The global HIV response has grown far beyond early expectations but continues to face formidable and evolving challenges at policy, organisational, individual healthcare worker (HCW), and patient levels. As HIV programs transition to country ownership to ensure sustainability, gaps in capacity and resource commitments emerge. Meanwhile, the volume of individuals seeking chronic HIV care, especially in countries with the highest burdens of disease, has posed a challenge to the health delivery system. In Zambia, for instance, the current HIV prevalence rate is estimated at 12.9%  with about 1.2 million persons living with HIV, many now entering a phase of long-term follow-up. However, losses-to-follow-up from HIV Care and Treatment programs exceed 25-50% in many African settings, therefore leading to an under-estimation of patient mortality and retention in care. This gap represents a form of selection bias in epidemiologic studies which seek to understand the effects of predictors on patient outcomes. An understanding of the true patient outcomes allows for a better assessment of public health systems and their program efficiencies.
The CIDRZ BetterInfo Study Toolkit was designed for decision-makers and implementers of HIV programs who would like to apply the same sampling-based approach to track patients lost from HIV Care services. Herein, we identify our measurement strategy, provide the basic tools for our sampling-based approach, detail the methods and minimum package to track patients considered lost from care, and discuss our study results.
The measurement strategy employed by the BetterInfo study has the potential to improve evidence-based global delivery of care and treatment for patients with HIV infection. With the more accurate revised information obtained by tracking patients considered lost from the HIV care program, a better estimation of the true mortality and retention rates in this population was obtained. This knowledge can help to guide in-depth assessment to understand care delivery in and across facilities and to identify best practices to improve patient care. Therefore, understanding levels of true disengagement and addressing the facilitators and barriers to HIV care which are unique to clinics is needed to improve ART patient retention.