit to MCH
  since Baraka was born.

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Baraka (2)

• What counseling will you give Molly
• How will you assess Baraka
• When will you ask her to return to MCH
• Where will you record this to ensure Baraka is
  followed up ?
  

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Baraka (3)

• Molly is counseled and agrees that Baraka should
  be tested for HIV
  
• You give Baraka the IDID ST-0001 and enter her
  in the HEI register
  
• What needs to be done next?
• What medications does Baraka need at this visit?
• When will you ask Baraka to come back?

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Baraka (4)

• Molly brings Baraka back 4 weeks later and
  reports that they both have been feeling much
  better since the last clinic visit. You received
  Barakas 1st DNA PCR results two weeks ago and
  they were positive.
• What do you need to do at this visit?
• How will you counsel Molly?
• What other information do you require?
• Where will you record all this?

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Baraka (5)

• Molly says Baraka is still breastfeeding. You
  give Molly Barakas result and counsel her on the
  importance of exclusive breastfeeding. You take
  another DBS specimen for a confirmatory PCR test.
  You complete a referral form and get her an
  appointment to be seen in the CTC. The PCR
  results for the second specimen is positive.
• What will you do now?
• Where will you record?

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Baraka (6)

• You complete the HEI register. Call Molly to
  check on Baraka and remind her the appointment to
  the CTC is due in 1 week. You send the results of
  the confirmatory test to the CTC.