OBJECTIVE

To ascertain estimates of adult patients, recorded as lost to follow-up (LTFU) within antiretroviral treatment (ART) programmes, who have self-transferred care, died or truly stopped ART in low- and middle-income countries.

METHODS

PubMed, EMBASE, Web of Science, Science Direct, LILACS, IndMed and AIM databases (2003-2013) and IAS/AIDS conference abstracts (2011-2013) were searched for tracing studies reporting the proportion of traced patients found to have self-transferred, died or stopped ART. These estimates were then combined using random-effects meta-analysis. Risk of bias was assessed through subgroup and sensitivity analyses.

RESULTS

Twenty eight studies were eligible for inclusion, reporting true outcomes for 10,806 traced patients attending approximately 258 ART facilities. None were from outside sub-Saharan Africa. Twenty three studies reported 4.5-54.4% traced LTFU patients self-transferring care, providing a pooled estimate of 18.6% (95% CI 15.8-22.0%). A significant positive association was found between rates of self-transfer and LTFU in the ART cohort. The pooled estimates for unreported deaths were 38.8% (95% CI 30.8-46.8%; 27 studies) and 28.6% (95% CI 21.9-36.0%; 20 studies) for patients stopping ART. A significant decrease in unreported deaths from 50.0% (95% CI 41.5-58.4%) to 30.0% (95% CI 21.1-38.9%) was found comparing study periods before and after 31 December 2007.

CONCLUSIONS

Substantial unaccounted for transfers and deaths amongst patients LTFU confirms that retention and mortality is underestimated where the true outcomes of LTFU patients are not ascertained.