Pan American Health Organization · 2022
Technical guidance for HIV programme managers on accurate enumeration of ART recipients through systematic data cleaning and patient tracking.
- Issuer
- Pan American Health Organization
- Edition
- 2022
- Audience
- HIV programme managers, health information system staff, clinicians providing HIV care
- Evidence
- Adapted recommendations from WHO guidelines
- Reviewed
- 18 Oct 2026 · GMJ
What this guideline says
GMJ summary
This technical note adapts WHO’s 2020 Consolidated HIV Strategic Information Guidelines for the Latin American and Caribbean context, providing operational guidance on accurately determining the number of people receiving antiretroviral therapy (ART). It addresses common problems of both underestimation (when patients in correctional institutions, private services, or social security are not counted) and overestimation (when deceased, migrated, transferred, or lost-to-follow-up patients remain in registries).
The document establishes that people receiving ART should be calculated as: those who started ART at the facility plus patients transferred in, minus patients transferred out (including migrants), deceased, lost to follow-up (defined as no contact 28 days after their last scheduled medication pick-up), or who stopped ART. Data cleaning through triangulation of health facility records, pharmacy and laboratory information, vital statistics, and migration databases should be conducted continuously or at minimum every six months.
The guidance emphasises that whilst the 28-day threshold defines loss to follow-up for monitoring purposes, programme efforts to reconnect patients should begin immediately upon missed appointments, as relinking is most successful in the initial months. Once relinked, patients should resume treatment immediately without delays for administrative procedures or laboratory tests, with treatment response assessed after 8 weeks.
Key points
For clinicians — doses and thresholds as stated in the guideline
- Define loss to follow-up as no contact with the health facility 28 days after the last scheduled appointment to pick up medication (new threshold recommendation).
- Calculate people receiving ART as: those who started ART + patients transferred in − patients transferred out − deaths − lost to follow-up − those who stopped ART.
- Conduct data cleaning processes continuously and automatically; if not possible, perform at minimum every six months.
- Begin patient relinking efforts immediately when appointments are missed, before the 28-day loss-to-follow-up threshold is reached.
- When patients resume treatment after interruption, assess treatment response after 8 weeks to avoid premature shift to second- or third-line therapy.
- Use unique identifiers for each individual (ideally national identification codes) to enable comparison across different data sources and prevent duplication.
- Triangulate data from health facility records, pharmacy information, laboratory data, vital statistics (death records), and migration databases to clean registries.
- Avoid barriers to treatment re-initiation such as requiring administrative procedures or laboratory tests; people should resume their previous regimen immediately upon relinking.
Operational definitions and sources of information for calculating the number of people receiving antiretroviral therapy
Table extracted from the guideline
| Element | Operational Definition | Sources of Information and Remarks |
|---|---|---|
| People with HIV on ART (Indicator AV.1) | People who started ART, and who, according to their last pick-up date, are on ART at least until their next pick-up date plus 28 days. Includes people who were lost to follow-up but subsequently reconnected. | Health service registries. Can be supplemented with pharmacy and laboratory information, and for pregnant women, records on provision of infant formula and other supplies. |
| People who migrated or were transferred outside the analysed area | People who left the country or area of analysis. | Migration databases where available; patient records where people notify health professionals of planned migration. Generally hard to obtain. |
| Deaths | People with HIV previously on ART who are documented to have died from any cause. | Hospital records, health services records, and civil registry death records linked to vital statistics system. Civil registry consolidation takes time; information usually cleaned retroactively. |
| Lost to follow-up | People who have not had contact with the health facility 28 days after their last appointment to pick up their medication. New recommendation (other cut-off times may be chosen for greater sensitivity or specificity). | Patient registries with system to identify people no longer in follow-up. Before classifying as lost, implement local procedure including calling people to rule out incarceration, migration, or transfer to another service. |
| People who have temporarily stopped treatment | People who have stopped ART but continue to receive HIV care. Should be short-term situation; issues should be addressed to enable resumption as soon as possible. | Treatment records if this category is included. |
| Attrition (Indicator AV.2) | People reported on ART at end of last reporting period and/or newly initiating ART during current reporting period who were not on ART at end of reporting period. Includes migrants + deaths + lost to follow-up + stopped treatment. | Calculated from above elements. |
Source: Pan American Health Organization, Updated Recommendations for Determining the Number of People with HIV Receiving Antiretroviral Therapy, September 2021. Reproduced in summary form.
