Retention outcomes and drivers of loss among HIV-exposed and infected infants in Uganda: a retrospective cohort study

Abstract

Background: Uganda's HIV Early Infant Diagnosis (EID) program rapidly scaled up testing of HIV-exposed infants (HEI) in its early years. However, little was known about retention outcomes of HEI after testing. Provision of transport refunds to HEI caregivers was piloted at 3 hospitals to improve retention. This study was conducted to quantify retention outcomes of tested HEI, identify factors driving loss-to-follow-up, and assess the effect of transport refunds on HEI retention.

Methods: This mixed-methods study included 7 health facilities- retrospective cohort review at 3 hospitals and qualitative assessment at all facilities. The cohort comprised all HEI tested from September-2007 to February-2009. Retention data was collected manually at each hospital. Qualitative methods included health worker interviews and structured clinic observation. Qualitative data was synthesized, analyzed and triangulated to identify factors driving HEI loss-to-follow-up.

Results: The cohort included 1268 HEI, with 244 testing HIV-positive. Only 57% (718/1268) of tested HEI received results. The transport refund pilot increased the percent of HEI caregivers receiving test results from 54% (n = 763) to 58% (n = 505) (p = .08). HEI were tested at late ages (Mean = 7.0 months, n = 1268). Many HEI weren't tested at all: at 1 hospital, only 18% (67/367) of HIV+ pregnant women brought their HEI for testing after birth. Among HIV+ infants, only 40% (98/244) received results and enrolled at an ART Clinic. Of enrolled HIV+ infants, only 43% (57/98) were still active in chronic care. 36% (27/75) of eligible HIV+ infants started ART. Our analysis identified 6 categories of factors driving HEI loss-to-follow-up: fragmentation of EID services across several clinics, with most poorly equipped for HEI care/follow-up; poor referral mechanisms and data management systems; inconsistent clinical care; substandard counseling; poor health worker knowledge of EID; long sample-result turnaround times.

Discussion: The poor outcomes for HEI and HIV+ infants have highlighted an urgent need to improve retention and linkage to care. To address the identified gaps, Uganda's Ministry of Health and the Clinton Health Access Initiative developed a new implementation model, shifting EID from a lab-based diagnostic service to an integrated clinic-based chronic care model. This model was piloted at 21 facilities. An evaluation is needed.

Keywords: Early infant diagnosis; HIV; HIV-exposed infant; Linkage to care; Pediatric HIV; Prevention of mother-to-child transmission; Retention; Testing; Uganda.

Fig. 1

EID Continuum of Care in Uganda. Diagram showing steps in the HIV infant diagnosis continuum: HEI encounter the health facility at many ‘entry point’ clinics. Health workers (HWs) at entry points must proactively screen for HIV exposure and link the identified HEI to the facility’s testing point for DBS sample collection. The DBS sample must be dispatched to the reference lab, tested by DNA PCR, and result returned to the health facility by the time the HEI caregiver returns for their next appointment. If the PCR result is negative, the HEI must receive a 2nd confirmatory PCR test 6 weeks after cessation of breastfeeding. If the infant tests HIV+, the infant must be immediately enrolled at the HIV/ART Clinic and initiated on ART. ANC = Antenatal Clinic; PNC=Postnatal Clinic; ART = Antiretroviral Therapy; OPD = Outpatient Department; DBS = Dried Blood Spot; PCR = Polymerase Chain Reaction

Fig. 2

Effect of Transport Refund Pilot on Retention of HIV-Exposed Infants. Graph showing the percent of caregivers receiving results, among those who received the transport reimbursement intervention versus those who did not receive it. PCR = Polymerase Chain Reaction

Fig. 3

Retention Outcomes for Infants Testing HIV-Positive. Graph showing the outcomes for HIV-exposed infants testing HIV-positive by DNA PCR. The red bars represent the number of infants lost-to-follow up at each step in the EID process. PCR = Polymerase Chain Reaction

Fig. 4

Fragmented EID Clinic System at One Health Facility. Diagram depicting the flow of caregivers, samples, and results at one of the reviewed health facilities. ANC = Antenatal Clinic, DBS = Dried Blood Spot, OPD = Outpatient Department, HEI=HIV-Exposed Infant

Fig. 5

Relationship between "location of HIV-exposed infant follow-up" and "percent of caregivers receiving PCR results". Graph showing the percent of caregivers receiving results at 1 hospital, by testing/follow-up point

Fig. 6

Sample-result turnaround time at one hospital. Diagram shows the average number of days it took for each step in the sample referral process. The n values differ for each point in the sample referral process because health workers inconsistently documented dates for ‘sample draw’, ‘dispatched to lab’ and ‘arrives at lab’ in facility and lab data registers. The n values for ‘result arrives at facility’ and ‘caregiver receives results’ are different because not every tested infant received PCR results

Fig. 7

Graph shows the percent of caregivers receiving PCR results as a function of sample-result turnaround time at 2 hospitals. The caregiver was due to return for test results 1 month after the DBS test, so the desired turnaround time for the EID program was in the range of ‘10–30 days’

Fig. 8

Diagram depicting areas of the EID continuum of care where the national program focused in its initial years (testing and caregiver retrieval of results), and highlighting priority areas for improvement (linkage of HEI from entry points to testing, and linkage of HIV+ infants from result retrieval point to HIV clinic). ANC = Antenatal Clinic, OPD = Outpatient Department

Fig. 9

New “EID Care Point” Model. Diagram depicting the new proposed model for implementation of EID services at health facilities in Uganda. DBS = Dried Blood Spot, PCR = Polymerase Chain Reaction, EID = Early Infant Diagnosis