Patterns of retention in care during clients’ first 12 months after HIV treatment initiation in South Africa: a retrospective cohort analysis using routinely collected data

Background Retention in HIV care during the early treatment period is one of the most serious challenges facing HIV programs, but the timing and patterns of early disengagement from care remain poorly understood. We describe patterns of engagement in HIV care during the first and second 6-month periods after initiation. Methods We analysed retrospective datasets of routinely collected EMR data from ≥18-year-old clients who initiated ART at public sector clinics in South Africa after 01/01/2018 and had ≥14 months potential follow up. Using scheduled visit dates, we classified observed visits into “as planned” or “late” and characterized engagement in care as continuous (all scheduled visits attended ≤28 days late), cyclical (at least one visit >28 days late with a return visit observed) or disengaged (visit not attended and no return visit to the same facility observed). Results 33,821 client records were included (65% female, median age 33). By six months after ART initiation, 57% had remained continuously in care, 14% had engaged cyclically, 11% had transferred to another facility, 1% had died and 16% had disengaged from care at the initiating facility. Among disengagers in the first 6 months, 58% did not return after their initiation visit, 10% disengaged within the first three months, and the remaining 32% disengaged between 3-6 months. By 12 months after initiation, the overall proportion disengaged was 23%, and only 38% of the cohort had maintained continuous engagement for the full 12 -month period.. Patterns of engagement that were established during the first 6 months on ART demonstrated little change in months 7-12, with participants who were cyclically engaged in months 0-6 were nearly twice as likely to disengage in months 7-12 as continuous engagers in months 0-6 (relative risk 1.8, 95% CI: 1.70-1.99). Conclusions As recently as 2018, fewer than 60% and 45% of clients starting ART in South Africa were continuously engaged in care (no interruptions >28 days) at 6 and 12 months, respectively, at their initiating facilities. The needs of continuous and cyclical engagers and disengagers during the first 6 months after initiation may differ and require different interventions or models of care. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement Funding for this study was provided by the Bill & Melinda Gates Foundation under INV-031690 to Boston University. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Analysis of the de-identified datasets was approved by the University of the Witwatersrand Human Research Ethics Committee (Medical) under protocol M1902105 and by the Boston University Medical Center IRB under protocol H-38815 for the use of data with a waiver of consent. All data were de-identified prior to sharing with the study teams and no direct participant contact occurred. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data used in this study, which were abstracted from South Africa's electronic medical record system, TIER.Net, are owned by the National Department of Health and cannot be shared by the authors. Instructions for requesting data directly from the owner of the dataset can be found at [https://www.tbhivinfosys.org.za/wp-content/uploads/2022/01/Acess-to-Data-Sourced-from-the-TB\_HIV-Dataset-Guidance\_Final_signed.pdf][1]. [https://www.tbhivinfosys.org.za/wp-content/uploads/2022/01/Acess-to-Data-Sourced-from-the-TB\_HIV-Dataset-Guidance\_Final_signed.pdf][1] [1]: https://www.tbhivinfosys.org.za/wp-content/uploads/2022/01/Acess-to-Data-Sourced-from-the-TB_HIV-Dataset-Guidance_Final_signed.pdf