Challenges to identifying HIV-exposed infants, scaling up early infant diagnosis & linkage to prophylaxis, treatment and care programs Charles Kiyaga National.

Challenges to identifying HIV-exposed infants, scaling up early infant diagnosis & linkage to prophylaxis, treatment and care programs

Charles KiyagaNational EID Coordinator

Ministry of Health – [email protected]

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Following infants throughout entire EID process highlights key challenges in the entire EID Cascade

Identify and test exposed infant

Provide results & guide through test algorithm

Enroll positives in ART

Clinic

Retain alive in care/

treatment

1 2 3 4

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Different factors contribute to the Challenges in the EID process

Identify and test exposed infant

Provide results & guide through test

algorithm

Enroll positives in ART Clinic

Retain alive in care/

treatment• HCWs not sensitized to identify exposed infants

• Weak system for referral for DBS testing from on-site capture points

•No system for referral of PMTCT mothers to EID testing

• No system for capturing babies outside the HF

• Ineffective clinic flow & limited HR capacity

•Poor documentation and tracking systems

• Inconsistent counseling

•Limited integration of infant care into visits

• Long result turnaround times

• Poor system for referral of positive infants to ART clinics

•Limited integration between EID and ART Clinic teams

• Limited integration of infant care into testing process, leading to attrition

• Not initiating infants on ART when eligible

• Not identifying exposed infants before 3 months of age

Pote

ntial

cau

ses

of lo

ss

1 2 3 4

Given the rapid disease progression of HIV in infants, basic care and prophylaxis must be provided to infants throughout the EID process

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Infant Retention Continuum at 3 Regional Referral HospitalsSept 2007 – Feb 2009

EID review revealed that only 40% (98 of 244) of tested infants were eventually enrolled into care & treatment

39% of positive infants never received results 35% of positive

infants receiving results were never enrolled into care 42% of positive

infants in care & treatment were lost

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Drivers of Loss: Not capturing exposed infants

• Limited sensitization and awareness among HCWs

Healthcare workers not proactively identifying and referring exposed infants

• Lack of a formal referral system for EID testing from ‘entry points’ within health facility and off facility Exposed infants referred from different wards/clinics

for on-site DBS testing are not reaching the testing point Lack of referral or sample collection from the

community (immunization outreaches)

• Lack of referral system for exposed infants identified before or at birth

HIV+ pregnant women identified at ANC or maternity not bringing infants for DBS testing at 6 weeks

Identify & test exposed infant

Provide results & guide through test

algorithm

Enroll positives in ART Clinic

Retain alive in care/

treatment

3 421

Exposed infants never tested

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Strong, formalized PMTCT-EID linkages are needed to capture exposed infants before birth

Referral from PMTCT: Data from one hospital revealed that over 80% of HIV+ pregnant women never brought their babies back for testing and care after delivery

Linkage between PMTCT and EIDHospital, Jan – Dec 2008

Less than 20% of PMTCT mothers could be linked

to tested infants

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Drivers of Loss: Exposed infants not receiving results and completing testing algorithm

Identify & test exposed infant

Provide results & guide through test

algorithm

Enroll positives in ART Clinic

Retain alive in care/ treatment

1 3 4

• Sub-optimal clinic flow with multiple follow-up points Caregivers unclear where to return for results EID services with insufficient space and staffing

• Poor documentation and tracking systems Key information not kept in single comprehensive

longitudinal register— one must sift through many registers and charts

Lack of an appointment system to trigger follow-up

• Lack of consistent counseling and care provision Weak counseling on importance of test results, testing

algorithm, and the need for regular care Lack of care provision undermines importance of infants

returning regularly

• Long sample and result turnaround times

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39% of positive infants never receive results

OPD

JCRC Lab (Kampala)

Laboratory in OPD

ART Clinic

Courier to Wakiso Town

DBS

Sam

ples

Test Results

Posta Uganda

Immunization

ANC/PMTCT

Lower Level HCs

Immunization Outreaches

Legend Patients Results Samples

Clinic Systems: At Namayumba Health Center IV there was no centralized follow-up and care point

DBS SamplesDBS Samples

Posta Uganda

Courier from Wakiso Town

Impact of Centralizing EID Services only in the Lab

Caregivers of infants tested at ANC or ART Clinic do not know where to return for results and follow-up

Caregivers of infants tested at the lab in OPD receive no counseling or sensitization during sample collection

With all results given in the lab, there is no post-result counseling or care unless caregiver takes initiative to seek it out No set appt for 2nd PCR No formal referral to ART Clinic

if positive

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4 DaysAverage

(n= 333)

