Outcomes of retained and disengaged pregnant women living with HIV in Uganda

Abstract

Introduction Loss-to-follow-up among women living with HIV (WLWHIV) may lead to unfavorable outcomes for both mother and exposed infant. This study traced WLWHIV disengaged from care and their infants and compared their outcomes with those retained in care. Methods The study included WLWHIV who initiated ART during pregnancy at six public clinics in Uganda. A woman was defined as disengaged (DW) if she had not attended her 6-week post-partum visit by 10 weeks after her estimated date of delivery. DW were matched with retained women (RW) by age and duration on ART. Nurse counselors traced all selected DW via telephone and community visits to assess vital status, infant HIV sero-status and maternal HIV viral load through blood draws. Results Between July 2017 and July 2018, 734 women (359 DW and 375 RW) were identified for the study. Tracing was attempted on 349 DW and 160 (44.6%) were successfully located and enrolled in the study. They were matched with 162 RW. Among DW, 52 (32.5%) transferred to another health facility. Very few DW, 39.0% were HIV virally suppressed (<1000 copies/ml) compared to RW 89.5%, P<0.001). Among 138 babies born to DW, 4.3% tested positive for HIV compared to 1.4% among babies born to RW (P = 0.163). Conclusion Pregnant and breastfeeding WLWHIV who disengage from care are difficult to find in urban environments. Many have detectable viral loads, leading to the potential for an increased risk of MTCT. Efforts to reduce disengagement from care are critical for the successful elimination of MTCT in resource-limited settings.

Reasons for disengagement from antiretroviral care in the era of “Treat All” in low‐ or middle‐income countries: a systematic review

“…Among the 21 studies, three were conference abstracts [ 12 , 13 , 14 ] and the remainder were full papers (Table 1 ). Six studies were about general adult populations [ 12 , 14 , 15 , 16 , 17 , 18 ], nine were about women who started ART while pregnant [ 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 ] and six were about various smaller populations (people who use drugs [ 13 ], indigenous people in an isolated area [ 28 ], adolescents [ 29 ], gay/bisexual/other men who have sex with men [ 30 ], men only [ 31 ] and women only [ 32 ]). No studies included children.…”

“…The number of included disengaged participants per study ranged from 6 to 5008 people. Nine studies had quantitative surveys [ 12 , 13 , 15 , 16 , 19 , 20 , 21 , 32 , 33 ] (including studies where this was done alongside in‐depth interviews) and 14 studies included at least some information about how frequently various reasons were reported by participants [ 12 , 13 , 14 , 15 , 16 , 17 , 19 , 20 , 21 , 22 , 23 , 24 , 31 , 32 ].…”

COVID-19 may exacerbate the clinical, structural and psychological barriers to retention in care among women living with HIV in rural and peri-urban settings in Uganda

“…This was a qualitative study, nested in a larger prospective cohort (community tracing) study (LOCATOR) of women who initiated ART for Life during pregnancy as part of the WHO recommended option B+ strategy for prevention of mother to child transmission of HIV [ 19 ]. Data were collected from 17 women using in-depth individual interviews, in June and July 2020.…”

“…A research program was undertaken to locate HIV positive women initiated in HIV care under option B+ and later disengaged from care, to assess their health and wellbeing and that of their infants (LOCATOR STUDY) [ 19 ]. Women were considered lost to follow-up if they failed to return for the last three clinic visits, equivalent to 90 days, and had not been identified as having died or transferred out.…”

Antiretroviral therapy retention, adherence, and clinical outcomes among postpartum women with HIV in Nigeria

“…However, ART adherence declines dramatically in mothers with HIV up to 18 months postpartum [10], and new mothers have increased risks of becoming lost to follow-up (LTFU) in HIV care and having viremia, increasing risk of transmission to infants [11,12]. Suboptimal adherence or discontinuation of ART endangers maternal health, even increasing the odds of death [13,14]; with mothers often the primary familial caregivers, poor maternal health, in turn, endangers their children’s health.…”