Understanding early disengagement and treatment interruptions – the Retain6 study

Authors: Sydney Rosen, Mhairi Maskew, Linda Sande, Aniset Kamanga and the Retain6 Project Team

Photo: Isabelle Corthier/MSF

The early treatment period, commonly defined as the first six months after starting or restarting ART, is marked by high rates of disengagement from HIV care.

Boston University’s Department of Global Health, the Health Economics and Epidemiology Research Office (HE2RO) in South Africa and the Clinton Health Access Initiative (CHAI) in Zambia launched the three-year Retain6 project in 2021 to learn more about patterns of and reasons for early disengagement and treatment interruptions and to test new models of service delivery that can improve early outcomes.

The following are some key findings, which were presented at Retain6 workshops in South Africa and Zambia in November 2023:

  • Most clients were not ART-naïve: In both countries, most clients who present for ART initiation have treatment experience. Knowledge of this is important to improve care and manage the national programme.
  • The treatment cascade is cyclical: Treatment interruptions and a “cyclical” pattern of coming in and out of care are common, especially in the early treatment period.
  • There is a need for increased and/or improved counselling and information:
    • Nearly half of those surveyed and participating in focus group discussions would have liked more counselling and/or information than they received in the early treatment period.
    • Universal treatment access has resulted in many clients starting ART without ever having been sick due to HIV, and younger clients have no memory of the pre-treatment era. Attitudes toward adherence may be more casual as a result (Zambia).
  • Stigma impacts access: Stigma remains a huge barrier to engagement in care, especially in the early treatment period.
  • Flexible service delivery is important: Greater flexibility in packaging existing services and resources may offer a low-cost strategy to improve treatment goals (South Africa).
  • Good provider-client relationships are crucial: In particular, the first clinical encounter between the provider and client remains critical to establishing a client’s willingness to engage in care consistently.