What changed in this edition
Versus the previous edition
- New definition of loss to follow-up as 28 days after last scheduled appointment (other cut-off times may be chosen for greater sensitivity or specificity).
- Recommendation to implement continuous and automatic data cleaning processes, or at minimum every six months if continuous cleaning is not possible.
- Adaptation of WHO 2020 Consolidated HIV Strategic Information Guidelines to Latin American and Caribbean context.
From the guideline
Verbatim
“People who have not had contact with the health facility 28 days after their last appointment to pick up their medication.”
Editor’s perspective
Why this matters for Georgia and the region
Prof. Giorgi Pkhakadze, MD, MPH, PhD
Editor-in-Chief, Georgian Medical Journal · Chair, Public Health Institute of Georgia · WHO consultant, health and migration
As Georgia continues strengthening its HIV programme within the UHC framework established in 2013, accurate enumeration of patients on antiretroviral therapy remains foundational for pharmaceutical procurement, resource allocation, and monitoring progress towards UNAIDS 95-95-95 targets. The 28-day loss-to-follow-up threshold and six-monthly data cleaning cycles provide practical standards for Georgian HIV centres, many of which are transitioning from paper-based to electronic patient monitoring systems. The recommendation I would emphasise to Georgian colleagues is the immediate relinking of patients without administrative barriers—simply resuming prior regimens and assessing response at 8 weeks—which aligns with our national emphasis on patient-centred care whilst avoiding unnecessary treatment complications. The implementation caveat for Georgia and neighbouring countries is that systematic vital statistics linkage and cross-border patient tracking remain underdeveloped; programmes should prioritise establishing data-sharing agreements between the AIDS Centre, civil registry, penitentiary services, and neighbouring national programmes to achieve the comprehensive surveillance this guidance envisions.
ORCID 0000-0001-7609-4515 · Perspective written for the GMJ Guidelines Library, 18 Oct 2026
Applicability
Georgia and the South Caucasus
For Georgia and Eastern European countries with concentrated HIV epidemics and fragmented health information systems, these recommendations address critical data quality challenges in ART programme monitoring. National programmes should assess coverage across all subsectors (state facilities, penitentiary services, private clinics) to avoid underestimation, whilst implementing systematic data cleaning to address overestimation from accumulated records of deceased, migrated, or lost patients. The emphasis on unique patient identifiers and six-monthly minimum data cleaning cycles provides achievable standards for programmes transitioning towards integrated electronic health records, whilst the 28-day loss-to-follow-up threshold offers a pragmatic balance between sensitivity and specificity for monitoring retention in care.
Questions this guideline answers
Quick answers
How is loss to follow-up defined for monitoring purposes?
People who have not had contact with the health facility 28 days after their last scheduled appointment to pick up their medication. However, programme efforts to reconnect patients should begin immediately when appointments are missed, as relinking is most successful in the initial months.
How often should data cleaning be conducted?
Data cleaning processes should be conducted continuously and automatically. If continuous cleaning is not possible, the process should be conducted at least every six months.
How should treatment be restarted for patients who return after abandoning ART?
Patients should resume treatment immediately without delays for administrative procedures or laboratory tests. They normally resume the treatment they were receiving before stopping. Treatment response can be assessed after 8 weeks to avoid premature shift to second- or third-line therapy.
What should be done before classifying someone as lost to follow-up?
A local procedure should be implemented including calling people to learn about their current situation—whether they are incarcerated, have migrated, or have transferred to another health service. A search should be conducted in other relevant databases to rule out other reasons for missed appointments.
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- Issuer
- Pan American Health Organization
- Type
- Procedures, manuals, guidelines
- Status
- Current
- Published
- 2022-01-01
- Scope
- Latin America and Caribbean (adapted from global WHO guidance)
- Audience
- HIV programme managers, health information system staff, clinicians providing HIV care
- Licence
- CC BY-NC-SA 3.0 IGO
- Evidence
- Adapted recommendations from WHO guidelines
- Record history
- Created 18 Oct 2026 · updated 18 Oct 2026 · next check Apr 2027
Pan American Health Organization. Updated recommendations for determining the number of people with HIV receiving antiretroviral therapy, September 2021. Washington, D.C.: PAHO; 2022. (PAHO/CDE/HT/21-0017).GMJ Guidelines Library records are original summaries written by the GMJ editorial team from the issuer’s published document and reviewed by a physician. They do not replace the full guideline. The document is the copyright of its issuer and is linked, not hosted. Spotted an error or a newer edition? Tell the Guidelines Desk.
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