High risk of loss to follow-up among South African children on ART during transfer, a retrospective cohort analysis with community tracing

Abstract

Introduction: Decentralization of HIV care for children has been recommended to improve paediatric outcomes by making antiretroviral treatment (ART) more accessible. We documented outcomes of children transferred after initiating ART at a large tertiary hospital in the Eastern Cape of South Africa.

Methods: Electronic medical records for all children 0-15 years initiating ART at Dora Nginza Hospital (DNH) in Port Elizabeth, South Africa January 2004 to September 2015 were examined. Records for children transferred to primary and community clinics were searched at 16 health facilities to identify children with successful (at least one recorded visit) and unsuccessful transfer (no visits). We identified all children lost to follow-up (LTF) after ART initiation: those LTF at DNH (no visit >6 months), children with unsuccessful transfer, and children LTF after successful transfer (no visit >6 months). Community tracing was conducted to locate caregivers of children LTF and electronic laboratory data were searched to measure reengagement in care, including silent transfers.

Results: 1,582 children initiated ART at median age of 4 years [interquartile range (IQR): 1-8] and median CD4+ of 278 cells/mm³ [IQR: 119-526]. A total of 901 (57.0%) children were transferred, 644 (71.5%) to study facilities; 433 (67.2%) children had successful transfer and 211 (32.8%) had unsuccessful transfer. In total, 399 children were LTF: 105 (26.3%) from DNH, 211 (52.9%) through unsuccessful transfer and 83 (20.8%) following successful transfer. Community tracing was conducted for 120 (30.1%) of 399 children LTF and 66 (55.0%) caregivers were located and interviewed. Four children had died. Among 62 children still alive, 8 (12.9%) were reported to not be in care or taking ART and 18 (29.0%) were also not taking ART. Overall, 65 (16.3%) of 399 children LTF had a laboratory result within 18 months of their last visit indicating silent transfer and 112 (28.1%) had lab results from 2015 to 2016 indicating current care.

Conclusion: We found that only two-thirds of children on ART transferred to primary and community health clinics had successful transfer. These findings suggest that transfer is a particularly vulnerable step in the paediatric HIV care cascade.

Keywords: ART; decentralization; loss to follow-up; paediatric HIV; referral; retention.

Figure 1.

Outcomes of children started on ART at Dora Nginza Hospital in Port Elizabeth, South Africa January 2004–September 2015 (N = 1,582). *Children <15 years LTF in last 5 years with contact information. **Among 62 children still alive.

Figure 2.

Identifying silent transfer and current engagement in care using laboratory data and community tracing information for 399 children LTF after ART initiation at Dora Nginza Hospital, Port Elizabeth, South Africa. * some children had both lab data and were reported to be in care; the totals for “currently in care” (lower dark grey boxes) are children who had either labs or were reported to be in care. For example, among children LTF at DNH, there were 2 children who had both lab data and were located and reported to be in care, therefore 29/105 or 27.6% overall within this group are reported as “currently in care” (rather than 31).