monitoring and evaluation

Loss to Follow-Up Tool: Tracking and Tracing HIV Patients


Loss at each step of the HIV diagnostic and treatment cascade has been well documented. Many newly-identified people living with HIV (PLHIV) fail to link to or enroll in care and initiate treatment, and those on antiretroviral treatment (ART) often miss appointments and fail to return to care/treatment. Addressing poor linkage and retention is critical for achieving HIV/AIDS epidemic control. Successful tracking and tracing of PLHIV who have failed to initiate treatment or failed to return to care/treatment will allow targeted interventions to help return those patients back to treatment, document their treatment in another setting, or document their death or loss to follow up (LTFU).


Identifying and locating PLHIV who fail to link to care and initiate ART or who fail to be retained in care/on treatment are important interventions to ensure all PLHIV get on and remain on ART. This tool outlines procedures for tracking and tracing PLHIV who have failed to link to treatment or those who have missed appointments/are LTFU. Procedures for identifying, following non-linkers and those not in care/on treatment through phone and home contacts, and documenting outcomes are outlined. Individual level follow-up allows for targeted support to PLHIV needing to (re-)enter care and treatment. In addition, documentation of individual outcomes is necessary to obtain accurate numbers of patients who are actually not in care and on treatment and the outcomes of those who are LTFU including silent transfers to other clinics, death, those who are unable to be located, not traced, or returned to care/clinic. These outcomes are required for the TX_ML MER indicator. Best practice procedures for phone and home contacts are provided, as well as sample tools from partners for recording tracking and tracing activities.

Tracking and Tracing Standard Operating Procedure (SOP)

Example Tracking Record from Zimbabwe

Tracking and Tracing Form (Sample B)

Example SMS Message (Sample C)

Improved Monitoring of the Key Population Cascade: The Need for Use of Customized Indicators

What is the problem?

Specialized non-governmental organizations (NGOs) frequently provide testing and prevention services for key populations (KPs). However, HIV care and treatment are typically only accessible via government facilities. NGOs, then, act as the mechanism to link KPs to HIV testing and treatment services. Existing monitoring and evaluation (M&E) frameworks do not enable NGOs to measure and report these linkage services. As a result, it is difficult to track progress toward epidemic control among key populations.

What is the tool?

LINKAGES, which is the largest global project dedicated to key populations, created by PEPFAR and the U.S. Agency for International Development (USAID), introduced a set of standardized, custom indicators for the KP clinical cascade in 2017. These new indicators were created with the intention of improving monitoring of the non-clinical activities conducted by NGOs in their engagement with KPs.

The Peer Navigator Enrollment Frontline Tool  (doc) is used at the point of enrollment in services to track client characteristics and history, services rendered, and health outcomes (including reporting on the customized indicators described in the below Customized Indicator Reference Sheet). 

Selection of New Indicators: These indicators were developed because MER indicators often do not represent the full package of services provided by KP programs. The list was generated by key staff from PEPFAR, USAID, and LINKAGES based on common gaps described in MER guidance and input was also requested from selected country teams and civil society partners. These new indicators are:





See the Customized Indicator Reference Sheet (pdf).

Integrating New Indicators into Reporting Process: Minimal effort is required for the data collection required by these indicators. Dara are collected at the NGO/community level as the interventions described are conducted by non-clinical staff. One required input for the implementation of these indicators is the update of data collection forms to include the indicators for the NGOs.

Once proven useful for measuring NGO activities with KPs, larger-scale rollout can occur and these indicators can be integrated into the national reporting system. Minor edits and additions to existing strategic information tools will be needed.

Expected Outcomes: The expected outcomes of using these new indicators include: capturing information about KPs missed by MER indicators, closer monitoring of NGO activities and achievements, and identifying gaps in the services offered to KPs. The use of KP-specific custom indicators will more accurately track the number of KPs living with HIV (KPLHIV) that PEPFAR supports, as well.

Graphs demonstrating the gaps in existing data coverage, which Customized Indicators aim to fill.