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

Abstract

BackgroundUganda’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.MethodsThis 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.ResultsThe 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.DiscussionThe 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.

Measuring retention in care for HIV-positive pregnant women in Prevention of Mother-to-Child Transmission of HIV (PMTCT) option B+ programs: the Mozambique experience

“…For mother-infant pairs, being in care contributes to higher maternal ART adherence, better viral suppression, and ensures better postnatal care, including full ART prophylaxis and complete infant testing for HIV-exposed infants (HEI) [3,4]. In contrast, failure to be retained in care can lead to delayed or inconsistent use of antiretroviral medications, higher risk of maternal viral load failure, and increased morbidity and mortality for the mother and her child [5][6][7]. In addition, recent publications have reported an upward trend in acquired drug resistance to first-line ART across low-and middle-income countries, principally due to sub-optimal viral suppression [8][9][10].…”

Review article: direct‐acting antivirals for the treatment of HCV during pregnancy and lactation ‐ implications for maternal dosing, foetal exposure, and safety for mother and child

“…Unfortunately, there will be no treatment available prior to the age of 3 in the near future as this is not requested by the European Medicines Agency (EMA). Therefore, treatment of children with vertically acquired HCV may be complicated as loss to follow‐up in healthcare later in life is likely to be high, as is the case in some settings for HIV …”

Measuring retention in care for HIV-positive pregnant women in Prevention of Mother-to-Child Transmission of HIV (PMTCT) option B+ programs: the Mozambique experience

“…For mother-infant pairs, being in care contributes to higher maternal ART adherence, better viral suppression, and ensures better post-natal care, including full ART prophylaxis and complete infant testing for HIV-exposed infants (HEI) (4,5). In contrast, failure to be retained in care can lead to delayed or inconsistent use of antiretroviral medications, higher risk of maternal viral load failure, and increased morbidity and mortality for the mother and her child (6)(7)(8). In addition, recent publications have reported an upward trend in acquired drug resistance to first-line ART across low-and middle-income countries, principally due to sub-optimal viral suppression (9-11).…”