4 DaysAverage

(n= 203)

31 DaysAverage

(n= 194)

Sample Drawn

Dispatched to JCRC

Result arrives at Facility

Caregiver Receives Results

Arrives at JCRC

Average Time between DBS Collection and Caregiver Receiving Results Jinja RRH, Jan 2008 – Feb 2009

On average, caregivers had to wait 69 days to received DBS results

Turnaround Time: Long sample and result turnaround time had an adverse effect on whether caregivers receive results or not

30 DaysAverage

(n= 222)

Sample Tested

Result sent from JCRC

Turnaround Time & Retention: Fewer caregivers receive their results with longer turnaround times, but even in best case percent returning remained low

10-30 Days 31-50 Days 51-70 Days Over 70 Days0%

10%

20%

30%

40%

50%

60%

70%

59%

52%

36% 38%

Percent of Caregivers Receiving Results vs. Turnaround Time

Jinja RRH, Jan 2008 - Feb 2009

# Days between Sample Collection and Result Arrival at Site

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Drivers of Loss: HIV-positive infants not being enrolled into care and treatment

Identify & test exposed infant

Provide results & guide through test

algorithm

Enroll positives in ART Clinic

Retain alive in care/ treatment

1 3 42

• No formal referral system to ART clinics Infants referred from EID testing point to ART Clinic

are only told to go verbally with no tracking by either EID or ART units

• Limited integration or communication between EID testing and ART clinic No meetings between EID & ART teams to follow-up

referred infants

35% of pos infants receiving results were never enrolled

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Drivers of Loss: HIV-positive infants not initiated & retained in care after enrollment at ART Clinic

Identify & test exposed infant

Provide results & guide through test

algorithm

Enroll positives in ART Clinic

Retain alive in care/ treatment

1 3 42

• Not immediately initiating eligible infants on ART Only 45% of eligible HIV+ infants initiated on ART! Some HCWs not aware of current EIT Policy, and

others are reluctant to initiate infants immediately —failure to initiate ART decreases odds of survival • Late identification and testing of exposed

infants 40% of infants tested over 6 months of age, so health

likely to have already deteriorated

• Failure to provide specialized care for exposed infants before results return Many exposed infants receive specialized care only

once confirmed positive

42% of positive infants in care & treatment were lost

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Age and Attrition: 59% of infants were captured at greater than 3 months of age

Capture and diagnosis of infants at a late age can lead to attrition after initiation on treatment due to rapid disease progression

0-3 Months (41%)

16-18 Months (7%)

13-15 Months (11%)

10-12 Months (10%)

7-9 Months (13%)

4-6 Months (18%)

Health Facility Average Age at 1st DBS

Masaka RRH 6.3 months

Jinja RRH 7.6 months

Lira RRH 6.2 months

Overall Average 6.8 months

Having seen the above challenges we undertook to strengthen our EID system, with a package of 6 complementary interventions

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1. Establish “EID Care Point” within either MCH or ART clinic where all exposed infant care/follow-up is centralized

2.Integrate routine care into EID process & establish regular visit schedule

3. Strengthen & standardize counseling for caregivers of exposed infants

4. Improve tracking tools to centralize data & follow infants longitudinally

5. Establish referral system for DBS testing and follow-up at EID care point

6. Establish referral system for care/treatment at the ART clinic

This was piloted in 21 Health facilities of all levels in 8 districts

Assessment of the pilot at several facilities showed high impact across all key areas of EID:

•DBS testing volumes increased by 40%

•Average age at testing reduced by 50%

Testing

•CTX initiation increased every month after implementation, from 80% to 99%

Cotrim

•Percent of exposed infants receiving results increased from 50% to 70%

Retention

•Percent of HIV+ infants linked to the ART clinic increased from 50% to 97%

ART Linkage

Integrated EID into immunization outreaches

Consolidated 8 testing labs into 1 National Lab

Set up new national hubbed transport network

EID program has also implemented other high-impact innovations:Increases access and identification

Reduces sample-result TAT

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Acknowledgements

CDC Uganda for their financial and program support. They also supported my coming here

CHAI for their technical and logistical support

JCRC for doing most of the lab testing

PEPFAR for their financial support

UNICEF for their financial support

The strengthening model has shown the value and feasibility of changing EID from merely a testing

service to a longitudinal comprehensive care package for all HIV-exposed infants

Challenges exist , but “EID system strengthening” model has demonstrated high impact & shown feasibility of implementation